No one told me what to expect.What to do.How to survive.
How to sleep at night.
How not to jump at every sound.
No one told me…
And yet there he was. My precious Matthew writhing on the floor, his head thrown back, eyes rolled back in his head, foaming at the mouth, and growling like a mad dog.
It was over two years ago but I can close my eyes and see it like it is happening now. We were attending Special Olympics state games in Long Beach. Matthew was on the Track Team and I was there as an Assistant Coach. All of the Athletes and Coaches had congregated in the hotel dining room for a buffet breakfast. Matthew had just gone in to sit down and I was getting orange juice.
Someone, I don’t remember who, came in and told me that Matthew was having a seizure. I remember thinking, “Matthew who?” My Matthew was the only Matthew on the team and he didn’t have seizures. But somewhere in the back of my mind reality hit hard and fast. I don’t remember what I did with my breakfast tray. I just ran into the dining room.
It was surreal.
There was this boy writhing on the ground with 3 Marines leaning over him.
No kidding, 3 Marines.
I had never seen someone have a Grand Mal seizure and I didn’t know they were common in Autistic Teens. As I watched Matthew I knew he was going to die. My precious baby was going to die right there.
And then I looked up at the 3 Marines and I remember thinking, “No, it’ll be alright, the Marines are here.” Then I remember thinking, why are they here? Aren’t they supposed to be storming a beach somewhere? Odd what goes through your mind at these times.
Matthew’s Dad, Stepmother and Sister were still in their room and I remember someone handing me a phone. I suddenly no longer knew how to use one. Someone else had to call them. Someone else called 911.
And all I could do was hold Matthew’s head and tell him I loved him.
One of the other coaches told me later how much they admired how calm I was and how well I handled the situation.
Really?
I think I was just too stunned to get hysterical but trust me, inside I was completely hysterical.
Slowly Matthew’s eyes started searching around the room, unfocused but not rolling back in his head. He said, in a rather weak voice, “Mom?”
It was the most beautiful sound in the world! And I knew everything was going to be OK. He was really groggy. If you didn’t know what just happened, you might have thought he was drunk.
The paramedics arrived about this time and I remember the Marines calling out respiration and pulse numbers and other info. I remember looking up and seeing the rest of my family walk in looking stunned. But we were on our way back to OK at that point.
The calm efficiency of the Marines and the Paramedics really helped me keep it together and somehow I got up and walked out to the ambulance for the ride to the emergency room. Directions to the hospital were given to Steve, Matthew’s Dad, and plans were coordinated and it was all a bit of a blur.
But coming back into focus a little.
And then I knew all was well…
I was riding in the front of the ambulance and two paramedics were with Matthew in the back. One of them asked him to do something and he replied, in his normal, enthusiastic voice, “Yes, Sir.!”
We all laughed and I told the Paramedics, “He’s back. He’s OK. That’s my Matthew again.”
We still spent a nerve wracking morning in the ER while they did an MRI and blood tests and other stuff. The Doctor explained that since this was Matthew’s first seizure they couldn’t know yet what it meant long term. All they could do was rule out things like a brain tumor (What?!?!) and then wait to see if he had another one. He didn’t say anything but I could tell by the look on his face that he was stunned and a bit angry that no one had ever warned us about this. He was an ER doctor but he was aware that this was not uncommon in teens with Autism.
You’d think between doctors, special ed teachers, speech therapists, behavioral therapists and case managers that someone might have mentioned something. It would have saved me a lot of stress and fear. You can’t prepare emotionally for it. If you’ve never seen someone have a Grand Mal Seizure all I can tell you is that it is completely terrifying. And I would still have been terrified as it was happening but I would also have known that it’s not the most horrible thing that can happen. That it’s a manageable situation.
And that Matthew was not going to die.
Matthew runs the 400m at his first SO State Games - 2008
My Matthew is an amazing spirit. He had a great time that afternoon at the Olympic Village and ran his events (he’s a distance runner) the next day. He brought home a silver and a gold – very precious metals!
Matthew has had four more seizures since that day but now we have them under control with medication. Until we were confident the medication was working we definitely made some lifestyle changes. And it took me a while to sleep well and stop jumping at every sound (the joys of a 2 story house and a crazy kid who likes to jump down from a bunk bed!).
The fear with those seizures was not the actual seizure but the fall. Matthew is over 6 feet tall and when his body seizes he doesn’t just fall, he is literally thrown to the ground. He has had some nasty bumps on the head and twice we were worried about concussions.
Each time he had a seizure I was freaked out. It’s just how he looks when he’s having one. But at the same time, I wasn’t as terrified as I was the first time. I knew what to do and what to expect and I handled it.
But I wish someone had warned me…
Of course, the first thing I did after Matthew’s first seizure was hit the Internet for information. This article is a good overview of seizures and Autism - Seizures and Autistic Children. There is also a lot of information on the Epilepsy Foundation site.
