What do dr's do for a relapse?

[Guest guest]

,

You and I may be in the same boat. My son is 17 months and we are going

back to the doctor on Friday for a possible relapse. The doctor said if it

is another relapse then another cast or 2 will help the situation. I am

trying not to imagine having to deal with it until he says that is what we

have to do.

Good luck to you on Thursday.

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his

feet but is very pigeon toed lately. We are taking him to the ortho on

Thursday. I am so nervous about what he will say. Anyone with experience

with a relapse have any information for me? What do the dr's usually do when

a foot is relapsing? Do they just re-apply a cast? If so, is it below the

knee if the kids are walking? I can't imagine a full leg cast right now..

is running all over the place. Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

,

You and I may be in the same boat. My son is 17 months and we are going

back to the doctor on Friday for a possible relapse. The doctor said if it

is another relapse then another cast or 2 will help the situation. I am

trying not to imagine having to deal with it until he says that is what we

have to do.

Good luck to you on Thursday.

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his

feet but is very pigeon toed lately. We are taking him to the ortho on

Thursday. I am so nervous about what he will say. Anyone with experience

with a relapse have any information for me? What do the dr's usually do when

a foot is relapsing? Do they just re-apply a cast? If so, is it below the

knee if the kids are walking? I can't imagine a full leg cast right now..

is running all over the place. Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

I think there are like 3 out of 3000 success stories....still seems like the

way to go to me.

Re: What do dr's do for a relapse?

I am the one who was arguing that surgery is sometimes necessary, as

in the case of my son, who has something similar to spina bifida.

I'm now surprised to read about all these relapses. It sounds like

it has happened to a lot of your kids! Why is this if the Ponseti

method is so " perfect? " Just playing devil's advocate here. Haha.

>

> >

> >

> >

> > We think may be relapsing. He is starting to really turn

in his

> > left foot and his right foot is slightly turned in. He still

walks

> > flat on his feet but is very pigeon toed lately. We are taking

him to

> > the ortho on Thursday. I am so nervous about what he will say.

Anyone

> > with experience with a relapse have any information for me? What

do

> > the dr's usually do when a foot is relapsing? Do they just re-

apply a

> > cast? If so, is it below the knee if the kids are walking? I

can't

> > imagine a full leg cast right now.. is running all over

the

> > place. Please help!

> >

> > Tichauer

> >

> > 17 months

> >

> >

> > __________________________________________________

> >

[Guest guest]

We think may be relapsing. He is starting to really turn in his left foot

and his right foot is slightly turned in. He still walks flat on his feet but is

very pigeon toed lately. We are taking him to the ortho on Thursday. I am so

nervous about what he will say. Anyone with experience with a relapse have any

information for me? What do the dr's usually do when a foot is relapsing? Do

they just re-apply a cast? If so, is it below the knee if the kids are walking?

I can't imagine a full leg cast right now.. is running all over the place.

Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

We think may be relapsing. He is starting to really turn in his left foot

and his right foot is slightly turned in. He still walks flat on his feet but is

very pigeon toed lately. We are taking him to the ortho on Thursday. I am so

nervous about what he will say. Anyone with experience with a relapse have any

information for me? What do the dr's usually do when a foot is relapsing? Do

they just re-apply a cast? If so, is it below the knee if the kids are walking?

I can't imagine a full leg cast right now.. is running all over the place.

Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

I was in your shoes last year. Livie was 30 months old and walking flat on her

foot, but was turning her foot in when walking. Her ortho said it was just

intoeing and not to be concerned about it. We weren't comfortable with that and

took Livie to see Dr. Ponseti. He confirmed that she was having a relapse. He

felt that one or two casts would fix it all up. He put on the first cast which

was a full length, bent at the knee 90 degrees, plaster cast. He wrapped the

plaster with fiberglass to reinforce it since she was walking. It took her

about one hour to figure out how to walk in that thing. She surprised the heck

out of me. I never for a minute thought that she would be able to walk, but she

did.

Her cast was left on for two weeks. I believe that is standard protocol in

older children when casting for relapses since their ligaments and such don't

stretch as well as they did as infants. We went back in two weeks expecting to

get another cast, but when Dr. Ponseti saw her foot, he was pleased with the

amount of correction and she went back into her brace for 16 hours a day. She

stayed in the shoes at 16 hours for a year. We returned again this May and he

reduced her hours to 12-14 and she's doing just fine now.

