Re: The 3rd International Congress on Clubfoot

[Guest guest]

Great summary . It was a truly inspiring meeting. I have a

few points to add. Dr. Duhaime, in his closing remarks clearly

stated that one of the striking conclusions arising from the

research and discussion presented was that non-surgical means

(Ponseti and the Physiotherapy methods) were superior to surgery and

should be attempted in preference to surgery. The point was also

made by several well-respected surgeons that the Ponseti method must

be learned and performed properly and that those seeking to use it

should receive proper instruction and ensure that they are truly

following the correct protocol. The point was also made that the

surgeon herself should do the manipulations and casting and not

delegate this to a technician or resident. This is very important,

although (as an educator) I also know that I will teach residents to

do the technique and sometimes in my practice they will have their

hands on the cast, as they do in the OR in every academic center in

the world - however there is a difference between teaching someone

else and supervising them and leaving them alone to do it, while

unskilled (I don't go for a coffee when a resident is being allowed

to do some part of one of my operations in the OR and clubfoot

casting is just as important). (I would also like to add in that

there is no reason why a skilled plaster technician like Beth Myers,

say, couldn't do the treatment. However it is the rare center that

will sponsor and support their technicians to obtain appropriate

training.)

So, for all of you who have new diagnoses of CF in your families and

are being told that this is an unproven method, this conference lays

a LOT of official and scientific support to properly executed

nonsurgical manipulation/casting and/or physio. More research

emphasizing functional outcomes is needed, but this will take

decades to be truly complete. Use this information to challenge

your physicians and insurance companies if they are still swimming

in the surgical paradigm. Sometimes surgery is necessary, but only

when other avenues have truly been exhausted and when it occurs it

should be as minimal as possible. If you run into someone with

the " my time is too valuable " attitude that described,

consider voting with your feet.

Finally, there is still a lot of work to be done to get the message

out. Remember that you had to be pretty devoted to the topic to

travel (internationally in many cases) to something called " the 3rd

international clubfoot symposium " . There will remain lots of

pediatric orthopods and certainly general orthopods ignorant of the

importance of this method. We, who are aware of this information

and are fluent with the method and the research, have a

responsibility to spread the word.

son

[Guest guest]

Great summary . It was a truly inspiring meeting. I have a

few points to add. Dr. Duhaime, in his closing remarks clearly

stated that one of the striking conclusions arising from the

research and discussion presented was that non-surgical means

(Ponseti and the Physiotherapy methods) were superior to surgery and

should be attempted in preference to surgery. The point was also

made by several well-respected surgeons that the Ponseti method must

be learned and performed properly and that those seeking to use it

should receive proper instruction and ensure that they are truly

following the correct protocol. The point was also made that the

surgeon herself should do the manipulations and casting and not

delegate this to a technician or resident. This is very important,

although (as an educator) I also know that I will teach residents to

do the technique and sometimes in my practice they will have their

hands on the cast, as they do in the OR in every academic center in

the world - however there is a difference between teaching someone

else and supervising them and leaving them alone to do it, while

unskilled (I don't go for a coffee when a resident is being allowed

to do some part of one of my operations in the OR and clubfoot

casting is just as important). (I would also like to add in that

there is no reason why a skilled plaster technician like Beth Myers,

say, couldn't do the treatment. However it is the rare center that

will sponsor and support their technicians to obtain appropriate

training.)

So, for all of you who have new diagnoses of CF in your families and

are being told that this is an unproven method, this conference lays

a LOT of official and scientific support to properly executed

nonsurgical manipulation/casting and/or physio. More research

emphasizing functional outcomes is needed, but this will take

decades to be truly complete. Use this information to challenge

your physicians and insurance companies if they are still swimming

in the surgical paradigm. Sometimes surgery is necessary, but only

when other avenues have truly been exhausted and when it occurs it

should be as minimal as possible. If you run into someone with

the " my time is too valuable " attitude that described,

consider voting with your feet.

Finally, there is still a lot of work to be done to get the message

out. Remember that you had to be pretty devoted to the topic to

travel (internationally in many cases) to something called " the 3rd

international clubfoot symposium " . There will remain lots of

pediatric orthopods and certainly general orthopods ignorant of the

importance of this method. We, who are aware of this information

and are fluent with the method and the research, have a

responsibility to spread the word.

son

[Guest guest]

Great summary . It was a truly inspiring meeting. I have a

few points to add. Dr. Duhaime, in his closing remarks clearly

stated that one of the striking conclusions arising from the

research and discussion presented was that non-surgical means

(Ponseti and the Physiotherapy methods) were superior to surgery and

should be attempted in preference to surgery. The point was also

made by several well-respected surgeons that the Ponseti method must

be learned and performed properly and that those seeking to use it

should receive proper instruction and ensure that they are truly

following the correct protocol. The point was also made that the

surgeon herself should do the manipulations and casting and not

delegate this to a technician or resident. This is very important,

although (as an educator) I also know that I will teach residents to

do the technique and sometimes in my practice they will have their

hands on the cast, as they do in the OR in every academic center in

the world - however there is a difference between teaching someone

else and supervising them and leaving them alone to do it, while

unskilled (I don't go for a coffee when a resident is being allowed

to do some part of one of my operations in the OR and clubfoot

casting is just as important). (I would also like to add in that

there is no reason why a skilled plaster technician like Beth Myers,

say, couldn't do the treatment. However it is the rare center that

will sponsor and support their technicians to obtain appropriate

training.)

So, for all of you who have new diagnoses of CF in your families and

are being told that this is an unproven method, this conference lays

a LOT of official and scientific support to properly executed

nonsurgical manipulation/casting and/or physio. More research

emphasizing functional outcomes is needed, but this will take

decades to be truly complete. Use this information to challenge

your physicians and insurance companies if they are still swimming

in the surgical paradigm. Sometimes surgery is necessary, but only

when other avenues have truly been exhausted and when it occurs it

should be as minimal as possible. If you run into someone with

the " my time is too valuable " attitude that described,

consider voting with your feet.

Finally, there is still a lot of work to be done to get the message

out. Remember that you had to be pretty devoted to the topic to

travel (internationally in many cases) to something called " the 3rd

international clubfoot symposium " . There will remain lots of

pediatric orthopods and certainly general orthopods ignorant of the

importance of this method. We, who are aware of this information

and are fluent with the method and the research, have a

responsibility to spread the word.

son

[Guest guest]

,

I am thrilled to hear this report. Thank you, and congratulations on

having your paper accepted and presenting it. What an accomplishment!

I'm eager to read it, and hear more about the other papers too. It

must've been incredibly encouraging to hear such a positive flow of

information being presented, and well received, from doctors from

over the world. Hopefully it's an indication that a sea change in the

prevalent mode of treatment is underway. What an uplifting few days

it had to be.

Thank you for all you've done for this group and countless clubfoot

parents via the internet. Please keep us informed of any further

results and feedback from the meeting that you hear about.

Three Cheers!

and

[Guest guest]

,

I am thrilled to hear this report. Thank you, and congratulations on

having your paper accepted and presenting it. What an accomplishment!

I'm eager to read it, and hear more about the other papers too. It

must've been incredibly encouraging to hear such a positive flow of

information being presented, and well received, from doctors from

over the world. Hopefully it's an indication that a sea change in the

prevalent mode of treatment is underway. What an uplifting few days

it had to be.

Thank you for all you've done for this group and countless clubfoot

parents via the internet. Please keep us informed of any further

results and feedback from the meeting that you hear about.

Three Cheers!

and

[Guest guest]

,

I am thrilled to hear this report. Thank you, and congratulations on

having your paper accepted and presenting it. What an accomplishment!

I'm eager to read it, and hear more about the other papers too. It

must've been incredibly encouraging to hear such a positive flow of

information being presented, and well received, from doctors from

over the world. Hopefully it's an indication that a sea change in the

prevalent mode of treatment is underway. What an uplifting few days

it had to be.

Thank you for all you've done for this group and countless clubfoot

parents via the internet. Please keep us informed of any further

results and feedback from the meeting that you hear about.

Three Cheers!

and

[Guest guest]

Dr. son,

Thanks for your thoughts about the meeting. I see what you are

saying: that the doctors in attendance might be the ones more

inclined to be open to non-surgical methods, given that they made the

effort to travel to hear about them. (Except, obviously, for the

financially minded surgeon described.. yikes.) I do hope it's

a sign, however, of SOME movement in the intransigence there's been

to even consider that the non-surgical way has merit.

I have heard many times, myself and in my reading, that although

there have been good results in Iowa, the " jury is still out " . It

seems clear now that the jury is IN. But I'm sure you are right that,

nevertheless, there will still be quite a few doctors who are stuck

on the surgical path. Or -- in a way, even worse -- profess to offer

the method that is now such the buzz, but have tinkered with it or

misunderstood it enough that it's not what the patient is getting.

Parents need to continue to be well informed and, as you so well say,

vote with their feet!

Thanks for posting with your perspective.

and

> Great summary . It was a truly inspiring meeting. I have a

> few points to add. Dr. Duhaime, in his closing remarks clearly

> stated that one of the striking conclusions arising from the

> research and discussion presented was that non-surgical means

> (Ponseti and the Physiotherapy methods) were superior to surgery

and

> should be attempted in preference to surgery. The point was also

> made by several well-respected surgeons that the Ponseti method

must

> be learned and performed properly and that those seeking to use it

> should receive proper instruction and ensure that they are truly

> following the correct protocol. The point was also made that the

> surgeon herself should do the manipulations and casting and not

> delegate this to a technician or resident. This is very important,

> although (as an educator) I also know that I will teach residents

to

> do the technique and sometimes in my practice they will have their

> hands on the cast, as they do in the OR in every academic center in

> the world - however there is a difference between teaching someone

> else and supervising them and leaving them alone to do it, while

> unskilled (I don't go for a coffee when a resident is being allowed

> to do some part of one of my operations in the OR and clubfoot

> casting is just as important). (I would also like to add in that

> there is no reason why a skilled plaster technician like Beth

Myers,

> say, couldn't do the treatment. However it is the rare center that

> will sponsor and support their technicians to obtain appropriate

> training.)

>

> So, for all of you who have new diagnoses of CF in your families

and

> are being told that this is an unproven method, this conference

lays

> a LOT of official and scientific support to properly executed

> nonsurgical manipulation/casting and/or physio. More research

> emphasizing functional outcomes is needed, but this will take

> decades to be truly complete. Use this information to challenge

> your physicians and insurance companies if they are still swimming

> in the surgical paradigm. Sometimes surgery is necessary, but only

> when other avenues have truly been exhausted and when it occurs it

> should be as minimal as possible. If you run into someone with

> the " my time is too valuable " attitude that described,

> consider voting with your feet.

>

> Finally, there is still a lot of work to be done to get the message

> out. Remember that you had to be pretty devoted to the topic to

> travel (internationally in many cases) to something called " the 3rd

> international clubfoot symposium " . There will remain lots of

> pediatric orthopods and certainly general orthopods ignorant of the

> importance of this method. We, who are aware of this information

> and are fluent with the method and the research, have a

> responsibility to spread the word.

>

> son

[Guest guest]

Dr. son,

Thanks for your thoughts about the meeting. I see what you are

saying: that the doctors in attendance might be the ones more

inclined to be open to non-surgical methods, given that they made the

effort to travel to hear about them. (Except, obviously, for the

financially minded surgeon described.. yikes.) I do hope it's

a sign, however, of SOME movement in the intransigence there's been

to even consider that the non-surgical way has merit.

I have heard many times, myself and in my reading, that although

there have been good results in Iowa, the " jury is still out " . It

seems clear now that the jury is IN. But I'm sure you are right that,

nevertheless, there will still be quite a few doctors who are stuck

on the surgical path. Or -- in a way, even worse -- profess to offer

the method that is now such the buzz, but have tinkered with it or

misunderstood it enough that it's not what the patient is getting.

Parents need to continue to be well informed and, as you so well say,

vote with their feet!

Thanks for posting with your perspective.

and

> Great summary . It was a truly inspiring meeting. I have a

> few points to add. Dr. Duhaime, in his closing remarks clearly

> stated that one of the striking conclusions arising from the

> research and discussion presented was that non-surgical means

> (Ponseti and the Physiotherapy methods) were superior to surgery

and

> should be attempted in preference to surgery. The point was also

> made by several well-respected surgeons that the Ponseti method

must

> be learned and performed properly and that those seeking to use it

> should receive proper instruction and ensure that they are truly

> following the correct protocol. The point was also made that the

> surgeon herself should do the manipulations and casting and not

> delegate this to a technician or resident. This is very important,

> although (as an educator) I also know that I will teach residents

to

> do the technique and sometimes in my practice they will have their

> hands on the cast, as they do in the OR in every academic center in

> the world - however there is a difference between teaching someone

> else and supervising them and leaving them alone to do it, while

> unskilled (I don't go for a coffee when a resident is being allowed

> to do some part of one of my operations in the OR and clubfoot

> casting is just as important). (I would also like to add in that

> there is no reason why a skilled plaster technician like Beth

Myers,

> say, couldn't do the treatment. However it is the rare center that

> will sponsor and support their technicians to obtain appropriate

> training.)

>

> So, for all of you who have new diagnoses of CF in your families

and

> are being told that this is an unproven method, this conference

lays

> a LOT of official and scientific support to properly executed

> nonsurgical manipulation/casting and/or physio. More research

> emphasizing functional outcomes is needed, but this will take

> decades to be truly complete. Use this information to challenge

> your physicians and insurance companies if they are still swimming

> in the surgical paradigm. Sometimes surgery is necessary, but only

> when other avenues have truly been exhausted and when it occurs it

> should be as minimal as possible. If you run into someone with

> the " my time is too valuable " attitude that described,

> consider voting with your feet.

>

> Finally, there is still a lot of work to be done to get the message

> out. Remember that you had to be pretty devoted to the topic to

> travel (internationally in many cases) to something called " the 3rd

> international clubfoot symposium " . There will remain lots of

> pediatric orthopods and certainly general orthopods ignorant of the

> importance of this method. We, who are aware of this information

> and are fluent with the method and the research, have a

> responsibility to spread the word.

>

> son

[Guest guest]

Dr. son,

Thanks for your thoughts about the meeting. I see what you are

saying: that the doctors in attendance might be the ones more

inclined to be open to non-surgical methods, given that they made the

effort to travel to hear about them. (Except, obviously, for the

financially minded surgeon described.. yikes.) I do hope it's

a sign, however, of SOME movement in the intransigence there's been

to even consider that the non-surgical way has merit.

I have heard many times, myself and in my reading, that although

there have been good results in Iowa, the " jury is still out " . It

seems clear now that the jury is IN. But I'm sure you are right that,

nevertheless, there will still be quite a few doctors who are stuck

on the surgical path. Or -- in a way, even worse -- profess to offer

the method that is now such the buzz, but have tinkered with it or

misunderstood it enough that it's not what the patient is getting.

Parents need to continue to be well informed and, as you so well say,

vote with their feet!

Thanks for posting with your perspective.

and

> Great summary . It was a truly inspiring meeting. I have a

> few points to add. Dr. Duhaime, in his closing remarks clearly

> stated that one of the striking conclusions arising from the

> research and discussion presented was that non-surgical means

> (Ponseti and the Physiotherapy methods) were superior to surgery

and

> should be attempted in preference to surgery. The point was also

> made by several well-respected surgeons that the Ponseti method

must

> be learned and performed properly and that those seeking to use it

> should receive proper instruction and ensure that they are truly

> following the correct protocol. The point was also made that the

> surgeon herself should do the manipulations and casting and not

> delegate this to a technician or resident. This is very important,

> although (as an educator) I also know that I will teach residents

to

> do the technique and sometimes in my practice they will have their

> hands on the cast, as they do in the OR in every academic center in

> the world - however there is a difference between teaching someone

> else and supervising them and leaving them alone to do it, while

> unskilled (I don't go for a coffee when a resident is being allowed

> to do some part of one of my operations in the OR and clubfoot

> casting is just as important). (I would also like to add in that

> there is no reason why a skilled plaster technician like Beth

Myers,

> say, couldn't do the treatment. However it is the rare center that

> will sponsor and support their technicians to obtain appropriate

> training.)

>

> So, for all of you who have new diagnoses of CF in your families

and

> are being told that this is an unproven method, this conference

lays

> a LOT of official and scientific support to properly executed

> nonsurgical manipulation/casting and/or physio. More research

> emphasizing functional outcomes is needed, but this will take

> decades to be truly complete. Use this information to challenge

> your physicians and insurance companies if they are still swimming

> in the surgical paradigm. Sometimes surgery is necessary, but only

> when other avenues have truly been exhausted and when it occurs it

> should be as minimal as possible. If you run into someone with

> the " my time is too valuable " attitude that described,

> consider voting with your feet.

>

> Finally, there is still a lot of work to be done to get the message

> out. Remember that you had to be pretty devoted to the topic to

> travel (internationally in many cases) to something called " the 3rd

> international clubfoot symposium " . There will remain lots of

> pediatric orthopods and certainly general orthopods ignorant of the

> importance of this method. We, who are aware of this information

> and are fluent with the method and the research, have a

> responsibility to spread the word.

>

> son

[Guest guest]

Dear ,

Thanks for posting all of that information. It's really

interesting. Will you also be posting your paper? Curiosity

question--what was the reaction to the paper about using Botox to

avoid the tenotomy? Have any of the Iowa docs experimented with

that? Just curious.

Thanks again for all of the information you provide on a regular

basis. You've helped countless people

Jen in Japan (Calvin 8-23-01, almost finished with DBB full-time)

> This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> International Congress on Clubfoot at the San Diego Convention

> Center. It was a part of the The International Society of

> Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

SICOT

> describes itself as the worlds Orthopedic Organization whereas the

> AAOS is limited mostly to American orthopedists.

> http://www.sicot2002.com/

> The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> (Chicago) and Dr. Duhaime (Canada)

>

> In February, Dr. Morcuende of the U of Iowa and I decided to try to

> write and submit a paper to the meeting about the influence of the

> internet in helping parents have information on clubfoot and

> treatment alternatives. Our paper was accepted and I got the

> opportunity to present it at the meeting in San Diego. Allyson,

> Charity and were also able to attend some of the meetings.

>

> I will try to report here on some of the information that I learned

> from the meeting. It is possible that I may have misunderstood

> someones position or statements and may not remember things

exactly,

> but these are my recollections of what I heard. If anyone feels

that

> I have missed something or misinterpreted it, please let me know

and

> I will try to correct it.

>

> There were 70 papers presented from 20 different countries. The

> countries from which papers were presented were: USA (27), Canada

> (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

India

> (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

Korea,

> Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> doctors there that were from Norway, Germany, UK, Nigeria, S.

Africa,

> Mexico and probably a few other countries that I didn't know about.

>

> The papers were sorted and presented by the following topics:

> Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> Classification (2), Outcome & Evaluation (4), Gait after Surgery

(5),

> Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> method), French Method (4), Orthosis (2), Clubfoot Release (11),

> Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

Misc

> (Arthrogryposis)(4). Three of the papers were also related to the

> Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> Uganda was the lead story in the next days " Convention Newspaper " .

>

> Dr.'s that I knew who were in attendance who were Ponseti method

> doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

Lehman

> (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

> Alvarez (Ponseti/Botox - Vancouver), s &

> (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

and

> del Campo (Mexico) and one from UCSD (San Diego). I assume that

> there were also other Ponseti method doctors there but that I

didn't

> know who they were.

>

> Dr.'s there that were French method doctors included Dr's Bensahel

> (France), s & (French/Ponseti, Dallas), Exner

> (Swiss). I assume that there were also others there who use the

> French methods, but I didn't know who they were.

>

> There were also a number of surgical method doctors including

Gennari

> (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> (Japan), Fernandez (Venezuela), (Shriners, Chicago), Aroojis

> (India) and about 15 others who presented surgically related

papers.

> There were probably also other surgically related doctors who I

> didn't know who their names as well as some who may use

combinations

> of different methods.

>

> There were 15 papers presented during the meetings that were

related

> to the Ponseti method and included the following topics:

>

> Can the Internet Spare Children from Clubfoot Surgery? The effect

of

> web-based information and parent support-groups on parent treatment

> choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

>

> Community Based Rehabilitation (CBR) in the Management of Clubfoot

> Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> became the subject for the lead story in the next days Convention

> Newspaper.

>

> A Reliable Method of Assessing the Amount of Deformity in the

> Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> (Canada)

>

> MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> Pirani S (Canada)

>

> A Single Surgeon's Experience with the Ponseti Method for the

> Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

>

> Ponseti Treatment of the Congenital Clubfoot: The New Westminster

> Experience. Pirani S (Canada)

>

> Efficacy of the Ponseti Method in the Treatment of Idiopathic

Clubfoot

> Morcuende JA, Dolan LA, Ponseti IV (USA)

>

> A Technical Note on the Ponseti Method: The Importance of the

> Supination of the Forefoot in the Initial Cast to Reduce Cavus

> Deformity. Frick S (USA)

>

> Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

>

> Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

Report

> of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ, Beauchamp

> RD, Choit R (Canada) This method is the Ponseti method except for

> the use of BOTOX instead of a tenotomy.

