Dr. Update and thanks to all...

[Guest guest]

Jen,

I don't mean to step on toes here or second guess any one or any thing because

certainly even after 7 years in the world of clubbed feet I continue to learn

more new stuff here........

.............but my question about your doctor's " modifications " is this: What

is the advantage to 12 weeks of castings vs. the typical (average?) 5 weeks of

casting? He is more than doubling your child's time in casts (and gee, more

than doubling his income in the process?) How can being casted longer be

actually better for their growth? In the casting phase of the treatment there

is only so much to do, and either the doctor does it swiftly and accurately (aka

correctly), or he doesn't. Prolonging the treatment seems absurd to me.

Logically speaking a cast is a very restrictive thing to wear. Most Ponseti

children finish their casting before they are 2 months old, yours will still be

wearing them when he is 3 and I do believe this could potentially cause

developmental delays as 3 months is a pretty key age in infant-land

developmentally speaking.

As I say all this, please keep in mind that Dr. Ponseti has been working on this

method for dang near 60 years with tons of follow up studies proving it works so

why does a dr. with 3 years of using it think he knows how to do it better?

The real question is this: What are HIS follow up studies? I mean, what are

YOUR doctor's follow up studies? By all rights, his first patients should

still be wearing their FAB's right now (unless he has modified that too, in

which case I say RUN!) , therefore there would be no significant proof that his

" modifications " are successful because he has no long-term proof it works. He's

just been " getting by " with it for now, but the proof is in the long term

results and he doesn't have any to back up his claims. However there are half

a century worth of studies proving the majority of cf children only need an

average of 5 weeks worth of casts and generally a maximum of 9 weeks worth for

more complex cases.

This is just my opinion as an old timer here.

Just a side note, myself (and many, many others here) drive way more than four

hours for treatment. Shoot, four hours would be a cake walk, it's more like a 3

day trip for us.

I guess my whole point is don't be fooled by a spiffy sales pitch and a few

glossy photographs.

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

-----He told me that he has been practicing the

Ponseti method for 3 years and found that making modifications to the

Ponseti method has produced better results for infants. Changing the

cast every week for 12 weeks is better for their growth. I have also

spoken to another woman about her daughter that was treated by this

same Dr. and she said you would never know she ever had clubfeet. I

also saw photo documentation of his work and the little girl's foot

looks beautiful. At this point I'm not going to change Dr., but I

will keep in mind all that everyone has told me. Cam's foot looks

better already

I think it was that asked me how far Charlotte is from

Wilmington and it's about 4 1/2 hours. We are in Charlotte several

times a year so I think we would definitely try to co-ordinate a visit

with another Ponseti Dr. for a second opinion. Thank you for the

names and the advice.

Take care everyone!!

Jen

[Guest guest]

First of all I really want to thank everyone for your words of

encouragment and sharing your experiences with me. I no longer feel

alone in this journey and I truly feel like this is going to be

something to remember and learn from instead of a memory to try and

forget. I feel so lucky to have met a group of people like all of

you. I apologize that I can't email all of you personally to thank

you for your kind wishes. There are so many of you to write back

to . It's amazing what can happen when people get together to

support each other. I'm greatful for this and I feel priveledged to

be a part of it.

Well, some of you have asked me about my Dr. and his method of

treatment. I asked him questions today about the number of casts and

why there are so many. He told me that he has been practicing the

Ponseti method for 3 years and found that making modifications to the

Ponseti method has produced better results for infants. Changing the

cast every week for 12 weeks is better for their growth. I have also

spoken to another woman about her daughter that was treated by this

same Dr. and she said you would never know she ever had clubfeet. I

also saw photo documentation of his work and the little girl's foot

looks beautiful. At this point I'm not going to change Dr., but I

will keep in mind all that everyone has told me. Cam's foot looks

better already

I think it was that asked me how far Charlotte is from

Wilmington and it's about 4 1/2 hours. We are in Charlotte several

times a year so I think we would definitely try to co-ordinate a visit

with another Ponseti Dr. for a second opinion. Thank you for the

names and the advice.

Take care everyone!!

Jen

[Guest guest]

I have to agree with ee in that the length of

time for casts seems long. Before I finally went to a

properly trained Ponseti doctor, I was told initially

by the Orthopedic Surgeon we were seeing that my son

would have 8 casts and one injection of Botox in each

tendon - her own " modifications " on the Ponseti

method. Hayden ended up having twelve casts and two

Botox injections in each tendon and the results were

poor. The casts slipped constantly, he had terrible

skin issues due to thick casts and the Botox did

absolutely nothing for him. Anyway, we are just at

the beginning of the Ponseti treatment, but already

things are going very well! Good luck to you!

