Tuesday, May 26, 2015

Seizures are the devil


"Fireman Max! Fireman Max! Can you hear me?" I pleaded as Max lay next to me. It's the name he responds to these days. Only he wasn't answering.

We were down at the Jersey Shore for Memorial Day weekend, and Max and I had fallen asleep in the big bed at around 10. That turned out to be lucky, because otherwise I wouldn't have heard him having a seizure. I woke just before midnight when he let out a few yelps. And then, his arms and legs were shaking uncontrollably.

"DAVE! SEIZURE!" I yelled, and he came running in from the living room. "CALL 911! NOW!" Dave turned on the lights, and I could see Max's eyes rolled to the back of his head. I slid him onto his side and slipped my arm beneath his head as Dave dialed. I hugged Max into my body, willing the seizure to stop and terrified.

Max hasn't had a seizure since he was 5 years old, and it was a pretty mild one compared to the grand mal he'd had at 18 months that lasted for more than a half hour. Trileptal had kept them under control...until now. I realized that my purse with Max's emergency anti-seizure injection, Diastat, was at home. Dave and the kids picked me up from the airport Friday night (I'd been in Chicago at the United Cerebral Palsy conference), and we'd driven directly to the beach.

"Fireman Max! Fireman Max!"

He didn't respond.

We were actually having his medication levels tested next weekend. Max is at higher risk for seizures as he goes through growth spurts, the neurologist has said. A few seizures don't have an impact but if they become a regular occurrence and last long, they can cause brain damage.

Seizures are my boogeyman, one of the things I fear most in this world. As I helplessly watched Max convulsing, it seemed like the devil had taken over his body. Seizures are the closest I have ever come to seeing Max die. That was horrifying to write, but it's nowhere near as horrifying as seeing your child gone from you.

After about a minute and a half, the shaking stopped. For another couple of minutes, Max was unresponsive, his eyes staring straight ahead, his pupils dilated. Eventually, he nodded when I said "Fireman Max!"

By then, a policeman and a resort security guard had arrived. The EMTs were on their way. It turned out the guard was a firefighter by day, and he showed Max his ID. That barely got a rise out of him,  he was so out of it.

When the EMTs came they took a look at Max and asked if we wanted him to go to the hospital. We didn't see any reason to subject him to it; there wasn't anything else to be done.

And then everyone left and soon it was just Max and me lying in the dark. He started snoring gently, as I held one of his hands. He'd been up late for several nights in a row. He'd also had a bunch of late nights back when he had the last seizure, and so fatigue was a likely cause of this, too. I got up and emailed the neurologist.

In the morning, Max literally bounded out of bed at 7:30. He was his usual Max self, maybe a little paler than normal but good-humored and eager to down one of his usual Dannon Whipped Chocolate Yogurts for breakfast.

"Max, are you feeling OK?" I asked.

"Yeah!" he said, smiling.

At age 5, Max wasn't able to explain stuff to me, but now he can.

"Max, do you remember having a seizure last night?" I asked.

"No," he said.

That was good.

"Leese!" he said.

He remembered that there was a policeman standing in the bedroom, but that was about it.

"Happy?" Max asked. I know I looked worried.

"Yes, I'm happy," I said, untruthfully. Later, Dave and Max headed out to rent a golf cart for a couple of hours, as we'd promised him, and Sabrina and I went to the beach. We talked about the seizure. She'd heard Dave calling the police, then fell back to sleep. She asked if Max was OK, and I said he was.

Sabrina built sand castles and I sat on a towel, envisioning Max having the seizure.

In a bit, Dave texted me a photo. He and Max were having a fun time watching a Memorial Day parade.


A fire truck passed by, and a firefighter recognized Max from a visit to his station.

"Hi, Fireman Max!" he shouted.

Max responded with a great, big grin.

The neurologist is raising the dosage of his medication, and hopefully that will work. We will do our best to ensure this doesn't happen again, although I have a feeling it will.

I had Max sleep in our bed last night. I tucked him in early, and lay down next to him for a bit.

"Happy?" he asked.

"Yes," I promised him. "Are you?"

"Yes," he said, and he was.

Photo: Martin Luff

41 comments:

  1. Oh Ellen! I am so glad Max is fine now and I hope the higher dosage is all he needs. I know seizures too and I have to agree with you, they are the devil!

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  2. My heart was in my throat as I read this, Ellen. I am so glad Max is all right. It must have been terrifying for you to witness. Hopefully his doctors can get things under control again with medication.

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  3. Ellen your story is terrifying and your writing brings us right there with you. I'm so sorry you're dealing with the seizures. Max's resiliency makes me smile. His gift to you (and us as readers.)

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    1. Thanks, Alexis. It sure isn't lucky that he has seizures, but it is ultimately lucky that I got him as a kid.

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  4. So sorry you and Max and Dave had to go through that. Sending love.

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    1. Thanks, hon. I need some PD therapy when we have lunch!

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  5. Oh it's awful. My son is on trileptal too, and last year he had several breakthrough seizures while we adjusted his medication. I was just saying the other day, though, I'm glad that his doctor is using the lowest dose that works, but it's so, so awful when you are going through it. We have been holding steady for a while now (knocking wood) and I hope you do too!

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    1. Knocking wood for you, too. Max's meds definitely needed adjustment—I'll bet anything the bloodwork we were getting next weekend would have shown that.

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  6. How scary! I'm so glad that he's okay. xo

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    1. He is OK, and being Max, his only concern is that I am OK. This. Boy. Thanks, Shell.

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  7. I was going to write that I couldn't imagine how terrifying that must have been, but actually I can imagine it, because you were brave enough to share this. I'm so glad he's okay, Ellen, and that you are too. Sending you guys love.

