Re: Relapse in older children

June 14, 2006

Hi , I am not sure how much info I will be, b/c we are new to this

as well. My son was born 5/25/02 with bilateral CF, he wasn't

treated by a Ponseti dr, he did short and full leg casts, DBB, and then

the straight last shoes(day and night until he was 3 and then inserts in

his shoes. He didn't actually have a " relapse " since he was never fully

corrected(residual deformities) I guess is the term. His forefeet were

adducted(kidney bean shape) and his heels were overcorrected(valgus) and

he turned his feet in when walking and running. had started

having pain everytime we put shoes on him. So, his ortho who had

suggested an osteotomy when he was 5, wanted us to get a 2nd opinion about

upping the surgery date. We wrote Dr. Ponseti, he recommended Dr.

Dobbs(3hrs drive) so we see him at Childrens in St. Louis. At that appt.

Dr. Dobbs put in full leg casts and then another set a week later.

The 2nd set stayed on 2wks. We rented a wheelchair so he could get

himself around better at home and pre-school. He really beat his casts up

too b/c he walked and scooted everywhere! As a result of that his legs

ached at night. During this whole treatment time, I took pics of

everything, and asked lots of questions. He has been out of his casts for

2wks now, and in the Dobbs bar(full time for the first 3 days and now just

at night) It took over a week before he was walking in his feet.

I was told that it takes older kids up to 2 wks before they are fully

walking again. We go back in 3mos(Aug) to see if he will need the ATTT.

Dr. Dobbs told us he felt 3mos will give him enough time to tell if

's feet will try to relapse. Other things he told us about older

kids with CF were they were slower to relapse than babies, and after age

5 the chances of relapse are minimal. If doesn't need the ATTT,

then he will continue to wear the Dobbs bar for another 6mos. So, I will

be full of advice and wisdom after we get through this, until then I feel

like I am in new territory. plays soccer once a week and has been

off since we started this, I think he will go back this week and see how

he does. Right now a feather could knock him off his feet, but I think he

needs stimulation. Good luck, there are parents of older children around

here but it is hard to find a lot of info. Let me know how Noah does with

his treatments! It would be great to hear how others 's age are

doing.

> Hello my name is , I've been a lurker for a few months and I have

> to say this group is absolutely wonderful and an amazing place for

> information. Here is my situation/questions. My son, Noah, just

> turned 4 in March. He was born with bilateral clubfoot and

> treated using the Ponseti method by Dr. in Tucson, Az when he

> was a baby. He wore the DBB until he was about 2 years old, we had

> problems keeping it on him, he'd take it off himself in the middle of

> the night. We moved from AZ to OH last year and my husband

> switched jobs and during a period of time we did not have insurance and

> this is when Noah's feet, mainly is right foot started to signs of it

> relapsing. I searched ALL over for a doctor in Ohio that does that

> Ponseti method. We live in n, Ohio and I found out there are

> really only a couple, on in Cleveland and one in Cincinnati. So we

> chose the one in Cincinnati @ the Children's hospital. I thought he'd

> be seeing Dr. Von Stein but he is seeing a Dr. Tamai. He's started with

> serial casting again, he is on his 2nd set right now. Here is my

> concern/question.

>

> What is the outcome usually like when an older child is treated using

> serial casting for a relapse? What step is next? Dr. Tamai has said a

> few different things but has not been very clear on what exactly it will

> be. Is the ATTT or tendon lengthing absolutely necessary in a relapse

> case? Is it more difficult on a child my son's age? I've heard that it

> can complicate things and actually make his foot worse.

>

> Please help.. I just want some advice/stories etc, I want to make sure

> I'm making the right choice when it comes to his treatment. Noah's

> right foot was slightly turning in and is kind of tight but he never has

> had any problems with walking/running/etc and his flexibility

> seems decent. It's better in his left foot though.

>

> Has anyone else dealt with Cincinnati Children's? And Dr. Tamai? It's

> almost a 3 hour drive each way for us each week and I want to make sure

> we are going the right course and not wasting time/money and most of all

> possibly not doing what is best for Noah.