--- number23 wrote:

---------------------------------

Jen,

I don't mean to step on toes here or second guess any

one or any thing because certainly even after 7 years

in the world of clubbed feet I continue to learn more

new stuff here........

.............but my question about your doctor's

" modifications " is this: What is the advantage to 12

weeks of castings vs. the typical (average?) 5 weeks

of casting? He is more than doubling your child's

time in casts (and gee, more than doubling his income

in the process?) How can being casted longer be

actually better for their growth? In the casting

phase of the treatment there is only so much to do,

and either the doctor does it swiftly and accurately

(aka correctly), or he doesn't. Prolonging the

treatment seems absurd to me.

Logically speaking a cast is a very restrictive thing

to wear. Most Ponseti children finish their casting

before they are 2 months old, yours will still be

wearing them when he is 3 and I do believe this could

potentially cause developmental delays as 3 months is

a pretty key age in infant-land developmentally

speaking.

As I say all this, please keep in mind that Dr.

Ponseti has been working on this method for dang near

60 years with tons of follow up studies proving it

works so why does a dr. with 3 years of using it think

he knows how to do it better?

The real question is this: What are HIS follow up

studies? I mean, what are YOUR doctor's follow up

studies? By all rights, his first patients should

still be wearing their FAB's right now (unless he has

modified that too, in which case I say RUN!) ,

therefore there would be no significant proof that his

" modifications " are successful because he has no

long-term proof it works. He's just been " getting by "

with it for now, but the proof is in the long term

results and he doesn't have any to back up his claims.

However there are half a century worth of studies

proving the majority of cf children only need an

average of 5 weeks worth of casts and generally a

maximum of 9 weeks worth for more complex cases.

This is just my opinion as an old timer here.

Just a side note, myself (and many, many others here)

drive way more than four hours for treatment. Shoot,

four hours would be a cake walk, it's more like a 3

day trip for us.

I guess my whole point is don't be fooled by a spiffy

sales pitch and a few glossy photographs.

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

-----He told me that he has been practicing the

Ponseti method for 3 years and found that making

modifications to the

Ponseti method has produced better results for

infants. Changing the

cast every week for 12 weeks is better for their

growth. I have also

spoken to another woman about her daughter that was

treated by this

same Dr. and she said you would never know she ever

had clubfeet. I

also saw photo documentation of his work and the

little girl's foot

looks beautiful. At this point I'm not going to

change Dr., but I

will keep in mind all that everyone has told me.

Cam's foot looks

better already

I think it was that asked me how far Charlotte

is from

Wilmington and it's about 4 1/2 hours. We are in

Charlotte several

times a year so I think we would definitely try to

co-ordinate a visit

with another Ponseti Dr. for a second opinion. Thank

you for the

names and the advice.

Take care everyone!!

Jen

[Guest guest]

In some atypical clubfeet they could apply 7-12 casts. My daugther

for instance had a total of 9 casts (plus 3 that slipped off and were

replaced).

andra

>

>

> ---------------------------------

> Jen,

> I don't mean to step on toes here or second guess any

> one or any thing because certainly even after 7 years

> in the world of clubbed feet I continue to learn more

> new stuff here........

>

> ............but my question about your doctor's

> " modifications " is this: What is the advantage to 12

> weeks of castings vs. the typical (average?) 5 weeks

> of casting? He is more than doubling your child's

> time in casts (and gee, more than doubling his income

> in the process?) How can being casted longer be

> actually better for their growth? In the casting

> phase of the treatment there is only so much to do,

> and either the doctor does it swiftly and accurately

> (aka correctly), or he doesn't. Prolonging the

> treatment seems absurd to me.

>

> Logically speaking a cast is a very restrictive thing

> to wear. Most Ponseti children finish their casting

> before they are 2 months old, yours will still be

> wearing them when he is 3 and I do believe this could

> potentially cause developmental delays as 3 months is

> a pretty key age in infant-land developmentally

> speaking.

>

>

> As I say all this, please keep in mind that Dr.

> Ponseti has been working on this method for dang near

> 60 years with tons of follow up studies proving it

> works so why does a dr. with 3 years of using it think

> he knows how to do it better?

>

> The real question is this: What are HIS follow up

> studies? I mean, what are YOUR doctor's follow up

> studies? By all rights, his first patients should

> still be wearing their FAB's right now (unless he has

> modified that too, in which case I say RUN!) ,

> therefore there would be no significant proof that his

> " modifications " are successful because he has no

> long-term proof it works. He's just been " getting by "

> with it for now, but the proof is in the long term

> results and he doesn't have any to back up his claims.