>

> Ponseti Method Treatment of Congenital Clubfoot in Older (4 Months)

> Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick SL

> (USA)

>

> Conservative Treatment of Clubfoot After Walking Age. Lourenco AF,

> Prata SD, Sodre H, Milani C (Brasil)

>

> The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

of

> Deformity in Developing Nations During Treatment of Congenital

> Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

>

> Initial Results of the Ponseti Method in Patients with Clubfoot

> Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti IV

> (USA)

>

> I will put the outline and titles of all of the papers in the files

> section of the Ponseti method parents support group site which can

be

> located at http://groups.yahoo.com/group/nosurgery4clubfoot/

>

> I was able to spend a few hours on monday with Dr.'s Ponseti,

> Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> hospital. Charity and Trenton were there as well as some other S.

> California internet parents who we had met at Dr. Colburns 1 1/2

> years ago.

>

> I thought that the meetings on Tuesday and Wednesday were very

> informative and that the Ponseti method was recieved very well by

> those who were there. After our paper on the internet, there were

a

> number of doctors that asked about the internet groups. I had told

> them that Clarrisa had assembled what I think is the greatest

library

> of internet information on clubfoot in the world on Parentsplace

that

> had links to sites on all subjects. One doctor said that most of

> what is on the internet shouldn't be trusted and that we should be

> censoring which sites get placed into our library. I indicated

that

> we didn't see it as our role to censor the information, but to make

> all the information we could find available so that parents could

be

> aware and that different subjects and questions could be

discussed.

> Our own Dr. son stood up and defended our efforts to

> provide information on all clubfoot related topics to parents.

>

> There was a lot of new information in the different Ponseti method

> papers. I will try to summarize some of the new information.

>

> Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

patients

> with 95 clubfeet. There were 33 males and 22 females. Thirty three

> patients had been treated by others before going to see him with an

> average of 10 casts, (range of 3 to 20 casts by prior doctors).

> Treatment was begun at his institution at an average of 14 weeks of

> age, (range 2-64 weeks). Six feet were corrected with serial casts

> alone. The remaining 89 feet were fully corrected after casting

plus

> a percutaneous heel cord tenotomy. Two patients required a

posterior

> ankle release after having been non-compliant with brace wear.

>

> Dr. Dobbs report included a study on non-compliance with the use of

> the FAB brace. Similar to the prior U of Iowa studies, most but

not

> all of the relapses they had were related to non-compliance with

the

> use of the FAB. They did a study on factors that seemed to

correlate

> with non-compliance and then used those to identify patients most

> likely to have non-compliance problems. Then from the time of

> initial casting they were able establish a method of reducing the

> number affected by non-compliance and relapsing.

>

> The issue of the potential difficulty of getting parents to use the

> FAB was often a topic of questions of the doctors relating to the

> Ponseti method.

>

> Dr. Frick's paper was on what he called the " Magic Move " of the

> Ponseti method. He mentioned that a number of doctors he had

talked

> to said that they were trying the " Ponseti " method but that it

wasn't

> working as it was supposed to. He said that upon further

questioning

> of their method, he was able to find what he felt was a common

error

> in the way some doctors try to do the initial Ponseti method cast

> that makes it much for difficult for them to have success. (It is

> also listed as one of Dr. Ponseti's common errors at his site as

#1,2

> Pronating instead of Supinating the foot)

> http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

>

> Dr. Frick said that once he and other doctor get that initial

> manipulaion move to supinate instead of pronate the foot in the

first

> casting that it sets up the balance of the foot correction in later

> casts to flow smoothly.

>

> Dr. Lehman said how they at NYU used to treat most of the children

> they saw surgically, but that now they almost never do. He said

that

> almost all of the clubfoot surgery he is now doing is treating

> relapsed feet that were previously surgically treated.

>

> An extremely interesting Ponseti and Physiotherapy paper was by a

Dr.

> Lourenco of Brazil about conservative treatment of clubfoot after

> walking age. He indicated that in Brazil, that there are

tremendous

> treatment resources for those who are wealthy but that the poor

often

> get no care. Over the past few years, he has been trying to treat

> older poor children who have had no prior treatment. He said that

> the financial resources have not existed for him to be able to do

> surgery so that he has tried a physiotherapy/Ponseti-like casting

> method for children from 5 to 8 years of age with very bad

previously

> untreated feet. Although it is not as good as it would have been

if

> treatment had been when they were little it is working and it is

> currently those children's only alternative. I think all of the

> Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

the

> Uganda clubfoot project were very amazed and feeling inspired by

that

> paper.

>

> I believe that it was Dr. Lourenco who told me that he had been

doing

> the surgical method in Brazil for his regular patients up until

about

> 2 years ago. He said that he had gotten a call from a fellow

doctor

> whose own child had just been born with clubfoot. This fellow

doctor

> said, " I want you to do all that you can to avoid the surgery. "

Dr.

> Lourenco had recently heard something about the Ponseti method,

> investigated it further and used it for the other doctors child.

He

> said that since then he had treated 55 children with the Ponseti

> method.

>

> Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

project

> first got started that they felt that 6 months was about as late as

> they could start a child in the Ponseti method in Africa and so

they

> usually kind of just planned on the surgery if they were older than

> that. As they had been using the method, they had slowly been

trying

> it for children who came who were older and over 1 and been able to

> make it work, but had not considered that there was still a chance

to

> try to make it work out to 5 to 8 years of age in untreated feet.

>

> Mr. Steenbeek also presented a paper on his Ugandan FAB for use in

> developing countries where the cost of a US made FAB would be too

> expensive.

>

> Dr. Morcuende also presented some information about the U of Iowa's

> experience with using the Ponseti method in the treatment of

> Arthrogryposis. They indicated that from 1992 to 2001 that they

had

> been about 50% successful in avoiding posterior release types of

> surgery. They indicated that although surgery may be necessary, it

> is less extensive. Dr. Gotfried from Lubbock, Texas had also

> reported on his encouraging experience with the use of the Ponseti

> method for a few arthrogryposis children in his poster presented at

> the May 2002 POSNA meeting.

>

> The effect of having the 8 Ponseti method papers all one after

> another and all from different doctors and hospital groups and all

> essentially saying the same thing was very powerful. One doctor at

> the end said in a general question from the floor microphone, can

> anyone think of a reason not to try using the Ponseti method first

> before considering going toward a surgery.

>

> Also it appeared that there were a number there who had never

before

> heard of the Ponseti method. The main group of Ponseti method

papers

> were presented on Wednesday morning and at the end of the

conference

> that day, a number of doctors gathered in different parts of the

room

> around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> Steenbeek to try to learn the specific manipulation and casting

> technique and to get copies of the CD's that were available that

had

> the Ponseti method video and Uganda Clubfoot Project information.

I

> told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

they

> were all going to be very busy trying to help get information to

> people who were interested.

>

> Dr. Morcuende said that the Costa Rica Ponseti method project was

> going well and that he had been invited to go to a clinic in

> Columbia. The head of the Nigerian pediatric orthopedics was very

> interested in the Uganda Clubfoot Project. A doctor from Bombay

> India said that what he had learned was going to have a big impact

on

> what they did in the future.

>

> There was also one doctor I met during the 3 days there who

indicated

> to a group of doctors with me that his surgical skills were too

> valuable to be used in trying to conservatively cast a child's

feet.

> That if the casting techs couldn't learn how to do the Ponseti

method

> well enough that his time couldn't be spent doing it. He indicated

> that the money generated for hospitals that were already

financially

> strapped was in highly skilled ped ortho surgeons in doing

surgery.

> That they should be utilized in their most financially valuable

role

> and the role that they were trained for which was surgery. He also

> felt that the Ponseti method took too much time to spend on

> manipulation and casting. I thought that it was a fairly

surprising

> statement. I thought later that I should have mentioned that since

> most children were already being casted for 3-4 months prior to a

> surgery as well as 3 months post surgery anyway, that it might also

> be more economical to just cast for 2 months with the Ponseti

method

> and save the hospital some money by not having to cast as much.

>

> It was a great meeting and I was very grateful to be able to be

there

> and learn from all of the information presented. To try to go over

> all of the other papers will be much too long. If anyone has any

> specific questions about a paper from the title in the files

section

> please ask.

>

> and (3-17-99)

[Guest guest]

Dear ,

Thanks for posting all of that information. It's really

interesting. Will you also be posting your paper? Curiosity

question--what was the reaction to the paper about using Botox to

avoid the tenotomy? Have any of the Iowa docs experimented with

that? Just curious.

Thanks again for all of the information you provide on a regular

basis. You've helped countless people

Jen in Japan (Calvin 8-23-01, almost finished with DBB full-time)

> This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> International Congress on Clubfoot at the San Diego Convention

> Center. It was a part of the The International Society of

> Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

SICOT

> describes itself as the worlds Orthopedic Organization whereas the

> AAOS is limited mostly to American orthopedists.

> http://www.sicot2002.com/

> The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> (Chicago) and Dr. Duhaime (Canada)

>

> In February, Dr. Morcuende of the U of Iowa and I decided to try to

> write and submit a paper to the meeting about the influence of the

> internet in helping parents have information on clubfoot and

> treatment alternatives. Our paper was accepted and I got the

> opportunity to present it at the meeting in San Diego. Allyson,

> Charity and were also able to attend some of the meetings.

>

> I will try to report here on some of the information that I learned

> from the meeting. It is possible that I may have misunderstood

> someones position or statements and may not remember things

exactly,

> but these are my recollections of what I heard. If anyone feels

that

> I have missed something or misinterpreted it, please let me know

and

> I will try to correct it.

>

> There were 70 papers presented from 20 different countries. The

> countries from which papers were presented were: USA (27), Canada

> (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

India

> (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

Korea,

> Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> doctors there that were from Norway, Germany, UK, Nigeria, S.

Africa,

> Mexico and probably a few other countries that I didn't know about.

>

> The papers were sorted and presented by the following topics:

> Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> Classification (2), Outcome & Evaluation (4), Gait after Surgery

(5),

> Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> method), French Method (4), Orthosis (2), Clubfoot Release (11),

> Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

Misc

> (Arthrogryposis)(4). Three of the papers were also related to the

> Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> Uganda was the lead story in the next days " Convention Newspaper " .

>

> Dr.'s that I knew who were in attendance who were Ponseti method

> doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

Lehman

> (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

> Alvarez (Ponseti/Botox - Vancouver), s &

> (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

and

> del Campo (Mexico) and one from UCSD (San Diego). I assume that

> there were also other Ponseti method doctors there but that I

didn't

> know who they were.

>

> Dr.'s there that were French method doctors included Dr's Bensahel

> (France), s & (French/Ponseti, Dallas), Exner

> (Swiss). I assume that there were also others there who use the

> French methods, but I didn't know who they were.

>

> There were also a number of surgical method doctors including

Gennari

> (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> (Japan), Fernandez (Venezuela), (Shriners, Chicago), Aroojis

> (India) and about 15 others who presented surgically related

papers.

> There were probably also other surgically related doctors who I

> didn't know who their names as well as some who may use

combinations

> of different methods.

>

> There were 15 papers presented during the meetings that were

related

> to the Ponseti method and included the following topics:

>

> Can the Internet Spare Children from Clubfoot Surgery? The effect

of

> web-based information and parent support-groups on parent treatment

> choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

>

> Community Based Rehabilitation (CBR) in the Management of Clubfoot

> Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> became the subject for the lead story in the next days Convention

> Newspaper.

>

> A Reliable Method of Assessing the Amount of Deformity in the

> Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> (Canada)

>

> MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> Pirani S (Canada)

>

> A Single Surgeon's Experience with the Ponseti Method for the

> Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

>

> Ponseti Treatment of the Congenital Clubfoot: The New Westminster

> Experience. Pirani S (Canada)

>

> Efficacy of the Ponseti Method in the Treatment of Idiopathic

Clubfoot

> Morcuende JA, Dolan LA, Ponseti IV (USA)

>

> A Technical Note on the Ponseti Method: The Importance of the

> Supination of the Forefoot in the Initial Cast to Reduce Cavus

> Deformity. Frick S (USA)

>

> Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

>

> Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

Report

> of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ, Beauchamp

> RD, Choit R (Canada) This method is the Ponseti method except for

> the use of BOTOX instead of a tenotomy.

>

> Ponseti Method Treatment of Congenital Clubfoot in Older (4 Months)

> Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick SL

> (USA)

>

> Conservative Treatment of Clubfoot After Walking Age. Lourenco AF,

> Prata SD, Sodre H, Milani C (Brasil)

>

> The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

of

> Deformity in Developing Nations During Treatment of Congenital

> Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

>

> Initial Results of the Ponseti Method in Patients with Clubfoot

> Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti IV

> (USA)

>

> I will put the outline and titles of all of the papers in the files

> section of the Ponseti method parents support group site which can

be

> located at http://groups.yahoo.com/group/nosurgery4clubfoot/

>

> I was able to spend a few hours on monday with Dr.'s Ponseti,

> Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> hospital. Charity and Trenton were there as well as some other S.

> California internet parents who we had met at Dr. Colburns 1 1/2

> years ago.

>

> I thought that the meetings on Tuesday and Wednesday were very

> informative and that the Ponseti method was recieved very well by

> those who were there. After our paper on the internet, there were

a

> number of doctors that asked about the internet groups. I had told

> them that Clarrisa had assembled what I think is the greatest

library

> of internet information on clubfoot in the world on Parentsplace

that

> had links to sites on all subjects. One doctor said that most of

> what is on the internet shouldn't be trusted and that we should be

> censoring which sites get placed into our library. I indicated

that

> we didn't see it as our role to censor the information, but to make

> all the information we could find available so that parents could

be

> aware and that different subjects and questions could be

discussed.

> Our own Dr. son stood up and defended our efforts to

> provide information on all clubfoot related topics to parents.

>

> There was a lot of new information in the different Ponseti method

> papers. I will try to summarize some of the new information.

>

> Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

patients

> with 95 clubfeet. There were 33 males and 22 females. Thirty three

> patients had been treated by others before going to see him with an

> average of 10 casts, (range of 3 to 20 casts by prior doctors).

> Treatment was begun at his institution at an average of 14 weeks of

> age, (range 2-64 weeks). Six feet were corrected with serial casts

> alone. The remaining 89 feet were fully corrected after casting

plus

> a percutaneous heel cord tenotomy. Two patients required a

posterior

> ankle release after having been non-compliant with brace wear.

>

> Dr. Dobbs report included a study on non-compliance with the use of

> the FAB brace. Similar to the prior U of Iowa studies, most but

not

> all of the relapses they had were related to non-compliance with

the

> use of the FAB. They did a study on factors that seemed to

correlate

> with non-compliance and then used those to identify patients most

> likely to have non-compliance problems. Then from the time of

> initial casting they were able establish a method of reducing the

> number affected by non-compliance and relapsing.

>

> The issue of the potential difficulty of getting parents to use the

> FAB was often a topic of questions of the doctors relating to the

> Ponseti method.

>

> Dr. Frick's paper was on what he called the " Magic Move " of the

> Ponseti method. He mentioned that a number of doctors he had

talked

> to said that they were trying the " Ponseti " method but that it

wasn't

> working as it was supposed to. He said that upon further

questioning

> of their method, he was able to find what he felt was a common

error

> in the way some doctors try to do the initial Ponseti method cast

> that makes it much for difficult for them to have success. (It is

> also listed as one of Dr. Ponseti's common errors at his site as

#1,2

> Pronating instead of Supinating the foot)

> http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

>

> Dr. Frick said that once he and other doctor get that initial

> manipulaion move to supinate instead of pronate the foot in the

first

> casting that it sets up the balance of the foot correction in later

> casts to flow smoothly.

>

> Dr. Lehman said how they at NYU used to treat most of the children

> they saw surgically, but that now they almost never do. He said

that

> almost all of the clubfoot surgery he is now doing is treating

> relapsed feet that were previously surgically treated.

>

> An extremely interesting Ponseti and Physiotherapy paper was by a

Dr.

> Lourenco of Brazil about conservative treatment of clubfoot after

> walking age. He indicated that in Brazil, that there are

tremendous

> treatment resources for those who are wealthy but that the poor

often

> get no care. Over the past few years, he has been trying to treat

> older poor children who have had no prior treatment. He said that

> the financial resources have not existed for him to be able to do

> surgery so that he has tried a physiotherapy/Ponseti-like casting

> method for children from 5 to 8 years of age with very bad

previously

> untreated feet. Although it is not as good as it would have been

if

> treatment had been when they were little it is working and it is

> currently those children's only alternative. I think all of the

> Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

the

> Uganda clubfoot project were very amazed and feeling inspired by

that

> paper.

>

> I believe that it was Dr. Lourenco who told me that he had been

doing

> the surgical method in Brazil for his regular patients up until

about

> 2 years ago. He said that he had gotten a call from a fellow

doctor

> whose own child had just been born with clubfoot. This fellow

doctor

> said, " I want you to do all that you can to avoid the surgery. "

Dr.

> Lourenco had recently heard something about the Ponseti method,

> investigated it further and used it for the other doctors child.

He

> said that since then he had treated 55 children with the Ponseti

> method.

>

> Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

project

> first got started that they felt that 6 months was about as late as

> they could start a child in the Ponseti method in Africa and so

they

> usually kind of just planned on the surgery if they were older than

> that. As they had been using the method, they had slowly been

trying

> it for children who came who were older and over 1 and been able to

> make it work, but had not considered that there was still a chance

to

> try to make it work out to 5 to 8 years of age in untreated feet.

>

> Mr. Steenbeek also presented a paper on his Ugandan FAB for use in

> developing countries where the cost of a US made FAB would be too

> expensive.

>

> Dr. Morcuende also presented some information about the U of Iowa's

> experience with using the Ponseti method in the treatment of

> Arthrogryposis. They indicated that from 1992 to 2001 that they

had

> been about 50% successful in avoiding posterior release types of

> surgery. They indicated that although surgery may be necessary, it

> is less extensive. Dr. Gotfried from Lubbock, Texas had also

> reported on his encouraging experience with the use of the Ponseti

> method for a few arthrogryposis children in his poster presented at

> the May 2002 POSNA meeting.

>

> The effect of having the 8 Ponseti method papers all one after

> another and all from different doctors and hospital groups and all

> essentially saying the same thing was very powerful. One doctor at

> the end said in a general question from the floor microphone, can

> anyone think of a reason not to try using the Ponseti method first

> before considering going toward a surgery.

>

> Also it appeared that there were a number there who had never

before

> heard of the Ponseti method. The main group of Ponseti method

papers

> were presented on Wednesday morning and at the end of the

conference

> that day, a number of doctors gathered in different parts of the

room

> around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> Steenbeek to try to learn the specific manipulation and casting

> technique and to get copies of the CD's that were available that

had

> the Ponseti method video and Uganda Clubfoot Project information.

I

> told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

they

> were all going to be very busy trying to help get information to

> people who were interested.

>

> Dr. Morcuende said that the Costa Rica Ponseti method project was

> going well and that he had been invited to go to a clinic in

> Columbia. The head of the Nigerian pediatric orthopedics was very

> interested in the Uganda Clubfoot Project. A doctor from Bombay

> India said that what he had learned was going to have a big impact

on

> what they did in the future.

>

> There was also one doctor I met during the 3 days there who

indicated

> to a group of doctors with me that his surgical skills were too

> valuable to be used in trying to conservatively cast a child's

feet.

> That if the casting techs couldn't learn how to do the Ponseti

method

> well enough that his time couldn't be spent doing it. He indicated

> that the money generated for hospitals that were already

financially

> strapped was in highly skilled ped ortho surgeons in doing

surgery.

> That they should be utilized in their most financially valuable

role

> and the role that they were trained for which was surgery. He also

> felt that the Ponseti method took too much time to spend on

> manipulation and casting. I thought that it was a fairly

surprising

> statement. I thought later that I should have mentioned that since

> most children were already being casted for 3-4 months prior to a

> surgery as well as 3 months post surgery anyway, that it might also

> be more economical to just cast for 2 months with the Ponseti

method

> and save the hospital some money by not having to cast as much.

>

> It was a great meeting and I was very grateful to be able to be

there

> and learn from all of the information presented. To try to go over

> all of the other papers will be much too long. If anyone has any

> specific questions about a paper from the title in the files

section

> please ask.

>

> and (3-17-99)

[Guest guest]

Dear ,

Thanks for posting all of that information. It's really

interesting. Will you also be posting your paper? Curiosity

question--what was the reaction to the paper about using Botox to

avoid the tenotomy? Have any of the Iowa docs experimented with

that? Just curious.

Thanks again for all of the information you provide on a regular

basis. You've helped countless people

Jen in Japan (Calvin 8-23-01, almost finished with DBB full-time)

> This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> International Congress on Clubfoot at the San Diego Convention

> Center. It was a part of the The International Society of

> Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

SICOT

> describes itself as the worlds Orthopedic Organization whereas the

> AAOS is limited mostly to American orthopedists.