>

> Has anyone out there had a child my son's age have a relapse and be

> corrected WITHOUT any type of surgery needed?

>

> Thank you in advance. I truly appreciate this group. It's so nice to

> have somewhere to vent/talk about this where someone actually

> understands and knows what I'm going thru!

>

> Noah - 03/21/02 bilateral clubfoot

> Krystina - 08/10/98

June 14, 2006

Thank you, I really appreciate your reply. I am going to seek out

another opinion. I think maybe I should contact Dr. Ponseti and see

what he says. I have this feeling that the dr Noah is seeing right

now is not treating it correctly. He is not trained in the Ponseti

method (I just discovered this a few days ago) and I don't want Noah

to have an unnecessary surgery if he doesn't need it or if it's not

even going to correct the problem. Should I send pictures to Dr.

Ponseti of Noah's feet? He is in full leg casts right now but we have

an appt w/ his dr down in Cincinnati on Friday and I think I will just

ask him to cut them off and tell them we are going to Dr. Ponseti or a

Ponseti trained doctor. I just want him to hve the best care possible

and actually be treated for clubfoot and not something else! This is

so frustrating, I almost feel like I'm back at the beginning again and

don't know where to start. When we first went to the dr in Cincinnati

they did x-ray's of Noah's feet, something I KNOW isn't really done w/

the Ponseti method. Then he mentioned something about metatardus

adductus to his assistant and I was trying to calm Noah down at the

time and didn't give it much thought until last night reading thru

Ponseti's website again and I saw that it said a lot of dr's treat

clubfoot patients for this when it's different.

Can you possibly tell me what info Dr. Ponseti would want?

>

> Hi , I am not sure how much info I will be, b/c we are new to

this

> as well. My son was born 5/25/02 with bilateral CF, he wasn't

> treated by a Ponseti dr, he did short and full leg casts, DBB, and then

> the straight last shoes(day and night until he was 3 and then inserts in

> his shoes. He didn't actually have a " relapse " since he was never fully

> corrected(residual deformities) I guess is the term. His forefeet were

> adducted(kidney bean shape) and his heels were overcorrected(valgus) and

> he turned his feet in when walking and running. had started

> having pain everytime we put shoes on him. So, his ortho who had

> suggested an osteotomy when he was 5, wanted us to get a 2nd opinion

about

> upping the surgery date. We wrote Dr. Ponseti, he recommended Dr.

> Dobbs(3hrs drive) so we see him at Childrens in St. Louis. At that

appt.

> Dr. Dobbs put in full leg casts and then another set a week

later.

> The 2nd set stayed on 2wks. We rented a wheelchair so he could get

> himself around better at home and pre-school. He really beat his

casts up

> too b/c he walked and scooted everywhere! As a result of that his legs

> ached at night. During this whole treatment time, I took pics of

> everything, and asked lots of questions. He has been out of his

casts for

> 2wks now, and in the Dobbs bar(full time for the first 3 days and

now just

> at night) It took over a week before he was walking in his

feet.

> I was told that it takes older kids up to 2 wks before they are fully

> walking again. We go back in 3mos(Aug) to see if he will need the

ATTT.

> Dr. Dobbs told us he felt 3mos will give him enough time to tell if

> 's feet will try to relapse. Other things he told us about older

> kids with CF were they were slower to relapse than babies, and

after age

> 5 the chances of relapse are minimal. If doesn't need the ATTT,

> then he will continue to wear the Dobbs bar for another 6mos. So, I

will

> be full of advice and wisdom after we get through this, until then I

feel

> like I am in new territory. plays soccer once a week and

has been

> off since we started this, I think he will go back this week and see how

> he does. Right now a feather could knock him off his feet, but I

think he

> needs stimulation. Good luck, there are parents of older children

around

> here but it is hard to find a lot of info. Let me know how Noah

does with

> his treatments! It would be great to hear how others 's age are

> doing.