> However there are half a century worth of studies

> proving the majority of cf children only need an

> average of 5 weeks worth of casts and generally a

> maximum of 9 weeks worth for more complex cases.

>

> This is just my opinion as an old timer here.

>

> Just a side note, myself (and many, many others here)

> drive way more than four hours for treatment. Shoot,

> four hours would be a cake walk, it's more like a 3

> day trip for us.

>

> I guess my whole point is don't be fooled by a spiffy

> sales pitch and a few glossy photographs.

>

> ee, mother of two bcf boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>

> -----He told me that he has been practicing the

> Ponseti method for 3 years and found that making

> modifications to the

> Ponseti method has produced better results for

> infants. Changing the

> cast every week for 12 weeks is better for their

> growth. I have also

> spoken to another woman about her daughter that was

> treated by this

> same Dr. and she said you would never know she ever

> had clubfeet. I

> also saw photo documentation of his work and the

> little girl's foot

> looks beautiful. At this point I'm not going to

> change Dr., but I

> will keep in mind all that everyone has told me.

> Cam's foot looks

> better already

> I think it was that asked me how far Charlotte

> is from

> Wilmington and it's about 4 1/2 hours. We are in

> Charlotte several

> times a year so I think we would definitely try to

> co-ordinate a visit

> with another Ponseti Dr. for a second opinion. Thank

> you for the

> names and the advice.

>

> Take care everyone!!

>

> Jen

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Jen,

Casts SHOULD be toe to groin, and SHOULD be changed every 5 to 7 days, this

isn't something different your doctor is doing, that is the standard procedure

to change them that often. If they were not changed that often, I would

definately worry! I think our sticking point is why he wants to do 12 weeks

instead of the typical 5 weeks.

MY sticking point, and not to beat you half to death about it, is why he wants

the 12 weeks...when 50 years of experience prove time and again the average is 5

and worst case is 9. In some cases as few as 3 do the trick. Tons of

studies have proven this to be completely effective and way less invasive to the

child being treated. I would be really bugging this doctor to know why he

thinks he needs to more than double the casting phase to achieve the same

results that Dr. Ponseti (and the Ponseti Method) achieve in less than half that

time. What does " better growth " and " more permanent " results really mean?

Again, my opinion is your dr. doesn't have the follow up studies nor the cilent

base to prove his modification is " better " ......the only reason I have ever

heard of more casts is a doctor not achieving the results in the typical amount

of time due to his lack of ability / understanding of the method....so that does

sort of make me raise my eye brows at it all.

I'd also just like to say my 1st son's cf doctor came highly recommended by

other doctors yet he spent 20 months totally f*******ing up my kid's feet

because I didn't know any better.

Sink or swim in this deal, the ultimate outcome of your kid's treatment rests on

YOU as his parent, not on any doctor. And i think that is really the main point

I try to make to any new cf parent. I cannot blame Brain's doc for being

ignorant - I was the ignorant one who didn't look further, ask more or seek

alternatives sooner. 's messed up feet are MY fault, not some doctor's

fault. His brother's perfect feet are MY fault too, thankfully!

Well my Dr. is pretty firm that having 12 casts over 12 weeks ensures proper

(and more permanent) correction and yet allows the baby's leg to grow. For now,

I'm comfortable with this Dr. and I will keep asking questions as well as ask

for more names of people with success stories.

As for the 4 hour drive - I realize it's not as far as most other people drive

to get to their Dr., but when we found out that Cam had clubfoot our

pediatrician recommended this Dr. We think extremely highly of our pediatrician

and never questioned his referral. As well we were in such a fog over this

whole thing and wanted to start treatment as soon as possible. I don't feel

that Cam's development is in any immediate danger at this point, and I hope to

get more info. on my Dr. success. I'll keep people posted...

Jen

number23 wrote:

Jen,

I don't mean to step on toes here or second guess any one or any thing because

certainly even after 7 years in the world of clubbed feet I continue to learn

more new stuff here........

.............but my question about your doctor's " modifications " is this: What

is the advantage to 12 weeks of castings vs. the typical (average?) 5 weeks of

casting? He is more than doubling your child's time in casts (and gee, more

than doubling his income in the process?) How can being casted longer be

actually better for their growth? In the casting phase of the treatment there

is only so much to do, and either the doctor does it swiftly and accurately (aka

correctly), or he doesn't. Prolonging the treatment seems absurd to me.

Logically speaking a cast is a very restrictive thing to wear. Most Ponseti

children finish their casting before they are 2 months old, yours will still be

wearing them when he is 3 and I do believe this could potentially cause

developmental delays as 3 months is a pretty key age in infant-land

developmentally speaking.

