Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 ; As for being diagnosed at young age, that has nothing to do with progression;you just happened to run on to a doctor who recognized it. No one can say how far it will progress or how fast! She MAY NOT get any worse, but she might gradually have more symptoms. I had quite a few symptoms at a young age from birth on, but no one recognized it until I was 40 yrs old. My kids are both diagnosed now, because I knew after my diagnosis that they have similar symptoms to me as a kid. Some have the surgery and some don't; some do well from it and others don't. Consider however, that any time you can avoid stress to the CMT body, whether from injury, surgery or illness. . . it is best, because in most cases we don't heal as quickly or as thouroughly as a " normal " body. As for P.T. She can benefit from the stretches and exercises. . . they can help release the tension in the heel chords. . . and as with some cerebral palsey some are casted to stretch the tendons. . . some may choose to use " night splints " rahter than surgery. My daughter, age 8 now, always has and still walks on her toes from heel chord tendons too short. We see Shriner's in March and will determine what might help her; I can tell you already we will avoid surgery. I did this as a child, very young until age 9 or ten and gradually started letting heels down but always felt tight; Always had to stretch out to do much of anything. Some nights I'd have severe " charlie horse cramps " and Dad would sit by my bed side and rub them out and gradually help me get stretched so I could sleep. We have the same routine with our daughter now. Some build a slight wooden wedge to place against a wall and stand on it with heels against wall and gradually stretch down to touch toes to keep the tendons stretched. She also has high arches as I do and did then. Keep very good arch support(sometimes molded inserts made by an orthopedic tech) and ankle support(high top shoes) in her shoes, and this helps eliminate turning ankles and hurting feet. When my arch started falling,due to atrophy, then I got lots of pain in feet and swelling and this happended as the muscles atrophy in feet and legs. Do NOT just take a doctors word for what needs to be done and make sure he truly understands the characteristics of CMT genetic defects. You must learn and research things and be her advocate for the medical profession dont' always understand or know about CMT. some are very knowledgeable and some aren't; even among MDA and Shriner's etc. My approach is " when in doubt, DON'T! " Stop, study and access alternatives. ~~~~~~Good Luck Libby ===== " I THANK GOD FOR MY HANDICAPS, FOR, THROUGH THEM, I HAVE FOUND MYSELF, MY WORK, AND MY GOD. " - Helen Keller " A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words. " ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Living w/CMT http://www.geocities.com/charcot_marie_tooth " Nobody can make you feel inferior without your permission. " -Eleanor Roosevelt- __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Very sound advice Libby! regards, BC ----- Original Message ----- From: CM aka Libby <charnicoma57@...> < > Sent: Thursday, January 17, 2002 9:55 AM Subject: [] Re: Diagnosed Young > ; > > As for being diagnosed at young age, that has nothing > to do with progression;you just happened to run on to > a doctor who recognized it. No one can say how far it > will progress or how fast! She MAY NOT get any worse, > but she might gradually have more symptoms. I had > quite a few symptoms at a young age from birth on, but > no one recognized it until I was 40 yrs old. My kids > are both diagnosed now, because I knew after my > diagnosis that they have similar symptoms to me as a > kid. > > Some have the surgery and some don't; some do well > from it and others don't. Consider however, that any > time you can avoid stress to the CMT body, whether > from injury, surgery or illness. . . it is best, > because in most cases we don't heal as quickly or as > thouroughly as a " normal " body. > > As for P.T. She can benefit from the stretches and > exercises. . . they can help release the tension in > the heel chords. . . and as with some cerebral palsey > some are casted to stretch the tendons. . . some may > choose to use " night splints " rahter than surgery. My > daughter, age 8 now, always has and still walks on > her toes from heel chord tendons too short. > > We see Shriner's in March and will determine what > might help her; I can tell you already we will avoid > surgery. I did this as a child, very young until age 9 > or ten and gradually started letting heels down but > always felt tight; Always had to stretch out to do > much of anything. Some nights I'd have severe " charlie > horse cramps " and Dad would sit by my bed side and rub > them out and gradually help me get stretched so I > could sleep. We have the same routine with our > daughter now. > > Some build a slight wooden wedge to place against a > wall and stand on it with heels against wall and > gradually stretch down to touch toes to keep the > tendons stretched. She also has high arches as I do > and did then. > > Keep very good arch support(sometimes molded inserts > made by an orthopedic tech) and ankle support(high top > shoes) in her shoes, and this helps eliminate turning > ankles and hurting feet. When my arch started > falling,due to atrophy, then I got lots of pain in > feet and swelling and this happended as the muscles > atrophy in feet and legs. > > Do NOT just take a doctors word for what needs to be > done and make sure he truly understands the > characteristics of CMT genetic defects. You must learn > and research things and be her advocate for the > medical profession dont' always understand or know > about CMT. some are very knowledgeable and some > aren't; even among MDA and Shriner's etc. > > My approach is " when in doubt, DON'T! " Stop, study and > access alternatives. > ~~~~~~Good Luck Libby > > ===== > " I THANK GOD FOR MY HANDICAPS, FOR, THROUGH THEM, I HAVE FOUND MYSELF, MY WORK, AND MY GOD. " - Helen Keller > > " A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words. " > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > Living w/CMT http://www.geocities.com/charcot_marie_tooth > " Nobody can make you feel inferior without your permission. " -Eleanor Roosevelt- > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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