Re: & Kaitlyn

[Guest guest]

,

I just wanted to add my 2 cents about the sandals. We have not

experienced any blisters or sores. This is the only brace has used so I

can't speak on the differences or make any comparisons to the other type of

braces. I have not seen any parents post about blisters or sores caused by the

sandals. I know that they are expensive at $350 but is working on

getting a code for sandals so that insurance might start covering them. Best of

luck with your decision. I know you only want to do what is best for your

daughter.

Bridget

& Rich jenrichtrevillian@...> wrote:

,

I'd be interested if you could send me the link to the study that you

found comparing the FAB (a.k.a. DBB) to AFO use. My gut instinct

tells me that Kaitlyn's brace is not set up properly if she's having

blister issues on her non-clubfoot. Maybe the shoes are too big,

allowing the movement between the foot and the shoe? It seems odd

that you'd have problems getting the heel all the way down in the

shoe for a foot that is not a clubfoot! This is usually an indicator

(with a clubfoot) that the foot is not properly corrected and not

ready for the brace, but doesn't apply to what you've described with

Kaitlyn. Are the width of the shoes on the brace too far apart or

too close together? Maybe she needs two different sized shoes (my

daughter is also unilateral and has significant foot size difference)?

Your doctor isn't quite right when he says that " cost " is the reason

why the FAB is selected over AFO's (at least for doctors using the

Ponseti method, that is). The FAB is used because it has been found

to be the best brace to prevent relapse. There have been many list

discussions about FAB vs. AFO on the list- here's a link to one

recent post:

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/21760

The FAB keeps the feet in external rotation (which is why both feet

are involved in unilateral cases- to make this possible) and keeps

the toes pointed upward to keep the Achilles tendon stretched- these

are the two key elements that a brace must provide to prevent

relapse. A KAFO would keep the foot in external rotation (an AFO

can't), but the KAFO involves bracing the knee, and doesn't allow the

bending that the FAB does, making it less desirable as far as muscle

development in an infant. Was Kaitlyn's last cast rotating her foot

outward (almost looks backwards) to 70 degrees external rotation?

Was her shoe for her clubfoot set up at 70 degrees rotation and the

shoe for her non-clubfoot set at 20-45 degrees?

Dr. Ponseti's group did try the AFO's, but found them to be less

effective in preventing regression, and went back to the FAB.

If you're interested in researching further, let me know and I can

try to give you some links to the info. Or, you could email Dr. P

directly and ask for the input direct from the source!

Please, if you still have it, send me the link to the AFO vs. FAB

study that you referenced in your post. There are very few children

that the standard FAB with Markell straight last shoes won't work

for, even for most of those special cases, a custom shoe (the

brace) allows the FAB to work for them in preventing relapse.

I hope this info is of interest to you...keep us posted on Kaitlyn's

progress. p.s. we had AFOs for before we switched to Dr.

Ponseti, so I do have some experience with it- make sure there are

lots of air holes drilled in the plastic- we learned this the hard

way-especially important for sweaty summer months!

& (3-16-00)

left clubfoot

> My daughter had a similar problem recently. She got a sore,

healing cast,

> shoes back on and then the sore came back. The doc said she didn't

need a cast

> this time but to leave the shoes off. Did that, shoes back on,

sore came

> back. Cut hole in shoe and saw that her heel was not staying flat

like it was

> supposed to. To get her heel to stay flat the shoes had to be so

tight that she

> started to get a sore on the top of her foot from the strap. So, we

went back

> to the doctor. He recommended a custom made AFO. She got fitted

for the AFO

> on Friday and we are going to pick it up on Tues. I questioned him

on the

> efficacy of the AFO vs. DBB. He said the results are the same as

well as the

> rate of relapse. He also said that DBB's less costly and that is

why they are

> the first choice of treatment. (an AFO costs $650.00 each time you

get one) I

> researched what he said on the web and found a group that studied

babies with

> DBB vs. AFO's and they found no difference in the level of

correction or rate

> of relapse. I completely believe in Dr. Ponseti but the DBB did

not work for

> us. Maybe when Kaitlin's foot grows we will try again. Also the

AFO will not

> have to involve her right foot- which is the foot that keeps

getting the

> sores.

>

> Freeman

> Kaitlin Freeman 3/9/04 LCF

>

> Freeman

>

>

>