As I say all this, please keep in mind that Dr. Ponseti has been working on this

method for dang near 60 years with tons of follow up studies proving it works so

why does a dr. with 3 years of using it think he knows how to do it better?

The real question is this: What are HIS follow up studies? I mean, what are

YOUR doctor's follow up studies? By all rights, his first patients should

still be wearing their FAB's right now (unless he has modified that too, in

which case I say RUN!) , therefore there would be no significant proof that his

" modifications " are successful because he has no long-term proof it works. He's

just been " getting by " with it for now, but the proof is in the long term

results and he doesn't have any to back up his claims. However there are half

a century worth of studies proving the majority of cf children only need an

average of 5 weeks worth of casts and generally a maximum of 9 weeks worth for

more complex cases.

This is just my opinion as an old timer here.

Just a side note, myself (and many, many others here) drive way more than four

hours for treatment. Shoot, four hours would be a cake walk, it's more like a 3

day trip for us.

I guess my whole point is don't be fooled by a spiffy sales pitch and a few

glossy photographs.

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

-----He told me that he has been practicing the

Ponseti method for 3 years and found that making modifications to the

Ponseti method has produced better results for infants. Changing the

cast every week for 12 weeks is better for their growth. I have also

spoken to another woman about her daughter that was treated by this

same Dr. and she said you would never know she ever had clubfeet. I

also saw photo documentation of his work and the little girl's foot

looks beautiful. At this point I'm not going to change Dr., but I

will keep in mind all that everyone has told me. Cam's foot looks

better already

I think it was that asked me how far Charlotte is from

Wilmington and it's about 4 1/2 hours. We are in Charlotte several

times a year so I think we would definitely try to co-ordinate a visit

with another Ponseti Dr. for a second opinion. Thank you for the

names and the advice.

Take care everyone!!

Jen

[Guest guest]

Well my Dr. is pretty firm that having 12 casts over 12 weeks ensures proper

(and more permanent) correction and yet allows the baby's leg to grow. His

casts go up to his groin (not quite but just about) and they are very light

(around 5 oz.). I actually don't mind changing the cast every week because I'm

sure you remember with newborns how often an " unexpected waterfall " occurs with

boys:). It's almost impossible not to hit the cast. I keep it as clean as

possible but I can only do so much. His skin isn't too bad, but he's only had

it on for 2 weeks so I'm sure it's just a matter of time before the irritation

gets worse.

For now, I'm comfortable with this Dr. and I will keep asking questions as well

as ask for more names of people with success stories.

As for the 4 hour drive - I realize it's not as far as most other people drive

to get to their Dr., but when we found out that Cam had clubfoot our

pediatrician recommended this Dr. We think extremely highly of our pediatrician

and never questioned his referral. As well we were in such a fog over this

whole thing and wanted to start treatment as soon as possible. I don't feel

that Cam's development is in any immediate danger at this point, and I hope to

get more info. on my Dr. success. I'll keep people posted...

Jen

number23 wrote:

Jen,

I don't mean to step on toes here or second guess any one or any thing because

certainly even after 7 years in the world of clubbed feet I continue to learn

more new stuff here........

.............but my question about your doctor's " modifications " is this: What

is the advantage to 12 weeks of castings vs. the typical (average?) 5 weeks of

casting? He is more than doubling your child's time in casts (and gee, more

than doubling his income in the process?) How can being casted longer be

actually better for their growth? In the casting phase of the treatment there

is only so much to do, and either the doctor does it swiftly and accurately (aka

correctly), or he doesn't. Prolonging the treatment seems absurd to me.

Logically speaking a cast is a very restrictive thing to wear. Most Ponseti

children finish their casting before they are 2 months old, yours will still be

wearing them when he is 3 and I do believe this could potentially cause

developmental delays as 3 months is a pretty key age in infant-land

developmentally speaking.

As I say all this, please keep in mind that Dr. Ponseti has been working on this

method for dang near 60 years with tons of follow up studies proving it works so

why does a dr. with 3 years of using it think he knows how to do it better?

The real question is this: What are HIS follow up studies? I mean, what are

YOUR doctor's follow up studies? By all rights, his first patients should

still be wearing their FAB's right now (unless he has modified that too, in

which case I say RUN!) , therefore there would be no significant proof that his

" modifications " are successful because he has no long-term proof it works. He's

just been " getting by " with it for now, but the proof is in the long term

results and he doesn't have any to back up his claims. However there are half

a century worth of studies proving the majority of cf children only need an

average of 5 weeks worth of casts and generally a maximum of 9 weeks worth for

more complex cases.

This is just my opinion as an old timer here.

Just a side note, myself (and many, many others here) drive way more than four

hours for treatment. Shoot, four hours would be a cake walk, it's more like a 3

day trip for us.