I know that it seems daunting to have to face a cast or casts on an older child,

but, surprisingly, for us it was really no big deal. The worst part of the

whole thing for Livie was that she couldn't take a real bath for two weeks. She

loves her bath time and was really upset about that.

I'm sorry to hear that you think might be relapsing. I was heartbroken

when I realized that Livie was relapsing. I hope that you get good news from

the ortho, but if not, try not to worry, it really seems more awful than it

actually is.

I have a photo of Livie in her relapse cast. If you are subbed to the CFPics

group, I can send it there if you are interested in seeing it.

Jen & Livie (10-18-01 severe left clubfoot)

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his feet

but is very pigeon toed lately. We are taking him to the ortho on Thursday. I am

so nervous about what he will say. Anyone with experience with a relapse have

any information for me? What do the dr's usually do when a foot is relapsing? Do

they just re-apply a cast? If so, is it below the knee if the kids are walking?

I can't imagine a full leg cast right now.. is running all over the place.

Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

I was in your shoes last year. Livie was 30 months old and walking flat on her

foot, but was turning her foot in when walking. Her ortho said it was just

intoeing and not to be concerned about it. We weren't comfortable with that and

took Livie to see Dr. Ponseti. He confirmed that she was having a relapse. He

felt that one or two casts would fix it all up. He put on the first cast which

was a full length, bent at the knee 90 degrees, plaster cast. He wrapped the

plaster with fiberglass to reinforce it since she was walking. It took her

about one hour to figure out how to walk in that thing. She surprised the heck

out of me. I never for a minute thought that she would be able to walk, but she

did.

Her cast was left on for two weeks. I believe that is standard protocol in

older children when casting for relapses since their ligaments and such don't

stretch as well as they did as infants. We went back in two weeks expecting to

get another cast, but when Dr. Ponseti saw her foot, he was pleased with the

amount of correction and she went back into her brace for 16 hours a day. She

stayed in the shoes at 16 hours for a year. We returned again this May and he

reduced her hours to 12-14 and she's doing just fine now.

I know that it seems daunting to have to face a cast or casts on an older child,

but, surprisingly, for us it was really no big deal. The worst part of the

whole thing for Livie was that she couldn't take a real bath for two weeks. She

loves her bath time and was really upset about that.

I'm sorry to hear that you think might be relapsing. I was heartbroken

when I realized that Livie was relapsing. I hope that you get good news from

the ortho, but if not, try not to worry, it really seems more awful than it

actually is.

I have a photo of Livie in her relapse cast. If you are subbed to the CFPics

group, I can send it there if you are interested in seeing it.

Jen & Livie (10-18-01 severe left clubfoot)

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his feet

but is very pigeon toed lately. We are taking him to the ortho on Thursday. I am

so nervous about what he will say. Anyone with experience with a relapse have

any information for me? What do the dr's usually do when a foot is relapsing? Do

they just re-apply a cast? If so, is it below the knee if the kids are walking?

I can't imagine a full leg cast right now.. is running all over the place.

Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

I posted our experience with a relapse to , but wanted to say good luck to

you too! I hope it is nothing!

Jen & Livie

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his

feet but is very pigeon toed lately. We are taking him to the ortho on

Thursday. I am so nervous about what he will say. Anyone with experience

with a relapse have any information for me? What do the dr's usually do when

a foot is relapsing? Do they just re-apply a cast? If so, is it below the

knee if the kids are walking? I can't imagine a full leg cast right now..

is running all over the place. Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

Thanks ... I appreciate all of your info and the pics. Livie is a cutie

by the way. I guess they can adjust to walking if they want it bad enough.. it

is just so sad to think about it. I will let everyone know what the doc says.

wrote:

I posted our experience with a relapse to , but wanted to say good luck to

you too! I hope it is nothing!

Jen & Livie

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his

feet but is very pigeon toed lately. We are taking him to the ortho on

Thursday. I am so nervous about what he will say. Anyone with experience

with a relapse have any information for me? What do the dr's usually do when

a foot is relapsing? Do they just re-apply a cast? If so, is it below the

knee if the kids are walking? I can't imagine a full leg cast right now..

is running all over the place. Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

When Owen was treated for a relapse, his foot was manipulated and

then put back into a cast. The cast was full leg and was the same as

the 'last Ponseti cast' in the series - in otherwords, the post-

tenotomy cast. Although he was not walking yet at the time, he

adjusted to it without any problems.

Fingers crossed that you have an easy transition!

