According to Medical News Today,
* Around 20-30% of children who have Autism develop epilepsy before becoming adults
Have you ever felt that strange twitching sensation just before your body transitions from a wakeful state to a sleeping state? Have you ever felt like you were falling, right before your body transitions from alertness to sleep?
If you can answer "yes" to 1 or both of the questions, then you will have a vivid mental picture of what is physically happening to Nolan's body, what I like to call, the "jerk effect".
That strange twitch-like sensation you get right before a deep sleep is the best way I can describe what I observed to be happening to Nolan. He is experiencing myoclonic jerks-sudden, involuntary muscle movements.
The first time I saw one of his episodes, my heart almost skipped a beat. It was a scary thing to see as a parent. He was just going about his business and then all of a sudden, it happened...his body seemed to be out of control, rapidly twitching from his head to his toes. This wasn't the typical "stimming" activity he has always presented with, this was something different! It was almost as if he wasn't "present" in his own body for seconds at a time, which seemed like an eternity to me.
I immediately contacted his pediatric neurologist and she asked me to try to record one of his episodes. My instantaneous response to her request was, "What? How could I predict when the next one would occur?" Not to mention, "How could I have enough time to prepare my phone for a video recording when these episodes were so unpredictable and so quick to come and go?"
I had an idea!
Even though it was a long shot, I could periodically record Nolan with the hope that one of these episodes would occur so his doctor could see what I was seeing.
I sent her the following video:
She advised me to head to the emergency room and that she would put a rush on getting Nolan admitted for EEG testing to see what was going on in that precious little head of his :) After hours of testing, we finally got an answer: Myoclonic seizures/jerks.
It turns out that these quick, involuntary muscle movements are quite common in children with Autism and they aren't dangerous to the brain. The doctor said she could start him on medication to stop the jerks, but the side effects can be extremely harmful to the body. If I see that the jerks are hurting him or causing him any pain in the future, then yes, medication might be an option-but not right now.
Well, I got an answer! I now know what is happening to Nolan-these episodes are NOT harming him!
This was good news...sort of?
Yes, it was great to hear that these jerks are not harming his brain, but on the flip side, his neurologist said that his brain waves-spikes on the EEG-show that Nolan has a high propensity of more severe seizure-like activity in the future.
No, I am not a medical professional, nor am I offering any medical advice- but I DO know that for me, sharing similar stories amongst people who might be experiencing something comparable to what we encounter does help to calm MY mind. My hopes are that OUR story about myoclonic episodes, along with the video I included, will help other Autism parents out there that might have a child experiencing something similar.
One day at a time, Autism moms. One day at a time :)
Tell me moms...have you or your child felt the "jerk effect"?