Malachi started having seizures when he was three. Since then he’s been on anti-seizure medicine(s).
He started having allergies when we lived in Costa Rica. He took some meds there, but we got lazy about it. He’s restarted allergy meds here.
Here’s a picture of what he’s taking (in the evenings) right now:
(from the left) 1/2 a Zyrtec pill, one chewable singulair, 2 capsules of 250mg Valproic Acid (which he takes simultaneously, he’s amazing), 4 mL of Levitiracetam (more commonly known as Keppra).
His mornings are just one capsule of Valproic Acid and 3 mL of Levitiracetam. He’s at 3 in the morning because we’re starting the weaning process. We were at 4 mL in the morning as well.
This is a little scary for me. There’s risk of a seizure during the time of adjustment. I feel like a seizure would be less scary for me now than it used to be. I understand more about his brain, and I know that any seizure that he goes through hasn’t harmed him, even the 20 minute one. I feel that we’d be able to handle any short seizure activity here.
The part that is scary is long seizure activity. The ambulances here are less than reliable. The CLO actually told us to skip the ambulance and take ourselves to the ER if we need to go. For most of the day the traffic is a bit crazy. Getting to an ER to stop a seizure could take us 30-45 minutes, or more if it’s rush hour. If it’s 12:00 a.m. it could go fast, but I’ve actually been in traffic jams at that time.
We have our dosage here of valium to try to stop a seizure. It worked in Costa Rica but he was still having partials. Even the extra valium from the ambulance there didn’t stop them.
So what I’m hoping for is no seizure activity. Especially nothing that requires an ER visit. His school is fairly close to one of the best ER’s though, and they have their own ambulance. So maybe it would be best for him if it happened at school.
It’s a slow weaning process. We are taking out one mL of medicine every two weeks. Today we did 3mL in the morning, 4 in the evening. In two weeks we’ll do 3mL/3mL. Two weeks after that we’ll do 2mL/3mL, etc.
So this is the beginning of what could be nothing but removal of one med (yay!). Or it could be the beginning of another batch of seizures (boo). The neurologist said that his level of Valproic Acid is high though. And our neurologist in CR said that it’s one of the oldest and most successful anti-seizure meds around. With all of that knowledge I’m only a little scared.