> http://www.sicot2002.com/

> The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> (Chicago) and Dr. Duhaime (Canada)

>

> In February, Dr. Morcuende of the U of Iowa and I decided to try to

> write and submit a paper to the meeting about the influence of the

> internet in helping parents have information on clubfoot and

> treatment alternatives. Our paper was accepted and I got the

> opportunity to present it at the meeting in San Diego. Allyson,

> Charity and were also able to attend some of the meetings.

>

> I will try to report here on some of the information that I learned

> from the meeting. It is possible that I may have misunderstood

> someones position or statements and may not remember things

exactly,

> but these are my recollections of what I heard. If anyone feels

that

> I have missed something or misinterpreted it, please let me know

and

> I will try to correct it.

>

> There were 70 papers presented from 20 different countries. The

> countries from which papers were presented were: USA (27), Canada

> (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

India

> (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

Korea,

> Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> doctors there that were from Norway, Germany, UK, Nigeria, S.

Africa,

> Mexico and probably a few other countries that I didn't know about.

>

> The papers were sorted and presented by the following topics:

> Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> Classification (2), Outcome & Evaluation (4), Gait after Surgery

(5),

> Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> method), French Method (4), Orthosis (2), Clubfoot Release (11),

> Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

Misc

> (Arthrogryposis)(4). Three of the papers were also related to the

> Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> Uganda was the lead story in the next days " Convention Newspaper " .

>

> Dr.'s that I knew who were in attendance who were Ponseti method

> doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

Lehman

> (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

> Alvarez (Ponseti/Botox - Vancouver), s &

> (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

and

> del Campo (Mexico) and one from UCSD (San Diego). I assume that

> there were also other Ponseti method doctors there but that I

didn't

> know who they were.

>

> Dr.'s there that were French method doctors included Dr's Bensahel

> (France), s & (French/Ponseti, Dallas), Exner

> (Swiss). I assume that there were also others there who use the

> French methods, but I didn't know who they were.

>

> There were also a number of surgical method doctors including

Gennari

> (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> (Japan), Fernandez (Venezuela), (Shriners, Chicago), Aroojis

> (India) and about 15 others who presented surgically related

papers.

> There were probably also other surgically related doctors who I

> didn't know who their names as well as some who may use

combinations

> of different methods.

>

> There were 15 papers presented during the meetings that were

related

> to the Ponseti method and included the following topics:

>

> Can the Internet Spare Children from Clubfoot Surgery? The effect

of

> web-based information and parent support-groups on parent treatment

> choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

>

> Community Based Rehabilitation (CBR) in the Management of Clubfoot

> Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> became the subject for the lead story in the next days Convention

> Newspaper.

>

> A Reliable Method of Assessing the Amount of Deformity in the

> Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> (Canada)

>

> MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> Pirani S (Canada)

>

> A Single Surgeon's Experience with the Ponseti Method for the

> Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

>

> Ponseti Treatment of the Congenital Clubfoot: The New Westminster

> Experience. Pirani S (Canada)

>

> Efficacy of the Ponseti Method in the Treatment of Idiopathic

Clubfoot

> Morcuende JA, Dolan LA, Ponseti IV (USA)

>

> A Technical Note on the Ponseti Method: The Importance of the

> Supination of the Forefoot in the Initial Cast to Reduce Cavus

> Deformity. Frick S (USA)

>

> Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

>

> Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

Report

> of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ, Beauchamp

> RD, Choit R (Canada) This method is the Ponseti method except for

> the use of BOTOX instead of a tenotomy.

>

> Ponseti Method Treatment of Congenital Clubfoot in Older (4 Months)

> Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick SL

> (USA)

>

> Conservative Treatment of Clubfoot After Walking Age. Lourenco AF,

> Prata SD, Sodre H, Milani C (Brasil)

>

> The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

of

> Deformity in Developing Nations During Treatment of Congenital

> Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

>

> Initial Results of the Ponseti Method in Patients with Clubfoot

> Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti IV

> (USA)

>

> I will put the outline and titles of all of the papers in the files

> section of the Ponseti method parents support group site which can

be

> located at http://groups.yahoo.com/group/nosurgery4clubfoot/

>

> I was able to spend a few hours on monday with Dr.'s Ponseti,

> Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> hospital. Charity and Trenton were there as well as some other S.

> California internet parents who we had met at Dr. Colburns 1 1/2

> years ago.

>

> I thought that the meetings on Tuesday and Wednesday were very

> informative and that the Ponseti method was recieved very well by

> those who were there. After our paper on the internet, there were

a

> number of doctors that asked about the internet groups. I had told

> them that Clarrisa had assembled what I think is the greatest

library

> of internet information on clubfoot in the world on Parentsplace

that

> had links to sites on all subjects. One doctor said that most of

> what is on the internet shouldn't be trusted and that we should be

> censoring which sites get placed into our library. I indicated

that

> we didn't see it as our role to censor the information, but to make

> all the information we could find available so that parents could

be

> aware and that different subjects and questions could be

discussed.

> Our own Dr. son stood up and defended our efforts to

> provide information on all clubfoot related topics to parents.

>

> There was a lot of new information in the different Ponseti method

> papers. I will try to summarize some of the new information.

>

> Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

patients

> with 95 clubfeet. There were 33 males and 22 females. Thirty three

> patients had been treated by others before going to see him with an

> average of 10 casts, (range of 3 to 20 casts by prior doctors).

> Treatment was begun at his institution at an average of 14 weeks of

> age, (range 2-64 weeks). Six feet were corrected with serial casts

> alone. The remaining 89 feet were fully corrected after casting

plus

> a percutaneous heel cord tenotomy. Two patients required a

posterior

> ankle release after having been non-compliant with brace wear.

>

> Dr. Dobbs report included a study on non-compliance with the use of

> the FAB brace. Similar to the prior U of Iowa studies, most but

not

> all of the relapses they had were related to non-compliance with

the

> use of the FAB. They did a study on factors that seemed to

correlate

> with non-compliance and then used those to identify patients most

> likely to have non-compliance problems. Then from the time of

> initial casting they were able establish a method of reducing the

> number affected by non-compliance and relapsing.

>

> The issue of the potential difficulty of getting parents to use the

> FAB was often a topic of questions of the doctors relating to the

> Ponseti method.

>

> Dr. Frick's paper was on what he called the " Magic Move " of the

> Ponseti method. He mentioned that a number of doctors he had

talked

> to said that they were trying the " Ponseti " method but that it

wasn't

> working as it was supposed to. He said that upon further

questioning

> of their method, he was able to find what he felt was a common

error

> in the way some doctors try to do the initial Ponseti method cast

> that makes it much for difficult for them to have success. (It is

> also listed as one of Dr. Ponseti's common errors at his site as

#1,2

> Pronating instead of Supinating the foot)

> http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

>

> Dr. Frick said that once he and other doctor get that initial

> manipulaion move to supinate instead of pronate the foot in the

first

> casting that it sets up the balance of the foot correction in later

> casts to flow smoothly.

>

> Dr. Lehman said how they at NYU used to treat most of the children

> they saw surgically, but that now they almost never do. He said

that

> almost all of the clubfoot surgery he is now doing is treating

> relapsed feet that were previously surgically treated.

>

> An extremely interesting Ponseti and Physiotherapy paper was by a

Dr.

> Lourenco of Brazil about conservative treatment of clubfoot after

> walking age. He indicated that in Brazil, that there are

tremendous

> treatment resources for those who are wealthy but that the poor

often

> get no care. Over the past few years, he has been trying to treat

> older poor children who have had no prior treatment. He said that

> the financial resources have not existed for him to be able to do

> surgery so that he has tried a physiotherapy/Ponseti-like casting

> method for children from 5 to 8 years of age with very bad

previously

> untreated feet. Although it is not as good as it would have been

if

> treatment had been when they were little it is working and it is

> currently those children's only alternative. I think all of the

> Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

the

> Uganda clubfoot project were very amazed and feeling inspired by

that

> paper.

>

> I believe that it was Dr. Lourenco who told me that he had been

doing

> the surgical method in Brazil for his regular patients up until

about

> 2 years ago. He said that he had gotten a call from a fellow

doctor

> whose own child had just been born with clubfoot. This fellow

doctor

> said, " I want you to do all that you can to avoid the surgery. "

Dr.

> Lourenco had recently heard something about the Ponseti method,

> investigated it further and used it for the other doctors child.

He

> said that since then he had treated 55 children with the Ponseti

> method.

>

> Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

project

> first got started that they felt that 6 months was about as late as

> they could start a child in the Ponseti method in Africa and so

they

> usually kind of just planned on the surgery if they were older than

> that. As they had been using the method, they had slowly been

trying

> it for children who came who were older and over 1 and been able to

> make it work, but had not considered that there was still a chance

to

> try to make it work out to 5 to 8 years of age in untreated feet.

>

> Mr. Steenbeek also presented a paper on his Ugandan FAB for use in

> developing countries where the cost of a US made FAB would be too

> expensive.

>

> Dr. Morcuende also presented some information about the U of Iowa's

> experience with using the Ponseti method in the treatment of

> Arthrogryposis. They indicated that from 1992 to 2001 that they

had

> been about 50% successful in avoiding posterior release types of

> surgery. They indicated that although surgery may be necessary, it

> is less extensive. Dr. Gotfried from Lubbock, Texas had also

> reported on his encouraging experience with the use of the Ponseti

> method for a few arthrogryposis children in his poster presented at

> the May 2002 POSNA meeting.

>

> The effect of having the 8 Ponseti method papers all one after

> another and all from different doctors and hospital groups and all

> essentially saying the same thing was very powerful. One doctor at

> the end said in a general question from the floor microphone, can

> anyone think of a reason not to try using the Ponseti method first

> before considering going toward a surgery.

>

> Also it appeared that there were a number there who had never

before

> heard of the Ponseti method. The main group of Ponseti method

papers

> were presented on Wednesday morning and at the end of the

conference

> that day, a number of doctors gathered in different parts of the

room

> around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> Steenbeek to try to learn the specific manipulation and casting

> technique and to get copies of the CD's that were available that

had

> the Ponseti method video and Uganda Clubfoot Project information.

I

> told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

they

> were all going to be very busy trying to help get information to

> people who were interested.

>

> Dr. Morcuende said that the Costa Rica Ponseti method project was

> going well and that he had been invited to go to a clinic in

> Columbia. The head of the Nigerian pediatric orthopedics was very

> interested in the Uganda Clubfoot Project. A doctor from Bombay

> India said that what he had learned was going to have a big impact

on

> what they did in the future.

>

> There was also one doctor I met during the 3 days there who

indicated

> to a group of doctors with me that his surgical skills were too

> valuable to be used in trying to conservatively cast a child's

feet.

> That if the casting techs couldn't learn how to do the Ponseti

method

> well enough that his time couldn't be spent doing it. He indicated

> that the money generated for hospitals that were already

financially

> strapped was in highly skilled ped ortho surgeons in doing

surgery.

> That they should be utilized in their most financially valuable

role

> and the role that they were trained for which was surgery. He also

> felt that the Ponseti method took too much time to spend on

> manipulation and casting. I thought that it was a fairly

surprising

> statement. I thought later that I should have mentioned that since

> most children were already being casted for 3-4 months prior to a

> surgery as well as 3 months post surgery anyway, that it might also

> be more economical to just cast for 2 months with the Ponseti

method

> and save the hospital some money by not having to cast as much.

>

> It was a great meeting and I was very grateful to be able to be

there

> and learn from all of the information presented. To try to go over

> all of the other papers will be much too long. If anyone has any

> specific questions about a paper from the title in the files

section

> please ask.

>

> and (3-17-99)

[Guest guest]

Jen,

Dr. Alvarez's paper was presented at the May 2002 POSNA meeting

(although she wasn't able to be there) in SLC as well as at this

meeting. I think that it is an interesting idea and may ultimately

be used by other ped orthos, but I think that it also fits with Dr.

Herzenbergs definition of an orthopedic surgeon as someone who

modifies a perfectly good treatment method the first time they use it.

At the U of Iowa, they have had 50 years of positive outcomes with no

problems because of the use of the tenotomy. So why would they take

a new patient and say " We have done something that has worked well

for 50 years, but instead we would like to use your child as an semi-

experiment to see if something else would work just as well as a

tenotomy. " So far, Dr. Alverez's group has used the Ponseti/Botox

method for about 1 year, and it has not yet been seen what will

happen in year 2, 3, 4 ... 30, 35, 40 years.

During the meeting Dr. Morcuende asked Dr. Alverez whether or not the

effect was attributable to the BOTOX or to the fact that they

recasted the feet 3-4 times after the BOTOX injection. He indicated

that at Iowa, that if they were to add an additional 3-4 casts, they

could also avoid the tenotomy, but that there would be an increased

risk for rockerbottom and for flattening the head of the talus which

does not occur with the use of a tenotomy.

Also BOTOX has been used previously with other casting methods as

well as with the French method at the Dallas Scotish Rite hospital.

Their initial published reports on BOTOX were positive. But

ultimately all of the 4 children it was used on at Dallas Scotish

Rite had relapses that required the surgery and that outcome was not

published.

The rest of this post is information from a prior post from July 9,

2002 at the Yahoo Clubfoot site.

Here is the home web page from the manufacturers or marketers of

BOTOX http://www.botox.com/index.jsp?cc & faq

There are certain uses for which the FDA has approved the use of

BOTOX. Once a drug is approved, doctors can also prescribe it for

other uses. BOTOX was being used for a number of years as a temporary

facial muscle relaxer, but only recently was FDA approved for that

use. It appears that BOTOX has been used since the late 1990's in

some orthopedic applications but at the moment I believe that those

are " off-label " uses that have not yet been specifically approved by

the FDA.

Here are some messages from other parents and web sites relating to

BOTOX and it's use in Clubfoot. There have been some parents who

felt that BOTOX was helpful and some who felt that ultimately it did

not work.

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5071

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5077

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5116

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5118

A study presented at the 1999 AAOS on the Use of BOTOX in heel cord

contracture management in Cerebral Palsy, I believe in older

children. " Studies to date indicate statistically significant short

term success but rapid recurrence within 2 months to 12 months ...

There was a 100% recurrence rate with the Botox® regime. "

http://www.aaos.org/wordhtml/anmeet99/sciprog/062.htm

The Texas ish Rite Hospital wrote a report on 4 children with

clubfoot for whom Botox had been used to try to avoid the surgery,

but have since discontinued Botox's use. I had talked to one of the

authors about the study and she indicated that all four of the

children that they treated with BOTOX had relapses that ultimately

lead to them having posterior release types of surgery. She was

still optimistic about the potential for the use of BOTOX someday and

for there being other studies done on the use of BOTOX for clubfoot.

http://www.applesforhealth.com/clubfeet1.html

There has recently, (in 2001-2002) been a doctor in Vancouver B.C.,

Canada who has been using a modified version of the Ponseti method

that uses Botox instead of a tenotomy.

http://www.cw.bc.ca/orthopaedics/botoxres.asp

She had a study published on the first year outcomes with BOTOX at

the recent 2002 POSNA Convention. Her study was titled

" BOTULINUM A TOXIN IN THE TREATMENT OF CLUBFEET: A PRELIMINARY REPORT

OF A PILOT STUDY "

C.M. Alvarez, S.J. Tredwell, R.D. Beauchamp and R. Choit*

(Dept of Orthopaedics, BCCH 4480 Oak St. Vancouver, BC V6H 3V4)

The study was looking at the use of BOTOX instead of tenotomy in a

modified version of the Ponseti method. One of their conclusions was

that " This study suggests that Botox is capable of defunctioning the

gastrocnemius and is sufficient to prevent clubfoot surgery in the

first year. " The study is followed by this statement - " The FDA has

not cleared the drug and/or medical device for the use described in

this presentation, (i.e., the drug or medical device is being

discussed for an " off label " use). "

The full study can be seen along with the other 2002 POSNA Clubfoot

studies in the files section of the Ponseti method parents support

web site at

http://groups.yahoo.com/group/nosurgery4clubfoot/files/ReferenceInform

ation4/ or I will be glad to e-mail you a copy of it.

The studies that have existed for the use of BOTOX for clubfoot so

far have seemed to be for use prior to a 1st surgery. My opinion is

that although BOTOX may hold some promise that it is still not a

proven established method and there are still no published results

out past one year. There are probably individual doctors that have

had other experience with BOTOX that has not yet been reported.

Also, I don't think that Dr. Alverez ever talked to any of the

doctors at the U of Iowa about using Botox with the Ponseti method.

And in the newspaper articles on Botox, the Ponseti method, which

sets up the whole initial correction, is never even mentioned.

But there are and probably will be children for whom BOTOX will be

helpful in the treatment for clubfoot. And perhaps ultimately, there

will be enough long term experience to back up the intial positive

one year outcomes.

and (3-17-99)

> > This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> > International Congress on Clubfoot at the San Diego Convention

> > Center. It was a part of the The International Society of

> > Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

> SICOT

> > describes itself as the worlds Orthopedic Organization whereas

the

> > AAOS is limited mostly to American orthopedists.

> > http://www.sicot2002.com/

> > The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> > (Chicago) and Dr. Duhaime (Canada)

> >

> > In February, Dr. Morcuende of the U of Iowa and I decided to try

to

> > write and submit a paper to the meeting about the influence of

the

> > internet in helping parents have information on clubfoot and

> > treatment alternatives. Our paper was accepted and I got the

> > opportunity to present it at the meeting in San Diego. Allyson,

> > Charity and were also able to attend some of the meetings.

> >

> > I will try to report here on some of the information that I

learned

> > from the meeting. It is possible that I may have misunderstood

> > someones position or statements and may not remember things

> exactly,

> > but these are my recollections of what I heard. If anyone feels

> that

> > I have missed something or misinterpreted it, please let me know

> and

> > I will try to correct it.

> >

> > There were 70 papers presented from 20 different countries. The

> > countries from which papers were presented were: USA (27), Canada

> > (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

> India

> > (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

> Korea,

> > Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> > doctors there that were from Norway, Germany, UK, Nigeria, S.

> Africa,

> > Mexico and probably a few other countries that I didn't know

about.

> >

> > The papers were sorted and presented by the following topics:

> > Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> > Classification (2), Outcome & Evaluation (4), Gait after Surgery

> (5),

> > Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> > method), French Method (4), Orthosis (2), Clubfoot Release (11),

> > Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

> Misc

> > (Arthrogryposis)(4). Three of the papers were also related to

the

> > Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> > Uganda was the lead story in the next days " Convention Newspaper " .

> >

> > Dr.'s that I knew who were in attendance who were Ponseti method

> > doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> > (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

> Lehman

> > (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> > (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

>

> > Alvarez (Ponseti/Botox - Vancouver), s &

> > (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

> and

> > del Campo (Mexico) and one from UCSD (San Diego). I assume that

> > there were also other Ponseti method doctors there but that I

> didn't

> > know who they were.

> >

> > Dr.'s there that were French method doctors included Dr's

Bensahel

> > (France), s & (French/Ponseti, Dallas), Exner

> > (Swiss). I assume that there were also others there who use the

> > French methods, but I didn't know who they were.

> >

> > There were also a number of surgical method doctors including

> Gennari

> > (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> > (Japan), Fernandez (Venezuela), (Shriners, Chicago),

Aroojis

> > (India) and about 15 others who presented surgically related

> papers.

> > There were probably also other surgically related doctors who I

> > didn't know who their names as well as some who may use

> combinations

> > of different methods.

> >

> > There were 15 papers presented during the meetings that were

> related

> > to the Ponseti method and included the following topics:

> >

> > Can the Internet Spare Children from Clubfoot Surgery? The

effect

> of

> > web-based information and parent support-groups on parent

treatment

> > choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

> >

> > Community Based Rehabilitation (CBR) in the Management of

Clubfoot

> > Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> > became the subject for the lead story in the next days Convention

> > Newspaper.

> >

> > A Reliable Method of Assessing the Amount of Deformity in the

> > Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> > (Canada)

> >

> > MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> > Pirani S (Canada)

> >

> > A Single Surgeon's Experience with the Ponseti Method for the

> > Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

> >

> > Ponseti Treatment of the Congenital Clubfoot: The New

Westminster

> > Experience. Pirani S (Canada)

> >

> > Efficacy of the Ponseti Method in the Treatment of Idiopathic

> Clubfoot

> > Morcuende JA, Dolan LA, Ponseti IV (USA)

> >

> > A Technical Note on the Ponseti Method: The Importance of the

> > Supination of the Forefoot in the Initial Cast to Reduce Cavus

> > Deformity. Frick S (USA)

> >

> > Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> > Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> > Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

> >

> > Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

> Report

> > of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ,

Beauchamp

> > RD, Choit R (Canada) This method is the Ponseti method except

for

> > the use of BOTOX instead of a tenotomy.

