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Friday, November 12, 2010

CMT, the beginning story

 Since this is a new blog I think I need to explain about my kids and some history how we got where we are today. This will take a couple posts so be patient.

 Jared was first seen by the ortho doctor at almost 17 months. He did not walk until he was 17 months and we were concerned about the way his feet were not developing like they should. There was no arch and his feet were splayed out. We were referred to the Cleveland Clinic pediatric neurology dept by the ortho doctor because he could not figure out what was wrong. So we went in December of 2002. The neurologist was amazing. He asked some questions about family history and did a consultation and knew that Jared had Charcot-Marie-Tooth (CMT)

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  What happens with CMT is the the myelin sheath that covers the nerve deteriorates causing the nerve signal to be weak which causes muscle weakness in the legs, feet, arms and hands. Normally kids do not show signs of this until they are much older so it was a blessing that the neurologist caught it. Not only that but the genetic blood test we had to confirm it was CMT had only been available for 4 years before Jared had it done.
 Jared was then fitted with shoe braces and we took him to his bi-annual apt with the neurologist and orthopedic dr. We joined the Muscular Dystrophy Association which have absolutely the most amazing and dedicated bunch of people I have the priveledge of knowing. CMT is under the umbrella of MDA so he gets to participate in Summer Camp and help with fundraisers and meet others who are like him. I got to meet other parents and come to grips with Jared's disability.
 It was hard at first to accept that something was wrong with Jared. No one wants to think of their child as less than perfect and the thought of other kids making fun of him or Jared having a harder time because of the CMT was very difficult to think about. I wanted Jared to have a smooth life with no hardships or at least wait until he was much older before he had to deal with something like this. But of course life is never smooth or easy. What changes is our perception and the way we deal with things. I realized that although Jared may not be able to keep up with the other kids or be as strong as they are he is brilliant and talented in his own way. Honestly I would not have him any other way. Do I wish for a cure? Yes. But having CMT and meeting others and having empathy for families has made him who is today. A very caring and amazing boy. Like he has brown eyes and a wicked sense of thinking outside the box. It's part of him and I have come to love that part as well because it is who he is and he cannot be seperated from it. I still want to turn into Mama bear and rage against the kids who make him cry at school sometimes but I don't. I try to give him tools he can learn to deal with others.
 For example, he told one kid to stop being a bully because he was not smart enough to make it on his own and he was going to end up homeless and no one would help him because he was mean to everyone. He does like to stand up to bullies and help the underdog.
 Going back now, Jared was 3 and they had said he was going to need surgery  to cut his achilles tendon because of the way the CMT affected his feet. We were told to enjoy the summer but come back in the fall for a consult before scheduling the surgery. Jared would be in walking casts for 2 weeks and then have 6-8 more surgeries before adulthood. It was imminent and nothing we could do would prevent it. It was a very painful surgery and I did not like the thought of my son in such an invasive move. I did what any mother would do and tried a different approach.
 Coincidentally (or was it?) I had received my Certification in Reflexolgy at the same time as the doctors were telling me he needed surgery. I did a reflexology treatment on my son every day that summer. When we went back the doctor was amazed and said he did not need surgery OR his braces anymore. The doctor did not want to hear about the reflexology but made me show him what I did to make sure I was not hurting Jared. Now he is 9 and we have avoided surgery this whole time. You can not begin to imagine how happy I was that I helped my son avoid surgery. Then I got mad thinking of all the other kids who had the surgery because the doctor did not want to believe in the benefits of holistic approach. I wanted to learn more. And I did. LOTS more. Especially dealing with Jared and his ADD characteristics. But that is for another post.

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