It's Chiari (Kee-r-ee) Malformation and Syringomyelia awareness month and time for a post about Auggie's particular symptoms of this disease. Even though he was decompressed a year ago he will always have chiari malformation. The space created in his brain to relieve pressure and allow CSF to flow better is small. He will never have the same pressure free flow in his brain as the typical person. He is going to live with this for the rest of his life and some days will be bad, very bad.
Yesterday he complained of a really bad headache at 4 PM, he was in agony. He does not take medicine by mouth and he would have nothing to do with a suppository. At 5 PM he was vomiting from the pain and nausea that the migraine headache was causing. He vomited copious amounts, twice. He was too nauseous to eat dinner and only managed to drink some of his "milk" before bed.
On most days he complains of foot and leg pain. He says that his feet feel like they have splinters in them. This is pain is probably only going to get worse as he gets older and there is very little at this point that can be done to help him feel better. Much more research is needed in this area. Please help spread awareness about this debilitating disease!
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