Wednesday, May 31, 2017
Fear of seizures is like wondering if a bomb will go off
As we had breakfast at a favorite restaurant Sunday morning, Sabrina asked, "Why is Max's head shaking?"
Sure enough, Max's head was jerking side to side, like he was saying "no." Dave and I both jumped up from the table, scared.
Seizure, I thought.
"Max! Max! Can you hear me?" I asked.
He didn't say yes but I knew he was present. If he hadn't been, it would have been a definite sign of a seizure.
The movement stopped within ten seconds, and Max was back to normal.
"Max, do you feel OK?" I asked.
"Yes!" he said.
The last time he'd had a seizure was two years ago, also on Memorial Day weekend. Max had stayed up late for a few nights, and the sleep deprivation triggered a grand mal that made his entire body shake for two minutes.
The night before our breakfast out, Dave had shut off the TV and tucked Max into bed. Only Max had gotten out of bed and turned on the TV, as I realized around 11 when I heard noise from his bedroom and discovered him groggily watching TV.
I immediately dialed the pediatric neurologist's answering service and left a message. He called me back within a few minutes. I explained about the TV situation and the head movement.
"The good news is that he was present," he told me. He went on to remind me that as a teen, Max is more at risk for seizures. He also noted that because of that, and the sleepiness, we might notice occasional unusual behavior like this. He recommended we give Max an additional 1/4 of a packet of the compounded Trileptal he takes, sprinkled into yogurt or applesauce.
It was a relief that Max hadn't had seizure activity. It was unnerving to think that if Max was tired, he could start twitching like this.... or worse.
Worrying about the seizures is like living with a bomb that could go off. Maybe that seems like an awful comparison. Although it isn't something I regularly think about, the fear is real and it runs deep.
Max prefer to sleep with his door shut. For the last couple of nights, this has made me nervous; how would I hear him if he yelped, which is how the last seizure started? And so, I've cracked open his door and checked on him. Of course, this has woken up him, the last thing I want.
He mumbled something last night.
"I'm OK," he said.
I knew he was, for the moment. Going forward, I couldn't be sure.
I have a question for you: our grandson has seizures, mostly controlled by a ketogenic diet, but he still has some breakthrough ones and even more so lately. He is now 11 and when you stated that your doctor reminded you that Max would be more at risk for seizures as a teen, it gave me pause. We (his parents and I) have wondered about puberty being a factor in the increase of his seizures. Is this what your doctor was referring to?ReplyDelete
Yes, it's related to puberty, definitely discuss with the doc at next visit, always better to be in the know sooner rather than later.Delete
Thank you, Ellen. His parents have brought the puberty issue up several times in casual talk, so I guess this is just another step. Sigh. It doesn't seem to get easier. :-(Delete
Ellen, would you consider putting a baby monitor with a camera in Max's room? That way you could see and hear him during the night, but not have to go into his room and disturb him?ReplyDelete
You know, we talked about doing that after the last seizure...then didn't. Thank you for that reminder, I think we need to.Delete
Truth. We have a video monitor in our 9 year old son's room and every time his breathing changes I wake up ready. It's awful waiting for the next seizure. Josh has had both complex partial seizures (full on loss of consciousness seizures lasting as long as three minutes) and simple partial seizures that he is conscious through and that only last 30 seconds. I hate them. And I hate the fear that lurks in my mind every time he does something "off". Solidarity, mama. I hear you.ReplyDelete
It is very hard for others to understand the fear of seizures unless you have a child with them. We are part of a unique club. Not that we WANT to belong, but here we are. Thanks for the cyber fist bump, back at you.Delete
Even at not quite three, this has been a daily worry since my son's daily, frequent seizures just suddenly stopped last July for no apparent reason. We didn't change any meds. We weren't doing anything new or different-we just realized one day it had been at least a week since we had seen him have one-his previous record being 5 days, we started watching closely. Then a month passed. Then 6. Here I am 10 months later and I still question every unusual, rhythmic movement. Every odd twitch or eye movement. Every day I wonder, is this the day we reset the clock. We just started a very slow, 4 month wean off one of his two daily seizure medications last Monday, so I am on high alert! The struggle is totally real!!ReplyDelete
The bomb metaphor may not be necessarily good, but it is certainly accurate.ReplyDelete
It could still be a minor seizure.ReplyDelete
I just repeat in my head that most seizures stop on their own... although promoting good sleep, staying well, not forgetting meds, and reducing stress are all part of the preventative measures.
And while we don't see tonic clonics, the only kind our child can report are simple partials that still happen every 3-4 months - the complex partials and two kinds of generalized seizures she isn't aware of and are not clearly seizures to those around her. So really all the seizures our child has are not recognizable as such, can catch the complex partial post ictal affects. On reduced medication it was ongoing activity at the last EEG and even showing the video to me, I would have an impossible time catching those. Waiting for puberty to know how things will be playing out longer term.
Well, our pretty experienced neuro does not believe it was a seizure. As for seizures stopping on their own, I don't know. Perhaps it depends on the kind?Delete
When Max had a grand mal at around 15 months old, it went on for close to a half hour before it was stopped. We were lucky he sustained no more brain damage from it. I hope your daughter's seizures remain under control.
Well, it's clear we live in very different epilepsy lands. In the land of a good variety of partial seizures where I've spent all my life with epilepsy (generalized seizures came later), one weird thing is something to note, two weird things is something to follow up on and (most likely) get one's meds upped. I note that because I'm assuming your son has partial seizures as that's what Trileptal treats.Delete
Most seizures (across all patients)stop within a few minutes (one of those epilepsy.com facts) (and thus are not status) so I'm sorry if status makes up a majority of your experience. Partial seizures alone are not emergencies, although damage can comes from not having them under control. I stopped counting after a few hundred seizures so I'm somewhat habituated to minor seizures. Complex partials pack a wallop on the memory and are no fun. Our child's epilepsy is considered genetic so while the epi is optimistic about seizures ending at some point, we've never seen all of them under control for more than a few months. Medicine just reduces the numbers.
So the bomb metaphor is not quite right for us, we just take flak on on a regular basis.
Hi Ellen, Can totally relate to this, although we have never known our daughter to have a seizure during sleep we were having many worrying sleepless nights so we upgraded our baby monitor to a video version and also purchased a bed alarm which alerts us to sudden noise and continuous movement as in TC seizures, J also sleeps with a anti suffocation pillow and AS mattress topper, still worry but this helps a little.ReplyDelete
Sharon, you have done all you can to help protect him/keep an eye on him. I have to look into bed alarms—do you have one you recommend?Delete
After some online research, we purchased from a company called Medpage, they have a range of different alarms to suit different needs, before purchase I called them and they were very informative answering my questions and helpful in advising which would be suitable for us. We have been able to take it with us when travelling as the size is great. Hope you find one that helps and will give you a little peace of mind x
I can also relate. My son with cp started seizures in puberty. He's been on anti-seizure meds for over 2 years, but recently had a break-through seizure around midnight. Fortunately, my college daughter was home (and awake!) and saw it (it was less than a minute). We've increased his meds, but we also have to reset the clock. The neurologist recommends that my son not be left alone until 2 years seizure-free.ReplyDelete
That is so lucky she saw that. I hope the meds keep them under control. What's he on? Max uses Trileptal, which is good because it doesn't have side effects for him.Delete
He's taking Keppra, with no obvious side effects. Yes, I'm thankful my daughter was there to guide him away from the stairs. Neither of us slept that night - but my son did!Delete