I guess my whole point is don't be fooled by a spiffy sales pitch and a few

glossy photographs.

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

-----He told me that he has been practicing the

Ponseti method for 3 years and found that making modifications to the

Ponseti method has produced better results for infants. Changing the

cast every week for 12 weeks is better for their growth. I have also

spoken to another woman about her daughter that was treated by this

same Dr. and she said you would never know she ever had clubfeet. I

also saw photo documentation of his work and the little girl's foot

looks beautiful. At this point I'm not going to change Dr., but I

will keep in mind all that everyone has told me. Cam's foot looks

better already

I think it was that asked me how far Charlotte is from

Wilmington and it's about 4 1/2 hours. We are in Charlotte several

times a year so I think we would definitely try to co-ordinate a visit

with another Ponseti Dr. for a second opinion. Thank you for the

names and the advice.

Take care everyone!!

Jen

[Guest guest]

Jen,

Perhaps your doctor has had issues with the babies' feet being too

small and not fitting properly into the shoes and that is why he

prefers to cast for a few additional weeks in order to obtain that

growth.

Although this is an unusual modification in the fact that he's doing

it for all babies as general practice, I don't see a major problem

with this if he is following the method correctly otherwise. In

order to determine this, you would need to observe/know the

following:

The shape of the casts at the end of correction, just before the

tenotomy, the toes would kind of point down and outward. There is a

good picture of the succession of the casts in that Global HELP

booklet so you can see what the casts should look like each step of

the way. The foot should be abducted outward to 70 degrees at the

last post-tenotomy cast. Does your doctor abduct the foot to 70°?

Did he tell you that the casts after the tenotomy are just to

maintain correction? After the tenotomy, the foot should be

completely corrected. If he says that the last 5-6 weeks are to get

more correction after the tenotomy, then he is not using the proper

casting and manipulation techniques per Ponseti.

I guess my take on what you've told us thus far is that if your

doctor is just using more casts in order to get the foot a little

bigger for better results in the transition to the brace, that is

not as big of a deal to me as if he says that he needs those

additional casts are needed in order to get better results for the

correction of the foot. We have read statements to the effect of if

the doctor needs more than 9 casts to achieve correction (barring

any unusual circumstances), then they are not grasping the method

properly. Most kids need only 5-7 casts- up to 9 for the most

severe. You could always print off that Global HELP booklet and ask

your doctor to review it to see if that is the

manipulation/casting/bracing protocol that he follows.

I hope this helps a little bit. Maybe I'm reading too much into

your letter. I know how hard it is understand everything the doctor

is telling you at the appointment and remember to ask all the

questions you wanted to, much less try to go back and communicate it

with the group here.

Regards,

& (3-16-00, lcf)

[Guest guest]

Hi Jen,

I just wanted to pipe up on this conversation. I

really don't want to make you feel like I am

questioning you but I am still not sure I follow your

doctor's approach. In the normal Ponseti method the

casts ARE changed weekly, but unless there are

problems with slipping casts (which there *usually*

aren't) it should only take 5 or 6 weekly casts to

obtain correction. I don't understand this philosophy

of 12 weekly cast changes, how can keeping each cast

on for 1 week with a total of 12 weeks be better than

keeping each cast on for 1 week with a total of 6

weeks? The main thing is that the actual progression

of correction does not take that long, if it does,

this is a red flag that there could be something

faulty in the treatment.

There is one thing that your doctor may be trying to

achieve, and that is having the baby's foot a bit

bigger (that is by the baby being a bit older) by time

they are ready to go into the brace. This in itself

is possibly okay but something I would ask him

about.

The other issue I would question is why he is doing

the tenotomy in the middle of casting instead of at

the end? Again, if he is expecting to achieve full

correction with the first 6 casts, do the tenotomy and

then the following casts would just be kind of like

" holding " casts, I can maybe see his logic. However,

it is very important that the tenotomy be performed as

the last step of the actual correction. The bones of

the foot must actually rotate around each other to

come to the corrected position -- if the tenotomy is

performed too early it will allow the foot to

dorsiflex, thus actually preventing the key rotation

of the bones. Also, I may have missed this in a

previous post, but will he be keeping the

post-tenotomy cast on for 3 weeks? This is important

to allow the tendon to heal in the proper stretched

position.

Jen, I just want to reassure you that if we ask you a

lot of questions it is purely for " educational

purposes " and because we have too often seen doctors

who deviate from the method and actually do more harm

than good - we only have your's and Cam's best

interests at heart. It is ultimately the most

important thing for you to be educated about your

son's treatment and to know what to look for and when

to ask questions, what questions to ask, and when

and/or if you should seek a second opinion. Hope this

is helpful!

