Let me start this post by saying that I don’t think my son is having seizures.
When Lennon was around two he started staring off into space for brief periods of time. It was strange, but hey – Lennon does strange things. I didn’t really think anything of it, but his team at Nevada Early Intervention suggested seeing a neurologist to “rule out” seizure activity.
Our pediatrician made the referral based on their recommendation and I did the standard for special needs moms – I called and called and called and got absolutely no where. It consumed so much of my energy that I gave up. I would have kept trying, but I was also negotiating ABA services at this time and I just didn’t have it in me.
I sort of let it fall completely by the wayside, much like I am with OT now.
I will note that OT is THE most relevant service on my radar for Lennon. I have never wanted a type of therapy more for him. He hasn’t received it since he aged out of early intervention and my insurance does not have a partnership with a pediatric OT. It’s been a battle. I did make a little headway last month, but in my exhaustion I keep forgetting to make the call … AGAIN.
Back to neurology.
About a month ago I shared a video of Lennon on social media. He was sitting at the kitchen table blinking and drooling. I regulate my followers quite a bit so I was surprised at how many people reached out after I posted. I think it was 5 people total that contacted me and said, “seizures.”
Now, I’m not the parent that doesn’t believe my kid has autism. That doesn’t believe my kid is non/pre-verbal. I don’t foolishly think “he’ll do this or that when he’s ready.” No, I am acutely aware that Lennon has challenges. That he likely has comorbid health issues. And that it isn’t a matter of “when he’s ready,” it’s a matter of when he has proper supports in place. I’m a science based realist.
That said, I still don’t think he’s having seizures.
My proof? I don’t really have any, just mom gut. He drools all the time. He is super sensory and I imagine he loves the way his eyelashes feel on his cheeks (freaking long ass boy eyelashes … am I right? Sooooo jealous!). And staring off into space? He’s just always done it.
However, when five people tell me something independent of each other, I listen.
I took the video and their comments to my son’s pediatrician who then made a new referral to a pediatric neurologist.
A few weeks later we met with her. She confirmed my thoughts. Seizures are difficult to identify in kids like Lennon. Autism often has unique behaviors associated with it and sometimes those behaviors can mimic a seizure. To be safe she scheduled an EEG and gave us a prescription to clonidine to make sure Lennon could be asleep for it. He would never sit still for 30 minutes with a bunch of wires attached to his head.
We experimented with the medicine as she suggested to find the minimum dose that would do the trick. One? Nope. Two? Possibly. Two and a half? That should do it.
I gave him two on the 30-minute drive to our EEG appointment. We arrived. He was still bouncing off the walls. I mixed another into his juice. He was still wide awake as we entered the office, I did everything I could to calm him, but I was really thinking what a waste of time it was going to be. That he wasn’t going to sleep and I lost a good chunk of my day for nothing. I held him in my arms for over 20-minutes softly singing “Twinkle Twinkle” and “Silent Night” – two of the few songs I know by heart – to him.
Finally, my 40-lb child was asleep and we were called to the procedure room not 30 seconds later. Thank goodness too. My arms were starting to give out and I needed to set him down. We got to the room and the tech, Teresa, gave me instructions on how Lennon should be laid down. He needed to be flat on his back inside a boppy pillow. He looked like a corpse.
From there I prepped another sippy cup – it was just in case he started to stir, I knew that if he woke and immediately saw my face next to his and had a cup in his hand, he would possibly go back down quickly. Tech Teresa started to apply the electrodes (I have no clue what they’re called so I’m going with electrodes) to his head. How she managed with those nails I’ll never know. More power to her.
30-some electrodes later and it was time to watch his brain work. I don’t know what I was feeling at this point. It’s a bit surreal to see your 3 year old like this, but even so, I was a little nervous. Nervous they wouldn’t find anything, more nervous that they would. Nervous that he would wake and tear the electrodes from his head, destroying them in the process, resulting in a mega-bill from the clinic to me. But more than anything, I think I was just curious. What did each spike in the line mean, how did they read it, was it better to show constant movement in the lines or lighter activity? I watched the computer intently and listened for Lennon in case he started to wake.
There’d be a spike in the graph and I’d ask Teresa, “What was that?” Most of the time she would tell me it was nothing. Only once did she tell me it was, “a little sketchy.” But I wasn’t going to get any real answers until I meet back with the doctor on the 29th and I’m not about to stress out about one more thing and a thing I can’t even control at that.
After the initial part of the test they did a lighting test – I would have not done well at this part. Migraine city! Basically a lamp flashing in his face for 5-minutes. I guess the seizures induced by these are the ones you get on rides at Disney and playing video games. Lennon didn’t flinch and the output on the computer didn’t look “sketchy.”
I know he was asleep, but I still think it’s fair to say that all in all he did amazing. The one time he stirred I was able to get him right back down. And he basically slept the rest of the day so mommy could get sh*t done!
I’ll let you know when we get the results.