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

>

>

>

> We think may be relapsing. He is starting to really turn in

his left foot and his right foot is slightly turned in. He still

walks flat on his feet but is very pigeon toed lately. We are taking

him to the ortho on Thursday. I am so nervous about what he will say.

Anyone with experience with a relapse have any information for me?

What do the dr's usually do when a foot is relapsing? Do they just re-

apply a cast? If so, is it below the knee if the kids are walking? I

can't imagine a full leg cast right now.. is running all over

the place. Please help!

>

> Tichauer

>

> 17 months

>

>

> __________________________________________________

>

[Guest guest]

,

has had TWO relapses. The first time I was sure it was relapsing I headed

to our Ortho again and he said that it wasn't a relapse. Ummm... walking on the

side of the foot isn't relapsed??? So I called Dr. P and headed to Iowa. Sure

enough. Relapse. A series of three casts by Dr. P followed. They were Dr. P's

atypical casts for atypical feet. It appeared as though her feet where sticking

completely backward but in reality her leg was turned at the knee and then her

feet were turned 90 to 100 degrees as well. They were a trip. It was hard for

to sit up because her feet didn't have anywhere to go. LOL

Anyway, we soaked the last of that series off mid January and waited until our

check up mid March. We thought all would be well but alas no. Another relapse

or perhaps she wasn't quite ready after the last three but for whatever reason

her tootsies were in those unique casts once again but only one for three weeks.

I was sweating her return in June to see him the week before we headed to the

beach for vacation (sand in casts... oh goody) but he said she was fine and we

left without plaster attached for the first time ever! LOL I was so excited I

could hardly stand it. ROFL!

I'll send pics of her casts to the Pic group if you are interested. I have some

that show her feet turned backward. It might make you appreciate yours more

Chris

What do dr's do for a relapse?

We think may be relapsing. He is starting to really turn in his left

foot and his right foot is slightly turned in. He still walks flat on his

feet but is very pigeon toed lately. We are taking him to the ortho on

Thursday. I am so nervous about what he will say. Anyone with experience

with a relapse have any information for me? What do the dr's usually do when

a foot is relapsing? Do they just re-apply a cast? If so, is it below the

knee if the kids are walking? I can't imagine a full leg cast right now..

is running all over the place. Please help!

Tichauer

17 months

__________________________________________________

[Guest guest]

- we have experience of a relapse at 3 yrs - hopefully you will

not need our advice then!! I recollect some children being re-cast at

about 17 - 20 months - hopefully you will be worrying about nothing -

regards,

>

>

>

> We think may be relapsing. He is starting to really turn in his

> left foot and his right foot is slightly turned in. He still walks

> flat on his feet but is very pigeon toed lately. We are taking him to

> the ortho on Thursday. I am so nervous about what he will say. Anyone

> with experience with a relapse have any information for me? What do

> the dr's usually do when a foot is relapsing? Do they just re-apply a

> cast? If so, is it below the knee if the kids are walking? I can't

> imagine a full leg cast right now.. is running all over the

> place. Please help!

>

> Tichauer

>

> 17 months

>

>

> __________________________________________________

>

[Guest guest]

I am the one who was arguing that surgery is sometimes necessary, as

in the case of my son, who has something similar to spina bifida.

I'm now surprised to read about all these relapses. It sounds like

it has happened to a lot of your kids! Why is this if the Ponseti

method is so " perfect? " Just playing devil's advocate here. Haha.

>

> >

> >

> >

> > We think may be relapsing. He is starting to really turn

in his

> > left foot and his right foot is slightly turned in. He still

walks

> > flat on his feet but is very pigeon toed lately. We are taking

him to

> > the ortho on Thursday. I am so nervous about what he will say.

Anyone

> > with experience with a relapse have any information for me? What

do

> > the dr's usually do when a foot is relapsing? Do they just re-

apply a

> > cast? If so, is it below the knee if the kids are walking? I

can't

> > imagine a full leg cast right now.. is running all over

the

> > place. Please help!

> >

> > Tichauer

> >

> > 17 months

> >

> >

> > __________________________________________________

> >

[Guest guest]

Exactly...This is the way for us also!

and

BL CF 12/16/03

-- In nosurgery4clubfoot , " Gerace "

<cgerace@v...> wrote:

> I think there are like 3 out of 3000 success stories....still

seems like the

> way to go to me.

>

> Re: What do dr's do for a relapse?

