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This week in “Things We Have To Figure Out”
Why is Kyle having so many seizures during the school day, but very few to none at home?
Is there something that’s triggering it at school?
Fluorescent lights maybe?
Or is it just that when his majesty has demands put on him he gets stressed which could trigger seizures?
Or has he figured out a way to cause himself to have seizures to get out of doing his school work? (if anybody could do that it would be the king)
All we know is that he had about 4-5 days over the past 2 weeks at school where he had multiple small seizures in a short period of time and then napped for 2+ hours each day.
Today they said he had about 5 seizures in a 10 minute stretch and after 2 hours of him sleeping they called Wifey to pick him up.
And after she picked him up, all afternoon at home…seizure free and generally happy to be home according to Wifey.
And all last weekend… No seizures.
When we were off on Monday at the beach… No seizures.
We have to figure this out. But when Monday rolls around I think we have to send him to school and try to break the pattern or figure out the trigger.
Boy, epilepsy sucks. And epilepsy with a non verbal kid who can’t clue you in to what he’s feeling or any potential triggers sucks even worse…
Seizure temporarily stops normal electrical activity of the brain. Uncontrolled movements of the body, disorientation, fear, anxiety and unconsciousness may accompany these seizures. For most famous people with epilepsy, it is controlled by medication.
All I can think of is diet and stimulation…I'm guessing though that you guys are totally aware of those triggers though since you have been on this journey for a long time. Hoping that you can find the cause quickly and also wishing your wife a Happy Mother's Day
Could the school be giving him Gatorade, powerade etc.?
Our son was having terrible seizures and then we realized he was having them after he drank any type of drink with added electrolytes. Since we stopped allowing him to drink them he has been seizure free. Just a thought for you to consider.
What types of seizures is he having? Are these generalized tonic clonic seizures? Isn't his Neuro bothered by the fact he is having breakthrough seizures (I assume he is on some sort of anti epileptic med?) Maybe he needs an increase in dosage due to a growth spurt or a change of med.
Also, I would be sending in a high level BCBA for an observation. No doubt he is stressed probably by poor programming and/or poorly trained therapists stressing him out. Happens a lot!
My daughter has epileptic and non-epileptic seizures. Her excellent doctor from the Mayo Clinic has helped us with this problem. She like your son was having seizures both at school and her dad's house at visitation. Sometimes a residual shortly after coming back from a visit with him. Let me clarify… 13 seizures over a year 9 of them while with her dad which is only weekends. this is NOT coincidence. The difference her doctor told us is this: Seizures with symmetrical movement that are post ictal for 5 minutes or more are regular seizures. Non epileptic are more or a thrashing or jerking in which there is a short recovery from where the child can almost set themselves into when under stress. The school was required to change quite a few things to accommodate this new development. I confronted her father with what the doctor said and told him if he didn't make the changes we would be in court. Well, so far so good. No seizures anywhere for some time now. Maybe look into this, examine the seizures by having the school record them to show to his neurologist. Good Luck, I know it's frustrating but you guys are not alone!
It freaking blows to not know what's doing it. Sorry you're going through this.
This is why autistic children should going to therapeutic DIR schools. Instead of those nasty ABA schools!
Yeah I was wondering if there are the undetected Petit Mal at home and then obvious Grand Mal at school. Our daughter is profoundly vulnerable to overstimulation.
I would like to think, he so conforable and feels safe with his parents. Maybe it noise with others, or teachers voice is very scary to him.
is it possible that "the King" may be having short un-noticed seizures at home during times that he's alone watching T.V or playing? Maybe its more noticeable at school because someone is with him continuously through out the day?
My neighbors son has seizures brought on by sounds… School is a noisy place… I hope you find the trigger and get some relief soon!
I really hope you figure it out. It could very well be his body's way of communicating stress! But I have no medical background so I can't say for sure. I do know that my son, also autistic, gets SUPER stressed when we go out anywhere for too long. With epilepsy, I can only imagine the stress… being away from home all day.