> >

> > Ponseti Method Treatment of Congenital Clubfoot in Older (4

Months)

> > Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick

SL

> > (USA)

> >

> > Conservative Treatment of Clubfoot After Walking Age. Lourenco

AF,

> > Prata SD, Sodre H, Milani C (Brasil)

> >

> > The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

> of

> > Deformity in Developing Nations During Treatment of Congenital

> > Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

> >

> > Initial Results of the Ponseti Method in Patients with Clubfoot

> > Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti

IV

> > (USA)

> >

> > I will put the outline and titles of all of the papers in the

files

> > section of the Ponseti method parents support group site which

can

> be

> > located at http://groups.yahoo.com/group/nosurgery4clubfoot/

> >

> > I was able to spend a few hours on monday with Dr.'s Ponseti,

> > Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> > hospital. Charity and Trenton were there as well as some other

S.

> > California internet parents who we had met at Dr. Colburns 1 1/2

> > years ago.

> >

> > I thought that the meetings on Tuesday and Wednesday were very

> > informative and that the Ponseti method was recieved very well by

> > those who were there. After our paper on the internet, there

were

> a

> > number of doctors that asked about the internet groups. I had

told

> > them that Clarrisa had assembled what I think is the greatest

> library

> > of internet information on clubfoot in the world on Parentsplace

> that

> > had links to sites on all subjects. One doctor said that most

of

> > what is on the internet shouldn't be trusted and that we should

be

> > censoring which sites get placed into our library. I indicated

> that

> > we didn't see it as our role to censor the information, but to

make

> > all the information we could find available so that parents could

> be

> > aware and that different subjects and questions could be

> discussed.

> > Our own Dr. son stood up and defended our efforts to

> > provide information on all clubfoot related topics to parents.

> >

> > There was a lot of new information in the different Ponseti

method

> > papers. I will try to summarize some of the new information.

> >

> > Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

> patients

> > with 95 clubfeet. There were 33 males and 22 females. Thirty

three

> > patients had been treated by others before going to see him with

an

> > average of 10 casts, (range of 3 to 20 casts by prior doctors).

> > Treatment was begun at his institution at an average of 14 weeks

of

> > age, (range 2-64 weeks). Six feet were corrected with serial

casts

> > alone. The remaining 89 feet were fully corrected after casting

> plus

> > a percutaneous heel cord tenotomy. Two patients required a

> posterior

> > ankle release after having been non-compliant with brace wear.

> >

> > Dr. Dobbs report included a study on non-compliance with the use

of

> > the FAB brace. Similar to the prior U of Iowa studies, most but

> not

> > all of the relapses they had were related to non-compliance with

> the

> > use of the FAB. They did a study on factors that seemed to

> correlate

> > with non-compliance and then used those to identify patients most

> > likely to have non-compliance problems. Then from the time of

> > initial casting they were able establish a method of reducing the

> > number affected by non-compliance and relapsing.

> >

> > The issue of the potential difficulty of getting parents to use

the

> > FAB was often a topic of questions of the doctors relating to the

> > Ponseti method.

> >

> > Dr. Frick's paper was on what he called the " Magic Move " of the

> > Ponseti method. He mentioned that a number of doctors he had

> talked

> > to said that they were trying the " Ponseti " method but that it

> wasn't

> > working as it was supposed to. He said that upon further

> questioning

> > of their method, he was able to find what he felt was a common

> error

> > in the way some doctors try to do the initial Ponseti method cast

> > that makes it much for difficult for them to have success. (It

is

> > also listed as one of Dr. Ponseti's common errors at his site as

> #1,2

> > Pronating instead of Supinating the foot)

> > http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

> >

> > Dr. Frick said that once he and other doctor get that initial

> > manipulaion move to supinate instead of pronate the foot in the

> first

> > casting that it sets up the balance of the foot correction in

later

> > casts to flow smoothly.

> >

> > Dr. Lehman said how they at NYU used to treat most of the

children

> > they saw surgically, but that now they almost never do. He said

> that

> > almost all of the clubfoot surgery he is now doing is treating

> > relapsed feet that were previously surgically treated.

> >

> > An extremely interesting Ponseti and Physiotherapy paper was by a

> Dr.

> > Lourenco of Brazil about conservative treatment of clubfoot after

> > walking age. He indicated that in Brazil, that there are

> tremendous

> > treatment resources for those who are wealthy but that the poor

> often

> > get no care. Over the past few years, he has been trying to

treat

> > older poor children who have had no prior treatment. He said

that

> > the financial resources have not existed for him to be able to do

> > surgery so that he has tried a physiotherapy/Ponseti-like casting

> > method for children from 5 to 8 years of age with very bad

> previously

> > untreated feet. Although it is not as good as it would have been

> if

> > treatment had been when they were little it is working and it is

> > currently those children's only alternative. I think all of the

> > Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

> the

> > Uganda clubfoot project were very amazed and feeling inspired by

> that

> > paper.

> >

> > I believe that it was Dr. Lourenco who told me that he had been

> doing

> > the surgical method in Brazil for his regular patients up until

> about

> > 2 years ago. He said that he had gotten a call from a fellow

> doctor

> > whose own child had just been born with clubfoot. This fellow

> doctor

> > said, " I want you to do all that you can to avoid the surgery. "

> Dr.

> > Lourenco had recently heard something about the Ponseti method,

> > investigated it further and used it for the other doctors child.

> He

> > said that since then he had treated 55 children with the Ponseti

> > method.

> >

> > Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

> project

> > first got started that they felt that 6 months was about as late

as

> > they could start a child in the Ponseti method in Africa and so

> they

> > usually kind of just planned on the surgery if they were older

than

> > that. As they had been using the method, they had slowly been

> trying

> > it for children who came who were older and over 1 and been able

to

> > make it work, but had not considered that there was still a

chance

> to

> > try to make it work out to 5 to 8 years of age in untreated feet.

> >

> > Mr. Steenbeek also presented a paper on his Ugandan FAB for use

in

> > developing countries where the cost of a US made FAB would be too

> > expensive.

> >

> > Dr. Morcuende also presented some information about the U of

Iowa's

> > experience with using the Ponseti method in the treatment of

> > Arthrogryposis. They indicated that from 1992 to 2001 that they

> had

> > been about 50% successful in avoiding posterior release types of

> > surgery. They indicated that although surgery may be necessary,

it

> > is less extensive. Dr. Gotfried from Lubbock, Texas had also

> > reported on his encouraging experience with the use of the

Ponseti

> > method for a few arthrogryposis children in his poster presented

at

> > the May 2002 POSNA meeting.

> >

> > The effect of having the 8 Ponseti method papers all one after

> > another and all from different doctors and hospital groups and

all

> > essentially saying the same thing was very powerful. One doctor

at

> > the end said in a general question from the floor microphone, can

> > anyone think of a reason not to try using the Ponseti method

first

> > before considering going toward a surgery.

> >

> > Also it appeared that there were a number there who had never

> before

> > heard of the Ponseti method. The main group of Ponseti method

> papers

> > were presented on Wednesday morning and at the end of the

> conference

> > that day, a number of doctors gathered in different parts of the

> room

> > around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> > Steenbeek to try to learn the specific manipulation and casting

> > technique and to get copies of the CD's that were available that

> had

> > the Ponseti method video and Uganda Clubfoot Project

information.

> I

> > told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

> they

> > were all going to be very busy trying to help get information to

> > people who were interested.

> >

> > Dr. Morcuende said that the Costa Rica Ponseti method project was

> > going well and that he had been invited to go to a clinic in

> > Columbia. The head of the Nigerian pediatric orthopedics was

very

> > interested in the Uganda Clubfoot Project. A doctor from Bombay

> > India said that what he had learned was going to have a big

impact

> on

> > what they did in the future.

> >

> > There was also one doctor I met during the 3 days there who

> indicated

> > to a group of doctors with me that his surgical skills were too

> > valuable to be used in trying to conservatively cast a child's

> feet.

> > That if the casting techs couldn't learn how to do the Ponseti

> method

> > well enough that his time couldn't be spent doing it. He

indicated

> > that the money generated for hospitals that were already

> financially

> > strapped was in highly skilled ped ortho surgeons in doing

> surgery.

> > That they should be utilized in their most financially valuable

> role

> > and the role that they were trained for which was surgery. He

also

> > felt that the Ponseti method took too much time to spend on

> > manipulation and casting. I thought that it was a fairly

> surprising

> > statement. I thought later that I should have mentioned that

since

> > most children were already being casted for 3-4 months prior to a

> > surgery as well as 3 months post surgery anyway, that it might

also

> > be more economical to just cast for 2 months with the Ponseti

> method

> > and save the hospital some money by not having to cast as much.

> >

> > It was a great meeting and I was very grateful to be able to be

> there

> > and learn from all of the information presented. To try to go

over

> > all of the other papers will be much too long. If anyone has any

> > specific questions about a paper from the title in the files

> section

> > please ask.

> >

> > and (3-17-99)

[Guest guest]

Jen,

Dr. Alvarez's paper was presented at the May 2002 POSNA meeting

(although she wasn't able to be there) in SLC as well as at this

meeting. I think that it is an interesting idea and may ultimately

be used by other ped orthos, but I think that it also fits with Dr.

Herzenbergs definition of an orthopedic surgeon as someone who

modifies a perfectly good treatment method the first time they use it.

At the U of Iowa, they have had 50 years of positive outcomes with no

problems because of the use of the tenotomy. So why would they take

a new patient and say " We have done something that has worked well

for 50 years, but instead we would like to use your child as an semi-

experiment to see if something else would work just as well as a

tenotomy. " So far, Dr. Alverez's group has used the Ponseti/Botox

method for about 1 year, and it has not yet been seen what will

happen in year 2, 3, 4 ... 30, 35, 40 years.

During the meeting Dr. Morcuende asked Dr. Alverez whether or not the

effect was attributable to the BOTOX or to the fact that they

recasted the feet 3-4 times after the BOTOX injection. He indicated

that at Iowa, that if they were to add an additional 3-4 casts, they

could also avoid the tenotomy, but that there would be an increased

risk for rockerbottom and for flattening the head of the talus which

does not occur with the use of a tenotomy.

Also BOTOX has been used previously with other casting methods as

well as with the French method at the Dallas Scotish Rite hospital.

Their initial published reports on BOTOX were positive. But

ultimately all of the 4 children it was used on at Dallas Scotish

Rite had relapses that required the surgery and that outcome was not

published.

The rest of this post is information from a prior post from July 9,

2002 at the Yahoo Clubfoot site.

Here is the home web page from the manufacturers or marketers of

BOTOX http://www.botox.com/index.jsp?cc & faq

There are certain uses for which the FDA has approved the use of

BOTOX. Once a drug is approved, doctors can also prescribe it for

other uses. BOTOX was being used for a number of years as a temporary

facial muscle relaxer, but only recently was FDA approved for that

use. It appears that BOTOX has been used since the late 1990's in

some orthopedic applications but at the moment I believe that those

are " off-label " uses that have not yet been specifically approved by

the FDA.

Here are some messages from other parents and web sites relating to

BOTOX and it's use in Clubfoot. There have been some parents who

felt that BOTOX was helpful and some who felt that ultimately it did

not work.

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5071

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5077

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5116

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5118

A study presented at the 1999 AAOS on the Use of BOTOX in heel cord

contracture management in Cerebral Palsy, I believe in older

children. " Studies to date indicate statistically significant short

term success but rapid recurrence within 2 months to 12 months ...

There was a 100% recurrence rate with the Botox® regime. "

http://www.aaos.org/wordhtml/anmeet99/sciprog/062.htm

The Texas ish Rite Hospital wrote a report on 4 children with

clubfoot for whom Botox had been used to try to avoid the surgery,

but have since discontinued Botox's use. I had talked to one of the

authors about the study and she indicated that all four of the

children that they treated with BOTOX had relapses that ultimately

lead to them having posterior release types of surgery. She was

still optimistic about the potential for the use of BOTOX someday and

for there being other studies done on the use of BOTOX for clubfoot.

http://www.applesforhealth.com/clubfeet1.html

There has recently, (in 2001-2002) been a doctor in Vancouver B.C.,

Canada who has been using a modified version of the Ponseti method

that uses Botox instead of a tenotomy.

http://www.cw.bc.ca/orthopaedics/botoxres.asp

She had a study published on the first year outcomes with BOTOX at

the recent 2002 POSNA Convention. Her study was titled

" BOTULINUM A TOXIN IN THE TREATMENT OF CLUBFEET: A PRELIMINARY REPORT

OF A PILOT STUDY "

C.M. Alvarez, S.J. Tredwell, R.D. Beauchamp and R. Choit*

(Dept of Orthopaedics, BCCH 4480 Oak St. Vancouver, BC V6H 3V4)

The study was looking at the use of BOTOX instead of tenotomy in a

modified version of the Ponseti method. One of their conclusions was

that " This study suggests that Botox is capable of defunctioning the

gastrocnemius and is sufficient to prevent clubfoot surgery in the

first year. " The study is followed by this statement - " The FDA has

not cleared the drug and/or medical device for the use described in

this presentation, (i.e., the drug or medical device is being

discussed for an " off label " use). "

The full study can be seen along with the other 2002 POSNA Clubfoot

studies in the files section of the Ponseti method parents support

web site at

http://groups.yahoo.com/group/nosurgery4clubfoot/files/ReferenceInform

ation4/ or I will be glad to e-mail you a copy of it.

The studies that have existed for the use of BOTOX for clubfoot so

far have seemed to be for use prior to a 1st surgery. My opinion is

that although BOTOX may hold some promise that it is still not a

proven established method and there are still no published results

out past one year. There are probably individual doctors that have

had other experience with BOTOX that has not yet been reported.

Also, I don't think that Dr. Alverez ever talked to any of the

doctors at the U of Iowa about using Botox with the Ponseti method.

And in the newspaper articles on Botox, the Ponseti method, which

sets up the whole initial correction, is never even mentioned.

But there are and probably will be children for whom BOTOX will be

helpful in the treatment for clubfoot. And perhaps ultimately, there

will be enough long term experience to back up the intial positive

one year outcomes.

and (3-17-99)

> > This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> > International Congress on Clubfoot at the San Diego Convention

> > Center. It was a part of the The International Society of

> > Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

> SICOT

> > describes itself as the worlds Orthopedic Organization whereas

the

> > AAOS is limited mostly to American orthopedists.

> > http://www.sicot2002.com/

> > The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> > (Chicago) and Dr. Duhaime (Canada)

> >

> > In February, Dr. Morcuende of the U of Iowa and I decided to try

to

> > write and submit a paper to the meeting about the influence of

the

> > internet in helping parents have information on clubfoot and

> > treatment alternatives. Our paper was accepted and I got the

> > opportunity to present it at the meeting in San Diego. Allyson,

> > Charity and were also able to attend some of the meetings.

> >

> > I will try to report here on some of the information that I

learned

> > from the meeting. It is possible that I may have misunderstood

> > someones position or statements and may not remember things

> exactly,

> > but these are my recollections of what I heard. If anyone feels

> that

> > I have missed something or misinterpreted it, please let me know

> and

> > I will try to correct it.

> >

> > There were 70 papers presented from 20 different countries. The

> > countries from which papers were presented were: USA (27), Canada

> > (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

> India

> > (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

> Korea,

> > Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> > doctors there that were from Norway, Germany, UK, Nigeria, S.

> Africa,

> > Mexico and probably a few other countries that I didn't know

about.

> >

> > The papers were sorted and presented by the following topics:

> > Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> > Classification (2), Outcome & Evaluation (4), Gait after Surgery

> (5),

> > Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> > method), French Method (4), Orthosis (2), Clubfoot Release (11),

> > Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

> Misc

> > (Arthrogryposis)(4). Three of the papers were also related to

the

> > Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> > Uganda was the lead story in the next days " Convention Newspaper " .

> >

> > Dr.'s that I knew who were in attendance who were Ponseti method

> > doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> > (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

> Lehman

> > (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> > (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

>

> > Alvarez (Ponseti/Botox - Vancouver), s &

> > (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

> and

> > del Campo (Mexico) and one from UCSD (San Diego). I assume that

> > there were also other Ponseti method doctors there but that I

> didn't

> > know who they were.

> >

> > Dr.'s there that were French method doctors included Dr's

Bensahel

> > (France), s & (French/Ponseti, Dallas), Exner

> > (Swiss). I assume that there were also others there who use the

> > French methods, but I didn't know who they were.

> >

> > There were also a number of surgical method doctors including

> Gennari

> > (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> > (Japan), Fernandez (Venezuela), (Shriners, Chicago),

Aroojis

> > (India) and about 15 others who presented surgically related

> papers.

> > There were probably also other surgically related doctors who I

> > didn't know who their names as well as some who may use

> combinations

> > of different methods.

> >

> > There were 15 papers presented during the meetings that were

> related

> > to the Ponseti method and included the following topics:

> >

> > Can the Internet Spare Children from Clubfoot Surgery? The

effect

> of

> > web-based information and parent support-groups on parent

treatment

> > choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

> >

> > Community Based Rehabilitation (CBR) in the Management of

Clubfoot

> > Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> > became the subject for the lead story in the next days Convention

> > Newspaper.

> >

> > A Reliable Method of Assessing the Amount of Deformity in the

> > Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> > (Canada)

> >

> > MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> > Pirani S (Canada)

> >

> > A Single Surgeon's Experience with the Ponseti Method for the

> > Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

> >

> > Ponseti Treatment of the Congenital Clubfoot: The New

Westminster

> > Experience. Pirani S (Canada)

> >

> > Efficacy of the Ponseti Method in the Treatment of Idiopathic

> Clubfoot

> > Morcuende JA, Dolan LA, Ponseti IV (USA)

> >

> > A Technical Note on the Ponseti Method: The Importance of the

> > Supination of the Forefoot in the Initial Cast to Reduce Cavus

> > Deformity. Frick S (USA)

> >

> > Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> > Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> > Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

> >

> > Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

> Report

> > of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ,

Beauchamp

> > RD, Choit R (Canada) This method is the Ponseti method except

for

> > the use of BOTOX instead of a tenotomy.

> >

> > Ponseti Method Treatment of Congenital Clubfoot in Older (4

Months)

> > Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick

SL

> > (USA)

> >

> > Conservative Treatment of Clubfoot After Walking Age. Lourenco

AF,

> > Prata SD, Sodre H, Milani C (Brasil)

> >

> > The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

> of

> > Deformity in Developing Nations During Treatment of Congenital

> > Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

> >

> > Initial Results of the Ponseti Method in Patients with Clubfoot

> > Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti

IV

> > (USA)

> >

> > I will put the outline and titles of all of the papers in the

files

> > section of the Ponseti method parents support group site which

can

> be

> > located at http://groups.yahoo.com/group/nosurgery4clubfoot/

> >

> > I was able to spend a few hours on monday with Dr.'s Ponseti,

> > Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> > hospital. Charity and Trenton were there as well as some other

S.

> > California internet parents who we had met at Dr. Colburns 1 1/2

> > years ago.

> >

> > I thought that the meetings on Tuesday and Wednesday were very

> > informative and that the Ponseti method was recieved very well by

> > those who were there. After our paper on the internet, there

were

> a

> > number of doctors that asked about the internet groups. I had

told

> > them that Clarrisa had assembled what I think is the greatest

> library

> > of internet information on clubfoot in the world on Parentsplace

> that

> > had links to sites on all subjects. One doctor said that most

of

> > what is on the internet shouldn't be trusted and that we should

be

> > censoring which sites get placed into our library. I indicated

> that

> > we didn't see it as our role to censor the information, but to

make

> > all the information we could find available so that parents could

> be

> > aware and that different subjects and questions could be

> discussed.

> > Our own Dr. son stood up and defended our efforts to

> > provide information on all clubfoot related topics to parents.

> >

> > There was a lot of new information in the different Ponseti

method

> > papers. I will try to summarize some of the new information.

> >

> > Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

> patients

> > with 95 clubfeet. There were 33 males and 22 females. Thirty

three

> > patients had been treated by others before going to see him with

an

> > average of 10 casts, (range of 3 to 20 casts by prior doctors).

> > Treatment was begun at his institution at an average of 14 weeks

of

> > age, (range 2-64 weeks). Six feet were corrected with serial

casts

> > alone. The remaining 89 feet were fully corrected after casting

> plus

> > a percutaneous heel cord tenotomy. Two patients required a

> posterior

> > ankle release after having been non-compliant with brace wear.

> >

> > Dr. Dobbs report included a study on non-compliance with the use

of

> > the FAB brace. Similar to the prior U of Iowa studies, most but

> not

> > all of the relapses they had were related to non-compliance with

> the

> > use of the FAB. They did a study on factors that seemed to

> correlate

> > with non-compliance and then used those to identify patients most

> > likely to have non-compliance problems. Then from the time of

> > initial casting they were able establish a method of reducing the

> > number affected by non-compliance and relapsing.

> >

> > The issue of the potential difficulty of getting parents to use

the

> > FAB was often a topic of questions of the doctors relating to the

> > Ponseti method.