>

> > Hello my name is , I've been a lurker for a few months and

I have

> > to say this group is absolutely wonderful and an amazing place for

> > information. Here is my situation/questions. My son, Noah, just

> > turned 4 in March. He was born with bilateral clubfoot and

> > treated using the Ponseti method by Dr. in Tucson, Az when he

> > was a baby. He wore the DBB until he was about 2 years old, we had

> > problems keeping it on him, he'd take it off himself in the middle of

> > the night. We moved from AZ to OH last year and my husband

> > switched jobs and during a period of time we did not have

insurance and

> > this is when Noah's feet, mainly is right foot started to signs of it

> > relapsing. I searched ALL over for a doctor in Ohio that does that

> > Ponseti method. We live in n, Ohio and I found out there are

> > really only a couple, on in Cleveland and one in Cincinnati. So we

> > chose the one in Cincinnati @ the Children's hospital. I thought he'd

> > be seeing Dr. Von Stein but he is seeing a Dr. Tamai. He's

started with

> > serial casting again, he is on his 2nd set right now. Here is my

> > concern/question.

> >

> > What is the outcome usually like when an older child is treated using

> > serial casting for a relapse? What step is next? Dr. Tamai has

said a

> > few different things but has not been very clear on what exactly

it will

> > be. Is the ATTT or tendon lengthing absolutely necessary in a

relapse

> > case? Is it more difficult on a child my son's age? I've heard

that it

> > can complicate things and actually make his foot worse.

> >

> > Please help.. I just want some advice/stories etc, I want to make sure

> > I'm making the right choice when it comes to his treatment. Noah's

> > right foot was slightly turning in and is kind of tight but he

never has

> > had any problems with walking/running/etc and his flexibility

> > seems decent. It's better in his left foot though.

> >

> > Has anyone else dealt with Cincinnati Children's? And Dr. Tamai? It's

> > almost a 3 hour drive each way for us each week and I want to make

sure

> > we are going the right course and not wasting time/money and most

of all

> > possibly not doing what is best for Noah.

> >

> > Has anyone out there had a child my son's age have a relapse and be

> > corrected WITHOUT any type of surgery needed?

> >

> > Thank you in advance. I truly appreciate this group. It's so nice to

> > have somewhere to vent/talk about this where someone actually

> > understands and knows what I'm going thru!

> >

> > Noah - 03/21/02 bilateral clubfoot

> > Krystina - 08/10/98

>

June 14, 2006

,

My daughter kelsey is a patient of Dr. Von Stein's. Have you already begun

treatment with this other doctor. Does he practice the Ponseti method because

if he does, I am not familiar with him. To my knowledge, there were no other

Doctors there practicing the method but this may have changed.

I do not have any personal experience with an older child relapsing but I

know some children can be corrected with serial casts alone and some cannot.

It is a good thing however that this is the first plan of attack rather than

jumping straight to surgery.

If you want to get into see Dr. Von Stein, either call the call center and

insist that they schedule you an appointment or call and ask to speak to her

nurse . I don't know where you actually go to your appointments but if

you are coming down I-71, she also sees patients at their outpatient facility

in Mason and this could cut about 45 minutes or so off of your commute. This

is the office we go to as we are in Dayton and this is a closer trip for us.

If you need help, email me at jcypher@... any time and I will call

for you if you need me to and make sure that you get to Dr. Von Stein.

Jenni

jessica_ash25 wrote:

Hello my name is , I've been a lurker for a few months and I

have to say this group is absolutely wonderful and an amazing place

for information. Here is my situation/questions. My son, Noah,

just turned 4 in March. He was born with bilateral clubfoot and

treated using the Ponseti method by Dr. in Tucson, Az when he

was a baby. He wore the DBB until he was about 2 years old, we had

problems keeping it on him, he'd take it off himself in the middle of

the night. We moved from AZ to OH last year and my husband

switched jobs and during a period of time we did not have insurance

and this is when Noah's feet, mainly is right foot started to signs of

it relapsing. I searched ALL over for a doctor in Ohio that does that

Ponseti method. We live in n, Ohio and I found out there are

really only a couple, on in Cleveland and one in Cincinnati. So we

chose the one in Cincinnati @ the Children's hospital. I thought he'd

be seeing Dr. Von Stein but he is seeing a Dr. Tamai. He's started

with serial casting again, he is on his 2nd set right now. Here is my

concern/question.