>

> I am the one who was arguing that surgery is sometimes necessary,

as

> in the case of my son, who has something similar to spina bifida.

> I'm now surprised to read about all these relapses. It sounds like

> it has happened to a lot of your kids! Why is this if the Ponseti

> method is so " perfect? " Just playing devil's advocate here. Haha.

>

>

>

>

> >

> > >

> > >

> > >

> > > We think may be relapsing. He is starting to really turn

> in his

> > > left foot and his right foot is slightly turned in. He still

> walks

> > > flat on his feet but is very pigeon toed lately. We are taking

> him to

> > > the ortho on Thursday. I am so nervous about what he will say.

> Anyone

> > > with experience with a relapse have any information for me?

What

> do

> > > the dr's usually do when a foot is relapsing? Do they just re-

> apply a

> > > cast? If so, is it below the knee if the kids are walking? I

> can't

> > > imagine a full leg cast right now.. is running all over

> the

> > > place. Please help!

> > >

> > > Tichauer

> > >

> > > 17 months

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

I believe those who have had surgery can also relapse. Just ask my neighbor.

It is the way of the condition. I'd much rather deal with shoes and what not

than surgery unless absolutely, positively necessary. Yes, Dr P says my

daughter will most likely have to have the ATTT surgery but given what we've

learned about the 'correction' surgery where they cut the whole foot open and

try to realign the bones from materials my husband processes at work I'd take a

relapse or two over the years first any day.

Re: What do dr's do for a relapse?

I am the one who was arguing that surgery is sometimes necessary, as

in the case of my son, who has something similar to spina bifida.

I'm now surprised to read about all these relapses. It sounds like

it has happened to a lot of your kids! Why is this if the Ponseti

method is so " perfect? " Just playing devil's advocate here. Haha.

>

> >

> >

> >

> > We think may be relapsing. He is starting to really turn

in his

> > left foot and his right foot is slightly turned in. He still

walks

> > flat on his feet but is very pigeon toed lately. We are taking

him to

> > the ortho on Thursday. I am so nervous about what he will say.

Anyone

> > with experience with a relapse have any information for me? What

do

> > the dr's usually do when a foot is relapsing? Do they just re-

apply a

> > cast? If so, is it below the knee if the kids are walking? I

can't

> > imagine a full leg cast right now.. is running all over

the

> > place. Please help!

> >

> > Tichauer

> >

> > 17 months

> >

> >

> > __________________________________________________

> >

[Guest guest]

Exactly! And people who have children that don't relapse and don't

have problems tend to be the most silent since they don't need as

much support. Doesn't mean it isn't a struggle, it is just less of

one so there is less to talk about.

Aleksander hasn't shown signs of replapse, but if he does, I'd rather

deal with a few casts!

> >

> > >

> > >

> > >

> > > We think may be relapsing. He is starting to really

turn

> in his

> > > left foot and his right foot is slightly turned in. He still

> walks

> > > flat on his feet but is very pigeon toed lately. We are

taking

> him to

> > > the ortho on Thursday. I am so nervous about what he will

say.

> Anyone

> > > with experience with a relapse have any information for me?

What

> do

> > > the dr's usually do when a foot is relapsing? Do they just re-

> apply a

> > > cast? If so, is it below the knee if the kids are walking? I

> can't

> > > imagine a full leg cast right now.. is running all over

> the

> > > place. Please help!

> > >

> > > Tichauer

> > >

> > > 17 months

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

And probably why Dr Ponseti says a 95% success rate on his website.

To me that's a far better odds than the 80% chance of surgery we were given

by the non-Ponseti doctors we saw at first ... not to mention the almost 50%

chance of recurring surgeries.

Moss

STEPS CHARITY

www.steps.org.za

Re: What do dr's do for a relapse?

I am the one who was arguing that surgery is sometimes necessary, as

in the case of my son, who has something similar to spina bifida.

I'm now surprised to read about all these relapses. It sounds like

it has happened to a lot of your kids! Why is this if the Ponseti

method is so " perfect? " Just playing devil's advocate here. Haha.

>

> >

> >

> >

> > We think may be relapsing. He is starting to really turn

in his

> > left foot and his right foot is slightly turned in. He still

walks

> > flat on his feet but is very pigeon toed lately. We are taking

him to

> > the ortho on Thursday. I am so nervous about what he will say.

