Monday, May 10, 2010

Is it time for a 2nd opinion?

Finally got a call from the nurse at the neuro's office. He doesn't have a plan. He doesn't want to do anything different right now, and it's really upsetting. Oliver has had 2 seizures in the past 4 days. I would consider that a bad sign, along with the fact that his EEG shows no improvement since March 30th. The neuro wanted to try ACTH again but we can't, because Oliver's severely neutropenic and because he currently has an ear infection. So until his levels get better (if they get better) and he doesn't have any other issues going on, we can't do the ACTH. He doesn't want to increase his Vigabatrin dose either. He had an ear infection 2 weeks ago and didn't have seizures like this during it. So I don't really think the seizures are being caused by the ear infection. Maybe they are caused by teething? who knows? I just want them to stop. I wish someone could offer us another option, because I am running out of patience. I am trying to take it day by day but it is just too hard. I feel like there could be something out there that can help Oliver but nobody is trying to find it. Isn't that the job of the medical professionals? To offer a plan? an option? How can keeping him on the current dose of medicine be the best option considering his EEG hasn't cleared and his seizures are coming back?

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