Mommy is fighting for me

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My mommy and grandma knew something was wrong with me when they noticed my fingers and toes would swell. I was 6 months old at the time, I would scream in searing pain when I would wear coats, shoes or socks. I wasn't diagnosed with this disease till I was 16 months old. The doctor who diagnosed me was rheumatologist Dr. Mark hoetzl from the University of Michigan. I'm currently on 100mg of gabapentin twice a day but it doesn't help.  Whenever I have a flare its been so bad I couldn't walk, I bite my knuckles till they bleed and I cry. Anymore I mostly have night time flare-ups, since the season has changed. Summer was the worst, not sure how winter will affect me. My mommy has set up a Facebook page for me so she can help me spread awareness. We're currently trying to fight CSHS (Children's special health services) to help me with being able to go to UofM. It's been a rough road for my mommy and grandma to drive me their every other week for a new appointment. I also see an endocrinologist and a geneticist.  My Facebook story can be seen as "A Life with Erythromelalgia".