Son recently diagnosed with CMT

[Guest guest]

My 5 year old son has just been diagnosed with CMT type 2. He is the

first in the family to have any symptoms. He has been a toe walker

since first starting to walk and has undergone several procedures to

correct this (including serial casting, bilateral achilles

lengthening surgery with casting, and botox with casting and AFOs).

Each was successful for a period of time but eventually he returned

to his toe walking habits and is unable to flatten his feet. His

neurologist is diagnosing CMT even though NCV and EMG results were

normal. Other than toe walking his symptoms include lack of balance

and coordination, lack of muscle mass in the calves, tight

hamstrings, calf muscles and achilles tendons. His fine motor skills

seem to be normal.

I was just wondering if anyone knows of a similar case or has any

advice. The doctor says that in this case, there are no tests to

definitely diagnose CMT. I have so many questions but it seems that

there is no way to determine how progressive the CMT will be as he

gets older, if he does in fact have CMT.

Thank you for any responses.

Beth