Re: many questions...first appointment soon

[Guest guest]

Carmella,

When the word * axonal * is used in describing the syndrome, it

means CMT Type 2. (as I understand it, this is consistent with your son's Athena

test results)

As for what to expect: here's where you must assume the leadership

role. Your son has had all the tests and received a diagnosis. Now

comes * the lifestyle *. Ask the doctor about physical therapy, or

perhaps getting your son involved in Yoga or Aquatics. Your doctor

no doubt can recommend PTs familiar with CMT needs. (If I remember correctly,

Don, one of our members, has wonderful things to say about a swimming program

he's involved with)

Ask also for several referrals to Certified Orthotists, to discuss possible

needs for shoe orthotics, AFOs, shoes, etc. You may also wish a referral to an

orthopedist at this time. Perhaps if you feel your son needs it, the doctor may

refer you to a personal counselor to help him manage having CMT and emotional

issues.

You might also ask the doctor about nutritition and supplements use -

although it doesn't seem Western medicine is too up on this still. If your

son's blood tests (the routine blood tests) are deficient in some minerals or

out of balance, the doc may recommend a multi-vitamin, or other therapy.

There isn't any * certain * treatment for CMT - of any type. Yet. We all travel

many roads to be comfortable and happy and live purposefilled lives.

Hope all goes well at the appointment.

~ Gretchen

[Guest guest]

Hi Carmella,

You may want to make sure the doc you are seeing has copies of all of

the test results as well.

Hope all goes well.

Tonya