> >

> > Dr. Frick's paper was on what he called the " Magic Move " of the

> > Ponseti method. He mentioned that a number of doctors he had

> talked

> > to said that they were trying the " Ponseti " method but that it

> wasn't

> > working as it was supposed to. He said that upon further

> questioning

> > of their method, he was able to find what he felt was a common

> error

> > in the way some doctors try to do the initial Ponseti method cast

> > that makes it much for difficult for them to have success. (It

is

> > also listed as one of Dr. Ponseti's common errors at his site as

> #1,2

> > Pronating instead of Supinating the foot)

> > http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

> >

> > Dr. Frick said that once he and other doctor get that initial

> > manipulaion move to supinate instead of pronate the foot in the

> first

> > casting that it sets up the balance of the foot correction in

later

> > casts to flow smoothly.

> >

> > Dr. Lehman said how they at NYU used to treat most of the

children

> > they saw surgically, but that now they almost never do. He said

> that

> > almost all of the clubfoot surgery he is now doing is treating

> > relapsed feet that were previously surgically treated.

> >

> > An extremely interesting Ponseti and Physiotherapy paper was by a

> Dr.

> > Lourenco of Brazil about conservative treatment of clubfoot after

> > walking age. He indicated that in Brazil, that there are

> tremendous

> > treatment resources for those who are wealthy but that the poor

> often

> > get no care. Over the past few years, he has been trying to

treat

> > older poor children who have had no prior treatment. He said

that

> > the financial resources have not existed for him to be able to do

> > surgery so that he has tried a physiotherapy/Ponseti-like casting

> > method for children from 5 to 8 years of age with very bad

> previously

> > untreated feet. Although it is not as good as it would have been

> if

> > treatment had been when they were little it is working and it is

> > currently those children's only alternative. I think all of the

> > Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

> the

> > Uganda clubfoot project were very amazed and feeling inspired by

> that

> > paper.

> >

> > I believe that it was Dr. Lourenco who told me that he had been

> doing

> > the surgical method in Brazil for his regular patients up until

> about

> > 2 years ago. He said that he had gotten a call from a fellow

> doctor

> > whose own child had just been born with clubfoot. This fellow

> doctor

> > said, " I want you to do all that you can to avoid the surgery. "

> Dr.

> > Lourenco had recently heard something about the Ponseti method,

> > investigated it further and used it for the other doctors child.

> He

> > said that since then he had treated 55 children with the Ponseti

> > method.

> >

> > Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

> project

> > first got started that they felt that 6 months was about as late

as

> > they could start a child in the Ponseti method in Africa and so

> they

> > usually kind of just planned on the surgery if they were older

than

> > that. As they had been using the method, they had slowly been

> trying

> > it for children who came who were older and over 1 and been able

to

> > make it work, but had not considered that there was still a

chance

> to

> > try to make it work out to 5 to 8 years of age in untreated feet.

> >

> > Mr. Steenbeek also presented a paper on his Ugandan FAB for use

in

> > developing countries where the cost of a US made FAB would be too

> > expensive.

> >

> > Dr. Morcuende also presented some information about the U of

Iowa's

> > experience with using the Ponseti method in the treatment of

> > Arthrogryposis. They indicated that from 1992 to 2001 that they

> had

> > been about 50% successful in avoiding posterior release types of

> > surgery. They indicated that although surgery may be necessary,

it

> > is less extensive. Dr. Gotfried from Lubbock, Texas had also

> > reported on his encouraging experience with the use of the

Ponseti

> > method for a few arthrogryposis children in his poster presented

at

> > the May 2002 POSNA meeting.

> >

> > The effect of having the 8 Ponseti method papers all one after

> > another and all from different doctors and hospital groups and

all

> > essentially saying the same thing was very powerful. One doctor

at

> > the end said in a general question from the floor microphone, can

> > anyone think of a reason not to try using the Ponseti method

first

> > before considering going toward a surgery.

> >

> > Also it appeared that there were a number there who had never

> before

> > heard of the Ponseti method. The main group of Ponseti method

> papers

> > were presented on Wednesday morning and at the end of the

> conference

> > that day, a number of doctors gathered in different parts of the

> room

> > around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> > Steenbeek to try to learn the specific manipulation and casting

> > technique and to get copies of the CD's that were available that

> had

> > the Ponseti method video and Uganda Clubfoot Project

information.

> I

> > told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

> they

> > were all going to be very busy trying to help get information to

> > people who were interested.

> >

> > Dr. Morcuende said that the Costa Rica Ponseti method project was

> > going well and that he had been invited to go to a clinic in

> > Columbia. The head of the Nigerian pediatric orthopedics was

very

> > interested in the Uganda Clubfoot Project. A doctor from Bombay

> > India said that what he had learned was going to have a big

impact

> on

> > what they did in the future.

> >

> > There was also one doctor I met during the 3 days there who

> indicated

> > to a group of doctors with me that his surgical skills were too

> > valuable to be used in trying to conservatively cast a child's

> feet.

> > That if the casting techs couldn't learn how to do the Ponseti

> method

> > well enough that his time couldn't be spent doing it. He

indicated

> > that the money generated for hospitals that were already

> financially

> > strapped was in highly skilled ped ortho surgeons in doing

> surgery.

> > That they should be utilized in their most financially valuable

> role

> > and the role that they were trained for which was surgery. He

also

> > felt that the Ponseti method took too much time to spend on

> > manipulation and casting. I thought that it was a fairly

> surprising

> > statement. I thought later that I should have mentioned that

since

> > most children were already being casted for 3-4 months prior to a

> > surgery as well as 3 months post surgery anyway, that it might

also

> > be more economical to just cast for 2 months with the Ponseti

> method

> > and save the hospital some money by not having to cast as much.

> >

> > It was a great meeting and I was very grateful to be able to be

> there

> > and learn from all of the information presented. To try to go

over

> > all of the other papers will be much too long. If anyone has any

> > specific questions about a paper from the title in the files

> section

> > please ask.

> >

> > and (3-17-99)

[Guest guest]

Jen,

Dr. Alvarez's paper was presented at the May 2002 POSNA meeting

(although she wasn't able to be there) in SLC as well as at this

meeting. I think that it is an interesting idea and may ultimately

be used by other ped orthos, but I think that it also fits with Dr.

Herzenbergs definition of an orthopedic surgeon as someone who

modifies a perfectly good treatment method the first time they use it.

At the U of Iowa, they have had 50 years of positive outcomes with no

problems because of the use of the tenotomy. So why would they take

a new patient and say " We have done something that has worked well

for 50 years, but instead we would like to use your child as an semi-

experiment to see if something else would work just as well as a

tenotomy. " So far, Dr. Alverez's group has used the Ponseti/Botox

method for about 1 year, and it has not yet been seen what will

happen in year 2, 3, 4 ... 30, 35, 40 years.

During the meeting Dr. Morcuende asked Dr. Alverez whether or not the

effect was attributable to the BOTOX or to the fact that they

recasted the feet 3-4 times after the BOTOX injection. He indicated

that at Iowa, that if they were to add an additional 3-4 casts, they

could also avoid the tenotomy, but that there would be an increased

risk for rockerbottom and for flattening the head of the talus which

does not occur with the use of a tenotomy.

Also BOTOX has been used previously with other casting methods as

well as with the French method at the Dallas Scotish Rite hospital.

Their initial published reports on BOTOX were positive. But

ultimately all of the 4 children it was used on at Dallas Scotish

Rite had relapses that required the surgery and that outcome was not

published.

The rest of this post is information from a prior post from July 9,

2002 at the Yahoo Clubfoot site.

Here is the home web page from the manufacturers or marketers of

BOTOX http://www.botox.com/index.jsp?cc & faq

There are certain uses for which the FDA has approved the use of

BOTOX. Once a drug is approved, doctors can also prescribe it for

other uses. BOTOX was being used for a number of years as a temporary

facial muscle relaxer, but only recently was FDA approved for that

use. It appears that BOTOX has been used since the late 1990's in

some orthopedic applications but at the moment I believe that those

are " off-label " uses that have not yet been specifically approved by

the FDA.

Here are some messages from other parents and web sites relating to

BOTOX and it's use in Clubfoot. There have been some parents who

felt that BOTOX was helpful and some who felt that ultimately it did

not work.

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5071

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5077

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5116

http://groups.yahoo.com/group/nosurgery4clubfoot/message/5118

A study presented at the 1999 AAOS on the Use of BOTOX in heel cord

contracture management in Cerebral Palsy, I believe in older

children. " Studies to date indicate statistically significant short

term success but rapid recurrence within 2 months to 12 months ...

There was a 100% recurrence rate with the Botox® regime. "

http://www.aaos.org/wordhtml/anmeet99/sciprog/062.htm

The Texas ish Rite Hospital wrote a report on 4 children with

clubfoot for whom Botox had been used to try to avoid the surgery,

but have since discontinued Botox's use. I had talked to one of the

authors about the study and she indicated that all four of the

children that they treated with BOTOX had relapses that ultimately

lead to them having posterior release types of surgery. She was

still optimistic about the potential for the use of BOTOX someday and

for there being other studies done on the use of BOTOX for clubfoot.

http://www.applesforhealth.com/clubfeet1.html

There has recently, (in 2001-2002) been a doctor in Vancouver B.C.,

Canada who has been using a modified version of the Ponseti method

that uses Botox instead of a tenotomy.

http://www.cw.bc.ca/orthopaedics/botoxres.asp

She had a study published on the first year outcomes with BOTOX at

the recent 2002 POSNA Convention. Her study was titled

" BOTULINUM A TOXIN IN THE TREATMENT OF CLUBFEET: A PRELIMINARY REPORT

OF A PILOT STUDY "

C.M. Alvarez, S.J. Tredwell, R.D. Beauchamp and R. Choit*

(Dept of Orthopaedics, BCCH 4480 Oak St. Vancouver, BC V6H 3V4)

The study was looking at the use of BOTOX instead of tenotomy in a

modified version of the Ponseti method. One of their conclusions was

that " This study suggests that Botox is capable of defunctioning the

gastrocnemius and is sufficient to prevent clubfoot surgery in the

first year. " The study is followed by this statement - " The FDA has

not cleared the drug and/or medical device for the use described in

this presentation, (i.e., the drug or medical device is being

discussed for an " off label " use). "

The full study can be seen along with the other 2002 POSNA Clubfoot

studies in the files section of the Ponseti method parents support

web site at

http://groups.yahoo.com/group/nosurgery4clubfoot/files/ReferenceInform

ation4/ or I will be glad to e-mail you a copy of it.

The studies that have existed for the use of BOTOX for clubfoot so

far have seemed to be for use prior to a 1st surgery. My opinion is

that although BOTOX may hold some promise that it is still not a

proven established method and there are still no published results

out past one year. There are probably individual doctors that have

had other experience with BOTOX that has not yet been reported.

Also, I don't think that Dr. Alverez ever talked to any of the

doctors at the U of Iowa about using Botox with the Ponseti method.

And in the newspaper articles on Botox, the Ponseti method, which

sets up the whole initial correction, is never even mentioned.

But there are and probably will be children for whom BOTOX will be

helpful in the treatment for clubfoot. And perhaps ultimately, there

will be enough long term experience to back up the intial positive

one year outcomes.

and (3-17-99)

> > This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> > International Congress on Clubfoot at the San Diego Convention

> > Center. It was a part of the The International Society of

> > Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

> SICOT

> > describes itself as the worlds Orthopedic Organization whereas

the

> > AAOS is limited mostly to American orthopedists.

> > http://www.sicot2002.com/

> > The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> > (Chicago) and Dr. Duhaime (Canada)

> >

> > In February, Dr. Morcuende of the U of Iowa and I decided to try

to

> > write and submit a paper to the meeting about the influence of

the

> > internet in helping parents have information on clubfoot and

> > treatment alternatives. Our paper was accepted and I got the

> > opportunity to present it at the meeting in San Diego. Allyson,

> > Charity and were also able to attend some of the meetings.

> >

> > I will try to report here on some of the information that I

learned

> > from the meeting. It is possible that I may have misunderstood

> > someones position or statements and may not remember things

> exactly,

> > but these are my recollections of what I heard. If anyone feels

> that

> > I have missed something or misinterpreted it, please let me know

> and

> > I will try to correct it.

> >

> > There were 70 papers presented from 20 different countries. The

> > countries from which papers were presented were: USA (27), Canada

> > (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

> India

> > (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

> Korea,

> > Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> > doctors there that were from Norway, Germany, UK, Nigeria, S.

> Africa,

> > Mexico and probably a few other countries that I didn't know

about.

> >

> > The papers were sorted and presented by the following topics:

> > Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> > Classification (2), Outcome & Evaluation (4), Gait after Surgery

> (5),

> > Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> > method), French Method (4), Orthosis (2), Clubfoot Release (11),

> > Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

> Misc

> > (Arthrogryposis)(4). Three of the papers were also related to

the

> > Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> > Uganda was the lead story in the next days " Convention Newspaper " .

> >

> > Dr.'s that I knew who were in attendance who were Ponseti method

> > doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> > (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

> Lehman

> > (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> > (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

>

> > Alvarez (Ponseti/Botox - Vancouver), s &

> > (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

> and

> > del Campo (Mexico) and one from UCSD (San Diego). I assume that

> > there were also other Ponseti method doctors there but that I

> didn't

> > know who they were.

> >

> > Dr.'s there that were French method doctors included Dr's

Bensahel

> > (France), s & (French/Ponseti, Dallas), Exner

> > (Swiss). I assume that there were also others there who use the

> > French methods, but I didn't know who they were.

> >

> > There were also a number of surgical method doctors including

> Gennari

> > (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> > (Japan), Fernandez (Venezuela), (Shriners, Chicago),

Aroojis

> > (India) and about 15 others who presented surgically related

> papers.

> > There were probably also other surgically related doctors who I

> > didn't know who their names as well as some who may use

> combinations

> > of different methods.

> >

> > There were 15 papers presented during the meetings that were

> related

> > to the Ponseti method and included the following topics:

> >

> > Can the Internet Spare Children from Clubfoot Surgery? The

effect

> of

> > web-based information and parent support-groups on parent

treatment

> > choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

> >

> > Community Based Rehabilitation (CBR) in the Management of

Clubfoot

> > Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> > became the subject for the lead story in the next days Convention

> > Newspaper.

> >

> > A Reliable Method of Assessing the Amount of Deformity in the

> > Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> > (Canada)

> >

> > MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> > Pirani S (Canada)

> >

> > A Single Surgeon's Experience with the Ponseti Method for the

> > Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

> >

> > Ponseti Treatment of the Congenital Clubfoot: The New

Westminster

> > Experience. Pirani S (Canada)

> >

> > Efficacy of the Ponseti Method in the Treatment of Idiopathic

> Clubfoot

> > Morcuende JA, Dolan LA, Ponseti IV (USA)

> >

> > A Technical Note on the Ponseti Method: The Importance of the

> > Supination of the Forefoot in the Initial Cast to Reduce Cavus

> > Deformity. Frick S (USA)

> >

> > Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> > Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> > Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

> >

> > Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

> Report

> > of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ,

Beauchamp

> > RD, Choit R (Canada) This method is the Ponseti method except

for

> > the use of BOTOX instead of a tenotomy.

> >

> > Ponseti Method Treatment of Congenital Clubfoot in Older (4

Months)

> > Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick

SL

> > (USA)

> >

> > Conservative Treatment of Clubfoot After Walking Age. Lourenco

AF,

> > Prata SD, Sodre H, Milani C (Brasil)

> >

> > The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

> of

> > Deformity in Developing Nations During Treatment of Congenital

> > Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

> >

> > Initial Results of the Ponseti Method in Patients with Clubfoot

> > Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti

IV

> > (USA)

> >

> > I will put the outline and titles of all of the papers in the

files

> > section of the Ponseti method parents support group site which

can

> be

> > located at http://groups.yahoo.com/group/nosurgery4clubfoot/

> >

> > I was able to spend a few hours on monday with Dr.'s Ponseti,

> > Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> > hospital. Charity and Trenton were there as well as some other

S.

> > California internet parents who we had met at Dr. Colburns 1 1/2

> > years ago.

> >

> > I thought that the meetings on Tuesday and Wednesday were very

> > informative and that the Ponseti method was recieved very well by

> > those who were there. After our paper on the internet, there

were

> a

> > number of doctors that asked about the internet groups. I had

told

> > them that Clarrisa had assembled what I think is the greatest

> library

> > of internet information on clubfoot in the world on Parentsplace

> that

> > had links to sites on all subjects. One doctor said that most

of

> > what is on the internet shouldn't be trusted and that we should

be

> > censoring which sites get placed into our library. I indicated

> that

> > we didn't see it as our role to censor the information, but to

make

> > all the information we could find available so that parents could

> be

> > aware and that different subjects and questions could be

> discussed.

> > Our own Dr. son stood up and defended our efforts to

> > provide information on all clubfoot related topics to parents.

> >

> > There was a lot of new information in the different Ponseti

method

> > papers. I will try to summarize some of the new information.

> >

> > Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

> patients

> > with 95 clubfeet. There were 33 males and 22 females. Thirty

three

> > patients had been treated by others before going to see him with

an

> > average of 10 casts, (range of 3 to 20 casts by prior doctors).

> > Treatment was begun at his institution at an average of 14 weeks

of

> > age, (range 2-64 weeks). Six feet were corrected with serial

casts

> > alone. The remaining 89 feet were fully corrected after casting

> plus

> > a percutaneous heel cord tenotomy. Two patients required a

> posterior

> > ankle release after having been non-compliant with brace wear.

> >

> > Dr. Dobbs report included a study on non-compliance with the use

of

> > the FAB brace. Similar to the prior U of Iowa studies, most but

> not

> > all of the relapses they had were related to non-compliance with

> the

> > use of the FAB. They did a study on factors that seemed to

> correlate

> > with non-compliance and then used those to identify patients most

> > likely to have non-compliance problems. Then from the time of

> > initial casting they were able establish a method of reducing the

> > number affected by non-compliance and relapsing.

> >

> > The issue of the potential difficulty of getting parents to use

the

> > FAB was often a topic of questions of the doctors relating to the

> > Ponseti method.

> >

> > Dr. Frick's paper was on what he called the " Magic Move " of the

> > Ponseti method. He mentioned that a number of doctors he had

> talked

> > to said that they were trying the " Ponseti " method but that it

> wasn't

> > working as it was supposed to. He said that upon further

> questioning

> > of their method, he was able to find what he felt was a common

> error

> > in the way some doctors try to do the initial Ponseti method cast

> > that makes it much for difficult for them to have success. (It

is

> > also listed as one of Dr. Ponseti's common errors at his site as

> #1,2

> > Pronating instead of Supinating the foot)

> > http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

> >

> > Dr. Frick said that once he and other doctor get that initial

> > manipulaion move to supinate instead of pronate the foot in the

> first

> > casting that it sets up the balance of the foot correction in

later

> > casts to flow smoothly.

> >

> > Dr. Lehman said how they at NYU used to treat most of the

children

> > they saw surgically, but that now they almost never do. He said

> that

> > almost all of the clubfoot surgery he is now doing is treating

> > relapsed feet that were previously surgically treated.

> >

> > An extremely interesting Ponseti and Physiotherapy paper was by a

> Dr.

> > Lourenco of Brazil about conservative treatment of clubfoot after

> > walking age. He indicated that in Brazil, that there are

> tremendous

> > treatment resources for those who are wealthy but that the poor

> often

> > get no care. Over the past few years, he has been trying to

treat

> > older poor children who have had no prior treatment. He said

that

> > the financial resources have not existed for him to be able to do

> > surgery so that he has tried a physiotherapy/Ponseti-like casting

> > method for children from 5 to 8 years of age with very bad

> previously

> > untreated feet. Although it is not as good as it would have been

> if

> > treatment had been when they were little it is working and it is

> > currently those children's only alternative. I think all of the

> > Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

> the

> > Uganda clubfoot project were very amazed and feeling inspired by

> that

> > paper.

> >

> > I believe that it was Dr. Lourenco who told me that he had been

> doing

> > the surgical method in Brazil for his regular patients up until

> about

> > 2 years ago. He said that he had gotten a call from a fellow

> doctor

> > whose own child had just been born with clubfoot. This fellow

> doctor

> > said, " I want you to do all that you can to avoid the surgery. "

> Dr.

> > Lourenco had recently heard something about the Ponseti method,

> > investigated it further and used it for the other doctors child.

> He

> > said that since then he had treated 55 children with the Ponseti

> > method.

> >

> > Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

> project

> > first got started that they felt that 6 months was about as late

as

> > they could start a child in the Ponseti method in Africa and so

> they

> > usually kind of just planned on the surgery if they were older

than

> > that. As they had been using the method, they had slowly been

> trying

> > it for children who came who were older and over 1 and been able

to

> > make it work, but had not considered that there was still a

chance

> to

> > try to make it work out to 5 to 8 years of age in untreated feet.

> >

> > Mr. Steenbeek also presented a paper on his Ugandan FAB for use

in

> > developing countries where the cost of a US made FAB would be too

> > expensive.

> >

> > Dr. Morcuende also presented some information about the U of

Iowa's

> > experience with using the Ponseti method in the treatment of

> > Arthrogryposis. They indicated that from 1992 to 2001 that they

> had

> > been about 50% successful in avoiding posterior release types of

> > surgery. They indicated that although surgery may be necessary,

it

> > is less extensive. Dr. Gotfried from Lubbock, Texas had also

> > reported on his encouraging experience with the use of the

Ponseti

> > method for a few arthrogryposis children in his poster presented

at

> > the May 2002 POSNA meeting.

