RE: Extended FAB wear

[Guest guest]

,

That's interesting. I wonder how they'll decide in the future on

recommended FAB wear. When we first researched it last year, we thought

it would be until about 2 and a half years. Now it's a little daunting

to think may be in the FAB until he's 4 or 5 to avoid relapse. But

time flies, I can't believe it's already 1 year since he started in

them! I'd much rather do the FAB for longer than have any kind of

surgery, luckily he tolerates them very well.

I saw my cousin last Sunday for the first time since was born. He

is 32 and was born with unilateral clubfoot. He had serial casting

until a year old and then surgery, he had more surgery at 6 years of

age. It was interesting talking to him about his experiences so far.

He remembers wearing corrective shoes at night, probably until the age

of 10. I suppose there's also a chance of relapse with surgery - even

though the doctors I spoke to last year told me that their surgery would

be '100% successful in correcting the foot'. I'm not sure if the repeat

surgeries that occur are because of relapse or the foot being restricted

from natural development because of scar tissue, etc?

My cousin's foot is quite immobile, he can't stand on tiptoe, can't move

it as freely as his normal foot, but he told me that he hasn't really

suffered much pain and is very active in sport (runs, cycles). He said

he's kind of got over his hang-up about the scars on his foot and calf,

but it was quite a problem when he was younger.

and

24th Jan 2003, bilateral cf

www.clubfoot.co.za

Re: Thanks so much-one more question

Antoinette,

When I took my daughter to Iowa for her check up in early March, Dr.

Ponseti and Dr. Morcuende told me that they have been seeing a number

of older children have sudden and severe regression. I'll try to

relay what I overheard- but keep in mind that I'm just a parent. I

don't think this is a new phenomenon, it's just that parents are

doing a better job of taking their children in for follow up

appointments and staying in touch with the doctors more closely, so

the doctors are able to piece together more information since they

have more patients and more thorough records for each patient. It

seems that the working theory is that some children have relapses

between the ages of 3-5 due to a sudden growth spurt where the

muscles/ligaments cannot keep up with the bone growth. For example,

a child's clubfoot was completely corrected and the child stopped

wearing the brace at age 3, but shortly thereafter the child

experienced a quick regression and needed the ATTT procedure by age

4. Dr. Morcuende said that the severity of the deformity at birth

does not appear to be related to the onset of regression at an older

age. I'm guessing that Tina's latest post about Kavan regressing is

another example of this situation where a sudden growth spurt causes

the foot to relapse.

Try to keep in mind that if the brace is worn as prescribed, the

chance of relapse is 7% or less, but over 70% if it is not worn

diligently.

I think most relapses happen before age 3 and are related to the

child not wearing the brace as prescribed. It makes sense in my

mind, that the child is growing very quickly between the ages of 1

and 3, so that's why the brace is important, to maintain the proper

position of the feet as the legs are growing and changing...much like

the occasional growth spurts in the older children- a child under 3

is in a nearly " constant growth spurt " , making the brace wear that

much more important.

It will be interesting to see if the protocol for brace wear in older

children will change in the near future as the doctors gather more

information about the causes and prevention of regression.

Please remember the comments are just my take on what I heard the

doctors talking about.

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

[Guest guest]

Hi, ,

It's my understanding that clubfoot has a natural tendency to relapse

regardless of the way it's treated.

In the paper on relapses that referenced recently, Dr. Ponseti

says that the same pathology that causes clubfoot to develop in the

first place causes it to relapse, since the condition

remains 'active' for several years. (I think that's why those who

have surgery still are often prescribed AFOs or DBBs, or in past

years wore 'special shoes' well into their childhoods, even after

having had surgery.) Also, at the VH site, Dr. P says " surgery does

not prevent a recurrence " in many cases.

I think what the initial doctors told you is a fairly common (mis)

representation .. that surgery is a quick and easy 'one-time fix',

which can't be guaranteed, and which also doesn't take into account

potential ramifications later in life, especially if repeat surgeries

are needed. Just " potential " .. but it's a matter of choosing the

route that gives you the BEST chance for a good long-term outcome.

I can remember, too, being daunted by the prospect of several years

of FAB wear.. but having done it now (almost) with Claire, I have to

say that it has flown by. (She will be 4 this summer.) Of course all

things being equal, it would be nice to not have to be putting them

on her at night, but it also would've been nice for her to have not

been born with the problem at all. But, since she was, if this is all

we have to do to assure the excellent outcome she has had, it's

really not bad. (I think the brace wear sounds worse, in the

abstract, than it is in practice. It is, after all, just a pair of

shoes to put on, in about 1 minute's time, at the end of each day.) I

have always felt that it is, of course, better than dealing with

casting at an older age because of a relapse, or perhaps a tendon

transfer, and more casting after that, etc.

I know you realize all this as well! But just tossing in my

experience and perspective.. Since we are approaching the end of

brace wear, I'll keep you updated on what I hear from Dr. Ponseti

about it.

Best,

>

> ,

>

> That's interesting. I wonder how they'll decide in the future on

> recommended FAB wear. When we first researched it last year, we

thought

> it would be until about 2 and a half years. Now it's a little

daunting

> to think may be in the FAB until he's 4 or 5 to avoid

relapse. But

> time flies, I can't believe it's already 1 year since he started in

> them! I'd much rather do the FAB for longer than have any

kind of

> surgery, luckily he tolerates them very well.

>

> I saw my cousin last Sunday for the first time since was

born. He

> is 32 and was born with unilateral clubfoot. He had serial casting

> until a year old and then surgery, he had more surgery at 6 years of

> age. It was interesting talking to him about his experiences so

far.

>

> He remembers wearing corrective shoes at night, probably until the

age

> of 10. I suppose there's also a chance of relapse with surgery -

even

> though the doctors I spoke to last year told me that their surgery

would

> be '100% successful in correcting the foot'. I'm not sure if the

repeat

> surgeries that occur are because of relapse or the foot being

restricted

> from natural development because of scar tissue, etc?

>

> My cousin's foot is quite immobile, he can't stand on tiptoe, can't

move

> it as freely as his normal foot, but he told me that he hasn't

really

> suffered much pain and is very active in sport (runs, cycles). He

said

> he's kind of got over his hang-up about the scars on his foot and

calf,

> but it was quite a problem when he was younger.

>

> and

> 24th Jan 2003, bilateral cf

> www.clubfoot.co.za

>