Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hello everyone! My name is Barb Howe and I live in Wayne, PA. I am a mother of a teenager with CMT Type 1A. We found out about a year ago after her pediatrician advised us to see a neurologist for 'electric' shocking pains that she was getting in her arms and legs. She had been getting the pains for years but other pediatricians told us it was just 'growing pains'. Currently she struggles with the same shooting pains, weakness in her hands, insomnia and occasionally she completely loses her grip. Her feet and legs are not too bad although she has had to deal with several foot fractures from tripping and falling (prior to her diagnosis) and she will need surgery for bunions in a few years. All in all I think that she is managing ok with the physical limitations although emotionally I feel that she is having difficulty accepting this diagnosis. As a mother (and I'm sure I'm not the only one) it is very difficult to see your child faced with such challenges at such a young age but we have a responsibility to push on....to encourage and just love them as much as possible. Right now we are looking for a new neurologist in the Philadelphia area. We are not having a very positive experience with the CHOP Neuromuscular Clinic. If anyone can recommend someone we would really appreciate it. I am really happy that I found this group! Barb Quote Link to comment Share on other sites More sharing options...
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