> >

> > The effect of having the 8 Ponseti method papers all one after

> > another and all from different doctors and hospital groups and

all

> > essentially saying the same thing was very powerful. One doctor

at

> > the end said in a general question from the floor microphone, can

> > anyone think of a reason not to try using the Ponseti method

first

> > before considering going toward a surgery.

> >

> > Also it appeared that there were a number there who had never

> before

> > heard of the Ponseti method. The main group of Ponseti method

> papers

> > were presented on Wednesday morning and at the end of the

> conference

> > that day, a number of doctors gathered in different parts of the

> room

> > around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> > Steenbeek to try to learn the specific manipulation and casting

> > technique and to get copies of the CD's that were available that

> had

> > the Ponseti method video and Uganda Clubfoot Project

information.

> I

> > told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

> they

> > were all going to be very busy trying to help get information to

> > people who were interested.

> >

> > Dr. Morcuende said that the Costa Rica Ponseti method project was

> > going well and that he had been invited to go to a clinic in

> > Columbia. The head of the Nigerian pediatric orthopedics was

very

> > interested in the Uganda Clubfoot Project. A doctor from Bombay

> > India said that what he had learned was going to have a big

impact

> on

> > what they did in the future.

> >

> > There was also one doctor I met during the 3 days there who

> indicated

> > to a group of doctors with me that his surgical skills were too

> > valuable to be used in trying to conservatively cast a child's

> feet.

> > That if the casting techs couldn't learn how to do the Ponseti

> method

> > well enough that his time couldn't be spent doing it. He

indicated

> > that the money generated for hospitals that were already

> financially

> > strapped was in highly skilled ped ortho surgeons in doing

> surgery.

> > That they should be utilized in their most financially valuable

> role

> > and the role that they were trained for which was surgery. He

also

> > felt that the Ponseti method took too much time to spend on

> > manipulation and casting. I thought that it was a fairly

> surprising

> > statement. I thought later that I should have mentioned that

since

> > most children were already being casted for 3-4 months prior to a

> > surgery as well as 3 months post surgery anyway, that it might

also

> > be more economical to just cast for 2 months with the Ponseti

> method

> > and save the hospital some money by not having to cast as much.

> >

> > It was a great meeting and I was very grateful to be able to be

> there

> > and learn from all of the information presented. To try to go

over

> > all of the other papers will be much too long. If anyone has any

> > specific questions about a paper from the title in the files

> section

> > please ask.

> >

> > and (3-17-99)

[Guest guest]

I would actually be a bit more positive about botox and less critical

of Alvarez. I can see a reason to explore it as an

alternative to tenotomy after having operated on two patients who had

had previous tenotomies (actually, I've re-operated on more than two

thinking of my CP practice, although these kids usually have three

half tendon cuts rather than a complete tenotomy as the index

procedure). The tendon is not normal, it is woody and scarred

although much better than had it been " Z-lengthened " which is usual

in a formal Posterior-medial-release. I operated on a 23 month 10

days ago who had lost her dorsiflexion after 2 tenotomies. This

family had been unable to comply with the foot abduction orthosis.

When I " got in " to the area of the heel cord, it was completely stuck

to the surrounding tissues. When I took down the adhesions, suddenly

she had 10 degrees of dorsiflexion. I really wanted a bit more

dorsiflexion but didn't want to do a Z-lengthing. Because of the

scarring from the previous tenotomies, her tendon was not able

to " slide " (this is how a 3-cut lengthining works). Instead I made a

little half cut way above the site of the tenotomy and got just that

little bit more stretch without doing a major release.

Now, had I " botoxed " this girl, she might have needed two injections

over 6 or 8 months but would have had a more normal tendon (you can

get scarring with lots of injections, more than 2). My philosophy

about botox is that you have to be aware that it wears off and you

have to " use " the time when it is effective to make functional

gains. So if you can keep a heel cord limber until the child is

walking it may get you very far ahead. I would not prescribe it

without a motivated family and therapist who would work on stretching

at the same time.

So, there is a reason for some centers to be exploring this option.

Botox was not available for this purpose when Dr. P was developing

his method. I would say that those who " tinker " would tend to be

changing the actual manipulative or casting method - eg a large

Canadian center that appears to be doing a " Ponseti " style

manipulation but is then using short AFOs, something that Ponseti has

tried and abandoned.

As for the publicity received, I think that the tone of the

article was unfortunate and directed by the reporter. After all,

botox is " sexy " right now and the media haven't cottonned on to the

much more interesting story that starts in Iowa. I'm still working

on my journalist-buddies for that one.

son

[Guest guest]

I would actually be a bit more positive about botox and less critical

of Alvarez. I can see a reason to explore it as an

alternative to tenotomy after having operated on two patients who had

had previous tenotomies (actually, I've re-operated on more than two

thinking of my CP practice, although these kids usually have three

half tendon cuts rather than a complete tenotomy as the index

procedure). The tendon is not normal, it is woody and scarred

although much better than had it been " Z-lengthened " which is usual

in a formal Posterior-medial-release. I operated on a 23 month 10

days ago who had lost her dorsiflexion after 2 tenotomies. This

family had been unable to comply with the foot abduction orthosis.

When I " got in " to the area of the heel cord, it was completely stuck

to the surrounding tissues. When I took down the adhesions, suddenly

she had 10 degrees of dorsiflexion. I really wanted a bit more

dorsiflexion but didn't want to do a Z-lengthing. Because of the

scarring from the previous tenotomies, her tendon was not able

to " slide " (this is how a 3-cut lengthining works). Instead I made a

little half cut way above the site of the tenotomy and got just that

little bit more stretch without doing a major release.

Now, had I " botoxed " this girl, she might have needed two injections

over 6 or 8 months but would have had a more normal tendon (you can

get scarring with lots of injections, more than 2). My philosophy

about botox is that you have to be aware that it wears off and you

have to " use " the time when it is effective to make functional

gains. So if you can keep a heel cord limber until the child is

walking it may get you very far ahead. I would not prescribe it

without a motivated family and therapist who would work on stretching

at the same time.

So, there is a reason for some centers to be exploring this option.

Botox was not available for this purpose when Dr. P was developing

his method. I would say that those who " tinker " would tend to be

changing the actual manipulative or casting method - eg a large

Canadian center that appears to be doing a " Ponseti " style

manipulation but is then using short AFOs, something that Ponseti has

tried and abandoned.

As for the publicity received, I think that the tone of the

article was unfortunate and directed by the reporter. After all,

botox is " sexy " right now and the media haven't cottonned on to the

much more interesting story that starts in Iowa. I'm still working

on my journalist-buddies for that one.

son

[Guest guest]

I certainly appreciate the opinions. Back when we were doing the

physiotherapy method botox was discussed a bit but not used. I was

given an opinion at that point that questioned its safety, especially

for infants.

If there is one thing I have learned from 8 months of ultimately

ineffective physiotherapy/taping/splinting, a grueling trip with 2

kids to Iowa from Japan, and reading all of the interesting

outlines/papers from these different conferences...it's that medicine

is certainly a practice...and it's great to be an informed parent.

Where would most of us be without access to this great information?

It's also so wonderful to know that there are physicians out there

that really care. I never cease to be amazed that an 87 year old

doctor takes the time to respond so quickly to my e-mails about Cal's

feet/look at pictures and videotape that I send to him.

Back in April when we were becoming concerned that he wasn't making

additional progress, I sent the same letter and videotape to our

doctor in the States, and Dr. Ponseti. Dr. Ponseti responded to us

via e-mail within a few days. Our original doc, Harvard-educated and

great reputation, never responded, even after follow-up phone calls

and letters.....

Jen in Japan (Calvin 8-23-01, treated by Dr. Ponseti, almost out of

DBB full-time)

> I would actually be a bit more positive about botox and less

critical

> of Alvarez. I can see a reason to explore it as an

> alternative to tenotomy after having operated on two patients who

had

> had previous tenotomies (actually, I've re-operated on more than

two

> thinking of my CP practice, although these kids usually have three

> half tendon cuts rather than a complete tenotomy as the index

> procedure). The tendon is not normal, it is woody and scarred

> although much better than had it been " Z-lengthened " which is usual

> in a formal Posterior-medial-release. I operated on a 23 month 10

> days ago who had lost her dorsiflexion after 2 tenotomies. This

> family had been unable to comply with the foot abduction orthosis.

> When I " got in " to the area of the heel cord, it was completely

stuck

> to the surrounding tissues. When I took down the adhesions,

suddenly

> she had 10 degrees of dorsiflexion. I really wanted a bit more

> dorsiflexion but didn't want to do a Z-lengthing. Because of the

> scarring from the previous tenotomies, her tendon was not able

> to " slide " (this is how a 3-cut lengthining works). Instead I made

a

> little half cut way above the site of the tenotomy and got just

that

> little bit more stretch without doing a major release.

>

> Now, had I " botoxed " this girl, she might have needed two

injections

> over 6 or 8 months but would have had a more normal tendon (you can

> get scarring with lots of injections, more than 2). My philosophy

> about botox is that you have to be aware that it wears off and you

> have to " use " the time when it is effective to make functional

> gains. So if you can keep a heel cord limber until the child is

> walking it may get you very far ahead. I would not prescribe it

> without a motivated family and therapist who would work on

stretching

> at the same time.

>

> So, there is a reason for some centers to be exploring this

option.

> Botox was not available for this purpose when Dr. P was developing

> his method. I would say that those who " tinker " would tend to be

> changing the actual manipulative or casting method - eg a large

> Canadian center that appears to be doing a " Ponseti " style

> manipulation but is then using short AFOs, something that Ponseti

has

> tried and abandoned.

>

> As for the publicity received, I think that the tone of

the

> article was unfortunate and directed by the reporter. After all,

> botox is " sexy " right now and the media haven't cottonned on to the

> much more interesting story that starts in Iowa. I'm still

working

> on my journalist-buddies for that one.

>

> son

[Guest guest]

I certainly appreciate the opinions. Back when we were doing the

physiotherapy method botox was discussed a bit but not used. I was

given an opinion at that point that questioned its safety, especially

for infants.

If there is one thing I have learned from 8 months of ultimately

ineffective physiotherapy/taping/splinting, a grueling trip with 2

kids to Iowa from Japan, and reading all of the interesting

outlines/papers from these different conferences...it's that medicine

is certainly a practice...and it's great to be an informed parent.

Where would most of us be without access to this great information?

It's also so wonderful to know that there are physicians out there

that really care. I never cease to be amazed that an 87 year old

doctor takes the time to respond so quickly to my e-mails about Cal's

feet/look at pictures and videotape that I send to him.

Back in April when we were becoming concerned that he wasn't making

additional progress, I sent the same letter and videotape to our

doctor in the States, and Dr. Ponseti. Dr. Ponseti responded to us

via e-mail within a few days. Our original doc, Harvard-educated and

great reputation, never responded, even after follow-up phone calls

and letters.....

Jen in Japan (Calvin 8-23-01, treated by Dr. Ponseti, almost out of

DBB full-time)

> I would actually be a bit more positive about botox and less

critical

> of Alvarez. I can see a reason to explore it as an

> alternative to tenotomy after having operated on two patients who

had

> had previous tenotomies (actually, I've re-operated on more than

two

> thinking of my CP practice, although these kids usually have three

> half tendon cuts rather than a complete tenotomy as the index

> procedure). The tendon is not normal, it is woody and scarred

> although much better than had it been " Z-lengthened " which is usual

> in a formal Posterior-medial-release. I operated on a 23 month 10

> days ago who had lost her dorsiflexion after 2 tenotomies. This

> family had been unable to comply with the foot abduction orthosis.

> When I " got in " to the area of the heel cord, it was completely

stuck

> to the surrounding tissues. When I took down the adhesions,

suddenly

> she had 10 degrees of dorsiflexion. I really wanted a bit more

> dorsiflexion but didn't want to do a Z-lengthing. Because of the

> scarring from the previous tenotomies, her tendon was not able

> to " slide " (this is how a 3-cut lengthining works). Instead I made

a

> little half cut way above the site of the tenotomy and got just

that

> little bit more stretch without doing a major release.

>

> Now, had I " botoxed " this girl, she might have needed two

injections

> over 6 or 8 months but would have had a more normal tendon (you can

> get scarring with lots of injections, more than 2). My philosophy

> about botox is that you have to be aware that it wears off and you

> have to " use " the time when it is effective to make functional

> gains. So if you can keep a heel cord limber until the child is

> walking it may get you very far ahead. I would not prescribe it

> without a motivated family and therapist who would work on

stretching

> at the same time.

>

> So, there is a reason for some centers to be exploring this

option.

> Botox was not available for this purpose when Dr. P was developing

> his method. I would say that those who " tinker " would tend to be

> changing the actual manipulative or casting method - eg a large

> Canadian center that appears to be doing a " Ponseti " style

> manipulation but is then using short AFOs, something that Ponseti

has

> tried and abandoned.

>

> As for the publicity received, I think that the tone of

the

> article was unfortunate and directed by the reporter. After all,

> botox is " sexy " right now and the media haven't cottonned on to the

> much more interesting story that starts in Iowa. I'm still

working

> on my journalist-buddies for that one.

>

> son

[Guest guest]

I certainly appreciate the opinions. Back when we were doing the

physiotherapy method botox was discussed a bit but not used. I was

given an opinion at that point that questioned its safety, especially

for infants.

If there is one thing I have learned from 8 months of ultimately

ineffective physiotherapy/taping/splinting, a grueling trip with 2

kids to Iowa from Japan, and reading all of the interesting

outlines/papers from these different conferences...it's that medicine

is certainly a practice...and it's great to be an informed parent.

Where would most of us be without access to this great information?

It's also so wonderful to know that there are physicians out there

that really care. I never cease to be amazed that an 87 year old

doctor takes the time to respond so quickly to my e-mails about Cal's

feet/look at pictures and videotape that I send to him.

Back in April when we were becoming concerned that he wasn't making

additional progress, I sent the same letter and videotape to our

doctor in the States, and Dr. Ponseti. Dr. Ponseti responded to us

via e-mail within a few days. Our original doc, Harvard-educated and

great reputation, never responded, even after follow-up phone calls

and letters.....

Jen in Japan (Calvin 8-23-01, treated by Dr. Ponseti, almost out of

DBB full-time)

> I would actually be a bit more positive about botox and less

critical

> of Alvarez. I can see a reason to explore it as an

> alternative to tenotomy after having operated on two patients who

had

> had previous tenotomies (actually, I've re-operated on more than

two

> thinking of my CP practice, although these kids usually have three

> half tendon cuts rather than a complete tenotomy as the index

> procedure). The tendon is not normal, it is woody and scarred

> although much better than had it been " Z-lengthened " which is usual

> in a formal Posterior-medial-release. I operated on a 23 month 10

> days ago who had lost her dorsiflexion after 2 tenotomies. This

> family had been unable to comply with the foot abduction orthosis.

> When I " got in " to the area of the heel cord, it was completely

stuck

> to the surrounding tissues. When I took down the adhesions,

suddenly

> she had 10 degrees of dorsiflexion. I really wanted a bit more

> dorsiflexion but didn't want to do a Z-lengthing. Because of the

> scarring from the previous tenotomies, her tendon was not able

> to " slide " (this is how a 3-cut lengthining works). Instead I made

a

> little half cut way above the site of the tenotomy and got just

that

> little bit more stretch without doing a major release.

>

> Now, had I " botoxed " this girl, she might have needed two

injections

> over 6 or 8 months but would have had a more normal tendon (you can

> get scarring with lots of injections, more than 2). My philosophy

> about botox is that you have to be aware that it wears off and you

> have to " use " the time when it is effective to make functional

> gains. So if you can keep a heel cord limber until the child is

> walking it may get you very far ahead. I would not prescribe it

> without a motivated family and therapist who would work on

stretching

> at the same time.

>

> So, there is a reason for some centers to be exploring this

option.

> Botox was not available for this purpose when Dr. P was developing

> his method. I would say that those who " tinker " would tend to be

> changing the actual manipulative or casting method - eg a large

> Canadian center that appears to be doing a " Ponseti " style

> manipulation but is then using short AFOs, something that Ponseti

has

> tried and abandoned.

>

> As for the publicity received, I think that the tone of

the

> article was unfortunate and directed by the reporter. After all,

> botox is " sexy " right now and the media haven't cottonned on to the

> much more interesting story that starts in Iowa. I'm still

working

> on my journalist-buddies for that one.

>

> son

[Guest guest]

, thanks for the info on the Congress. It was very interesting. I'm

frustrated by the doctor who said basically said his skills in surgery were

to valuable to try Ponseti. Does he not care at all about the patient and

what these children have to go through? Not to mention complications years

down the road.

You mentioned a Dr. (Cleveland), I suppose that is Cleveland OH.

Can you tell me more about him or her? We live in Ohio and couldn't find

anyone who practiced Ponseti a year ago?

Thanks,

Joanne

[Guest guest]

Dr. is with Rainbow Babies Children's Hospital in

Cleveland. He is one of 5 ped ortho surgeons there and his hospital

web site is at http://www.uhrainbow.com/directory/faculty.asp?

FacID=136

Dr. was the moderator for the intial 6 papers of the program

at the Clubfoot Congress and later presented a study on their use of

the Anterior Tibial Tendon Transfer (ATTT) for 76 patients with

relapsed clubfoot between 1986 and 1998. I had also heard from a

doctor in Dallas a year ago that Dr. was a proponent of the

ATTT.

During the meetings, someone there told me that Dr. had been

using the Ponseti method for a year or two. I had wanted to go and

talk to him during the meetings to ask him myself but I kept getting

sidetracked and never got around to talking to him.

When our son was born, I had found and read 3 books on the treatment

of clubfoot. One was Dr. Ponseti's 1996 book " Congential Clubfoot,

Fundamentals of Treatment " , the second book was " Disorders of the

Foot and Ankle " 1991 edited by Melvin Jahss of NYU with a 2 chapters

on clubfoot. One chapter by 2 Duke University Professors and one

chapter by Dr. Lehman of NYU et. al.

The 3rd book was " The Child's Foot and Ankle " , edited by

Drennan, University of New Mexico, Raven Press, New York 1992

Chapter 5 - Congenital Talipes Eqinovarus (Clubfeet), by

, Case Western Reserve Hospital, Cleveland, Ohio; W.

Simons III, Medical College of Wisconsin, Milwaukee, Wisc.

with Chapter 6 also by Dr. Lehman of NYU et. al.

The 2 books chapters by the Duke professors and Dr.'s and

Simon were both on how to do the surgery and each book talked about

90% rates of surgery. Dr. Lehman's (et.al.) 2 chapters each talked

about how to avoid complications from the surgery and said that rates

of surgery should be less than 50% and also talked about how to do

2nd surgeries.

Within 6 months after our having gone to Iowa to have treated

there, Dr. Lehman visited Dr. Ponseti in Iowa, switched to the

Ponseti method and had helped get all of the doctors at NYU and a

number of other places to switch over as well.

Also, before going ever going to Iowa, I had talked to Dr. Drennan

who was at U of New Mexico who was the editor of one of the books.

Dr. Drennan said that he treated 90% of the children he saw

surgically. Dr. Drennan has since retired and his replacement Dr.

Schwend and the other doctors at U of New Mexico now use the Ponseti

method.

If Dr. of Cleveland has also switched over to the Ponseti

method then authors of 3/4's of the surgical treatment chapters I had

read 3 1/2 years ago will have switched over to the Ponseti method.

And the hospitals that both books editors were affiliated with have

also switched over to the Ponseti method. That would leave only the

doctors from Duke and perhaps the Dr. Simons from the Medical College

of Wisconsin to yet change over. The senior doctor from Duke has

since retired, but I have recently heard that Duke has still not

changed over. Three and 1/2 years ago, when I was trying to read and

understand each of those 3 books and figure out what we should do, I

would have never thought that almost all of them would have ended up

changing over to Dr. Ponseti's method. That as well that it would

happen in about 3 years.

I wish that I could have talked to Dr. personally just to

know for sure. Joanne, could you perhaps call the Rainbow Babies

Hospital in Cleveland and ask them if they and/or Dr. do use

the Ponseti method and let me know what they say.

and (3-17-99)

> , thanks for the info on the Congress. It was very

interesting. I'm

> frustrated by the doctor who said basically said his skills in

surgery were

> to valuable to try Ponseti. Does he not care at all about the

patient and

> what these children have to go through? Not to mention

complications years

> down the road.

>

> You mentioned a Dr. (Cleveland), I suppose that is

Cleveland OH.

> Can you tell me more about him or her? We live in Ohio and

couldn't find

> anyone who practiced Ponseti a year ago?

> Thanks,

> Joanne

[Guest guest]

This past week, I talked to Dr. Pirani (Vancouver B.C.)

He mentioned that this week on October 7th and 8th, that he and Dr.

