By Holly Bortfeld
*Disclaimer, I am a parent, not a doctor. This is not intended to be used as medical advice. If your child has a seizure, please contact a licensed physician.
On the 4th of July, my son Max had a grand mal seizure. For background purposes, he’s never had seizures before. Max has been biomedically treated and on the GFCFSF diet since 1998. This is not his first hospital visit however, as he’s had 4-5 GI scopes done over the years, with his colitis in full remission since 2006. Max will be 18 years old in 2 weeks, the day after he gets out of the hospital from his neurology workup.
This blog is merely a chronicling of our experience to give other parents a step-by-step walkthrough of the FIRST seizure, in case you ever need it, and I hope that you don’t. I will tell you this, seizures scare the life out of me, and few things scare me anymore after 16 years of autism. It wasn’t any less scary seeing my own son have a grand mal than it was seeing other people’s kids have one. It will take your breath away. I may not be able to stop this from happening to your child, but if you read this and are more prepared in case your child does have one, this has served its purpose.
My blog series will include:
Part One: Triage and Getting into a good neurologist for tests
Part Two: Preparing for the hospital stay and testing
Part Three: The aftermath: What happens next?
Part One: Triage and Getting into a good neurologist for tests
Picture this. You are sitting at home and you hear a weird sound and get up to go investigate it. I call those “unauthorized sounds” where your “mom-hearing” doesn’t recognize this new sound. You find your child in a full-on grand mal seizure.
What do you do? Call 911? Freak out? Pray?
You mark time. You find a clock and note the EXACT time to the minute. You need to know how long a seizure lasts because it’s the first thing the EMS people and every doctor is going to ask you. It makes a big difference to treatment, so note the time. If there isn’t a clock, start counting. And don’t stop counting until the seizure stops.
You make sure they are safe. You cannot pry open the mouth of a person during a seizure. You can however move them onto their right side (so their heart is higher than the rest of their body) and make sure they are not hitting anything (especially with their head) while seizing.
You wait. Talk to them, tell them they’ll be ok. Don’t forget to breathe. Call 911 if it lasts over 3 minutes. Later, you will have medicine on hand to stop a seizure, but since this is the first one, you won’t have that yet. After a seizure, the person almost always sleeps. It could be 15 minutes or 15 hours, it all depends on the severity of the seizure and the person.
You watch. You keep eyes on 24/7 until you can get your thorough neurology workup, and maybe even longer. I had my son sleep in my room with me and was not out of my, or his sister’s, sight for 3 weeks. He was as unhappy at this level of supervision as we were. It’s exhausting. And it turns out my son has terrible taste in daytime TV if you have to sit in the same room with him for 3 weeks straight! You can get video cameras to install all over your house that you can watch on a monitor or even over your phone or computer from anywhere. Having a second seizure changes the game. A second seizure will mean medications and add special precautions to everything. Everything.
If you do call 911 or take him/her to a doctor or hospital, they will run a slew of tests but unless your child is having repeated seizures, doing a short EEG at the hospital will be useless. You really want a non-medicated minimum 24-hour Video EEG, but preferably a 72-hour Video EEG. They may also run a MRI and CT scan. Unless your child can lay perfectly still for an hour, these are done medicated – either with sedation like versed and propofol, or under a general anesthesia. Make sure you leave the appointment with a prescription for Diazepam Rectal Gel to use in case of an emergency, meaning a seizure lasting over 5 minutes.
Know this: Since 80% of people who have a seizure never have a second one, using seizure medications after the first seizure is premature.
In our case, it was both a holiday as well as the 150th anniversary of the Civil War Battle of Gettysburg, meaning an additional 25,000 people who don’t live in our tiny 3-block town, were cramming it full, rendering the hospital useless to us. After several frantic phone calls to friends with ASD kids with seizures, I had a plan. If he had another seizure, we pack up and drive 50 miles to the children’s hospital, otherwise we just wait it out until we can get to his primary care doctor in the morning.
