Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi, I am Barb. It is not often, I get to write or say these words. I am Barb. Usually, I am Toby's mom, the QM's wife, someone's daughter or sister. Toby is our son. He is nearly 6yo. We have had success with Suit Therapy and hope to continue when the money is available. Today is the first time I had heard of this method. I am interested in the manual. My husband has taken a back seat to much of Toby's therapies. I am hoping to get him more involved...He is very bookish...just need the information and he will fly. We just moved to Chicago from rural MO. So many opportunities and changes are available. It is a matter of catching our breath and making a plan. In the past we have had to play catch up...late dx. Now we need to set our goals and find those who can help us reach these goals. It has been our rule so far to work with Dr's we like. And we have traveled some distances to do so. This is all for now. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Barb, A very warm welcome to you and your daughter. As for the pains, has anyone mentioned a medication? I hope we can be of help to you and your daughter here at . Many Moms and Dad's to offer their experience, plus those of us who grew up with CMT from childhood. As for a CMT Dr. try this one - he knows his stuff http://www.med.upenn.edu/apps/faculty/index.php/g324/p11842 Gretchen So. Calif. Diagnosis at age 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Gretchen, No specific medications were mentioned but I'm not sure that she is at that point yet. I told her that if her shocks get worse we can explore medications. Vitamin B and fish oil has seemed to reduce them slightly...they don't feel as sharp. Thank you for the name of the doctor. I will definately look into that. Thanks again! Barb Welcome Barb Hi Barb, A very warm welcome to you and your daughter. As for the pains, has anyone mentioned a medication? I hope we can be of help to you and your daughter here at . Many Moms and Dad's to offer their experience, plus those of us who grew up with CMT from childhood. As for a CMT Dr. try this one - he knows his stuff http://www.med.upenn.edu/apps/faculty/index.php/g324/p11842 Gretchen So. Calif. Diagnosis at age 10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Barb and welcome! I never presume to second-guess our beloved expert Gretchen, but I have a slight correction to make on her doctor recommendation. I have met Dr. Scherer on a number of occasions. I wish I knew him earlier in my journey with CMT. I have to point out that Dr. Scherer only treats adults. There is another CMT Center of Excellence next door at CHoP led by Dr. Finkel. This is the link to his info. http://www.med.upenn.edu/apps/faculty/index.php/g324/p1516 I do not know Dr. Finkel as well, but I have met him. Again, had we met him sooner, we might have sought his help to for our son. Instead, we travel to Detroit each year to see Dr. Mike Shy at the Wayne State University CMT Clinic. His contact info is: http://wsupg.med.wayne.edu/view.php?id=P0JF0SG2RL We live in NJ and make that trip to Detroit each summer. It is by far worth the trip, but the Philadelphia docs are top notch as well! We are always here for you! Mark, 48, CMT1A, NJ > > Hi Barb, > > A very warm welcome to you and your daughter. As for the pains, has anyone mentioned a medication? I hope we can be of help to you and your daughter here at . Many Moms and Dad's to offer their experience, plus those of us who grew up with CMT from childhood. > > As for a CMT Dr. try this one - he knows his stuff > http://www.med.upenn.edu/apps/faculty/index.php/g324/p11842 > > Gretchen > So. Calif. > Diagnosis at age 10 > Quote Link to comment Share on other sites More sharing options...
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