[dbsam]

Is anyone familiar with Charcot-Marie-Tooth disease (CMT), Hereditary Motor-Sensory Neuropathy (HMSN)? Has anyone's child displayed symptoms as young as two?

After a year of pain and visits to the pediatrician, my son had genetic testing done July 5th. The neurologist was originally concerned about MD. After several frustrating months receiving bits of information from the doctors, we've been told he has Charcot-Marie-Tooth disease (CMT). We've been passed to another neuro-geneticist and will see him Oct. 17th to get more details. There are many types of this disease and we still do not know which one my son has.

I've searched the forum and have found no posts regarding children with this disorder.

 

[my3peanuts]

There's a child on another forum I'm at with this disease. There's also a specific forum for CMT so you might find help there.

I can pm you with the link if you want.

 

[dbsam]

Quote:

Originally Posted by my3peanuts There's a child on another forum I'm at with this disease. There's also a specific forum for CMT so you might find help there. I can pm you with the link if you want.

yes, please send me the link. Thank you!!

 

[matokate]

we've been trying to tease out what is going on with my daughter and I did come across CMT at one point in my obsessive Googling. She does have some indicators of the disease (if I can remember correctly) but not all of them. What symptoms (is that the right word?) markers? does your son have?

 

[dbsam]

Since the age of two, possibly earlier but he could not communicate as well, he's had severe pain; first in the feet, then calves, thighs, etc. and now up to his lower back. No other symptoms. I really thought it was severe growing pains. We took my daughter to see my son's neurologist because she was having seizures. I asked him about my son (My pediatrician constantly said it was nothing. But then he also said my daughter wasn't having seizures. Sorry if I sound a little bitter...) The neuro did a panel of genetic tests one of which came back abnormal indicating CMT. We have had difficulty getting answers. Another neuro we saw this week at Mayo - for my daughter - was kind enough to look at my son's paperwork. She said based upon the limited info she didn't know which form of CMT but that he had it. As I mentioned earlier, we are seeing yet another doc in Oct.

I guess this was more than you needed to answer your question. Basically just pain in the lower body.

 

[Kodama]

how is CMT treated?

 

[my3peanuts]

Quote:

Originally Posted by dbsam Since the age of two, possibly earlier but he could not communicate as well, he's had severe pain; first in the feet, then calves, thighs, etc. and now up to his lower back. No other symptoms. I really thought it was severe growing pains. We took my daughter to see my son's neurologist because she was having seizures. I asked him about my son (My pediatrician constantly said it was nothing. But then he also said my daughter wasn't having seizures. Sorry if I sound a little bitter...) The neuro did a panel of genetic tests one of which came back abnormal indicating CMT. We have had difficulty getting answers. Another neuro we saw this week at Mayo - for my daughter - was kind enough to look at my son's paperwork. She said based upon the limited info she didn't know which form of CMT but that he had it. As I mentioned earlier, we are seeing yet another doc in Oct. I guess this was more than you needed to answer your question. Basically just pain in the lower body.

Do you mind me asking where you're from? We were just at Mayo a few weeks ago?

 

[dbsam]

Quote:

Originally Posted by Kodama how is CMT treated?

I was told by the doctor meds for pain management and physical and occupational therapy as needed. However, I went to the sites recommended by my3peanuts and was reading many people w/CMT have had surgeries. (These were adult posters.)

 

[matokate]

I've been trying stephen gisalason's (sp?) Core Diet with my daughter-- it is supposed to help with a lot of conditions so you might want to give it a try. considering that my daughter's diet is already pretty restricitve it isn't really that hard. sorry to hear that he is in pain. that must be very hard.

the mantra among peds. seems to be "oh, its nothing" we get that a lot too.

 

[dbsam]

Quote:

Originally Posted by matokate I've been trying stephen gisalason's (sp?) Core Diet with my daughter-- it is supposed to help with a lot of conditions so you might want to give it a try.

Thanks, I'm not familiar w/that diet but will look it up. We have no severe diet restrictions now. My kids are l/o veg and eat no artificail colors, preservatives, HFCS, etc. (It's not for medical reasons so if we are at a party and they have red frosting on the cake I let them eat it.)

 

[matokate]

yes, we have what sounds like the same diet choices- I try to keep my kids away from additives and whatever. the Core Diet just seems to take that a step further to address how certain foods are metabolized into the brain and nervous system, etc. it probably isn't a cure all but it might help with some pain managment.

here is the website:
http://www.nutramed.com/children/index.htm