Re: Begining Ponseti late in the game

[Guest guest]

My child began the Ponseti method at almost 10 months of age. He had a

teutonomy (I think that's how it's spelled) done at 12 months. He is almost 21

months now. He wears a DBB 10-12 hours a day. His foot looks perfectly normal

now. His right foot is club. We had a terrible Dr. here in our town and his

foot was not getting any better. We now drive over 3 hours one way to see a

great Ponseti method Dr. He runs and jumps. If you were to look at his feet

you would not be able to tell he ever had a clubfoot.

I hope this is helpful. I am so glad we switched Dr.'s and that I listened to

my instincts.

LaRena

P.S. Feel free to email me personally if you would like to talk more.

Jenni emkelsmama@...> wrote:

My name is Jenni and my daughter Kelsey has a left clubfoot. She is

11 months old. Kelsey began treatment with a ped ortho at 10 days old

but after several casts, an AFO brace etc she was really not much

better than at birth. There is no Ponseti Doctor here in Dayton so we

decided to take her to Cincinnati to see the Doctor there. She placed

the cast back on and we have begun this again.

My question is-- has anyone else begun the POnseti method this late

with their child and if so, what success did you have? I would be

interested to know what your experience was with treatment at this age.

Thanks for the information.

Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

My child began the Ponseti method at almost 10 months of age. He had a

teutonomy (I think that's how it's spelled) done at 12 months. He is almost 21

months now. He wears a DBB 10-12 hours a day. His foot looks perfectly normal

now. His right foot is club. We had a terrible Dr. here in our town and his

foot was not getting any better. We now drive over 3 hours one way to see a

great Ponseti method Dr. He runs and jumps. If you were to look at his feet

you would not be able to tell he ever had a clubfoot.

I hope this is helpful. I am so glad we switched Dr.'s and that I listened to

my instincts.

LaRena

P.S. Feel free to email me personally if you would like to talk more.

Jenni emkelsmama@...> wrote:

My name is Jenni and my daughter Kelsey has a left clubfoot. She is

11 months old. Kelsey began treatment with a ped ortho at 10 days old

but after several casts, an AFO brace etc she was really not much

better than at birth. There is no Ponseti Doctor here in Dayton so we

decided to take her to Cincinnati to see the Doctor there. She placed

the cast back on and we have begun this again.

My question is-- has anyone else begun the POnseti method this late

with their child and if so, what success did you have? I would be

interested to know what your experience was with treatment at this age.

Thanks for the information.

Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton so

we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

Jenni,

Just about a month ago my son was scheduled to have surgery on his

feet when I found Dr. Ponseti and this group. He was ten months old

and I was worried it was too late to start. Everyone in this group

and Dr. Ponseti (Yes I called him and asked him) told me it was not

too late.

We are on our second casting, my son has bilateral clubfoot, and I

have seen a big difference in his right foot. The left foot has

always been tighter and more stubborn. For the first time my son's

right foot looks almost straight and that was after just one cast. We

went through a similar situation you did with another orthopedist who

did not do the Ponseti method. Our doctor is 220 miles away and we go

weekly, but I've found Angel Flight and they have volunteer pilots

who fly us to our appointments.

I'd love to keep up with you on your daughter's progress and my son's

progress. Maybe we can encourage each other and compare notes.

and (11/10/03 bilateral clubfoot)

[Guest guest]

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton so

we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

Jenni,

Just about a month ago my son was scheduled to have surgery on his

feet when I found Dr. Ponseti and this group. He was ten months old

and I was worried it was too late to start. Everyone in this group

and Dr. Ponseti (Yes I called him and asked him) told me it was not

too late.

We are on our second casting, my son has bilateral clubfoot, and I

have seen a big difference in his right foot. The left foot has

always been tighter and more stubborn. For the first time my son's

right foot looks almost straight and that was after just one cast. We

went through a similar situation you did with another orthopedist who

did not do the Ponseti method. Our doctor is 220 miles away and we go

weekly, but I've found Angel Flight and they have volunteer pilots

who fly us to our appointments.

I'd love to keep up with you on your daughter's progress and my son's

progress. Maybe we can encourage each other and compare notes.

and (11/10/03 bilateral clubfoot)

[Guest guest]

Hi,

My son also has a unilateral clubdfoot for his right leg. I tried

the notmal castings till 6 months. After which we were able to find a

ponseti doctor. Only problem for late starting is the duration of the

treatment will be longer(.It took nearly 2months for my son.). He is

going to have his last cast this week. The improvement was quite good.