Dietz (U of Iowa) were going to be at the Manchester, England Ponseti

method training clinic. It is being hosted by Dr. Rupert Ferdinand

and Dr. Naomi who are on Dr. Ponseti's list of doctors. Dr.

Pirani said that he had heard there were 100 (doctors and/or other

medical people) registered for the course.

In November, Dr. Pirani will be going back to Uganda for the 4th and

final year of the Uganda Clubfoot Project. After that, the project

is set up to be a self sustaining part of the Uganda medical system.

Dr. Pirani said that this November will mark the implementation of a

one year Malawi (Africa) Clubfoot Project. There was already a pilot

project established in Malawi and they have consolidated the training

system to make it so that all of the initial training in Malawi can

happen in just one year instead of 4 like in Uganda. After that, the

Malawi system is then supposed to be self-sustaining into the future.

Dr. Pirani also said that since the 3rd International Congress on

Clubfeet that he has had more interest from doctors in setting up

Ponseti / Uganda Clubfoot Project type programs in their countries.

Dr.'s from the following countries have expressed interest. Nigeria,

Ghana, Pakistan, India, Brazil and Haiti. In addition, the U of Iowa

has begun working on a program for Nicaragua in addition to their

training program with doctors in Costa Rica.

and (3-17-99)

> This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> International Congress on Clubfoot at the San Diego Convention

> Center. It was a part of the The International Society of

> Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

SICOT

> describes itself as the worlds Orthopedic Organization whereas the

> AAOS is limited mostly to American orthopedists.

> http://www.sicot2002.com/

> The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> (Chicago) and Dr. Duhaime (Canada)

>

> In February, Dr. Morcuende of the U of Iowa and I decided to try to

> write and submit a paper to the meeting about the influence of the

> internet in helping parents have information on clubfoot and

> treatment alternatives. Our paper was accepted and I got the

> opportunity to present it at the meeting in San Diego. Allyson,

> Charity and were also able to attend some of the meetings.

>

> I will try to report here on some of the information that I learned

> from the meeting. It is possible that I may have misunderstood

> someones position or statements and may not remember things

exactly,

> but these are my recollections of what I heard. If anyone feels

that

> I have missed something or misinterpreted it, please let me know

and

> I will try to correct it.

>

> There were 70 papers presented from 20 different countries. The

> countries from which papers were presented were: USA (27), Canada

> (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

India

> (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

Korea,

> Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> doctors there that were from Norway, Germany, UK, Nigeria, S.

Africa,

> Mexico and probably a few other countries that I didn't know about.

>

> The papers were sorted and presented by the following topics:

> Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> Classification (2), Outcome & Evaluation (4), Gait after Surgery

(5),

> Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> method), French Method (4), Orthosis (2), Clubfoot Release (11),

> Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

Misc

> (Arthrogryposis)(4). Three of the papers were also related to the

> Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> Uganda was the lead story in the next days " Convention Newspaper " .

>

> Dr.'s that I knew who were in attendance who were Ponseti method

> doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

Lehman

> (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

> Alvarez (Ponseti/Botox - Vancouver), s &

> (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

and

> del Campo (Mexico) and one from UCSD (San Diego). I assume that

> there were also other Ponseti method doctors there but that I

didn't

> know who they were.

>

> Dr.'s there that were French method doctors included Dr's Bensahel

> (France), s & (French/Ponseti, Dallas), Exner

> (Swiss). I assume that there were also others there who use the

> French methods, but I didn't know who they were.

>

> There were also a number of surgical method doctors including

Gennari

> (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> (Japan), Fernandez (Venezuela), (Shriners, Chicago), Aroojis

> (India) and about 15 others who presented surgically related

papers.

> There were probably also other surgically related doctors who I

> didn't know who their names as well as some who may use

combinations

> of different methods.

>

> There were 15 papers presented during the meetings that were

related

> to the Ponseti method and included the following topics:

>

> Can the Internet Spare Children from Clubfoot Surgery? The effect

of

> web-based information and parent support-groups on parent treatment

> choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

>

> Community Based Rehabilitation (CBR) in the Management of Clubfoot

> Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> became the subject for the lead story in the next days Convention

> Newspaper.

>

> A Reliable Method of Assessing the Amount of Deformity in the

> Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> (Canada)

>

> MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> Pirani S (Canada)

>

> A Single Surgeon's Experience with the Ponseti Method for the

> Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

>

> Ponseti Treatment of the Congenital Clubfoot: The New Westminster

> Experience. Pirani S (Canada)

>

> Efficacy of the Ponseti Method in the Treatment of Idiopathic

Clubfoot

> Morcuende JA, Dolan LA, Ponseti IV (USA)

>

> A Technical Note on the Ponseti Method: The Importance of the

> Supination of the Forefoot in the Initial Cast to Reduce Cavus

> Deformity. Frick S (USA)

>

> Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

>

> Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

Report

> of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ, Beauchamp

> RD, Choit R (Canada) This method is the Ponseti method except for

> the use of BOTOX instead of a tenotomy.

>

> Ponseti Method Treatment of Congenital Clubfoot in Older (4 Months)

> Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick SL

> (USA)

>

> Conservative Treatment of Clubfoot After Walking Age. Lourenco AF,

> Prata SD, Sodre H, Milani C (Brasil)

>

> The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

of

> Deformity in Developing Nations During Treatment of Congenital

> Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

>

> Initial Results of the Ponseti Method in Patients with Clubfoot

> Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti IV

> (USA)

>

> I will put the outline and titles of all of the papers in the files

> section of the Ponseti method parents support group site which can

be

> located at http://groups.yahoo.com/group/nosurgery4clubfoot/

>

> I was able to spend a few hours on monday with Dr.'s Ponseti,

> Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> hospital. Charity and Trenton were there as well as some other S.

> California internet parents who we had met at Dr. Colburns 1 1/2

> years ago.

>

> I thought that the meetings on Tuesday and Wednesday were very

> informative and that the Ponseti method was recieved very well by

> those who were there. After our paper on the internet, there were

a

> number of doctors that asked about the internet groups. I had told

> them that Clarrisa had assembled what I think is the greatest

library

> of internet information on clubfoot in the world on Parentsplace

that

> had links to sites on all subjects. One doctor said that most of

> what is on the internet shouldn't be trusted and that we should be

> censoring which sites get placed into our library. I indicated

that

> we didn't see it as our role to censor the information, but to make

> all the information we could find available so that parents could

be

> aware and that different subjects and questions could be

discussed.

> Our own Dr. son stood up and defended our efforts to

> provide information on all clubfoot related topics to parents.

>

> There was a lot of new information in the different Ponseti method

> papers. I will try to summarize some of the new information.

>

> Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

patients

> with 95 clubfeet. There were 33 males and 22 females. Thirty three

> patients had been treated by others before going to see him with an

> average of 10 casts, (range of 3 to 20 casts by prior doctors).

> Treatment was begun at his institution at an average of 14 weeks of

> age, (range 2-64 weeks). Six feet were corrected with serial casts

> alone. The remaining 89 feet were fully corrected after casting

plus

> a percutaneous heel cord tenotomy. Two patients required a

posterior

> ankle release after having been non-compliant with brace wear.

>

> Dr. Dobbs report included a study on non-compliance with the use of

> the FAB brace. Similar to the prior U of Iowa studies, most but

not

> all of the relapses they had were related to non-compliance with

the

> use of the FAB. They did a study on factors that seemed to

correlate

> with non-compliance and then used those to identify patients most

> likely to have non-compliance problems. Then from the time of

> initial casting they were able establish a method of reducing the

> number affected by non-compliance and relapsing.

>

> The issue of the potential difficulty of getting parents to use the

> FAB was often a topic of questions of the doctors relating to the

> Ponseti method.

>

> Dr. Frick's paper was on what he called the " Magic Move " of the

> Ponseti method. He mentioned that a number of doctors he had

talked

> to said that they were trying the " Ponseti " method but that it

wasn't

> working as it was supposed to. He said that upon further

questioning

> of their method, he was able to find what he felt was a common

error

> in the way some doctors try to do the initial Ponseti method cast

> that makes it much for difficult for them to have success. (It is

> also listed as one of Dr. Ponseti's common errors at his site as

#1,2

> Pronating instead of Supinating the foot)

> http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

>

> Dr. Frick said that once he and other doctor get that initial

> manipulaion move to supinate instead of pronate the foot in the

first

> casting that it sets up the balance of the foot correction in later

> casts to flow smoothly.

>

> Dr. Lehman said how they at NYU used to treat most of the children

> they saw surgically, but that now they almost never do. He said

that

> almost all of the clubfoot surgery he is now doing is treating

> relapsed feet that were previously surgically treated.

>

> An extremely interesting Ponseti and Physiotherapy paper was by a

Dr.

> Lourenco of Brazil about conservative treatment of clubfoot after

> walking age. He indicated that in Brazil, that there are

tremendous

> treatment resources for those who are wealthy but that the poor

often

> get no care. Over the past few years, he has been trying to treat

> older poor children who have had no prior treatment. He said that

> the financial resources have not existed for him to be able to do

> surgery so that he has tried a physiotherapy/Ponseti-like casting

> method for children from 5 to 8 years of age with very bad

previously

> untreated feet. Although it is not as good as it would have been

if

> treatment had been when they were little it is working and it is

> currently those children's only alternative. I think all of the

> Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

the

> Uganda clubfoot project were very amazed and feeling inspired by

that

> paper.

>

> I believe that it was Dr. Lourenco who told me that he had been

doing

> the surgical method in Brazil for his regular patients up until

about

> 2 years ago. He said that he had gotten a call from a fellow

doctor

> whose own child had just been born with clubfoot. This fellow

doctor

> said, " I want you to do all that you can to avoid the surgery. "

Dr.

> Lourenco had recently heard something about the Ponseti method,

> investigated it further and used it for the other doctors child.

He

> said that since then he had treated 55 children with the Ponseti

> method.

>

> Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

project

> first got started that they felt that 6 months was about as late as

> they could start a child in the Ponseti method in Africa and so

they

> usually kind of just planned on the surgery if they were older than

> that. As they had been using the method, they had slowly been

trying

> it for children who came who were older and over 1 and been able to

> make it work, but had not considered that there was still a chance

to

> try to make it work out to 5 to 8 years of age in untreated feet.

>

> Mr. Steenbeek also presented a paper on his Ugandan FAB for use in

> developing countries where the cost of a US made FAB would be too

> expensive.

>

> Dr. Morcuende also presented some information about the U of Iowa's

> experience with using the Ponseti method in the treatment of

> Arthrogryposis. They indicated that from 1992 to 2001 that they

had

> been about 50% successful in avoiding posterior release types of

> surgery. They indicated that although surgery may be necessary, it

> is less extensive. Dr. Gotfried from Lubbock, Texas had also

> reported on his encouraging experience with the use of the Ponseti

> method for a few arthrogryposis children in his poster presented at

> the May 2002 POSNA meeting.

>

> The effect of having the 8 Ponseti method papers all one after

> another and all from different doctors and hospital groups and all

> essentially saying the same thing was very powerful. One doctor at

> the end said in a general question from the floor microphone, can

> anyone think of a reason not to try using the Ponseti method first

> before considering going toward a surgery.

>

> Also it appeared that there were a number there who had never

before

> heard of the Ponseti method. The main group of Ponseti method

papers

> were presented on Wednesday morning and at the end of the

conference

> that day, a number of doctors gathered in different parts of the

room

> around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> Steenbeek to try to learn the specific manipulation and casting

> technique and to get copies of the CD's that were available that

had

> the Ponseti method video and Uganda Clubfoot Project information.

I

> told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

they

> were all going to be very busy trying to help get information to

> people who were interested.

>

> Dr. Morcuende said that the Costa Rica Ponseti method project was

> going well and that he had been invited to go to a clinic in

> Columbia. The head of the Nigerian pediatric orthopedics was very

> interested in the Uganda Clubfoot Project. A doctor from Bombay

> India said that what he had learned was going to have a big impact

on

> what they did in the future.

>

> There was also one doctor I met during the 3 days there who

indicated

> to a group of doctors with me that his surgical skills were too

> valuable to be used in trying to conservatively cast a child's

feet.

> That if the casting techs couldn't learn how to do the Ponseti

method

> well enough that his time couldn't be spent doing it. He indicated

> that the money generated for hospitals that were already

financially

> strapped was in highly skilled ped ortho surgeons in doing

surgery.

> That they should be utilized in their most financially valuable

role

> and the role that they were trained for which was surgery. He also

> felt that the Ponseti method took too much time to spend on

> manipulation and casting. I thought that it was a fairly

surprising

> statement. I thought later that I should have mentioned that since

> most children were already being casted for 3-4 months prior to a

> surgery as well as 3 months post surgery anyway, that it might also

> be more economical to just cast for 2 months with the Ponseti

method

> and save the hospital some money by not having to cast as much.

>

> It was a great meeting and I was very grateful to be able to be

there

> and learn from all of the information presented. To try to go over

> all of the other papers will be much too long. If anyone has any

> specific questions about a paper from the title in the files

section

> please ask.

>

> and (3-17-99)

[Guest guest]

This past week, I talked to Dr. Pirani (Vancouver B.C.)

He mentioned that this week on October 7th and 8th, that he and Dr.

Dietz (U of Iowa) were going to be at the Manchester, England Ponseti

method training clinic. It is being hosted by Dr. Rupert Ferdinand

and Dr. Naomi who are on Dr. Ponseti's list of doctors. Dr.

Pirani said that he had heard there were 100 (doctors and/or other

medical people) registered for the course.

In November, Dr. Pirani will be going back to Uganda for the 4th and

final year of the Uganda Clubfoot Project. After that, the project

is set up to be a self sustaining part of the Uganda medical system.

Dr. Pirani said that this November will mark the implementation of a

one year Malawi (Africa) Clubfoot Project. There was already a pilot

project established in Malawi and they have consolidated the training

system to make it so that all of the initial training in Malawi can

happen in just one year instead of 4 like in Uganda. After that, the

Malawi system is then supposed to be self-sustaining into the future.

Dr. Pirani also said that since the 3rd International Congress on

Clubfeet that he has had more interest from doctors in setting up

Ponseti / Uganda Clubfoot Project type programs in their countries.

Dr.'s from the following countries have expressed interest. Nigeria,

Ghana, Pakistan, India, Brazil and Haiti. In addition, the U of Iowa

has begun working on a program for Nicaragua in addition to their

training program with doctors in Costa Rica.

and (3-17-99)

> This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> International Congress on Clubfoot at the San Diego Convention

> Center. It was a part of the The International Society of

> Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

SICOT

> describes itself as the worlds Orthopedic Organization whereas the

> AAOS is limited mostly to American orthopedists.

> http://www.sicot2002.com/

> The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> (Chicago) and Dr. Duhaime (Canada)

>

> In February, Dr. Morcuende of the U of Iowa and I decided to try to

> write and submit a paper to the meeting about the influence of the

> internet in helping parents have information on clubfoot and

> treatment alternatives. Our paper was accepted and I got the

> opportunity to present it at the meeting in San Diego. Allyson,

> Charity and were also able to attend some of the meetings.

>

> I will try to report here on some of the information that I learned

> from the meeting. It is possible that I may have misunderstood

> someones position or statements and may not remember things

exactly,

> but these are my recollections of what I heard. If anyone feels

that

> I have missed something or misinterpreted it, please let me know

and

> I will try to correct it.

>

> There were 70 papers presented from 20 different countries. The

> countries from which papers were presented were: USA (27), Canada

> (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

India

> (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

Korea,

> Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> doctors there that were from Norway, Germany, UK, Nigeria, S.

Africa,

> Mexico and probably a few other countries that I didn't know about.

>

> The papers were sorted and presented by the following topics:

> Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> Classification (2), Outcome & Evaluation (4), Gait after Surgery

(5),

> Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> method), French Method (4), Orthosis (2), Clubfoot Release (11),

> Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

Misc

> (Arthrogryposis)(4). Three of the papers were also related to the

> Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> Uganda was the lead story in the next days " Convention Newspaper " .

>

> Dr.'s that I knew who were in attendance who were Ponseti method

> doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

Lehman

> (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

> Alvarez (Ponseti/Botox - Vancouver), s &

> (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

and

> del Campo (Mexico) and one from UCSD (San Diego). I assume that

> there were also other Ponseti method doctors there but that I

didn't

> know who they were.

>

> Dr.'s there that were French method doctors included Dr's Bensahel

> (France), s & (French/Ponseti, Dallas), Exner

> (Swiss). I assume that there were also others there who use the

> French methods, but I didn't know who they were.

>

> There were also a number of surgical method doctors including

Gennari

> (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> (Japan), Fernandez (Venezuela), (Shriners, Chicago), Aroojis

> (India) and about 15 others who presented surgically related

papers.

> There were probably also other surgically related doctors who I

> didn't know who their names as well as some who may use

combinations

> of different methods.

>

> There were 15 papers presented during the meetings that were

related

> to the Ponseti method and included the following topics:

>

> Can the Internet Spare Children from Clubfoot Surgery? The effect

of

> web-based information and parent support-groups on parent treatment

> choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

>

> Community Based Rehabilitation (CBR) in the Management of Clubfoot

> Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> became the subject for the lead story in the next days Convention

> Newspaper.

>

> A Reliable Method of Assessing the Amount of Deformity in the

> Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> (Canada)

>

> MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> Pirani S (Canada)

>

> A Single Surgeon's Experience with the Ponseti Method for the

> Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

>

> Ponseti Treatment of the Congenital Clubfoot: The New Westminster

> Experience. Pirani S (Canada)

>

> Efficacy of the Ponseti Method in the Treatment of Idiopathic

Clubfoot

> Morcuende JA, Dolan LA, Ponseti IV (USA)

>

> A Technical Note on the Ponseti Method: The Importance of the

> Supination of the Forefoot in the Initial Cast to Reduce Cavus

> Deformity. Frick S (USA)

>

> Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

>

> Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

Report

> of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ, Beauchamp

> RD, Choit R (Canada) This method is the Ponseti method except for

> the use of BOTOX instead of a tenotomy.

>

> Ponseti Method Treatment of Congenital Clubfoot in Older (4 Months)

> Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick SL

> (USA)

>

> Conservative Treatment of Clubfoot After Walking Age. Lourenco AF,

> Prata SD, Sodre H, Milani C (Brasil)

>

> The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

of

> Deformity in Developing Nations During Treatment of Congenital

> Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

>

> Initial Results of the Ponseti Method in Patients with Clubfoot

> Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti IV

> (USA)

>

> I will put the outline and titles of all of the papers in the files

> section of the Ponseti method parents support group site which can

be

> located at http://groups.yahoo.com/group/nosurgery4clubfoot/

>

> I was able to spend a few hours on monday with Dr.'s Ponseti,

> Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> hospital. Charity and Trenton were there as well as some other S.

> California internet parents who we had met at Dr. Colburns 1 1/2

> years ago.

>

> I thought that the meetings on Tuesday and Wednesday were very

> informative and that the Ponseti method was recieved very well by

> those who were there. After our paper on the internet, there were

a

> number of doctors that asked about the internet groups. I had told

> them that Clarrisa had assembled what I think is the greatest

library

> of internet information on clubfoot in the world on Parentsplace

that

> had links to sites on all subjects. One doctor said that most of

> what is on the internet shouldn't be trusted and that we should be

> censoring which sites get placed into our library. I indicated

that

> we didn't see it as our role to censor the information, but to make

> all the information we could find available so that parents could

be

> aware and that different subjects and questions could be

discussed.

> Our own Dr. son stood up and defended our efforts to

> provide information on all clubfoot related topics to parents.

>

> There was a lot of new information in the different Ponseti method

> papers. I will try to summarize some of the new information.

>

> Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

patients

> with 95 clubfeet. There were 33 males and 22 females. Thirty three

> patients had been treated by others before going to see him with an

> average of 10 casts, (range of 3 to 20 casts by prior doctors).

> Treatment was begun at his institution at an average of 14 weeks of

> age, (range 2-64 weeks). Six feet were corrected with serial casts

> alone. The remaining 89 feet were fully corrected after casting

plus

> a percutaneous heel cord tenotomy. Two patients required a

posterior

> ankle release after having been non-compliant with brace wear.

>

> Dr. Dobbs report included a study on non-compliance with the use of

> the FAB brace. Similar to the prior U of Iowa studies, most but

not

> all of the relapses they had were related to non-compliance with

the

> use of the FAB. They did a study on factors that seemed to

correlate

> with non-compliance and then used those to identify patients most

> likely to have non-compliance problems. Then from the time of

> initial casting they were able establish a method of reducing the

> number affected by non-compliance and relapsing.

>

> The issue of the potential difficulty of getting parents to use the

> FAB was often a topic of questions of the doctors relating to the

> Ponseti method.