Anyone

> > with experience with a relapse have any information for me? What

do

> > the dr's usually do when a foot is relapsing? Do they just re-

apply a

> > cast? If so, is it below the knee if the kids are walking? I

can't

> > imagine a full leg cast right now.. is running all over

the

> > place. Please help!

> >

> > Tichauer

> >

> > 17 months

> >

> >

> > __________________________________________________

> >

[Guest guest]

I would much rather that my son only needed casting, too, believe

me. But as I discussed before, he has nerve issues because of his

caudal regression syndrome. I was really just surprised that there

are so many relapses with the Ponseti method, that's all!!!!

> > >

> > > >

> > > >

> > > >

> > > > We think may be relapsing. He is starting to really

> turn

> > in his

> > > > left foot and his right foot is slightly turned in. He

still

> > walks

> > > > flat on his feet but is very pigeon toed lately. We are

> taking

> > him to

> > > > the ortho on Thursday. I am so nervous about what he will

> say.

> > Anyone

> > > > with experience with a relapse have any information for

me?

> What

> > do

> > > > the dr's usually do when a foot is relapsing? Do they just

re-

> > apply a

> > > > cast? If so, is it below the knee if the kids are walking?

I

> > can't

> > > > imagine a full leg cast right now.. is running all

over

> > the

> > > > place. Please help!

> > > >

> > > > Tichauer

> > > >

> > > > 17 months

> > > >

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

le, as far as I know, relapses are not exclusive to The Ponseti

Method - surgical corrections also produce their fair share. I'm not

sure what options are available for relapses following a surgical

correction (perhaps further surgeries?) but in The Ponseti Method,

relapses are usually treated with additional manipulations and

casting followed by the continued wear of the FAB until treatment is

completed.

I wouldn't call any method 'perfect' but if presented with a choice

of a surgical correction or the less invasive non-surgical method of

correction (both offering the same result), I would definitely choose

the less invasive approach FIRST. If it failed and I was out of

options (a second AND a third opinion would be warranted, in my

opinion), then of course, surgical correction would then become a

necessity for our situation.

Good luck to you.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

> >

> > >

> > >

> > >

> > > We think may be relapsing. He is starting to really turn

> in his

> > > left foot and his right foot is slightly turned in. He still

> walks

> > > flat on his feet but is very pigeon toed lately. We are taking

> him to

> > > the ortho on Thursday. I am so nervous about what he will say.

> Anyone

> > > with experience with a relapse have any information for me?

What

> do

> > > the dr's usually do when a foot is relapsing? Do they just re-

> apply a

> > > cast? If so, is it below the knee if the kids are walking? I

> can't

> > > imagine a full leg cast right now.. is running all over

> the

> > > place. Please help!

> > >

> > > Tichauer

> > >

> > > 17 months

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

It's just the way the Ponseti method is discussed here, I thought it

was a lot more successful, that's all.

> > >

> > > >

> > > >

> > > >

> > > > We think may be relapsing. He is starting to really

turn

> > in his

> > > > left foot and his right foot is slightly turned in. He still

> > walks

> > > > flat on his feet but is very pigeon toed lately. We are

taking

> > him to

> > > > the ortho on Thursday. I am so nervous about what he will

say.

> > Anyone

> > > > with experience with a relapse have any information for me?

> What

> > do

> > > > the dr's usually do when a foot is relapsing? Do they just

re-

> > apply a

> > > > cast? If so, is it below the knee if the kids are walking? I

> > can't

> > > > imagine a full leg cast right now.. is running all

over

> > the

> > > > place. Please help!

> > > >

> > > > Tichauer

> > > >

> > > > 17 months

> > > >

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

It is more successful than anything else available, and if in some cases

there is a relapse, it either requires more casting or a less invasive

surgical procedure. This is all documented by Dr Ponseti and other doctors

- % relapses, treating them, long-term outcomes for over 40 years in some

patients, it's all available on various internet resources. I've found that

there's a lot more research available on-line about the Ponseti method than

the surgical alternatives.

Moss

STEPS CHARITY

www.steps.org.za

Re: What do dr's do for a relapse?

It's just the way the Ponseti method is discussed here, I thought it

was a lot more successful, that's all.

> > >

> > > >

> > > >

> > > >

> > > > We think may be relapsing. He is starting to really

turn

> > in his

> > > > left foot and his right foot is slightly turned in. He still

> > walks

> > > > flat on his feet but is very pigeon toed lately. We are

taking

> > him to

> > > > the ortho on Thursday. I am so nervous about what he will

say.

