Autism + seizures = parents on edge, constant concern, and questions, questions, questions.
When Jeremiah was an infant he had seizures, he’s adopted and after he came to us we never saw more evidence of seizure activity. That was until he was about two-years-old. One night we woke up to this frightened cry, when we opened Jeremiah’s door, he toppled out crying, terrified, and shaking. Now, some could say it was a nightmare or a night terror. It felt different, I can’t explain it, but my Mommy instinct knew it wasn’t a nightmare (more about that later). Plus, afterwards he had significant regression in his abilities and understanding.
Until last week we hadn’t noticed any more seizures, but the thing is, there are absence and petit mal seizures. This means there’s no shaking, and they can often be invisible. www.rightdiagnosis.com says, “[In the case of petit mals] The person will stop moving or talking and stare into space for a few seconds. Some muscle jerking and twitching may also occur. Once the seizure has passed the person recovers quickly and carries on with what they were doing with no memory of the episode. These seizures can occur occasionally or very frequently, hundreds per day in some cases.” These seizures usually last around thirty to forty-five seconds. When Jeremiah had the episode two years ago, this is what they thought might be happening.
Last week he had another seizure.
It was frightening. Both kids were in the backyard and Payton was having a meltdown because she’d been asked to do something, and in her mind, she wasn’t able to complete the task. Jeremiah was out in the grass staring at her, not too odd because he’d really been paying attention when she’s crying lately.
Justin brought Payton inside and called for Jeremiah to come in, but he didn’t move. Justin waited a minute and stuck his head out the door again, calling for Jeremiah to come inside and eat. Jeremiah usually responds well to this, but he still didn’t move. Justin went outside and picked Jeremiah up to bring him inside, at that time he didn’t notice, but he would later realize that Jeremiah was stiff when he’d carried him in.
Justin and I both had our attention averted elsewhere, on making dinner and on the girl who was throwing a fit about something ridiculous, so we didn’t notice until a little later that Jeremiah hadn’t moved on his chair. Justin had placed him on his chair standing, holding the back of the chair, because that’s what he does all the time. Finally it clicked that Jeremiah hadn’t moved and was still standing where Justin had placed him.
We quickly went to him, I felt his arms and there was a slight tremor in them and he wouldn’t look at me (as opposed to some people with Autism, Jeremiah will look at us when we talk to him) and was staring off into space, he wasn’t there. Justin picked him up, took him to the couch and began removing his clothes, we were thinking he’d been bit by something and it was causing an adverse reaction. We checked his entire body, but didn’t find anything.
Everything was so muddled, there was screaming in my ears, FEAR.
At some point I realized that he may be having a seizure. He then curled up in Justin’s arms in a fetal position and shoved his fists against his eyes for a minute or two, I don’t know how long, time drags when you’re terrified.
We then started his favorite movie to see if he would turn and look, and he did within a few seconds. That was a relief! I held him in my lap, wrapped him in blankets and he stared at the t.v. The seizure itself lasted about seven to ten minutes, which the doctors would later tell us was far too long to be a petit mal. He finally did come around to fairly normal, but we were fearful the seizure would cause regression, because that’s what happened the last time he had one.
All we could do was wait. And wait. And wait.
We picked him up the following morning at school and when I asked if he seemed his normal self, the aide nodded her head in a circular motion, meaning kind of. The teacher said he was lethargic. (We sent him to school because he was doing well, and for him, being out of routine is the worst, and we are confident his teachers are skilled enough to determine whether something odd is happening with Jeremiah.)
That day at home was near normal, but we still needed to see what he’d do in different situations and assess whether he still understood as much as before. As days passed we knew he was where he’d been before. Thank God!
The doctor is referring us to Children’s Hospital, which will take a few weeks, or longer since she forgot to put the referral in. He may need to have a twenty-four-hour EEG done, which makes me extremely nervous. But, I would really like to know if he’s having seizures more often than what we realize so we can do something about it. He’s had so many major regressions in his short life that I’ve always wondered if seizures were the cause, for a long while I was convinced. Yet, his skills and understanding have only grown in the past several months, so that’s wonderful.
The reason an EEG makes me nervous is because we’ve been through it before. After that episode about two years ago where I was sure Jeremiah had a seizure, they sent us to the local hospital for an EEG. No preparation was made for a child who has Autism, and it was a horrendous experience.
Just try to take an Autistic child to the hospital, put them in a strange room, with strange people, then place dozens of sticky electrodes to their head, and have them relax while the brain is read. HA!!!! He screamed and writhed, livid because of what was being done, confused because he couldn’t understand what in blazes was being done to him. He screamed and fought until he fell asleep, but the techs were so irritated that after he’d only slept for ten minutes they decided to end the test and took the electrodes off his scalp. No evidence of seizures, because, see, the person has to have a seizure WHILE the test is taking place.
So, here we go. I thought that with my rare disease flaring up, and Autism, and my husband owning his own business life was full enough. Guess not. However, I’ve seen God carry us through the really tough, the impossible, and I know He won’t fail us.
*Another great example of seizures was shared this week by Faithful Mom of 9 on her blog, you can read about how her daughters seizures presented here.
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If those incidents were seizures they may have been status epilepticus, a very dangerous condition when a person has non stop seizures for a long time. And I agree seizure doctors and hospital staff NEVER seem to have any understanding, or compassion when dealing with kids who also have autism. It makes getting procedures done very stressful.
Thanks for the information, this gives me more to go on when we talk with the neurologist. I’m excited, as next week we will be educating our local hospital pediatric staff on Autism. I hope it helps some!