Sadly, Aaron had to stay behind to keep bringing home the bacon. Sometimes a change of scenery really helps. I booked this trip about a month ago when I was going through what now seems likely to have been panic attack! It is really strange to think about all the carefree times Aaron and I spent here before all hell broke loose in our lives. I talked to the magic carpet guy today and he seemed soooo young! (some of you may know that Aaron and I met while working at ski school, probably no older than that young guy; I suppose some 13 years ago....).
Ben has been having good days and bad days. Days of incessant crying and days of relative ease. We love the days when he doesn't cry and the world always seems a better place on those days. Chloe has been learning how to ski and is amazing at it. She's a natural :) Of course WE think so!
We are sitting tight with Ben right now. He is on one drug, Lamictal, and seems to be OK. Some days he has 1 seizure, some days he has 7. We are considering a vagus nerve stimulator - an implanted device that, when it works, can reduce seizure frequency by about 50%. We are also considering another drug, Felbatol. But that drug can come with insomnia and loss of appetite. I feel like I don't have the strength right now to endure those side effects. Ben has become very thin and is just now starting to eat willingly again.
Just another quick update on our progress and life. Hope all you readers are doing well :)
1 comment:
Hi Catherine! I saw your email to the PMG group and have been thinking about you. Ironically my husband had been thinking about trying no medications too. And our neurologist is now suggesting a VNS for Jackson. Keep me posted on what you guys decide and I will keep you posted too. I need to do some more research on it. Oh and I saw one of the mom's recommended Orin Devinsky's book and I have that one. I don't think it is as good as "Seizures and Epilepsy in Childhood, A Guide" by Freeman, Vining and Pillas. That one has much more info. You can get both on Amazon for a little cheaper than the bookstores. Just my two cents. Hang in there and stay in touch!
Stacey Klim
Jackson's mom
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