Thanks,

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace

16hrs/day

--- Jen wrote:

> Well my Dr. is pretty firm that having 12 casts over

> 12 weeks ensures proper (and more permanent)

> correction and yet allows the baby's leg to grow.

> His casts go up to his groin (not quite but just

> about) and they are very light (around 5 oz.). I

> actually don't mind changing the cast every week

> because I'm sure you remember with newborns how

> often an " unexpected waterfall " occurs with boys:).

> It's almost impossible not to hit the cast. I keep

> it as clean as possible but I can only do so much.

> His skin isn't too bad, but he's only had it on for

> 2 weeks so I'm sure it's just a matter of time

> before the irritation gets worse.

> For now, I'm comfortable with this Dr. and I will

> keep asking questions as well as ask for more names

> of people with success stories.

> As for the 4 hour drive - I realize it's not as far

> as most other people drive to get to their Dr., but

> when we found out that Cam had clubfoot our

> pediatrician recommended this Dr. We think

> extremely highly of our pediatrician and never

> questioned his referral. As well we were in such a

> fog over this whole thing and wanted to start

> treatment as soon as possible. I don't feel that

> Cam's development is in any immediate danger at this

> point, and I hope to get more info. on my Dr.

> success. I'll keep people posted...

>

> Jen

>

>

> number23 wrote:

> Jen,

> I don't mean to step on toes here or second guess

> any one or any thing because certainly even after 7

> years in the world of clubbed feet I continue to

> learn more new stuff here........

>

> ............but my question about your doctor's

> " modifications " is this: What is the advantage to

> 12 weeks of castings vs. the typical (average?) 5

> weeks of casting? He is more than doubling your

> child's time in casts (and gee, more than doubling

> his income in the process?) How can being casted

> longer be actually better for their growth? In the

> casting phase of the treatment there is only so much

> to do, and either the doctor does it swiftly and

> accurately (aka correctly), or he doesn't.

> Prolonging the treatment seems absurd to me.

>

> Logically speaking a cast is a very restrictive

> thing to wear. Most Ponseti children finish their

> casting before they are 2 months old, yours will

> still be wearing them when he is 3 and I do believe

> this could potentially cause developmental delays as

> 3 months is a pretty key age in infant-land

> developmentally speaking.

>

>

> As I say all this, please keep in mind that Dr.

> Ponseti has been working on this method for dang

> near 60 years with tons of follow up studies proving

> it works so why does a dr. with 3 years of using it

> think he knows how to do it better?

>

> The real question is this: What are HIS follow up

> studies? I mean, what are YOUR doctor's follow up

> studies? By all rights, his first patients should

> still be wearing their FAB's right now (unless he

> has modified that too, in which case I say RUN!) ,

> therefore there would be no significant proof that

> his " modifications " are successful because he has no

> long-term proof it works. He's just been " getting

> by " with it for now, but the proof is in the long

> term results and he doesn't have any to back up his

> claims. However there are half a century worth of

> studies proving the majority of cf children only

> need an average of 5 weeks worth of casts and

> generally a maximum of 9 weeks worth for more

> complex cases.

>

> This is just my opinion as an old timer here.

>

> Just a side note, myself (and many, many others

> here) drive way more than four hours for treatment.

> Shoot, four hours would be a cake walk, it's more

> like a 3 day trip for us.

>

> I guess my whole point is don't be fooled by a

> spiffy sales pitch and a few glossy photographs.

>

> ee, mother of two bcf boys:

> - NON Ponseti Method Club Foot Disaster

> Everett - Dr. Ponseti Success Story

>

> -----He told me that he has been practicing the

> Ponseti method for 3 years and found that making

> modifications to the

> Ponseti method has produced better results for

> infants. Changing the

> cast every week for 12 weeks is better for their

> growth. I have also

> spoken to another woman about her daughter that was

> treated by this

> same Dr. and she said you would never know she ever

> had clubfeet. I

> also saw photo documentation of his work and the

> little girl's foot

> looks beautiful. At this point I'm not going to

> change Dr., but I

> will keep in mind all that everyone has told me.

> Cam's foot looks

> better already

> I think it was that asked me how far

> Charlotte is from

> Wilmington and it's about 4 1/2 hours. We are in

> Charlotte several

> times a year so I think we would definitely try to

> co-ordinate a visit

> with another Ponseti Dr. for a second opinion.

> Thank you for the

> names and the advice.

>

> Take care everyone!!

>

> Jen

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Jen.

Please be careful with your doctor and continue to ask 100 questions. My

pediatrician and gyn highly recommended by daughters first doctor as well. It

turns out, he was modifying the method, but we didn't know better, and because

he was so 'highly recommended' we stuck with him longer than we should have.