What is the outcome usually like when an older child is treated using

serial casting for a relapse? What step is next? Dr. Tamai has said

a few different things but has not been very clear on what exactly it

will be. Is the ATTT or tendon lengthing absolutely necessary in a

relapse case? Is it more difficult on a child my son's age? I've

heard that it can complicate things and actually make his foot worse.

Please help.. I just want some advice/stories etc, I want to make sure

I'm making the right choice when it comes to his treatment. Noah's

right foot was slightly turning in and is kind of tight but he never

has had any problems with walking/running/etc and his flexibility

seems decent. It's better in his left foot though.

Has anyone else dealt with Cincinnati Children's? And Dr. Tamai? It's

almost a 3 hour drive each way for us each week and I want to make

sure we are going the right course and not wasting time/money and most

of all possibly not doing what is best for Noah.

Has anyone out there had a child my son's age have a relapse and be

corrected WITHOUT any type of surgery needed?

Thank you in advance. I truly appreciate this group. It's so nice to

have somewhere to vent/talk about this where someone actually

understands and knows what I'm going thru!

Noah - 03/21/02 bilateral clubfoot

Krystina - 08/10/98

Jenni-

Mom to (10/31/01) and Kelsey (11/7/03)happy girl in FAB nights only for

left clubfoot.

__________________________________________________

June 14, 2006

Hi and Welcome! Glad you decided to de-lurk. I can't say

that I've been where you are, but I do know that recasting a 4 year

old back to a perfect foot without surgery is possible, especially if

he was well corrrected the first time.

Relapse does not necessarily mean that you would need any additonal

surgeries - they are having much more success with re-casting kids at

older ages and even avoiding the ATTT in some cases that probably

would have received it previously. Also, the ATTT is sometimes

indicated in a foot that *continues* to relapse, i.e. more than one

relapse, so in that case, again, you might be able to avoid the

surgery if the casting works and his foot does not relapse again. I

would explore all options with casting prior to consenting to surgery,

including consulting with another, maybe more experienced, Ponseti

doctor. Although it sounds like Dr. Tamai is using a conservative

approach in starting with casting which is a good thing so hopefully

all will be well with just the casts.

Can you tell us how his foot was relapsing? Was the whole foot

turning in or just the forefoot (would look sort of like a C shape),

or was it another problem, such as standing on the side of his foot?

Does he still have good dorsiflexion?

The ATTT is a possibility of course, but I would cross that bridge if

and when you come to it. What I mean is, do keep it in your mind that

he may need this, but also, don't stress yourself out worrying about

it. There are several parents here who can give you their experiences

regarding the ATTT, and you can search the archives easily enough by

putting in ATTT in the search field. I believe this procedure is

commonly performed at about Noah's age so I think you are okay in that

regard.

Oh, one other thing I wanted to mention would be regarding brace wear,

if you are successful in the casting process, Noah will probably be

prescribed to wear the brace again. If compliance is a problem with

him in the shoes you may want to look at the new-ish Ponseti/

brace - they are soft leather sandals, many of the older kids can walk

in them because they are low to the ground, and they buckle with three

straps which are very difficult for a child to get off. You can check

them out here:

http://www.mdorthopaedics.com/

I hope this is helpful!

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 12-14hrs/day)

>

> Hello my name is , I've been a lurker for a few months and I

> have to say this group is absolutely wonderful and an amazing place

> for information. Here is my situation/questions. My son, Noah,

> just turned 4 in March. He was born with bilateral clubfoot and

> treated using the Ponseti method by Dr. in Tucson, Az when he

> was a baby. He wore the DBB until he was about 2 years old, we had

> problems keeping it on him, he'd take it off himself in the middle of

> the night. We moved from AZ to OH last year and my husband

> switched jobs and during a period of time we did not have insurance

> and this is when Noah's feet, mainly is right foot started to signs of

> it relapsing. I searched ALL over for a doctor in Ohio that does that

> Ponseti method. We live in n, Ohio and I found out there are

> really only a couple, on in Cleveland and one in Cincinnati. So we

> chose the one in Cincinnati @ the Children's hospital. I thought he'd

> be seeing Dr. Von Stein but he is seeing a Dr. Tamai. He's started

> with serial casting again, he is on his 2nd set right now. Here is my

> concern/question.

