Jeremiah’s seizures began when he was a newborn. We adopted him from foster care, so he wasn’t with us then, however he had the “shaking seizures” after he was born and then again a month or two later. He came to us at three months and we didn’t see anything unusual, indicating a seizure until he was about three-years-old.
Somewhere along my trek through Autism, I heard about Autism and seizures being synonymous at times. I heard this in correlation to children with Autism losing their skills or regressing. Jeremiah has always gained skills and regressed, it’s been the story of his life. Does he say, “Hi”? He used to. He also used to…but now he…Gaining and losing, gaining and losing.
Was it seizures?
When he was three-years-old I heard this terrified cry come from his room. I quickly went and opened his door, and he looked so frightened. I’d never seen that look before. He’s nonverbal, so he couldn’t tell me if it was a nightmare, but he was acting strange, and it didn’t seem to me to be a scary dream. After that he really regressed. I was sure he’d had a seizure.
We then had an EEG done at our local hospital, the goal was to asses whether there was any seizure activity. It wasn’t a good experience. First, Jeremiah doesn’t do well when outside of his routine, so going to the hospital was one of those “Oh no, what in the heck are we doing?” adventures. Rough. Second, they had to place all these sticky do-dads on his head (sorry don’t know the medical terminology). Yeah right. He doesn’t like anything on his body that isn’t supposed to be there; dry skin peeling off his lips, a band-aid, etc. So he yanked at those wires which hooked to the sticky do-dads with a ferocity you wouldn’t believe. Third, he didn’t understand why we were there or what they were doing to him. So, after forty-five minutes of crying, screaming, and panicked writhing (my sweet husband got quite beat up) Jeremiah passed out from exhaustion.
The techs only ran the test for another ten minutes and said that’s all they could get. Really? All they could get? Since they have twenty-four-hour and seventy-two-hour EEGs I would imagine they could’ve run the test a little longer, but they were exhausted themselves and wanted to be done. The end.
Those results came back inconclusive, meaning while he was asleep for ten whole entire minutes his brain didn’t show any seizure activity. Shocker.
Fast forward to August 24. This time we witnessed a seizure. Problem being it didn’t click that it was a seizure for quite a while. Jeremiah was playing in the back yard and his sister was, well, crying over something. Justin and I were cooking and Justin left to bring Payton inside, he noticed that Jeremiah was standing in the backyard not doing anything in particular. This happens sometimes.
Payton continued crying, we were trying to get dinner on, and Justin called for Jeremiah to come inside. Usually if we tell him to come in and eat, he will, but this time he didn’t move. Justin stuck his head out the door again and called to him, and Jeremiah didn’t move. So, Justin went out and picked Jeremiah up and brought him in. He stood him on the chair where he always stands, he was facing the back of the chair. We continued to work on dinner and Payton continued to cry.
Justin notice that Jeremiah hadn’t moved. I went over to him and touched his arms, there was a slight tremor to them, like he was holding something with a really tight grip. I said there was something wrong, he didn’t look at me (for a child who has Autism, he actually makes very good eye contact) and
I couldn’t get him to stop staring into space.
Justin picked him up, his body was rigid, and we took him to the couch and undressed him, thinking he’d been bit by something outside and was having an adverse reaction. We weren’t getting any response or looks from him, he was breathing but just wasn’t there. We turned on his favorite movie to see if he’d look at it, and he did eventually turn his head. Jeremiah then curled up in Justin lap in a fetal position and shoved his fists into his eyes.The rest of the evening he was exhausted.
It was somewhere after checking his body for any indication of a reaction that I realized he might be having a seizure. I knew he’d had them before and that correlation with Autism is there. There are also seizures known as petit mals or absence seizures where someone will stare into space and their body becomes rigid, you can’t get them out of this state until the seizure stops. Now I knew what had happened. Problem was, this lasted seven to ten minutes, much longer than a petit mal or absence seizure.
Jeremiah’s doctor referred us to a Neurologist at Children’s Hospital. I was worried because we’ve had more hospital visits go awry than just the one I talked about above. HIs doctor reassured me, “It’s Children’s, they deal with this all the time.” The “this” meaning Autism. I think.
The chats with the scheduling nurses before we arrived left me strongly disagreeing with Jeremiah’s doctor. They didn’t take Autism into consideration when scheduling his EEG he was to have at Children’s – which they failed to notify me of. Whoops. When I found out, I said an hour-long EEG wouldn’t tell them anything, and we’d already been there, done that. So, got that worked out and figured we’d have to make another five-hour trip to the hospital soon after this Neurology appointment.
We arrived a little early on Friday morning. I watched as children filed in and out of Children’s with their parents. I was completely struck by thoughts that these children were sick, many of them worse than Jeremiah. Our seizures and our Autism are nothing compared to what these families are facing. Some are worried every moment that their child won’t make it, that this is all they have. For many the seizures are worse, occurring multiple times a day and the child is convulsing, while the parents are filled with fear far more often than I.
The appointment went really well. We heard exactly what we wanted. Jeremiah doesn’t need medication unless the seizures increase in frequency or longevity. We have an emergency “pin” with medication that we’re to administer if the seizure lasts longer than five-minutes. They diagnosed them as Complex Partial Seizures. The emergency “pin” relieves my anxiety a great deal. To know that I can do something if Jeremiah has a seizure, helps tremendously. It’s so much better than standing around wondering how to make it stop.
Some other great news is that for now, no EEGs need to be conducted. Yay! You can’t imagine the relief. Well, if you have an Autistic child you might be able to imagine. I don’t want to go through that again. Ever. Since they know he’s having seizures they feel it would be pointless at this time to run the test.
The coolest part was that the Nurse Practitioner understood Autism and referred to us anytime she needed to do something with Jeremiah, she even said she didn’t mind if I took the measurement of his head. (Bad idea, she didn’t know i’m horrible at math.;)) The other awesome part was that the Neurologist offered to take Jeremiah out into the hall while we chatted with a nurse and learned how to administer the medication. The doctor wasn’t young and Jeremiah is fast, but he seemed to be enjoying himself, just chillin’ with Jeremiah – or running and chasing, whichever.
To be somewhere and have the medical personnel understand Autism was so reassuring. They all knew about Sensory Processing Disorder, didn’t even ask me to put the admissions bracelet on his arm. We got some answers and although I feel our life is far more complicated than most, I was reminded that it could be worse. A lot worse.
If you’d like more information on Complex Partial Seizures, you can check out the Epilepsy Foundation.
I also found this article that talks about Autism and it’s relation to Complex Partial Seizures.
Does your child have seizures? How do you feel about them?
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