So, donot worry and it is always better late than never.

With Best Wishes.

> >

> >

> > My name is Jenni and my daughter Kelsey has a left clubfoot. She

is

> > 11 months old. Kelsey began treatment with a ped ortho at 10

days

> old

> > but after several casts, an AFO brace etc she was really not much

> > better than at birth. There is no Ponseti Doctor here in Dayton

so

> we

> > decided to take her to Cincinnati to see the Doctor there. She

> placed

> > the cast back on and we have begun this again.

> > My question is-- has anyone else begun the POnseti method this

late

> > with their child and if so, what success did you have? I would be

> > interested to know what your experience was with treatment at

this

> age.

> >

> > Thanks for the information.

> > Jenni-- mom to Kelsey, 11 months and 3.

>

>

> Jenni,

>

> Just about a month ago my son was scheduled to have surgery on his

> feet when I found Dr. Ponseti and this group. He was ten months old

> and I was worried it was too late to start. Everyone in this group

> and Dr. Ponseti (Yes I called him and asked him) told me it was not

> too late.

>

> We are on our second casting, my son has bilateral clubfoot, and I

> have seen a big difference in his right foot. The left foot has

> always been tighter and more stubborn. For the first time my son's

> right foot looks almost straight and that was after just one cast.

We

> went through a similar situation you did with another orthopedist

who

> did not do the Ponseti method. Our doctor is 220 miles away and we

go

> weekly, but I've found Angel Flight and they have volunteer pilots

> who fly us to our appointments.

>

> I'd love to keep up with you on your daughter's progress and my

son's

> progress. Maybe we can encourage each other and compare notes.

>

> and (11/10/03 bilateral clubfoot)

[Guest guest]

Hi I'm not on here too often--my son is now 3.

We were living overseas when he was a baby but I was also in your

shoes--I didn't think his feet were improving and he was getting

older. I brought him back to the U.S. at 9 months of age and we

started treatment in Iowa at that point.

In any case, no it is not too late. But you need a Ponseti doctor,

and a very experienced one at that since it is getting later.

Personally I would take him straight to Iowa so you can get help

from the most experienced doctor there is.

It made all the difference in the world for our son. I'm not sure

he ever would have walked correctly and had normal use of his feet

had we not pursued the Ponseti method. His feet are great now.

Best of luck.

Jen

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She

is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton

so we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

Hi I'm not on here too often--my son is now 3.

We were living overseas when he was a baby but I was also in your

shoes--I didn't think his feet were improving and he was getting

older. I brought him back to the U.S. at 9 months of age and we

started treatment in Iowa at that point.

In any case, no it is not too late. But you need a Ponseti doctor,

and a very experienced one at that since it is getting later.

Personally I would take him straight to Iowa so you can get help

from the most experienced doctor there is.

It made all the difference in the world for our son. I'm not sure

he ever would have walked correctly and had normal use of his feet

had we not pursued the Ponseti method. His feet are great now.

Best of luck.

Jen

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She

is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton

so we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

Jenni,

The Ponseti method has been shown in the U.S. to work for children

up to 2 years of age. There have also recently been some doctors in

Brazil and elsewhere who are using the Ponseti method for untreated

children 3-4 years of age and some using variations of the method

even up to 7-8 years of age.

Since 7-8 year old of even 3-4 year old untreated children don't

exist in the U.S., there would be no data here concerning that. Be

assured that your 11 month old should do fine with the Ponseti

method if the treating doctor follows the method exactly as

designed. Here are some links to prior studies on the Ponseti

method.

http://pages.ivillage.com/ponseti_links/id1.html

and (3-17-99)

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She

is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton

so we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

hi jenni, i am also new to this and my story is similar. i a have a

9 and half month boy (jonas)who had 5 months of treatment on left

foot and it didn't do much. our current doctor has downgraded his

condition to skewfoot but the treatment is the same. we just had a

ponseti cast put on again last week. here we go again.sorry i don't

have any advice...just wanted to let youknow that you are not alone.

cheers sam

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She

is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton

so we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

Hi Jenni,

My daughter, , went through a similar scenario. She was

treated by a ped ortho who was doing some of the things done in the

Ponseti method but she was not following the method correctly and my

daughter's foot was not fully corrected. At exactly 10 months old

we switched to Dr. Herzenberg at Sinai Hospital in Baltimore, MD. A

2.5 hour drive each way. had 6 casts, a second tenotomy,

the 3 week cast following tenotomy and is now back in the DBB

fulltime for about another 5-7 weeks. She is now 13 months old.

