Last week we talked to Evan's neurologist about all kind of things. We only want to know two things:
Why is Evan having seizures?
How can we make them stop?
Unfortunately these are the two hardest questions to answer and there are no easy answers to either question.
Evan's on a lot of medication and is currently taking three meds that are spread out over five doses each day and just to keep us on our toes, no two doses are the same. He takes 19 1/2 pills every day. Some of them he just chews up and others we crush and mix with something to minimize the bitter taste. What's interesting is that when we talked to his doctor she told us that she got the results from his recent blood work and he is hypermetabolic and none of the medications are at a therapeutic dose for him (although with the amount he's taking, they should be). For some reason his body is processing all this medication so quickly that it isn't staying in his bloodstream long enough to be considered therapeutic. This is common with kids and can make treatment challenging to say the least.
Evan had another seizure this morning and we began an aggressive increase of medication to try to stop the seizures which are still happening every 7-14 days. On the up side there is hope because maybe he just needs a significantly higher dose to get things under control, but we've been down this path before with seizures that medication couldn't touch, so we are nervous about their effectiveness.
As for Evan, he is so strong...he had a seizure at 7am that lasted 7-8 min, we gave him an emergency medication to stop it (the amount would probably knock out an adult for several hours), he cat napped for 45 min. and was ready to go. He was a little off-balance and his speech was slurred for a half hour, but that didn't slow him down. At 1pm I took him to a birthday party at a Kiddie Gym and he ran around, climbed all over the equipment and finished it off with a ride on the zipline and a slice of cake. Life is good.
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2 comments:
*@#%^&***!
I hoped he was going to stretch things out further. Do you suppose being up late had anything to do with it?
I'm glad he was up for the party that afternoon. It really is amazing to see how quickly he recovers, but I wish we didn't have to admire that!
Hugs to all,
Mary
Mary,
We talked about that too and although not getting enough sleep is a known trigger for seizures, we haven't seen that to necessarily be the case with Evan. But, just in case, we do try to keep him on a consistent sleep schedule.
He was up late the night before this one but there have been other times when he has been up late and not had one too. I tend to think that in his seizure cycle it was just time. Being up late probably didn't help but I'm not altogether convinced it hurt either.
Lisa
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