>

> Dr. Frick's paper was on what he called the " Magic Move " of the

> Ponseti method. He mentioned that a number of doctors he had

talked

> to said that they were trying the " Ponseti " method but that it

wasn't

> working as it was supposed to. He said that upon further

questioning

> of their method, he was able to find what he felt was a common

error

> in the way some doctors try to do the initial Ponseti method cast

> that makes it much for difficult for them to have success. (It is

> also listed as one of Dr. Ponseti's common errors at his site as

#1,2

> Pronating instead of Supinating the foot)

> http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

>

> Dr. Frick said that once he and other doctor get that initial

> manipulaion move to supinate instead of pronate the foot in the

first

> casting that it sets up the balance of the foot correction in later

> casts to flow smoothly.

>

> Dr. Lehman said how they at NYU used to treat most of the children

> they saw surgically, but that now they almost never do. He said

that

> almost all of the clubfoot surgery he is now doing is treating

> relapsed feet that were previously surgically treated.

>

> An extremely interesting Ponseti and Physiotherapy paper was by a

Dr.

> Lourenco of Brazil about conservative treatment of clubfoot after

> walking age. He indicated that in Brazil, that there are

tremendous

> treatment resources for those who are wealthy but that the poor

often

> get no care. Over the past few years, he has been trying to treat

> older poor children who have had no prior treatment. He said that

> the financial resources have not existed for him to be able to do

> surgery so that he has tried a physiotherapy/Ponseti-like casting

> method for children from 5 to 8 years of age with very bad

previously

> untreated feet. Although it is not as good as it would have been

if

> treatment had been when they were little it is working and it is

> currently those children's only alternative. I think all of the

> Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

the

> Uganda clubfoot project were very amazed and feeling inspired by

that

> paper.

>

> I believe that it was Dr. Lourenco who told me that he had been

doing

> the surgical method in Brazil for his regular patients up until

about

> 2 years ago. He said that he had gotten a call from a fellow

doctor

> whose own child had just been born with clubfoot. This fellow

doctor

> said, " I want you to do all that you can to avoid the surgery. "

Dr.

> Lourenco had recently heard something about the Ponseti method,

> investigated it further and used it for the other doctors child.

He

> said that since then he had treated 55 children with the Ponseti

> method.

>

> Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

project

> first got started that they felt that 6 months was about as late as

> they could start a child in the Ponseti method in Africa and so

they

> usually kind of just planned on the surgery if they were older than

> that. As they had been using the method, they had slowly been

trying

> it for children who came who were older and over 1 and been able to

> make it work, but had not considered that there was still a chance

to

> try to make it work out to 5 to 8 years of age in untreated feet.

>

> Mr. Steenbeek also presented a paper on his Ugandan FAB for use in

> developing countries where the cost of a US made FAB would be too

> expensive.

>

> Dr. Morcuende also presented some information about the U of Iowa's

> experience with using the Ponseti method in the treatment of

> Arthrogryposis. They indicated that from 1992 to 2001 that they

had

> been about 50% successful in avoiding posterior release types of

> surgery. They indicated that although surgery may be necessary, it

> is less extensive. Dr. Gotfried from Lubbock, Texas had also

> reported on his encouraging experience with the use of the Ponseti

> method for a few arthrogryposis children in his poster presented at

> the May 2002 POSNA meeting.

>

> The effect of having the 8 Ponseti method papers all one after

> another and all from different doctors and hospital groups and all

> essentially saying the same thing was very powerful. One doctor at

> the end said in a general question from the floor microphone, can

> anyone think of a reason not to try using the Ponseti method first

> before considering going toward a surgery.

>

> Also it appeared that there were a number there who had never

before

> heard of the Ponseti method. The main group of Ponseti method

papers

> were presented on Wednesday morning and at the end of the

conference

> that day, a number of doctors gathered in different parts of the

room

> around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> Steenbeek to try to learn the specific manipulation and casting

> technique and to get copies of the CD's that were available that

had

> the Ponseti method video and Uganda Clubfoot Project information.

I

> told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

they

> were all going to be very busy trying to help get information to

> people who were interested.

>

> Dr. Morcuende said that the Costa Rica Ponseti method project was

> going well and that he had been invited to go to a clinic in

> Columbia. The head of the Nigerian pediatric orthopedics was very

> interested in the Uganda Clubfoot Project. A doctor from Bombay

> India said that what he had learned was going to have a big impact

on

> what they did in the future.

>

> There was also one doctor I met during the 3 days there who

indicated

> to a group of doctors with me that his surgical skills were too

> valuable to be used in trying to conservatively cast a child's

feet.

> That if the casting techs couldn't learn how to do the Ponseti

method

> well enough that his time couldn't be spent doing it. He indicated

> that the money generated for hospitals that were already

financially

> strapped was in highly skilled ped ortho surgeons in doing

surgery.

> That they should be utilized in their most financially valuable

role

> and the role that they were trained for which was surgery. He also

> felt that the Ponseti method took too much time to spend on

> manipulation and casting. I thought that it was a fairly

surprising

> statement. I thought later that I should have mentioned that since

> most children were already being casted for 3-4 months prior to a

> surgery as well as 3 months post surgery anyway, that it might also

> be more economical to just cast for 2 months with the Ponseti

method

> and save the hospital some money by not having to cast as much.

>

> It was a great meeting and I was very grateful to be able to be

there

> and learn from all of the information presented. To try to go over

> all of the other papers will be much too long. If anyone has any

> specific questions about a paper from the title in the files

section

> please ask.

>

> and (3-17-99)

[Guest guest]

This past week, I talked to Dr. Pirani (Vancouver B.C.)

He mentioned that this week on October 7th and 8th, that he and Dr.

Dietz (U of Iowa) were going to be at the Manchester, England Ponseti

method training clinic. It is being hosted by Dr. Rupert Ferdinand

and Dr. Naomi who are on Dr. Ponseti's list of doctors. Dr.

Pirani said that he had heard there were 100 (doctors and/or other

medical people) registered for the course.

In November, Dr. Pirani will be going back to Uganda for the 4th and

final year of the Uganda Clubfoot Project. After that, the project

is set up to be a self sustaining part of the Uganda medical system.

Dr. Pirani said that this November will mark the implementation of a

one year Malawi (Africa) Clubfoot Project. There was already a pilot

project established in Malawi and they have consolidated the training

system to make it so that all of the initial training in Malawi can

happen in just one year instead of 4 like in Uganda. After that, the

Malawi system is then supposed to be self-sustaining into the future.

Dr. Pirani also said that since the 3rd International Congress on

Clubfeet that he has had more interest from doctors in setting up

Ponseti / Uganda Clubfoot Project type programs in their countries.

Dr.'s from the following countries have expressed interest. Nigeria,

Ghana, Pakistan, India, Brazil and Haiti. In addition, the U of Iowa

has begun working on a program for Nicaragua in addition to their

training program with doctors in Costa Rica.

and (3-17-99)

> This past Tuesday and Wednesday, August 27 - 28th was the 3rd

> International Congress on Clubfoot at the San Diego Convention

> Center. It was a part of the The International Society of

> Orthopaedic Surgery and Traumatology Convention (SICOT/SIROT).

SICOT

> describes itself as the worlds Orthopedic Organization whereas the

> AAOS is limited mostly to American orthopedists.

> http://www.sicot2002.com/

> The chairmen of the meeting were Dr. Bensahel (Paris), Dr. Kuo

> (Chicago) and Dr. Duhaime (Canada)

>

> In February, Dr. Morcuende of the U of Iowa and I decided to try to

> write and submit a paper to the meeting about the influence of the

> internet in helping parents have information on clubfoot and

> treatment alternatives. Our paper was accepted and I got the

> opportunity to present it at the meeting in San Diego. Allyson,

> Charity and were also able to attend some of the meetings.

>

> I will try to report here on some of the information that I learned

> from the meeting. It is possible that I may have misunderstood

> someones position or statements and may not remember things

exactly,

> but these are my recollections of what I heard. If anyone feels

that

> I have missed something or misinterpreted it, please let me know

and

> I will try to correct it.

>

> There were 70 papers presented from 20 different countries. The

> countries from which papers were presented were: USA (27), Canada

> (6), France (6), Swiss (4), Brazil (3), Uganda (3), China (2),

India

> (2), Poland (2), Russia (2), Turkey (2), Australia, Argentina,

Korea,

> Japan, Pakistan, Sweden, Thailand and Venezuela. There were also

> doctors there that were from Norway, Germany, UK, Nigeria, S.

Africa,

> Mexico and probably a few other countries that I didn't know about.

>

> The papers were sorted and presented by the following topics:

> Anatomy and Pathophysiology (6), Epidemiolgy and Community (4),

> Classification (2), Outcome & Evaluation (4), Gait after Surgery

(5),

> Ultrasound (4), Ponseti (8 directly, 15 related to the Ponseti

> method), French Method (4), Orthosis (2), Clubfoot Release (11),

> Additional Procedures (ATTT, Ilizarov)(7), Complications (7) and

Misc

> (Arthrogryposis)(4). Three of the papers were also related to the

> Uganda Clubfoot project and one of Dr. Norgrove Penny's papers on

> Uganda was the lead story in the next days " Convention Newspaper " .

>

> Dr.'s that I knew who were in attendance who were Ponseti method

> doctors included: Dr's Ponseti & Morcuende (Iowa), Pirani

> (Vancouver), Penny & Steenbeek (Uganda), Frick (S. Carolina),

Lehman

> (NYU), Mosca (Seattle), Dobbs (St. Louis), son

> (Ontario), Dale Jarka (Kansas City), Dalia Sepulvida (Chile),

> Alvarez (Ponseti/Botox - Vancouver), s &

> (French/Ponseti, Dallas), (Cleveland), Lourenco (Brazil)

and

> del Campo (Mexico) and one from UCSD (San Diego). I assume that

> there were also other Ponseti method doctors there but that I

didn't

> know who they were.

>

> Dr.'s there that were French method doctors included Dr's Bensahel

> (France), s & (French/Ponseti, Dallas), Exner

> (Swiss). I assume that there were also others there who use the

> French methods, but I didn't know who they were.

>

> There were also a number of surgical method doctors including

Gennari

> (France), Synder (Poland), Singh (India), Lara (Brazil), Ozeki

> (Japan), Fernandez (Venezuela), (Shriners, Chicago), Aroojis

> (India) and about 15 others who presented surgically related

papers.

> There were probably also other surgically related doctors who I

> didn't know who their names as well as some who may use

combinations

> of different methods.

>

> There were 15 papers presented during the meetings that were

related

> to the Ponseti method and included the following topics:

>

> Can the Internet Spare Children from Clubfoot Surgery? The effect

of

> web-based information and parent support-groups on parent treatment

> choices for clubfoot. Egbert M, Morcuende JA, Ponseti IV (USA)

>

> Community Based Rehabilitation (CBR) in the Management of Clubfoot

> Deformity in Africa. Penny JN, Steenbeek M (Uganda) This paper

> became the subject for the lead story in the next days Convention

> Newspaper.

>

> A Reliable Method of Assessing the Amount of Deformity in the

> Congenital Clubfoot Deformity. Pirani S, Hodges D, Sekeramayi F

> (Canada)

>

> MRI Study of Congenital Clubfeet Treated with the Ponseti Method.

> Pirani S (Canada)

>

> A Single Surgeon's Experience with the Ponseti Method for the

> Treatment of Idiopathic Clubfoot Deformity. Dobbs MB (USA)

>

> Ponseti Treatment of the Congenital Clubfoot: The New Westminster

> Experience. Pirani S (Canada)

>

> Efficacy of the Ponseti Method in the Treatment of Idiopathic

Clubfoot

> Morcuende JA, Dolan LA, Ponseti IV (USA)

>

> A Technical Note on the Ponseti Method: The Importance of the

> Supination of the Forefoot in the Initial Cast to Reduce Cavus

> Deformity. Frick S (USA)

>

> Method for Evaluating the Effectiveness of the Iowa (Ponseti)

> Clubfoot Technique. Lehman WB, Scher DM, Feldman DS, Bazzi J,

> Mohaideen A, Madan S, van Bosse HJP, Iannacone MR (USA)

>

> Botulinum A Toxin in the Treatment of Clubfeet: A Preliminary

Report

> of a Pilot Study. Alvarez CM, Tredwell SJ, Sawatzky BJ, Beauchamp

> RD, Choit R (Canada) This method is the Ponseti method except for

> the use of BOTOX instead of a tenotomy.

>

> Ponseti Method Treatment of Congenital Clubfoot in Older (4 Months)

> Children Who Have Failed Prior Non-Ponseti Cast Treatment. Frick SL

> (USA)

>

> Conservative Treatment of Clubfoot After Walking Age. Lourenco AF,

> Prata SD, Sodre H, Milani C (Brasil)

>

> The Steenbeek Foot Abduction Brace (SFAB): Preventing Recurrence

of

> Deformity in Developing Nations During Treatment of Congenital

> Clubfoot by the Ponseti Method. Steenbeek HM (Uganda)

>

> Initial Results of the Ponseti Method in Patients with Clubfoot

> Associated with Arthrogryposis. Morcuende JA, Dolan LA, Ponseti IV

> (USA)

>

> I will put the outline and titles of all of the papers in the files

> section of the Ponseti method parents support group site which can

be

> located at http://groups.yahoo.com/group/nosurgery4clubfoot/

>

> I was able to spend a few hours on monday with Dr.'s Ponseti,

> Morcuende, Frick, Mubarak and Wenger at the UCSD Children's

> hospital. Charity and Trenton were there as well as some other S.

> California internet parents who we had met at Dr. Colburns 1 1/2

> years ago.

>

> I thought that the meetings on Tuesday and Wednesday were very

> informative and that the Ponseti method was recieved very well by

> those who were there. After our paper on the internet, there were

a

> number of doctors that asked about the internet groups. I had told

> them that Clarrisa had assembled what I think is the greatest

library

> of internet information on clubfoot in the world on Parentsplace

that

> had links to sites on all subjects. One doctor said that most of

> what is on the internet shouldn't be trusted and that we should be

> censoring which sites get placed into our library. I indicated

that

> we didn't see it as our role to censor the information, but to make

> all the information we could find available so that parents could

be

> aware and that different subjects and questions could be

discussed.

> Our own Dr. son stood up and defended our efforts to

> provide information on all clubfoot related topics to parents.

>

> There was a lot of new information in the different Ponseti method

> papers. I will try to summarize some of the new information.

>

> Dr. Dobbs (St. Louis, Shriners) report was on 55 consecutive

patients

> with 95 clubfeet. There were 33 males and 22 females. Thirty three

> patients had been treated by others before going to see him with an

> average of 10 casts, (range of 3 to 20 casts by prior doctors).

> Treatment was begun at his institution at an average of 14 weeks of

> age, (range 2-64 weeks). Six feet were corrected with serial casts

> alone. The remaining 89 feet were fully corrected after casting

plus

> a percutaneous heel cord tenotomy. Two patients required a

posterior

> ankle release after having been non-compliant with brace wear.

>

> Dr. Dobbs report included a study on non-compliance with the use of

> the FAB brace. Similar to the prior U of Iowa studies, most but

not

> all of the relapses they had were related to non-compliance with

the

> use of the FAB. They did a study on factors that seemed to

correlate

> with non-compliance and then used those to identify patients most

> likely to have non-compliance problems. Then from the time of

> initial casting they were able establish a method of reducing the

> number affected by non-compliance and relapsing.

>

> The issue of the potential difficulty of getting parents to use the

> FAB was often a topic of questions of the doctors relating to the

> Ponseti method.

>

> Dr. Frick's paper was on what he called the " Magic Move " of the

> Ponseti method. He mentioned that a number of doctors he had

talked

> to said that they were trying the " Ponseti " method but that it

wasn't

> working as it was supposed to. He said that upon further

questioning

> of their method, he was able to find what he felt was a common

error

> in the way some doctors try to do the initial Ponseti method cast

> that makes it much for difficult for them to have success. (It is

> also listed as one of Dr. Ponseti's common errors at his site as

#1,2

> Pronating instead of Supinating the foot)

> http://www.vh.org/Providers/Textbooks/Clubfoot/Clubfoot.html

>

> Dr. Frick said that once he and other doctor get that initial

> manipulaion move to supinate instead of pronate the foot in the

first

> casting that it sets up the balance of the foot correction in later

> casts to flow smoothly.

>

> Dr. Lehman said how they at NYU used to treat most of the children

> they saw surgically, but that now they almost never do. He said

that

> almost all of the clubfoot surgery he is now doing is treating

> relapsed feet that were previously surgically treated.

>

> An extremely interesting Ponseti and Physiotherapy paper was by a

Dr.

> Lourenco of Brazil about conservative treatment of clubfoot after

> walking age. He indicated that in Brazil, that there are

tremendous

> treatment resources for those who are wealthy but that the poor

often

> get no care. Over the past few years, he has been trying to treat

> older poor children who have had no prior treatment. He said that

> the financial resources have not existed for him to be able to do

> surgery so that he has tried a physiotherapy/Ponseti-like casting

> method for children from 5 to 8 years of age with very bad

previously

> untreated feet. Although it is not as good as it would have been

if

> treatment had been when they were little it is working and it is

> currently those children's only alternative. I think all of the

> Ponseti method doctors including Dr. Pirani, Penny, Steenbeek of

the

> Uganda clubfoot project were very amazed and feeling inspired by

that

> paper.

>

> I believe that it was Dr. Lourenco who told me that he had been

doing

> the surgical method in Brazil for his regular patients up until

about

> 2 years ago. He said that he had gotten a call from a fellow

doctor

> whose own child had just been born with clubfoot. This fellow

doctor

> said, " I want you to do all that you can to avoid the surgery. "

Dr.

> Lourenco had recently heard something about the Ponseti method,

> investigated it further and used it for the other doctors child.

He

> said that since then he had treated 55 children with the Ponseti

> method.

>

> Dr. Penny had said that 3 years ago, when the Uganda Clubfoot

project

> first got started that they felt that 6 months was about as late as

> they could start a child in the Ponseti method in Africa and so

they

> usually kind of just planned on the surgery if they were older than

> that. As they had been using the method, they had slowly been

trying

> it for children who came who were older and over 1 and been able to

> make it work, but had not considered that there was still a chance

to

> try to make it work out to 5 to 8 years of age in untreated feet.

>

> Mr. Steenbeek also presented a paper on his Ugandan FAB for use in

> developing countries where the cost of a US made FAB would be too

> expensive.

>

> Dr. Morcuende also presented some information about the U of Iowa's

> experience with using the Ponseti method in the treatment of

> Arthrogryposis. They indicated that from 1992 to 2001 that they

had

> been about 50% successful in avoiding posterior release types of

> surgery. They indicated that although surgery may be necessary, it

> is less extensive. Dr. Gotfried from Lubbock, Texas had also

> reported on his encouraging experience with the use of the Ponseti

> method for a few arthrogryposis children in his poster presented at

> the May 2002 POSNA meeting.

>

> The effect of having the 8 Ponseti method papers all one after

> another and all from different doctors and hospital groups and all

> essentially saying the same thing was very powerful. One doctor at

> the end said in a general question from the floor microphone, can

> anyone think of a reason not to try using the Ponseti method first

> before considering going toward a surgery.

>

> Also it appeared that there were a number there who had never

before

> heard of the Ponseti method. The main group of Ponseti method

papers

> were presented on Wednesday morning and at the end of the

conference

> that day, a number of doctors gathered in different parts of the

room

> around Dr. Ponseti, Dr. Pirani, Dr. Penny, Dr. Morcuende, Mr.

> Steenbeek to try to learn the specific manipulation and casting

> technique and to get copies of the CD's that were available that

had

> the Ponseti method video and Uganda Clubfoot Project information.

I

> told Dr. Morcuende, Pirani, Penny, Steenbeek that I thought that

they

> were all going to be very busy trying to help get information to

> people who were interested.

>

> Dr. Morcuende said that the Costa Rica Ponseti method project was

> going well and that he had been invited to go to a clinic in

> Columbia. The head of the Nigerian pediatric orthopedics was very

> interested in the Uganda Clubfoot Project. A doctor from Bombay

> India said that what he had learned was going to have a big impact

on

> what they did in the future.

>

> There was also one doctor I met during the 3 days there who

indicated

> to a group of doctors with me that his surgical skills were too

> valuable to be used in trying to conservatively cast a child's

feet.

> That if the casting techs couldn't learn how to do the Ponseti

method

> well enough that his time couldn't be spent doing it. He indicated

> that the money generated for hospitals that were already

financially

> strapped was in highly skilled ped ortho surgeons in doing

surgery.

> That they should be utilized in their most financially valuable

role

> and the role that they were trained for which was surgery. He also

> felt that the Ponseti method took too much time to spend on

> manipulation and casting. I thought that it was a fairly

surprising

> statement. I thought later that I should have mentioned that since

> most children were already being casted for 3-4 months prior to a

> surgery as well as 3 months post surgery anyway, that it might also

> be more economical to just cast for 2 months with the Ponseti

method

> and save the hospital some money by not having to cast as much.

>

> It was a great meeting and I was very grateful to be able to be

there

> and learn from all of the information presented. To try to go over

> all of the other papers will be much too long. If anyone has any

> specific questions about a paper from the title in the files

section

> please ask.

>

> and (3-17-99)