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    1. Thanks, Lauren. I shared this not because I have great guts but because it's cathartic, as is reading these comments. xo

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  8. Seizures are the devil. It is good that Max was okay afterwards. He has a gift for rising when the world knocks him down.

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    1. Anna, you're right, he's got that spirit.

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  9. Ellen our neurologist always says she worries much more about the effect of these seizures on us, the caregivers that watch them, then she does the kids. She says, I know they recover in a matter of hours. (((Huge hugs))) and take care of you.

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    1. Oh, this couldn't be more true, mentioning in tomorrow's post. I hope your child is doing OK.

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  10. I had tears in my eyes as I read this. Thank you for writing about what you go through and how you deal with it. You have an amazing ability to educate and explain not only the highs, but also the lows of having a child with CP. Give Fireman Max a huge hug from all of us here at Danielle's Foundation (and one for Mom and Dad as well!) Jessica Martinez, Outreach Coordinator, Danielle's Foundation

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    1. OK, done, I gave Fireman Max a hug for you. And enough for the whole planet!

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  11. Oh sweet momma and Fireman max-I love hearing your proactive thoughts. When we have children whose needs sometimes arent the same as others I think we become very good planners, depsite the (at least for me) times when the thoughts and concerns are overwhelming. Children are so beautiful and resilient

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  12. Oh my god, my heart just dropped. So sorry this happened, glad he seemed to recover quickly. hang in there mama!

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  13. My heart dropped as I read that. Glad Fireman Max is okay and I hope his medicine dosage gets adjusted. Seizures are one of the scariest things ever to see. I have seen 1, a classmate of mine in 7th grade had a fever that happened real quick(she ended up having some infection) and she seized. She is fine now, but I dont think I will forget that.

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    1. Febrile seizures are pretty common, even in kids with no prior medical history. I'm sorry you had to see that.

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  14. Seizures are very frightening. My daughter had thousands. You might ask your son's neurologist about Midazolam. It's administered with a nasal injection. A lot easier to administer than Diastat.

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    1. Harriet, thanks for mentioning. I actually spoke with our neuro right after I read this and mentioned Midazolam. I am not concerned about administering Diastat if need be, but I wondered if Max's babysitter might be more comfortable with a nasal injection. The doctor mentioned that it can cause vomiting, which I thought might further unnerve our sitter, so for now we are sticking with Diastat.

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  15. I'm so sorry to hear that! How wonderful that you were sleeping with him that night. Sending you hugs xo

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    1. I know, pure luck, right? Thanks, Louise.

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  16. It is very good that max is ok now. seizures are the worst! I have epilepsy and have had a lot so I know. But it's a good thing that it was shorter than the grand mal

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    1. Yes, it really was a blessing that it lasted under two minutes, as I'm sure you know better than us all, Meredith.

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    2. That is good that it was under two minuits and that certainly possible

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  17. My heart stopped beating as I read " Seizures are the closest I have ever come to seeing Max die" because I know that exact feeling all too well. That is exactly what I thought was happening when I witnessed my daughter's seizures. We are now at the point that she has been 2+ years seizure free so we may try weaning her from her Carbatrol and I am terrified! I am so glad that this one was quick and that Max bounced back so nicely. What a blessing that he was sleeping with you at the time! If only we didn't have memories of them! Stay strong!

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    1. Here's to many more seizure-free years, Sheila.

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  18. Oh my goodness, Ellen, how scary! I'm glad Max doesn't remember any of it (except for the policeman). I am thankful he is ok now!

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  19. Hey, sorry to hear about the chaos at your end. As I say, "been there, done that, didn't have time to buy the tee shirt!"

    Yes, seizures are no fun, but according to the neurologist we use (who also recommends Midazolam, BTW), kids generally don't really remember them happening. Of course, the last time my son had one he kept saying for the next two days "you fell", but maybe he just knew that he "woke up" on the floor, or maybe he remembered going down, but not the shaking itself...who knows??? But yes, we freak out and wish to crawl into the nearest box of chocolate, and they just go merrily on their way :-)

    BTW, check with your neurologist - mine mentioned to us a while back that yes, growth spurts can require medicine changes, but apparently puberty can do weird things too (for instance, kids with autism like my son will sometimes start up with seizures at puberty, even though they've been fine until then). Plus they're big on hydration - apparently if a kid dehydrates they're more likely to have a seizure.

    Good luck with all of this - Alyssa

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    1. Max definitely doesn't remember a thing, which is good. "Didn't have time to buy the tee shirt" just totally made me smile, thanks, I needed that. Planning to talk more with the neuro in person and revisit Midazolam.

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    2. Glad I could make you smile :-)
      -Alyssa

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  20. Ellen I'm so sorry. Seizures are the worst of the worst of the worst. I just hate them so much. I'm so angry that Fireman Max had to experience another one. We are thinking of him and hope those meds get squared away ASAP. Xo

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    1. This just moved me to tears. I've never had to deal with a child's seizure; it sounds terrifying. I'm so glad that Fireman Max is doing well again.

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  21. Hello I read on abother blog that they have to keep increasing the dose as they age be very watchful around the teen years because ive herd alot about puberty messing with kids with epilepsy I lived with a severely autistic middle aged man he was on a ton of meds a few times a day he was constantly having different types of seizures its a sad thing really

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  22. Do you wonder if he's had seizures that you weren't aware of? My son was recently diagnosed with epilepsy at age 13, and I can't help but wonder if some have happened as he fell asleep, but I was unaware... Scary thoughts. Cathy D.

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Thanks for sharing!



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