Re: nerve biopsy -for Rebeca

[Guest guest]

Rebeca,

As Gretchen stated, you definately want to have the nerve conduction

test done before the nerve biopsy. My 8 year old daughter's story

sounds very similar to your daughter's. She had her first nerve

conduction test done this past April which showed slower than normal

readings which was an indication of a demyelinating disorder. Her

neurologist mentioned CMT and she had the blood test for

demyelingating CMT through Athena which came back negative. It was

after that when she had the muscle & nerve biopsies and a spinal tap.

Both the muscle and nerve biopsies came back abnormal. The spinal

tap came back showing an elevated protein level. This was an

indication that she could possibly have CIDP (chronic inflammatory

demyelingating polyneuropathy). This is a treatable condition.

Has anyone mentioned this as being a possibility with your daughter?

CIDP can be acquired a number of different ways such as through a

vaccination, illness, injury.

One of the treatments for CIDP is an IVIG. My daughter was given a

5 day treatment of this in August however it did not improve her

symptoms. That is when our neurologist said that he was certain

that she had some type of CMT.

I decided to get another opinion and took Carley to see a

neurologist in St. Louis who is more experienced in dealing with

CIDP. After reviewing all of Carley's medical reports and having

her go through another round of nerve conduction testing, she

thought that Carley did have CIDP, not CMT. She mentioned that

Carley could have acquired this as young as 12 months old and she

was not at all concerned that the IVIG treatment did not show any

improvements. Since she could have possibly had it for so long it

would have taken more treatments before she showed improvement.

Also, some people with CIDP do not respond to IVIG treatment. She

prescribed Carley to go on weekend doses of prednisone. Carley has

been on this for three weekends now and we have noticed improvements

in her strength.

Carley also has some of the symptoms that your daughter has. High

arches, foot drop and a noticeable gait when she walks.

Just my opinion, but I would have the nerve conduction test done

first. I am not a doctor or an expert at reading the results, but

here are some things to look for in those results:

1. Find out if there is a conduction block. If there is, this is

a sign that it could be CIDP.

2. Compare the nerve conduction speeds from all of her

extremities. The doctor in St. Louis told me that people with CMT

have readings that are consistent regardless of where they are taken

from. In people with CIDP, the readings vary greatly among the

extremities.

The first time Carley underwent the nerve conduction test she was

mildly sedated. This was a great assistance in helping her get

through the test. Please feel free to contact me directly if you

have any other questions.

Mike