My son is 16 now. He was only recently diagnosed with CMT. He is still able to get around with no problems but the drs have told me he has lost all his sensory response in both legs and arms and muscle lost on the left side. Does anyone else have this going on?
Tater, is it certain that this is CMT, rather than Myositis or CIDP? Has your son had genetic testing?
Hi Taterbug. I was diagnosed at 14 with the exact same symptoms as your child. Life is different living with CMT but my favorite saying "It Is What It Is." Couldn't take P.E. in school or was very limited. I was and am slower than a turtle! I am now 54 years old but did go to Shriners and have one foot surgery to "Fuse" my left ankle so at least one foot was good? I wear a brace on my other foot and my hands shake pretty bad from the disease but I can still write legibly but have to go slow.
I have five sisters and one brother. One sister has the disease very bad and my brother is like me and has it but still works. We have always had to be limited on what we could do as we get older but both had very physically challenging jobs when we were younger. Fence installers and working in warehouses. But we both are very blessed to do what we do and don't use the disease as an excuse to be lazy.
It would be easier for you if you had the disease and not your child! My advise would be to ride him twice as hard as any other child and don't let it be an excuse because he will be Great!
Trust in the Lord in all you do. I have people ask me about my disease weekly and I always tell them, "if you are pretty, you are pretty." "If you are ugly, you are ugly and if you have a disease, you just survive." We can't control this disease nor can we take it away so we deal with what we have and thank the Lord that at least we have feet and arms.
Stay away from tobacco like cigs or chewing tobacco. Stay away from sugar as much as possible. I learned this later in my life and when I cheat with either of them, it really effects my abilities.
May God bless your son with the gift of patience to endure the mental struggles of being somewhat disabled but may he and your family be thankful as well.
In Christ Jesus.
Buck
Hang on there tater. My son was diagnosed last year at 13 (almost 14) through genetic testing. What helped us was focusing on what he can/wants to do versus what he cant. We made the switch in school last year to an ipad since holding a writing utensil became difficult. He has managed to adapt so well that strangers really cannot tell unless they watch him walk. CMT is bilateral so the left side only is a little puzzling. Either way, support, love and harangue your son…and make sure you take care of yourself.
Buck really hits it home, even without a disease, it is what it is. Hang in there and if you do not have a confirmed diagnosis , I would encourage you to get one.
Thanks a lot for the reply Buck and the others. We do have a confirmed diagnosis. We had genetic testing done and it confirmed for us CMT. My family and I push our son every day to keep going and he has a very strong personality t keep him going. He can no longer take p.e in school but the school is working with him in every way and are providing him with physical therapy and adaptive p.e to keep what strength up as long as he can. He has a lot of friends that understand he has a condition but by looking at him he only has a slight limp and you can tell the scoliosis has curved his back.. Thanks you again for the replies and we just keep praying and believing that the Good Lord will take care of him and our family
Yes mam my son had genetic testing done in December to confirm the CMT.
dancermom said:
Tater, is it certain that this is CMT, rather than Myositis or CIDP? Has your son had genetic testing?