About Sandra
Thank you for sharing your story. My daughter is 13 & she experienced a seizure while shopping with me on Tuesday. This is the first time this has ever happened & like you, I thought my child was dying in my arms. I kept calling her name & telling her I was there & that I loved her. Ari has Autism, ADD & OCD. No-one ever told me that she could develop seizures in her teenage years. CT Scan, blood work & urinalysis was carried out at the ER, & she was discharged when all results came back clear. She has been referred to a neurologist & thankfully will be seen tomorrow afternoon. I am so afraid that this will happen again. I have relived that moment over & over again & will never forget it for the rest of my days.
Hi Trish,
Yep, it’s a scary thing. It took 5 seizures before we got Matthew’s medication right but now we are 2 1/2 years seizure free. Hang in there!
thanks for this story the same thing just happened to my son who is 18 i am so traumatized i am checking on him every few minutes and jumping at every sound i know i am getting on his nerves but mine are shot right now just so worried to death have never had to deal with this before praying this never happens again but wanting to know everything about this and what to do for the future and pray i can remain calm because i was anything but calm
My son is 17 and just had his first Grand Mal seizure … or his first any seizure yesterday. I was scared to death. Why is it that this is happening so late in his puberty? I was thinking this would happen at age 14 or 15, not 17. How far apart were your son’s seizures? How old was he? Can I sleep at night or should I keep an eye on him 24 hours a day for awhile?
Hi Sandra. I cried as I was reading your article I have a son Matthew as well who has autism and started having grandmal seizures 3 years ago his first two were in the shower and like you I had never been warned had never seen or even thought anything like this would happen. I am so happy to have found these stories because like crystal I check on Matt every few minutes I jump at every sound and am feeling that i am alone in my over worrying. So in hope of informing others, my Matt was 14 when he started having seizures, he is now 17, has had 12 seizures, in all kinds of places. The first med. he was on controlled his seizures for a year ,then seizure, med. increase, seizure, med increase, side effects, med change, and still more seizures and more increases his last seizure was 6 days ago. We remind ourselves daily that we can’t let this stop us from enjoying life and planning future activities and it can be difficult at times to remember, but I’m happy reading I’m not alone,thank you both. Mandy
Hi Mandy,
Yes, it’s a very scary experience for everyone. You are so right, though, you can’t let it stop you, or your Matthew, from living! Thank you for reading and for sharing your story.
My nephew has been diagnosed with autism and had a seizure this week my sister who lives over in England was also unaware that this could happen i am so heart broken for my nephew who i can’t be with and for my sister who i can’t be there to support. I am just feeling helpless and your article just gave me some comfort .
Sharon
Hi Sharon,
I’m glad this gave you some comfort. I can tell you, now that Matthew is almost 3 years seizure free, that the most terrifying part is feeling out of control and helpless. But it will be OK.
Hi everyone,
My son is 22, autistic, 5 years ago, his caregivers reported he had a seizure. All tests came back clear and he was put on topamax to control his migraines and hopefully seizures. Well, as I write this we are in the ER, he seized again tonight, maybe they need to increase his dosage of topamax, he’s doing fine, he’s walking and watching movies on his iPad..I’m pretty sure the doctors will give him a all clear as the paramedics did earlier tonght.., but we want to be safe and be double sure… Here’s to jumping at every sound, bump and thump…for a while at least
Hi Kelly,
It is almost 3 years since Matthew’s last seizure and I still jump at every bump and thump. His tests came back clear, too. We went from Kepra to Depakote and that did the trick.
And Matthew was always fine after his seizures, too. Me? Not so much.
Hang in there!
Hi sandra,
My son has been seziure on and off. What was the medication you use for your son Matthew. My son eyes ball rollback and foaming in mouth when he had seziure . Is the doctor you see location the in state? I hope I here from you soon. Thank you
Hi Andy,
This sounds a lot like Matthew’s seizures. We see a pediatric neurologist but are getting ready to find an adult neurologist.
We started with Kepra after his second seizure but after the fourth we switched to Depakote. The Depakote is working perfectly.
Hope this helps!
Sandra
My 14 year old daughter had her first seizure yesterday in our living room. It was a terrifying situation. I work in health care and have seen a couple of seizures but it was so different since it was my own child. I did know that this was possible but, of course, I thought it would never happen to her. We will see her pediatrician in a day or 2 and then go to a neurologist
It is hard. My son had his first two days after thanksgiving in November. He hasn’t had another. Many times there is only one, and no one can find the reason. We do things differently now, like watch him nonstop in the bath, keep his door open at night so we can hear unusual noises, and carefully make sure we don’t miss any of his medications (not seizure meds, but even regular meds can make a difference whether they lower the threshold for seizures).
Just take her to the doc and check everything out.
It’s going to be okay.
Lisa
Thank you for your info Sandra and all your hard work for the sack of all family that you answer with you tirelessly. Thank you from the bottom of my heart.