I may have found something today. After getting nearly kicked out of the hospital, being told he is not having seizures but the doctor's increasing his seizure medicine and giving us a new rescue medicine, I have been researching nonstop. Today I came across something I think could possibly be an answer. I by no means am a doctor or have any medical training but I refuse to sit back and watch this happen to my son. I refuse to haphazardly add medicine to his regime without knowing what we are trying to cure/resolve.
I stumbled across a condition called dystonia. Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurologic features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not know. Dystonia is common with kids with FoxG1.
I don't know everything and this may not even be close to what is going on with him, but I will keep looking until we find out.
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