testing a child for CMT - my experience

[Guest guest]

While I do not have children with CMT, I was once a child who was tested for

CMT when I was 10, after 3 years of falling on the playground, fatigue, and

footrolling when I walked. This all took place in the orthopedist's office.

Similiar to what described about standing on my toes, the diagnosing doc

also had me try to walk on my heels only, toes off the ground. I couldn't do it.

But, I walked on my toes beautifully - me, the toewalker. Many with CMT are

Toewalkers by nature - even with high arches.

Because my parents believed that a diagnosis was necessary in order that I may

need treatment to help with balance, fatigue, falls, etc., I had many other

manual neurological tests at this time (this was WAY before the blood tests for

DNA and about five years before my first EMG)

The real dead-giveaway test for the doc was to have me walk up and down his

office halls about 50 times, with and without shoes, so he could watch my feet

and legs. From this he was able to determine that I had pes cavus feet, and also

that I had some peroneal weakness in my lower right leg.

Following that CMT diagnosis, I was fortunate to have tendon transplants on both

feet which allowed me to walk without " footroll " and to this day have kept me on

my feet (along with some in-shoe orthotics made much later).

A very simple course of physical therapy was given to me, with exercises I did

in between visits. In addition, I was advised to swim alot and walk in the sand

to strengthen my feet and legs.

As for the fatigue issue, I was given medications; I was also fortunate to have

potassium therapy and participate in a drug trial program.

Once my parents knew my diagnosis, along with my doctor, they met with

principals/headmasters of my schools to explain I was unable to walk long

distances in short periods of time, and thus I was exempt from P.E. and logged

many hours in the library and study halls, doing homework, reading, learning in

other ways. (This way way before 504's and IEPs)

My parents were also able to meet with my Camp Fire Girl leaders and camp

counselors to alert them to my fatigue issues that may come up on scout hikes.

As an adult now, I firmly believe that all this definitely helped me and also

has held my CMT progression off. I believe had I not had early intervention, I

would not be in such good shape today at age 53, with still relatively little

progression.

As for the insurance issue, it was never a problem while I was under our Family

Plan with Dad's employer, nor was it ever difficult for me to get as an adult on

my own. And I mean both health insurance and life insurance.

Just my 5 cents on the subject.

~ Gretchen

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