I'm back from New York and will post about it later (maybe) -- lots of walking the streets, a benefit that did pretty well for the cause, the creepy Joker photo of Bernie Madoff leering down from every newsstand in New York City, the incessant talk of said Madoff and my growing impatience with this story because I think it distracts from the tens of thousands more who've lost jobs and retirements, etc. and I'm also tired of hearing how nervous the really, really rich people are.
Anyway, I'm done posting about New York.
I talked to The Neurologist in the airport as I waited for my bags to come around the carousel at JFK. Even though I'd flown over three thousand miles to get away, some conversations just have to happen. I asked her whether the increase in "big" seizures and decrease in "little" seizures was acceptable. I told her that I hated ambiguity in antiepileptics -- that if a drug works, it works, right? Seizures stop and the stopping is dramatic.
That hasn't happened.
The Neurologist and I discussed the possiblity that the drug was helping with the little seizures but that the brain was thinking up new ways to have big seizures. Hmmm. She felt that we should give it more time. I acknowledged that the positive changes -- the lilt in Sophie's step, the alertness in her eyes, the reduction in the constant daily clusters of spasms -- made me hopeful.
We're giving it a few more weeks and then we'll reassess. In the meantime, I've made another appointment to see The Homeopath in Arizona at the end of the month. I'll tell you about that later.
Now I have a joke. I was rereading a medical paper titled "Rufinamide for generalized seizures associated with Lennox-Gastaut syndrome" (fun reading, right?) and understood the study was done on 139 persons. The study was done in Cleveland and the average age of those studied was around 12. Since we put Sophie on rufinamide, I've visited numerous epilepsy/seizure disorder websites and posted enquiries about it, asking whether anyone had a child on it or whether anyone had tried it.
I haven't received a single reply.
I am now wondering whether Sophie is Patient Number 140.
Just wondering. And that's a picture of a guinea pig up there.
Hang in there. Something is happening and that is something. I know you want to protect yourself, but I can tell that hope is creeping in. It must be based on...something.
ReplyDeleteGlad you're back before the storm.
Oh, medication hell: the agony & the ecstasy. I completely understand. My fingers are crossed that maybe the bigger seizures will slow down? That something will emerge, slowly and beautifully. That is my wish.
ReplyDeleteI'm hoping that a lot of little things (less small seizures - more small improvements) will add up to something in the way of a big change for Sophie. Thank you for the update - you know we care .......
ReplyDeleteJust found your blog. I love it. You are a great writer. I am so sad for your sweet little daughter. I don't know if you read the most recent Parade magazine cover story (we get it as an insert to our local paper) but it had Axelrod's (Obama's chief aid) wife and daughter on the cover and an article about the daughter's epilepsy. I was crying as I read it. Talk about an unfair and tragic disease. Anyways, they talked about a new drug that she is on that has done wonders for her. http://www.parade.com/health/2009/02/susan-axelrod-CURE-epilepsy.html I wish you and your family the best.
ReplyDeleteThanks for all the good wishes and thoughts!
ReplyDeleteAshley Ann, welcome to my blog and thanks for your comments. I did read the Parade article and actually know the Axelrods through the organisation that I helped to found (PACE) -- ironically, Sophie has been on the drug that their daughter is on for many, many years and it hasn't helped her very much at all! Epilepsy is very mysterious, as you can see.
you are doing fantastic, important research. i'm impressed with you, and proud of you as a fellow mother. your daughter has a true champion in you.
ReplyDeleteI have a great guinea pig story for you.
ReplyDeletedidn't even know you were gone...but glad you are back.
sorry the drug is not the miracle we all instantly wanted. keep us posted...still hoping and praying