Finally, with the intelligent people and education I learned from this site, we

finally switched when my daughter was 5 months old. We had to start treatment

over from the beginning. Luckily it was still early enough where the damage

wasn't too bad, but I am one of the lucky ones as compared to so many others on

this site.

I am not trying to come down hard on you, and neither are the others. We just

want to make sure you get the absolute best treatment for your little one. It

could be possible your doctor is great. We just want you to be aware that just

because they are highly recommended, doesn't necessarily mean they know the best

way to treat the Ponseti Method. Modifying the method in any way whatsoever is

always a red flag. Please learn about your doctor and please be cautious and

keep asking a lot of questions.

Good luck and keep asking away........

Jen wrote:

Well my Dr. is pretty firm that having 12 casts over 12 weeks ensures proper

(and more permanent) correction and yet allows the baby's leg to grow. His

casts go up to his groin (not quite but just about) and they are very light

(around 5 oz.). I actually don't mind changing the cast every week because I'm

sure you remember with newborns how often an " unexpected waterfall " occurs with

boys:). It's almost impossible not to hit the cast. I keep it as clean as

possible but I can only do so much. His skin isn't too bad, but he's only had

it on for 2 weeks so I'm sure it's just a matter of time before the irritation

gets worse.

For now, I'm comfortable with this Dr. and I will keep asking questions as well

as ask for more names of people with success stories.

As for the 4 hour drive - I realize it's not as far as most other people drive

to get to their Dr., but when we found out that Cam had clubfoot our

pediatrician recommended this Dr. We think extremely highly of our pediatrician

and never questioned his referral. As well we were in such a fog over this

whole thing and wanted to start treatment as soon as possible. I don't feel

that Cam's development is in any immediate danger at this point, and I hope to

get more info. on my Dr. success. I'll keep people posted...

Jen

number23 wrote:

Jen,

I don't mean to step on toes here or second guess any one or any thing because

certainly even after 7 years in the world of clubbed feet I continue to learn

more new stuff here........

.............but my question about your doctor's " modifications " is this: What

is the advantage to 12 weeks of castings vs. the typical (average?) 5 weeks of

casting? He is more than doubling your child's time in casts (and gee, more

than doubling his income in the process?) How can being casted longer be

actually better for their growth? In the casting phase of the treatment there

is only so much to do, and either the doctor does it swiftly and accurately (aka

correctly), or he doesn't. Prolonging the treatment seems absurd to me.

Logically speaking a cast is a very restrictive thing to wear. Most Ponseti

children finish their casting before they are 2 months old, yours will still be

wearing them when he is 3 and I do believe this could potentially cause

developmental delays as 3 months is a pretty key age in infant-land

developmentally speaking.

As I say all this, please keep in mind that Dr. Ponseti has been working on this

method for dang near 60 years with tons of follow up studies proving it works so

why does a dr. with 3 years of using it think he knows how to do it better?

The real question is this: What are HIS follow up studies? I mean, what are

YOUR doctor's follow up studies? By all rights, his first patients should

still be wearing their FAB's right now (unless he has modified that too, in

which case I say RUN!) , therefore there would be no significant proof that his

" modifications " are successful because he has no long-term proof it works. He's

just been " getting by " with it for now, but the proof is in the long term

results and he doesn't have any to back up his claims. However there are half

a century worth of studies proving the majority of cf children only need an

average of 5 weeks worth of casts and generally a maximum of 9 weeks worth for

more complex cases.

This is just my opinion as an old timer here.

Just a side note, myself (and many, many others here) drive way more than four

hours for treatment. Shoot, four hours would be a cake walk, it's more like a 3

day trip for us.

I guess my whole point is don't be fooled by a spiffy sales pitch and a few

glossy photographs.

ee, mother of two bcf boys:

- NON Ponseti Method Club Foot Disaster

Everett - Dr. Ponseti Success Story

-----He told me that he has been practicing the

Ponseti method for 3 years and found that making modifications to the

Ponseti method has produced better results for infants. Changing the

cast every week for 12 weeks is better for their growth. I have also

spoken to another woman about her daughter that was treated by this

same Dr. and she said you would never know she ever had clubfeet. I

also saw photo documentation of his work and the little girl's foot

looks beautiful. At this point I'm not going to change Dr., but I

will keep in mind all that everyone has told me. Cam's foot looks

better already

I think it was that asked me how far Charlotte is from

Wilmington and it's about 4 1/2 hours. We are in Charlotte several

times a year so I think we would definitely try to co-ordinate a visit

with another Ponseti Dr. for a second opinion. Thank you for the

names and the advice.

