Aaron's seizures have begun to increase. He is still having many different types and is now having convulsions. I talked to the Neuro nurse and they had Aaron come right in to see Dr B. We talked and she listened. She assured me that she was there for the duration but that she needed to be very aggressive in his treatment. This syndrome causes brain damage, most often severe and most children end up in wheelchairs. Aaron already has severe developmental delays, is missing parts of his brain and is already in a wheelchair. It is hard to think about what this will do to Aaron. She started him on Onfi. This is the medication that caused him to be in the PICU this past October. She is starting him out very slow and they are going to keep a close eye on him but I am a nervous wreck. When Aaron gets sick he gets very sick very fast. His heart rate and body temp drop very low. All I can do is pray and trust that he will be ok.
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