Since I was the only one to actually witness the first cluster, my husband still thought in the back of his head maybe I was just exaggerating. We finally agreed to the testing and went in for a few days while they ran bloodwork (including a genetic microarray), MRI, EEG, etc...
Everything came back normal except she showed a slight delay in myelination in her MRI but her EEG came back very abnormal with traces of hypsarrhythmia. The neurologists at the hospital told us hysparrhythmia=infantile spasms and after reading up on it, we were shattered. They wanted to start her on ACTH right then, but instead they started her on Zonegran until we could meet with the epileptologist the following week. We were sent home completely devastated!
Tuesday, August 21, 2007
When I went to pickup Reagan from daycare she was crying which wasn't out of the ordinary, but I noticed her doing this weird "jumping". I immediately felt sick to my stomach and I knew something was wrong. It was almost as if she was startled, her arms would extend forward and her head and neck would go back. She would do one every 5-20 seconds. I asked the people watching her how long she had been doing it and I think it had been going on for over an hour (it's hard to tell because I think she started out doing it every 15 minutes or so and then they progressively got closer and closer together). I took her home and she continued doing it and then finally fell fast asleep. I spoke with her pediatrician at the time who mentioned that it might be a seizure, but didn't seem to be in any hurry to see her. We watched her closely overnight and then took her to a new pediatrician the next day. The new pediatrician was very concerned with Reagan's developmental delay, her head circumference was measuring small (microcephaly), and she suspected seizures...she wanted admit Reagan to the hospital to run multiple tests on her.