You get referrals and appointments. Since seizures in the ASD population occur at a much higher rate than the NT population, you already have at least one friend whose kid has seizures and uses a neurologist. Call them ASAP and get a referral to a good doctor who can do a workup. Also contact TACA and get referrals. Call and get an appointment ASAP. If they cannot see you for weeks or months, tell them you’ll take cancellations or come to any facility where that doctor has rights. Last ditch: Almost all doctors rotate to become the doctor on call for their specialty at some point. Find out what dates that doctor is on call and just go to the ER and then that doctor will be your treating physician.
Educate yourself: Start reading. Start with TACA’s website.
1. Seizure page: http://www.tacanow.org/family-resources/seizures/
2. Rossignol’s Simplified Mitochondria, Immune and Neuro Approach Papers: http://www.tacanow.org/family-resources/rossignol-studies-and-treatments-simplified2/
3. Learn the different types of seizures: http://www.epilepsyfoundation.org/aboutepilepsy/seizures/partialseizures/complexpartial/
4. Sym Rankin’s Anesthesia article: http://www.autism.com/index.php/pro_anesthesia
Part two of this blog will cover prepping for the appointment(s) and the hospital stay, tests and more. Stay tuned!
Editors Note: I have enormous gratitude for Holly Bortfeld and her desire to help families living with autism. She is knowledgeable and resourceful. She is the autism community equivalent to “MacGyver” for finding answers and resources for families. Thank you Holly for continuing to share and educate families ~ Lisa
Moving Autism Forward by Team TACA 
Thanks Lisa for this very informative post, i am sure many will benefit from the step by step plan. This post especially caught my eye as my daughter Kaitlin just went in for a 24 hr EEG last week, no major event, just tons of shaking, twitching and eye rolling the past month which warranted the test. Luckily, no nuero issues found…..although now i feel very lost as to the reason, if you were to witness these “episodes” you would def think something is going on more than a simple behavior (which was the final agreement)…..
Yes… that weird sound. Gavin let out a Scream… or a yell.. or a grunt… or a… WTHECK was that? He’d been fussing and honestly… I said it… out loud, “Oh, what now!” And I started walking up the steps to investigate. I walked into his bedroom and saw him on the floor… years working in the hospital, medic training… it just didn’t kick in right away.. It took a second… I said, “Why are you on th….Oh!”
Yes, I freaked out. I can calmly watch other people have seizures. Not with my own kid. I was like… should I call 911?? What should I do?? Who am I?? Why am I here?? 😉
The postictal state freaked me out. Terry Schiavo was in the news then, and all I could think was how much he looked like her at that moment. Checked out. Everything I KNEW, thrown out the window. We did go to the ER. He was 9, almost 10. Blood sugar should be checked. We did a quick head CT –for a couple reasons of course, tumor? Bleed? FX, since no one saw him fall and I couldn’t be sure if he hit his head.
In Gavin’s case he was put on meds right after the first one. While you are correct, in most cases it is premature, but some types of epilepsy do call for it.
His EEG lit up like a Christmas tree. I LOVED this conversation: EEG Tech after starting the light flicker test, “OK Mom if you could just stand right next to his bed there, that would be great” (AKA: HOLY CRAP, you ought to see what I am seeing on this thing!) My Answer? Well not really… I think I had photo induced seizure as a teen, so it’s probably not a good idea!” 😉
–I have since been Dx’d as well.
The type of epilepsy he and I have doesn’t really go away. We are supposed to be on meds for life. My seizures as an adult are myoclonic. I’ve been known to throw a cup of coffee across a room against my will. I refuse meds. As a teen I had petit mals.
For Gavin, it was grand mals. As he grew and meds grew less effective, they’d return. We’d up the dose. I had him off the meds for 1.5 years up until recently. I thought he grew out of them. I could see he has the same myoclonic twitches that I have and had hoped he shifted gears like I did. But recently he started talk about the colors again, about seizures, and looking up to the left. (After Gavin’s first seizure that was my clue that they were coming. He’d look up to the left, act very paranoid and say “Call the doctor!!”)
Whether it was the meds, or the seizures –he had a second regression at this time. We’d been doing biomed with good results.A lot of that was lost. But we keep trying.
Thank you so much Lisa.
I am one of the 80%. I had a seizure at age 5, never to have one again.
Lord willing my son won’t have one, but if I can remember anything I just read, I’ll be a little prepared!