>

> What is the outcome usually like when an older child is treated using

> serial casting for a relapse? What step is next? Dr. Tamai has said

> a few different things but has not been very clear on what exactly it

> will be. Is the ATTT or tendon lengthing absolutely necessary in a

> relapse case? Is it more difficult on a child my son's age? I've

> heard that it can complicate things and actually make his foot worse.

>

> Please help.. I just want some advice/stories etc, I want to make sure

> I'm making the right choice when it comes to his treatment. Noah's

> right foot was slightly turning in and is kind of tight but he never

> has had any problems with walking/running/etc and his flexibility

> seems decent. It's better in his left foot though.

>

> Has anyone else dealt with Cincinnati Children's? And Dr. Tamai? It's

> almost a 3 hour drive each way for us each week and I want to make

> sure we are going the right course and not wasting time/money and most

> of all possibly not doing what is best for Noah.

>

> Has anyone out there had a child my son's age have a relapse and be

> corrected WITHOUT any type of surgery needed?

>

> Thank you in advance. I truly appreciate this group. It's so nice to

> have somewhere to vent/talk about this where someone actually

> understands and knows what I'm going thru!

>

> Noah - 03/21/02 bilateral clubfoot

> Krystina - 08/10/98

>

June 14, 2006

Hi !

I hope we can help you out here, it's good to have you here.

I believe it is quite possible to fix the foot with re-casting since it was

fixed correctly the first time around. He will have to go back in the brace,

of course. Dr Ponseti recommends FAB wear until the age of 4 as a standard rule

of thumb these days to reduce the rate/risk of relapse. Sounds like quitting

too soon is what happened with Noah.

The ATTT is not a guarentee - I mean it's a possibility but chances are he'll

avoid it with good casting followed by strict FAB wear. If he does have the

ATTT though, casting first helps make that surgery more successful, and the end

results of the ATTT are almost always wonderful.

Sorry I do not know anything about the dr. you see. I don't know how often he

does an ATTT, or how often he tries to re-correct a toddler with a relapse. In

my opinion at this stage in your game it is important the dr. have experience

with this particular situation as it differes somewhat from new born

corrections. I might be totally wrong and other's here can clarify that.

I've been noticing the trends turning in Iowa though (Ponseti Headquarters) -

they seem to be having much more success casting and re-casting older kids and

avoiding the ATTT with this new success in many more cases than they did just a

few years ago. I think with the internet access so many folks are going there

with their atypical kids and older kids they have had much more experience and

thus have found clues to do it better now. If traveling to Iowa City for a few

weeks was possible for you, I'd suggest that - but again, I don' t know your

current doc. He may be fantastic too. If you would consider Iowa, we can help

you find cheap/free transportation and stay at the Mc House as

many, many of us here have done before. It's all rather simple actually, and

pretty dang cheap in the scheme of things.

My oldest had the ATTT done in Iowa back in 2000. He was not Ponseti-treated

prior to that except a few weeks of casting prior to the surgery. It was a

relatively simple thing though, as far as surgery can be simple. He healed

nicely and was up on his feet in no time. With the ATTt he won't have a brace

afterwards, but if he's casted in to correction you will have to adhere to the

brace very strictly despite Noah's wishes! Think of it as playing in traffic,

he must mind his mommy with no room for negotiation!

I hope things go well with your son also!

ee

Mother of 3 Clubfooted Sons:

- Bilateral Club Feet April 1998

Everett - Bilateral Club Feet September 2003

Garrison - Bilateral Club Feet March 2006

Relapse in older children