Re: Dorsiflexion and nerve problems?

[Guest guest]

Hi andra- we have a similar situation. We are now in Iowa

waiting for the custom clamshell AFO that Theo will wear during the

day to assist walking and then he will wear his DBB/Markells at

night. We saw Dr P for the first time on monday and he said he felt

that Theo's foot was not " Atypical " (or complex) as they have

defined it, but atypical in the sense that he has calf muscle

weakness and lack of ankle dorsiflexion (but can move toes and foot

side to side). Theo has already had a normal spine and head MRI.

Dr P said that he has now seen 4 cases of this and that we are now

in empirical territory (medicalease meaning we try stuff and see

what works). He said that in one of the cases, Dr Herzenberg (whom

we also see) had explored the nerves surgically and found a missing

branch of the peroneal nerve in the calf. Interestingly, we have

been doing electrical stimulation of Theo's calf (arranged through

our excellent PT at home) and Dr P was positive about this. The

estim already is having some benefit with some movement noted. If

any others of our small " group " can write in, maybe we can compare

notes and help each other!

H.

> > >

> > > Yep, Dr. Ponseti and Morcuende both agreed to prescribe the

real

> AFO

> > > for my daughter. Her feet would not relapse in a way that they

> would

> > > turn inward. Her problem is keeping the dorsiflexion and

> apparently the

> > > only way to stretch the heel if she doesn't flex her feet

upwards

> is to

> > > wear the real AFO's. was wearing the Mitchel shoes but

we

> are

> > > going to discontinue the use to proceed with the AFO's.

> > >

> > > Has anyone had an experience with the AFO's? I don't know much

> about

> > > them....any help would be appreciated.

> > >

> > > Thanks a lot

> > >

> > > andra

> > >

> >

>

[Guest guest]

We haven't been thru this particular situation, however I would like to comment

on the possibility of it being more common in atypical/complex clubfeet. I

think the way you stated that might have actually been backwards, and that it

is more like if there is a nerve issue present, it is more likely that the

clubfoot will be complex. Following that idea, I think that any child with

clubfoot that has other issues is more likely to have complex clubfoot. Kai has

a lot of other physical issues going on besides his clubfoot, and it is starting

to look like he has a disease/syndrome involving the connective tissue. If this

is the case, it would completely explain the complex clubfoot - both the fact

that he has a clubfoot at all, and that it is complex.

I think this is just something for us to be aware of; complex clubfoot can be

correction related or spontaneous, or it can be caused by some other issue.

Angel

Dorsiflexion and nerve problems?

Thanks to everyone who gave me advice on the AFO's. We are getting

the AFO's on November 23rd. wore the shoes for 4

months and she had gotten quite used to them. Actually, I think she

is missing them because she wakes up at night when she tries to turn.

doesn't move her ankle upwards or sideways, the doctors in

Iowa think that while it can be a matter of development, there can be

a nerve branch missing. In the second case, she would walk with a

drop foot. Dr. Ponseti recommended an MRI of the spine when she is

older although the chances of correcting a nerve problem by surgery

are 1 in 100.

Has anyone here gone through a similar situation? I think babies with

atypical clubfeet are more prone to this problem than babies with

regular clubfeet.

> >

> > Yep, Dr. Ponseti and Morcuende both agreed to prescribe the real

AFO

> > for my daughter. Her feet would not relapse in a way that they

would

> > turn inward. Her problem is keeping the dorsiflexion and

apparently the

> > only way to stretch the heel if she doesn't flex her feet upwards

is to

> > wear the real AFO's. was wearing the Mitchel shoes but we

are

> > going to discontinue the use to proceed with the AFO's.

> >

> > Has anyone had an experience with the AFO's? I don't know much

about

> > them....any help would be appreciated.

> >

> > Thanks a lot

> >

> > andra

> >

>

[Guest guest]

Thanks for your comment.

We are going to try PT as well.

I will let you know of the progress

andra

> > > >

> > > > Yep, Dr. Ponseti and Morcuende both agreed to prescribe the

> real

> > AFO

> > > > for my daughter. Her feet would not relapse in a way that

they

> > would

> > > > turn inward. Her problem is keeping the dorsiflexion and

> > apparently the

> > > > only way to stretch the heel if she doesn't flex her feet

> upwards

> > is to

> > > > wear the real AFO's. was wearing the Mitchel shoes

but

> we

> > are

> > > > going to discontinue the use to proceed with the AFO's.

> > > >

> > > > Has anyone had an experience with the AFO's? I don't know

much

> > about

> > > > them....any help would be appreciated.

> > > >

> > > > Thanks a lot

> > > >

> > > > andra

> > > >

> > >

> >

>