This is fairly spartan right now, but eventually I will have more of AJ's history, appointment schedule, results, etc posted, as well as some helpful links.
As far as yesterday's appointment with Dr. Bean, it went very well. Here are the highlights:
- He was very excited about AJ's most recent EEG. (Its always cool to hear your neurologist get excited about test results). There was no evidence of those absence seizures that he'd been having recently.
- Dr. Bean attributes this great result largely to the prednisone that we started him on after his most recent hospitalization. He can't stay on the steroid forever, so we are going to start a slow taper (5 mg a week, he's on 50 mg a day now) until he's off them completely.
- There has been a lot of talk about the ketogenic diet, and that most likely is still in our future; AJ has until we finish his steroid course to eat pizza and goldfish.
- We're going to start tapering his Keppra dose a bit faster than we were (3 ml/week instead of just 1ml), so we will be done with that medicine in 5 weeks. Research seems to indicate that his other meds are more effective for his condition and seizure type. It will be good to have one less thing to get him to take every day.
Again, thanks to everyone for your concern and well-wishes. Check the DDC for all of the fun stuff like snow forts and babies wearing cow jackets, and I'll keep you up to date on everything else here.
Thanks for the information. I am really interested in learning more and perhaps trying to raise money for the Dravet's Research Foundation. Is there a foundation that you feel would be the best for me to look in to? I saw a couple, but you might have a better idea. Thank you.
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