> > Anyone

> > > > with experience with a relapse have any information for me?

> What

> > do

> > > > the dr's usually do when a foot is relapsing? Do they just

re-

> > apply a

> > > > cast? If so, is it below the knee if the kids are walking? I

> > can't

> > > > imagine a full leg cast right now.. is running all

over

> > the

> > > > place. Please help!

> > > >

> > > > Tichauer

> > > >

> > > > 17 months

> > > >

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

I think that for the most part, The Ponseti Method IS successful. I

think that a lot of the problems that some of us have encountered are

due, in large part, to doctors who have said that they were following

the Ponseti Method but have failed to implement all of the

protocols. If all of us could have our children treated by Dr.

Ponseti himself, I'm sure that we would. However, as popularity of

this method increases, so does the chance that the success rate of

this method is somewhat skewed by those doctors who believe that they

can do 'better' by taking shortcuts and following the proper protocol.

To give you a better idea, my son was treated locally. His doctor

told me that he was using the Ponseti Method. When Owen's casting

was completed, the doctor examined his foot and was quite impressed

with it. I agreed that his foot looked much better but I did voice

some concerns over certain aspects of the foot (the ankle didn't look

quite right) but was assured that it was 'as good as he would have

hoped to get it with surgery'. After a couple of months, the nagging

feeling that I had as a parent was still there. With encouragement

from this support group, I forwarded digital pictures directly to Dr.

Ponseti for his opinion. He happened to agree with me in that the

foot was not quite fully corrected. Owen was then treated for

a 'relapse' at 6 months old. It took one additional cast by a more

experienced 'Ponseti doctor' and the correction was complete. I came

to find out later that our doctor had only just begun to use the

Ponseti Method when Owen was born. My son was one of his 'first'

patients. As such, he didn't feel that it was necessary to use the

brace after casting (here's where some doctors feel that they only

need to follow some aspects of the protocol). I, however, insisted

that he follow the Ponseti protocol and prescribe the brace.

As I said, there will be doctors who will try to take shortcuts when

using the method. For others, there will be a learning curve as they

discover, through their trials, that they really do need to follow

the protocol of the method. Our doctor now prescribes the brace for

all of his patients. He also switched from using short leg casts to

long leg casts.

Hopefully more doctors will catch on and soon the 95% success rate

that Dr. Ponseti is able to boast will be universal.

Daiga and Owen, 02/04/03

Unilateral LCF, FAB 14/7

> > > >

> > > > >

> > > > >

> > > > >

> > > > > We think may be relapsing. He is starting to really

> turn

> > > in his

> > > > > left foot and his right foot is slightly turned in. He

still

> > > walks

> > > > > flat on his feet but is very pigeon toed lately. We are

> taking

> > > him to

> > > > > the ortho on Thursday. I am so nervous about what he will

> say.

> > > Anyone

> > > > > with experience with a relapse have any information for me?

> > What

> > > do

> > > > > the dr's usually do when a foot is relapsing? Do they just

> re-

> > > apply a

> > > > > cast? If so, is it below the knee if the kids are walking?

I

> > > can't

> > > > > imagine a full leg cast right now.. is running all

> over

> > > the

> > > > > place. Please help!

> > > > >

> > > > > Tichauer

> > > > >

> > > > > 17 months

> > > > >

> > > > >

> > > > > __________________________________________________

> > > > >

[Guest guest]

In our case it was 100% successful although I am one who posted about

our experience with a relapse. Livie did indeed have a relapse at

2.5 years old. Her relapse, however, had nothing whatsoever to do

with the effectiveness of the method. It had to do with her doctor

releasing her from the brace at 1.5 years old. He felt that she had

loose ligaments and didn't need to wear the brace anymore. He was

wrong. Unfortunately, we listened to him.

Had we continued to weaar the brace on Livie until she was 3-4 (as

per the protocol) I have no doubt that she would have not had a

relapse. Keep in mind also that you are going to get a

disproportionately high number of people with " problems " on boards

like this because they are the people who are reaching out for

solutions. A family that has had complete success with the method

with no problems whatsoever may never even know this boarad exists

because they have never had a need for support.

I don't think anyone here has ever said that this method is perfect.

Perfect would be if none of our babies were ever born with clubfoot

or any other birth defect. I do believe that people here have said

and will continue to say over and over again that the alternative of

surgery is just not the better choice.

