Tuesday, September 1, 2009

Honorary neurologist

Reagan has been great again today. Such a sweetie. Talking up a storm and just being all around darling. We had a meeting with her new ECI coordinator this morning. It took a while to finally get someone out here but I think it was worth the wait. She seems to be on top of things and hopefully we can get services rolling soon because Reagan has been almost a month now without vision therapy. After that we headed over for her Feldenkrais session. The practitioner works out of her home and lives about 30min away and little Miss Reagan fell asleep only seconds before we got there. All was not lost though, she went ahead and did the session with her sleeping. It allowed her to see another side of Reagan...one that's not always tense and extending. She ended up waking up about 30min into it but then the seizures started up (actually she had some while she was sleeping too). Have I mentioned how much I hate seizures? I went to the pharmacy today to pick up the rest of her Topomax (they never give us the full amount on our first trip) and they already had the Banzel her doctor called in. Not sure when we should start that. I just hate adding a new medication when we're in the process of decreasing another. It makes it impossible to figure out what's really going on (although do we ever really figure out what's going on?). Her doctor wasn't really clear on when we should start it. You know, when I was asking him about weaning her Clobazam he actually asked me how I wanted to do it! Seriously...isn't he the one with the MD? So here we are Reagan's honorary neurologists and I'm still not sure what to do. Frustrating. Please keep her in your prayers as I attempt to come up with a game plan for all of this.


Jamie said...

I can only tell you that Topamax was ALWAYS like that..Id always make 2 trips to CVS...so funny that you say that! get a place that has Auto-refill so it will be ordered..pretty exciting that she is getting off of that med!
Not much else to say today..gorgeous day in CT today :)
HEY did you get your DUOCAL??
Ask the Pediatrican about other ways to increase her calories...there are cheaper things than duocal if only my madie would eat her foods!! gah!

Heather said...

You are like a neurologist at this point Tera,seriously.NOW,I've read the update .. read my email if you have already.Sweet Reagan is in consistent mode which I always love hearing about days like this.I hate seizures to for you my friend.I really do.

Dawn said...

I wanted to ask you a question about the Banzel. My daughter has Lennox-Gastaut. We've tried every seizure drug out there. Taylor is now 20 years old.

Banzel was mentioned to me but the neurologist said he would let me decide afer I'd read the list of side effects as he has never prescribed it nor knows another neuro in Portland who has used it. Taylor is already taking Zonegran, Keppra, Lyrica, and Clonopin and still having hundreds of seizures a day.

Did Reagan's neuro give you any ideas about what her side effects might be? This drug has only been FDA approved since Nov. so I'm still trying to find out practical info about it.

I hope you don't mind me asking. While I've been on this road a long, long time, I still have questions that I know only another parent can answer.

Thank you,