Re: night use of AFOs in a child

[Guest guest]

Hi /Gretchen:

It is to aid in keeping his achilles tendons stretched and avoid

contractures developing. His tendons had tightened significantly due to all

the toe walking and he could only just bend one foot to 90 degrees. The

tight tendons were making his feet rock inward and adding to the instability

causing him to fall alot. Tendon release surgery is often one of the first

proceedures that can be required and by wearing AFOs that keep a positive

stretch on his feet each night we may be able to significantly put off the

surgery. Already he has gone from just 90deg to a bend of +5-10 and we've

really noticed an improvement in his gait etc.

One lady we spoke to mentioned that she did the same thing and has avoided

all surgery into adulthood, but then I don't know how serious her case is.

The physiatrist at the children's hospital neuromuscular clinic recommended

the AFOs this way and his orthopedic surgeon has recommended wearing them

during the day for stability but also because they may help forestall bone

deformity developing. Apparently keeping the feet in a better stance while

weight bearing may slow down the changes. We're noticing hammer toes

starting though. I know his pediatrician said we want to keep him out of

AFOs too much daytime, as they can cause other muscles to weaken, but then

it's a play off versus other effects.

We're crossing our fingers and toes that this all helps

Cheers

Sally

regarding AFOs - to Sally

Sally, I'm just curious - Why does Gavin have to wear AFOs while he sleeps?

K.

and Sally, I am wondering the same thing. I thought AFOs are to help

one walk - but why wear them at night? Unless does the doctor think they

will correct Gavin's feet/legs/muscles? ~ Gretchen

What color or groups of colors would you choose in describing how you manage

your CMT? Our newest poll needs your input!

/polls

</polls>

[Guest guest]

Dear Ruth:

Thank you so much..you guessed right as you can see from my reply to

...I'm really pleased to hear that it worked for you.

We're very lucky to have such an excellent neuromuscular team at the

hospital here. They're very supportive and take a very practical approach.

Cheers

Sally

[Guest guest]

Thanks Bob...

Its funny you should mention fads...I makes sense that all these things are

tried off and on with variants...but that dennis browne splint sounds awful.

Cheers

Saly

[Guest guest]

Hi Sally,

I also hope it helps. Back in my day my doctor had made casts for me to sleep

in. They were lined with something soft. They came with belts for me wrap around

wrap around them. I think I was about 5 or 6. I tried them for 2 or 3 nights.

That is all I could stand. Night splints were suggested for Adam but it never

happened. We need a treatment already!