When Ian had the 48-hour EEG, they found that he was having one-second seizures every two hours. They were so small that there were unnoticeable to observers. He doesn’t even blink when they happen. Those little seizures have to be treated with medication, because without treatment, they start adding up to bigger ones, like happened in November.
The concern was that his seizures were happening on both sides of the brain. Most people with epilepsy tend to get them on one side or the other. So, that’s why the neurologist ordered the brain MRI and was worried.
Epilepsy is a very common problem for people with autism. Something like 30-50 percent of people with autism, also end up with epilepsy down the road. It’s a genetic thing. Just the same, it was necessary to rule out a physical issue, since his EEG readings were so unusual.
It took four days to get the results, in which time I imagined the worst. I didn’t want to be blindsided like I was last month with the epilepsy diagnosis. I wanted to imagine the worst, make peace with it, before walking into the doctor’s office.
I feel like I’ve had a seizure. My brain is wiped clean. I haven’t even been answering email this week. I’ll be back on Monday. I’m working on article today and that’s about all I can handle.
The pain and stress that parents of truly sick kids have to manage is unthinkable. My thoughts are with them this morning.
Hug (or call) a loved one today.
13 thoughts on “Brains”
Wow! Our daughter has had absence seizures like ian since she was a toddler–she’s 34 now. Been on medication since 6. Easy enough to manage if she has the right medication. Good luck!
“Something like 30-50 percent of people with autism, also end up with epilepsy down the road.”
Oh my, that sounds overwhelming . . . It’s very hard to deal dire health issues . . . I guess especially when it’s one of your children.
I really identified with you preparing yourself to believe the absolute worse, so you wouldn’t be blind-sided.
I’m glad it’s not the worst, and it’s manageable. Wishing all of you ease.
Wow, 30-50% is a lot.
My kid with autism (late 20s) doesn’t have seizures, but his neurotypical brother does (or did, he hasn’t had one for years and is off his meds. How any mother sleeps at night is beyond me.)
One of the grandpas in our family had to quit his finicky lab-based career because of seizures and also had a nasty accident at home caused by a seizure. He’s lived basically normally since then, though, with regard to driving and other activities. (This is a very detail-oriented Boomer grandpa.)
“How any mother sleeps at night is beyond me.” Yup, so true. I also identify with anticipating the worst but since having children I have had to resort to denial in the form of sticking my fingers in my ears and humming unless probabilities become certainties.
I am so glad to hear that you have a manageable path on your hands.
Agree with the sticking fingers in your ears. It’s the only way I stay sane. My daughter is into sky diving. (But not really, she’s only joking. Right? RIGHT?! If not, don’t tell me.)
Glad your worst fears weren’t realized.
“My daughter is into sky diving.”
Oh, wow. That beats my teen son’s (and husband’s) favorite hobby of climbing a 50+ foot indoor rock wall on top rope.
I’m so glad to hear this news. The waiting must have been excruciating.
I am happy it was not the worst.
In our experience, neurologists are much better than GPs in diagnosing and treating nerve (brain) conditions. And there’s so much we still don’t know about the brain, so even with bad news, there is a sliver of hope that advancements in science will lead to new treatments.
In our experience with nerve stuff, lifestyle changes can make a huge difference, like diet (there are epilepsy-specific diets), exercise, sleep, meditation, etc. Keeping a journal of symptoms can help work out things to avoid.
I’m so glad the Big Bad was not the case.
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