Unfortunately the past couple weeks, the nocturnal tc's have been creepin' up in numbers and intensity.
Jake has a neurologist appointment on Wednesday, so hopefully we can figure things out then.
We were asked to have Jake's blood levels checked last week. So that is what he did first thing, bright and early on his birthday. Luckily, the kid lOVES getting his blood drawn, so that was an excellent birthday present to him.
I am anxiously awaiting the news on those results, as I always take for granted everything will be just fine. The blood levels check his current medicine levels and also make sure there isn't any damage being done to his liver. The liver is what metabolizes all these drugs he is on, so it, the liver, can take a beating.
I think the plan may be to increase some meds, if indeed his med levels come back ok.
I am not quite sure how I feel about increasing meds that he has worked so hard to get rid of.
But, I certainly don't want to see all these seizures back. The past couple days we have had 3-5 a moring and 3 during naps. Usually, I would kind of shrug these off , but they are also coming back with increasing intensity.
However, I also don't want to see his cognition and "zip" be lost again as well as a result of more meds being on board.
Hopefully, Dr. H will have some fabulous, miraculous plan that will "CURE" everything!:-) It doesn't hurt to be optimistic!:-)
My worst fear is that seizures beget seizures. If these seizures are creepin' back with a vengence, are we going to see the dreadful drops again?!
Hopefully, these can all be chalked up to a simple growing spurt and a slight adjustment of meds will put us back on track!
On a side note:
Please pray for Aidan and his family. He is a fellow Doose patient going through a very difficult time right now.
Read about Aidan here
"If God gives it to you, he will lead you through it."
My day with the Pioneer Woman
11 hours ago