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!
2 days ago