I'm not sure how to explain this. So please bare w/ me.
Does anyone know anything about Charcot Marie Tooth (C.M.T. for short)?? It is a form of Muscular Dystrophy (M.D.). I've found a bunch of information on the internet. However, I'm not for sure what stuff is true and what isn't. Like for example: I've heard it starts showing up about tweens to early teens, etc. Don't mean to get off subject. But what age is tweens??
Anyhow, does anyone have any child(ren) w/ C.M.T.?? IF so, what signs did they have and about what age did they start showing up?? My ex (my son's father) has C.M.T. He said his started showing up about 12 or 13 y/o, I think it was. Does anyone know what kind of tests there are (IF any) for C.M.T.?? I've also heard there's so many diff. variations of C.M.T. and the sevarity (sp?) varies from person to person. I think my son may have C.M.T. or some type of M.D. However, I've been unable to find a doc. willing to test my son. Is it true the only way to test for C.M.T. is to a blood and or a muscle biopsy?? Any help would greatly be appreciated.
I don't know about all forms a MD, but my cousin started showing signs when he was 2 yrs. I know that his type of MD is passed on by the mothers genes. I do believe that is the case with all forms, but I could be wrong.
I know that his signs were that he would tire easy and not be able to walk for long distances. He just wasn't as active as other 2 yr olds. And they started to suspect something.
He was not expected to live past 8, but he is now 35. It has been a very rough life and we've almost lost him many times, but we are blessed to still have him in our lives.
I don't know much about C.P - but I am curious why you can't find a doctor willing to test him? Have you spoken with his pediatrician about your concerns? I have a handicapped son and I know that there are lots of resources out there if you need help with your son depending on his age. If you are truly concerned, you may have to force your doctor to listen to your concerns and have him tested... I did! Good luck.
Crystal - you should seek out a Pediatric neurologist with a list of oddities or symtpoms...then let him or her decide on tests. Preliminary first round testing might be Electromyography (EMG) or MRI (magnetic Resonance imaging) or lab (blood or urine) to determine if signs are muscle or nerve related disorder.
Might take 2-3 appts spaced 2 months apart for doc to get onboard with any invasive testing.