We're home!
We made it out the door around one in the afternoon today, and after dropping by the bookstore to get Connor his Reward Book we headed for the house, where we promptly climbed into bed and took a three hour nap. While the sleeper couches at Children's are pretty cushy for a hospital setup, I can't exactly say my sleep over the last two days has been restful, so I really needed that nap.
Connor needed the nap because he had another seizure on the way home. So that was great.
He had two today and we can expect him to have more over the next couple of days before his new Lamictal dose really kicks in, but thus far they've just been partial seizures that I feel comfortable handling at home and not the apneic seizures. We're tapering him down off the Ativan slowly; he was on it long enough that it's likely his body got used to having it and stopping it cold would trigger even more seizures. Hopefully the new Lamictal dose will tide us over until mid-April, which is when we'll be seeing our new specialist. Yep, we're adding one to the list; Connor will be seeing an epileptologist in Children's special Epilepsy unit. Up until this point we've been seeing a more general neurologist, but they feel that at this point Connor's seizures can be classified as intractable and so we qualify for the more specialized unit.
An epileptologist is a neurologist who specializes in epileptic seizures. We'll be examining other ways of controlling the little guy's seizures, potentially including the ketogenic diet and the vagus nerve stimulator implant. These are some really fantastic doctors who specialize in unusual cases like Connor's, so I'm really hoping we'll be able to find some good answers through the program.
In the meantime we'll be easing Connor back into his daily routine. The next couple of days it's extremely likely we'll be seeing more seizures, but we're hoping they'll be tapering off after that. I'm just glad we've got the little guy back home again and we have a game plan to follow. Hopefully we'll be able to stay home for a while!
~Jess
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4 years ago
5 comments:
So glad you guys are home!
Seriously, you haven't been referred to an epileptologist until now??? My, my...I'm admittedly very disappointed to hear this.
I hope the Lamictal increase brings some relief for Connor soon. And that you get a great epi!!!
If you need to pick a brain over the keto diet and VNS, feel free to pick mine. We're veterans of both (and Seattle Childrens as well) and the whole intractable scene. OK, so maybe I'm not a great contact, as we're still immersed in intractability, but I'm happy to share our experiences if it would help you.
VERY happy to know that you're home. Not very happy to hear that Connor is still having a rough go of it.
I really hope this new specialist can give you some answers. I also hope you're able to get some Gita-time and blow some steam off!! Thinking of you guys!
So glad you are home and that you have a game plan in place. Hope the new specialist will be able to help you guys kick these seizures to the curb! Sorry to hear the little guy is still having seizures, but I hope that the med increase will kick in and give him some relief.
Welcome home! Wishing you books, naps, chocolate, cuddling with loved ones, and great big long breaks between seizures.
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