Re: Clubfeet and distal arthrogryposis

July 11, 2006

Can someone explain how clubfeet affects the hands? I am not sure I

understand.....how do you know??? Do they use casting for that as well?

Clubfeet and distal arthrogryposis

Hi,

My name is and this is my first visit to this website

support group. My son was born on May 6,2006 with bilateral

clubfeet and both his hands are affected as well. His official

diagnosis is distal arthrogryposis. I found out about the clubfeet at

my 20 week u/s and was able to line up a doctor to do the Ponseti

method. I was born with this condition as well and had surgery to

correct the cf. I have lots of pain and stiffness and so I want to

avoid my son having the same. We met with the doc prenatally and he

was very pro the ponseti method(he is on the list of docs on Dr.

Ponseti's website and I had e-mailed Dr. Ponseti during my pregnancy

and this was the doc he recommended. It usually takes double the

casts to correct than congenital cf. What concerned me was that when

I brought to see him for his first set of casts(day 6 of life)

he seemed to be very pessimistic as to whether or not this would work

because of the arthrogryposis. I was upset by his attitude but my

husband said he was just being honest with us. However I went to see

another doc recently for my sons hands who also does the ponseti

casting and he said he has seen it work even with this condition.

Today was cast #9 and he bsically doesn't feel he is getting the full

correction and that surgery would probably be needed. I was just

wondering if anyone on this site has a child who's cf were from

arthrogryposis and if the ponseti method worked for them. I'm also

planning on calling Dr. Ponseti. Thanks

July 11, 2006

,

Welcome to you and little !

I do know of a very few families here with children affected by various degrees

of arthrogryposis. I don't recall that any of them were successful in avoiding

surgery entirely, though they did wind up needing very little by way of surgical

correction. If you enter arthrogyrposis as the search term at the group's

homepage, it will bring up these stories.

The Global-HELP booklet mentions the arthrogypotic clubfoot in its discussion of

" resistant clubfoot " on page 9:

" Is Ponseti management useful for resistant clubfoot?

Ponseti management is appropriate for use in children with arthrogryposis,

myelomeningocele, and Larsen syndrome. The results may not be as gratifying as

they are in the child with idiopathic clubfoot treated from birth, but there are

advantages to this approach. The first is that the clubfoot could respond

completely to Ponseti management, with or without the need for an Achilles

tenotomy. Additionally, even partial preoperative correction of these severe

deformities can decrease the extent of surgery and improve the ability to

approximate the edges of the contracted skin.

Arthrogrypotic clubfoot is perhaps the most challenging. Often,

initial early heel cord tenotomy is required to enable any manipulative

deformity correction. Creating a calcaneocavus deformity is not a concern

because of the severe contracture of the posterior joint capsules. Anticipate

the need for surgery. "

The entire booklet can be viewed and downloaded at:

http://www.global-help.org/publications/Ponseti.2Ed.pdf

The idea is that the Ponseti method is an appropriate way to begin treating any

clubfoot. Best case, it will work as perfectly as it does for your " garden

variety " clubfoot. Worst case the baby will need some surgical

intervention--and in the case of an arthrogyrpotic foot, this seems a pretty

likely outcome. One thing to keep in mind is that at the end of the day, the

manipulations of the Ponseti method are beneficial no matter what. A clubfoot

is like a crazy, 3-D puzzle that has to be undone in *just the right way*. What

sets the Ponseti method apart from other methods of manipulating, stretching and

casting is that, when it is done correctly, it IS *just the right way*. There

are components to an arthrogyrpotic clubfoot that will make this puzzle a little

different and a little harder--and perhaps even impossible to solve without

surgery. But some of the tiny bones, some of the tendons, some of the important

joints are just where they should be, stretched just as

they should be and that would not be the case if you hadn't tried the Ponseti

method.

I wish I had better words of encouragement for you. Hopefully some of the

families who have dealt with arthrogyrposis will chime in here as well. If you

have any other questions, please don't hesitate to ask them. And please keep us

updated on 's progress. My family joins me in wishing you and yours all the

best,

Naomi

The Family, North Coast of California

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

monyd64 wrote: Hi,