Center for Children with White Matter Disorders - forum site
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Author Topic: just diagnosed  (Read 6235 times)
603love
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Mommy of 3 beautiful boys!


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« on: August 18, 2011, 07:20:11 PM »

Hello everyone,
 
  I am just new to this site and still trying to learn all about VWM. My son was just diagnosed a couple months ago at the age of 4months. He is 8 months now and finally off his feeding tube and eating all by bottle. He seems to be doing so well compared to a couple months ago. He is gaining weight and hitting milestones. He is a twin, but his twin is healthy and he has VMW. We live in Canada and it seems like no one really understands this disease. No one can really give me clear answers, everything just seems so uncertain. They told us in the hospital that he maybe had a couple weeks, then it was maybe a couple months, and now they have no idea. He  is doing so well which is so amazing.

Im trying to find someone to chat with who may have had a similar experience or has a child with VWM. Im trying to find different things that may help him that may have worked for other people. Im also thinking of getting a second opinion, has anyone one else done this? Any advice would be greatly appreciated!
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Jill
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