I understand that your child will require surgery and there are

situations that will always require surgery. In the vast majority of

children though this method will and does work producing a much

better result.

Jen & Livie (10-18-01 severe left clubfoot)

> > > >

> > > > >

> > > > >

> > > > >

> > > > > We think may be relapsing. He is starting to really

> turn

> > > in his

> > > > > left foot and his right foot is slightly turned in. He

still

> > > walks

> > > > > flat on his feet but is very pigeon toed lately. We are

> taking

> > > him to

> > > > > the ortho on Thursday. I am so nervous about what he will

> say.

> > > Anyone

> > > > > with experience with a relapse have any information for me?

> > What

> > > do

> > > > > the dr's usually do when a foot is relapsing? Do they just

> re-

> > > apply a

> > > > > cast? If so, is it below the knee if the kids are walking?

I

> > > can't

> > > > > imagine a full leg cast right now.. is running all

> over

> > > the

> > > > > place. Please help!

> > > > >

> > > > > Tichauer

> > > > >

> > > > > 17 months

> > > > >

> > > > >

> > > > > __________________________________________________

> > > > >

[Guest guest]

YOur story sounds like ours.. When my daughter was born we knew

nothing of clubfoot much less of Dr.P so we were recommended to our

local small town ortho. After several castings her feet I will admit

her feet looked better than when she was born but I knew they still

did not look right. So we were referred to another Dr. in another

city and I read some, not much about Dr.P and I asked the new ortho

if he followed the Ponseti Method and he agreed that he did, even

showed me pictures of how to " Ponseti Cast " . I was so happy and

relieved.

After the tenotmy and her casts were removed her feet would not

stay in her brace. We had a HORRIBLE time with her shoes so I

emailed Dr.Ponseti pictures of her feet and he told me her feet were

not corrected. I told him that this Dr. told me he followed his

method but unfortunetly he was not on his list of Dr. and although

he beleived to know him, he told me he did not finish his training

with him.

The point I am trying to make is these Dr.'s who say they are

following the Ponseti Method but are not. They are " taking

shortcuts " as you said at the cost of kids feet and later tell you

that surgery will be needed as I was told. Thank goodnes I found

Dr.Ponseti and he corrected her feet. He told me if I had not taken

her to him she would not have been able to walk with the way

the " Ponseti " Dr. had left her feet. We were so impressed with

Dr.Ponseti that I wish we were closer to do the chekups with him. I

truly believe his method is worth it as my daughter is living proof.

Luckily we have not had a relapse but if we do I will surely be

heading to Iowa!

It is understandable that sometimes surgery is the only way but

sometimes you have a choice as we did. Its up to us as parents to

make the best informed decision for our children even though it may

be different from another parents. Bottom line:I beleive all of here

are doing what is best for our children!

and

BL CF 12/16/03

> > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > > We think may be relapsing. He is starting to

really

> > turn

> > > > in his

> > > > > > left foot and his right foot is slightly turned in. He

> still

> > > > walks

> > > > > > flat on his feet but is very pigeon toed lately. We are

> > taking

> > > > him to

> > > > > > the ortho on Thursday. I am so nervous about what he

will

> > say.

> > > > Anyone

> > > > > > with experience with a relapse have any information for

me?

> > > What

> > > > do

> > > > > > the dr's usually do when a foot is relapsing? Do they

just

> > re-

> > > > apply a

> > > > > > cast? If so, is it below the knee if the kids are

walking?

> I

> > > > can't

> > > > > > imagine a full leg cast right now.. is running all

> > over

> > > > the

> > > > > > place. Please help!

> > > > > >

> > > > > > Tichauer

> > > > > >

> > > > > > 17 months

> > > > > >

> > > > > >

> > > > > > __________________________________________________

> > > > > >

[Guest guest]

In the past couple of years I've been here there have been a number

of parents who have experienced relapse after being released from the

brace early for various reasons... even Dr. Ponseti has released

patients early due to what was called *loose ligaments*. I believe

many of these children were released because they were too loose and

the abduction was more severe than it should be at that age (I think

around 2- 2-1/2yo). In light of the relapses associated with these

early releases Dr. Ponseti now does not release children from the

brace early, but rather has extended the minimum wear time to 3 years

minimum (perhaps 3.5y, I may be a bit off on this) and a possible 5y

wearing the FAB. I haven't heard of a child being released due to

loose ligaments in a looooong time.