Take care everyone!!

Jen

[Guest guest]

Jen,

I know it's easy to be overwhelmed. Especially when there's all

kinds of new (and complicated) information to absorb and lots of

opinions and advice thrown in the mix. Many of us here have read

hundreds of stories over the years from families like yours- and

it's hard to give advice based on just snippets of information about

the child and the doctor- but everyone is very concerned about the

baby getting the best care possible, so the folks just try to give

you as much info as they can so that you can educate yourself on

different scenarios and different aspects of clubfoot treatment. We

have had *many* families think they were getting the Ponseti method,

when they in fact were not, and usually it's not too late to turn

around and get another opinion or switch doctors- but it's always

best to figure this out as quickly as possible since a well-intended

doctor can actually damage a foot by casting it incorrectly or cause

unnecessary scar tissue by operating before the foot is ready which

complicates the additional surgeries (tendon lengthening) that might

be needed later on. Unfortunately, many of us (myself included)

have been burned by blindly trusting a doctor- and we don't want

that to happen to other families. Most of us don't need to hang out

on this board, but we do because we're a tight knit group that is

passionate about helping clubfoot babies just like our own- and we

know that our older kids are role models and beacons of hope for

those just starting out on their journey. Things will be okay and

life will be " normal " eventually. So I hope you'll read this into

all the well-meaning posts here. We want to give you the info you

need to sort out the treatment journey for your little boy.

About the tenotomy- the procedure used for the lengthening of the

Achilles tendon (required for about 80% of the kids) using the

Ponseti approach is called a percutaneous tenotomy. It can be done

under local anesthesia or general anesthesia. It is a quick (15-20

min or less including casting) procedure in which the scalpel is

inserted into the heel. There are no stitches required to close the

puncture wound because it's very tiny. The cast is applied and left

on for 3 weeks. Once this cast comes off- that's it- the foot is

corrected and ready to go into the brace.

Now, maybe what your doctor uses is a different form of a tenotomy-

there are open-incision tenotomies where a large incision is used

which requires stitches to close the wound. One procedure in this

category is called " Z-lengthening " . If this is what your doctor is

using- perhaps this is why he indicated that he needed more casts to

allow healing since it's a more involved procedure. Sometimes

doctors refer to a procedure as a " release " . This can mean that

they go in and lengthen the tendon- but while they're " in there "

they can also release additional components of the foot. This would

be more extensive surgery and would commonly require 5-6 weeks of

post-op casting. Is this what your doctor is describing? It's hard

to know the difference between the procedures that doctors talk

about. Tendon lengthening surgery, tenotomy, tendon

release.....they can all mean the same thing- just different ways to

say it..... or they could be completely different as there are

vastly different procedures that fall under those " general terms " .

The easiest way to know what your doctor is expecting to do is to

have him describe the procedure to you in detail.

Sorry this is a lot to take in- just keep reading and asking

questions- eventually it will all fall into place and you'll end up

being able to hold in-depth medical conversations with the

doctors.

I've had over 5 years to practice already....it's like learning a

new language sometimes.

Hang in there-

('s mom)

[Guest guest]

One thing to add to this discussion..

My daughter had 13 casts total, between her first ultimately

unsuccessful treatment and then the casts she had in Iowa.

Recently, at a checkup, Dr. Ponseti and a visiting doctor noted that

her calf is thinner than average. And then Dr. Ponseti said that the

difference could be due to her having had so many casts.

I had never heard that from him before. I had always thought that

casting itself couldn't cause atrophy. But, there it is; he said it.

I had wanted to switch doctors earlier, but it took us several

months, including a while for me to convince my husband, that doing

so was necessary. Being surprised at delivery, we had a steep

learning curve. And we were tripped up, like so many, with the notion

of a doctor coming highly recommended by very smart people.. so 'big

name', so well thought of... surely, it's fine. Well.. it wasn't, for

THIS condition. I regret those months wasted, putting my tiny infant

through painful castings that didn't work, and then having to start

all over again the right way. Plus her having a tenotomy done too

early, which has probably has resulted in less dorsiflexion than she

might otherwise have had.

As ee said, I don't blame anyone but myself.. and maybe that's

part of why I feeled called to be here. To help and alert those of

you going through the same thing... because it happens over, and

over, and over again.. in such a predicatble way. The feedback is not

always well received, I know.. perhaps perceived as nosy, critical,

presumptuous. But honestly, we're just trying to help other moms and

dads avoid what we went through. The situations and pitfalls are SO

common. As said, us 'old timers' don't need to be hanging

around on the boards.. other than hoping to support and help other

parents. We have nothing to gain but that..

and Claire