She is not walking yet but does pull up and cruises a little when

she has her hour of " free tootsie " time. Her foot looks AMAZING in

my opinion. SOOOO much better than it did 3 months ago I am so

glad I sought a second opinion.

Good luck! Keep us posted!

Marilouise

9/9/03, LCF, DBB 23/7

Owen and 3/20/99

>

>

> My name is Jenni and my daughter Kelsey has a left clubfoot. She

is

> 11 months old. Kelsey began treatment with a ped ortho at 10 days

old

> but after several casts, an AFO brace etc she was really not much

> better than at birth. There is no Ponseti Doctor here in Dayton

so we

> decided to take her to Cincinnati to see the Doctor there. She

placed

> the cast back on and we have begun this again.

> My question is-- has anyone else begun the POnseti method this late

> with their child and if so, what success did you have? I would be

> interested to know what your experience was with treatment at this

age.

>

> Thanks for the information.

> Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

Jenni,

Welcome to the board. I am not 100% confident that there are doctors

in Cincinnati who are following the Ponseti method completely (I know

there are doctors there who are claiming to use the method, but I am

not sure if they are " tweaking " the method, or following it exactly

as it was developed). I would recommend that you question your

daughter's new doctor as to what their success rate is in correcting

clubfoot and get exact information on what their treatment and

bracing protocols are. There is a parents' checklist at this same

site that referred you to for the medical reports:

http://pages.ivillage.com/ponseti_links that can assist you

in " interviewing " doctors. At 11 months old, your daughter is

certainly not too old to be corrected non-surgically, however, you

don't want to waste precious time with any doctor who is not

experienced in treating " older babies " . As a possibility of getting

to Iowa City easier, you might consider contacting Angel Flights, a

volunteer pilot association who will fly you there for treatment.

Your daughter's story sounds similar to mine, but we switched to the

Ponseti method when she was 4 months old. She is now 4.5 and doing

great. Here's her website: http://ponseticlubfoot.freeservers.com/

Please ask any questions!!!

Regards,

& (3-16-00)

left clubfoot

[Guest guest]

,

My son Tyler was 4 days old when his first ortho started casting

him. He had 2 tenotomies and a heal cord lengthening with that doc,

plus too many casts to count. My son was 18 months when we went to

see a Ponsetti doc. Tyler's feet have never looked better. He has

went through the castings again and another tenotomy and is now in a

dbb made by his doc. He is doing wonderfully! Just hoping we can

keep the great correction his ponsetti doc has achieved.

Tyler's mommy

bi lateral atypical cf 1/14/03

new Dobb's brace 9/9/04

4/12/94 non cf

5/24/95 non cf

> >

> >

> > My name is Jenni and my daughter Kelsey has a left clubfoot. She

> is

> > 11 months old. Kelsey began treatment with a ped ortho at 10

days

> old

> > but after several casts, an AFO brace etc she was really not much

> > better than at birth. There is no Ponseti Doctor here in Dayton

> so we

> > decided to take her to Cincinnati to see the Doctor there. She

> placed

> > the cast back on and we have begun this again.

> > My question is-- has anyone else begun the POnseti method this

late

> > with their child and if so, what success did you have? I would be

> > interested to know what your experience was with treatment at

this

> age.

> >

> > Thanks for the information.

> > Jenni-- mom to Kelsey, 11 months and 3.

[Guest guest]

Jenni,

Oh, yes! I forgot that Dr. Von Stein was on Dr. P's list. Just so

you know, you still need to be diligent about knowing what is and

what is not standard protocol for the P method. Just because a

doctor is on " the list " does not mean that they are following the

method 100% or getting the results that they should be. It's

unfortunate, but parents need to be " up to speed " on what to expect

so that they can identify warning signs during their child's

treatment and question the doctor if necessary.

I'm glad things are going well with Dr. Von Stein so far! Please

keep us posted on how your little Kelsey progresses! It sounds like

she's doing great!

Regards,

& (3-16-00)

left clubfoot