A number of the parents who have written here about a relapse only

wrote an excited message warning parents not to release their

children from the brace early, no matter what the doc says. A small

few were released by Dr. P., but many were released by other docs for

various reasons including being so perfectly corrected at 2 that

there could not possibly be a need for the brace anymore. I can

remember at least 4 of these kinds of posts in the past year here,

busy parents who don't have time for full time list participation but

who knew who to tell their story to and beg parents not to release

early. I don't think but one was actually having surgery, the others

were in relapse casts and back to 16+ hours in the brace at or around

the age of 3-3-1/2. Which could clearly suck!

Additionally I think many of the relapse stories we're seeing are due

to deficient initial treatment. The success rate for children who

weren't initially treated with the Method (properly) is going to be

lower than for those who were treated by a good doc and braced

strictly in the first place. I also think some of the problems could

be attributed to the recent trend to drop from 23/7 to nights only

(10-12hr/d) by many, many docs practicing the Method. I am under the

impression that this is a major contributor to this method

failing. It all goes back to the concept that doc must *follow the

method exactly with no modifications* which is so resisted with this

method lately. With the increasing number of docs starting to

practice the Method who modify at all we're going to see the success

rates drop significantly in their practices. We know that bracing

must be maintained strictly for the Method to work, yet the docs

don't seem to feel it's important. So yeah, they're going to see

relapses as a result. And then are going to be under the impression

that it can't possibly produce the results of 95% success. I find

this very frustrating as you can probably see.

Some children, even if braced strictly will relapse. This is a

given. The good news is that if it happens it often can be corrected

in just a couple of casts and back to longer hours in the FAB. It's

not as big a deal as it seems for most children. Those who continue

to relapse will probably need surgery, which is the ATTT and is

performed at a later age after numerous attempts at re-casting. But

you keep re-casting till the child is at the age where it shows there

is no other option than surgery. The other good news is that

children treated in this way will experience a far less invasive

surgery than the ones done to correct CF without previous Ponseti

Method treatment. That in itself is the best reason to take your

chances with the Ponseti Method regardless of prior treatment

methods. Even untreated CF in older children (I've heard ages in the

6-9 range IIRC) has shown that with Ponseti type casting applied

before surgery the results are much better than if not

treated. That's cool if you ask me.

All of us are at risk for relapse and bracing is often the thing that

determines if it happens or not. This is why the brace is so

important, and hours... just do the long hours when baby is

little. It is your best chance at overcoming a relapse if it might

be in your child's future. If you do all you can to reduce the

chance... it's the best you can do. It's not insurance, in the rare

instance a child who never missed a night in the FAB will relapse but

the mass majority of us will fall into that 95% if everything is

perfect. More children do just fine even being treated improperly at

first than relapse... many more. Happy people don't need come to

email lists for support, no reason to bother. I think more of them

are out there than we know here in this fairly small online community

of CF parents.

Kori

At 07:59 AM 7/14/2005, you wrote:

>Exactly...This is the way for us also!

> and

>BL CF 12/16/03

>

>

>-- In nosurgery4clubfoot , " Gerace "

><cgerace@v...> wrote:

> > I think there are like 3 out of 3000 success stories....still

>seems like the

> > way to go to me.

> >

> > Re: What do dr's do for a relapse?

> >

> > I am the one who was arguing that surgery is sometimes necessary,

>as

> > in the case of my son, who has something similar to spina bifida.

> > I'm now surprised to read about all these relapses. It sounds like

> > it has happened to a lot of your kids! Why is this if the Ponseti

> > method is so " perfect? " Just playing devil's advocate here. Haha.

> >

> >

> >

> >

> > >

> > > >

> > > >

> > > >

> > > > We think may be relapsing. He is starting to really turn

> > in his

> > > > left foot and his right foot is slightly turned in. He still

> > walks

> > > > flat on his feet but is very pigeon toed lately. We are taking

> > him to

> > > > the ortho on Thursday. I am so nervous about what he will say.

> > Anyone

> > > > with experience with a relapse have any information for me?

>What

> > do

> > > > the dr's usually do when a foot is relapsing? Do they just re-

> > apply a

> > > > cast? If so, is it below the knee if the kids are walking? I

> > can't

> > > > imagine a full leg cast right now.. is running all over

> > the

> > > > place. Please help!

> > > >

> > > > Tichauer

> > > >

> > > > 17 months

> > > >

> > > >

> > > > __________________________________________________

> > > >