Monday, March 7, 2011

Fear of seizures: This time, the boogeyman laughed at me


Friday night, Max showed up at our bed in the middle of the night, as he's been doing for months now. We definitely need to do something about it, but my willpower is weak at 2:00 a.m. and Dave doesn't even wake up. What I'd like is a bouncer who can stand guard at our bedroom door and escort Max back to his room and, come to think of it, keep both kids out till 9 a.m. on weekend mornings. I'm sure I could find someone on Craigslist.

Max crashed in our bed. I woke up to the sound of him laughing in his sleep, a hearty chuckle that lasted for maybe 5 seconds.

My first thought was not, wonder what amusing thing he's dreaming about. It was, YIKES, IS HE HAVING A SEIZURE?

I thought I'd once kinda sorta read that laughing in your sleep is a sign of seizure activity.

It was 4:30 a.m. I jumped out of bed and sat down at the computer, my friend and my foe. When Max was a baby, I'd spend hours Googling info about seizures, which he was at risk for. I'd convince myself he was having them. These days, he's on good anti-seizure medication (Trileptal); he last had one less than two years ago.

I couldn't find anything relevant on Google. This was, of course, because I was being ridiculous.

I emailed our neurologist, who is always quick to respond. Sure enough, he did a few hours later, and the subject line didn't even read You Are Whacked. He wrote,

"There is such a thing as gelastic seizures, but that is not the same as laughing in your sleep. The chances of having a laughing seizure are near zero, and the chances of either being awake and happy with life or having a funny dream about cars or some other favorite topic is infinitely higher. Don't worry about it."

He is so very sane.

I am typically a drama-free person (well, depending on whether or not you ask Dave). But seizures are my boogeyman, one of the things I fear most in life. I get irrational about the possibility of them.

For the last month, before bedtime, Max and I have been watching a video of him performing at his school's holiday show. At one point, his arms and face completely tighten up then relax. Every single time I wonder: Is that a seizure? The doctor long ago reassured me that the movement is a tic exacerbated by the spasticity from the cerebral palsy. But as I watch Max and a crowd of adorable kids singing "Here Comes Suzy Snowflake," I dread the moment when it happens.

Much of my fear dates back to Max's birth. He seemed like any other healthy newborn; the next day, a doctor realized he was having seizures. I'm not sure I'll ever get past that feeling of thinking everything is OK only to get sucked into a nightmare. Things may not be fine, my mind says. Pay attention. Worry.

This time around, though, it was only a dream. And a funny one, at that. Maybe he was picturing us all purple?

I suspect I am not alone here. Got something that irrationally unnerves you when it comes to your child?

26 comments:

  1. My oldest and youngest (both of whom have Asperger's) laugh like that in their sleep. I asked my oldest if he remembers what makes him laugh, he basically told me that when he is asleep his brain "feels normal".
    The thing that unnerves me most is when my middle son has his vasovagal episodes (he faints, & his heart stops for a bit as well). I know he will come out of them, but I flip out every time! I know they aren't as bad as seizures (we have dealt with those in this family as well), but they still are a reason that my hair started turning white at 30.

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  2. Whenever we go to the neuro, I tell her every weird thing he's done in the last four months and she's never concerned. Laughing while sleeping was one of them.

    Boogey men? I'm not sure. In our first six months we dealt with heart failure, kidney damage, major brain bleeding, hydrocephalus, failure to feed, brain surgery, and then catastrophic seizures. I guess I'd have to say pneumonia only because we haven't had a lot of lung issues, but I know they are very common with CP kids and can be deadly.

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  3. seizures are (one of) my boogeyman too! My husband is the one having them instead of my kids though.

    Although seizures are serious stuff, after you have seen a bunch, it won't be as scary anymore. I think it took me about 8-10 years to stop being really shaken up every time hubby has a grand mal at home. Now I am not sure I even have to wake up 100% before I deal with them. I tell the boogeyman to take his butt back where he came from!!!

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  4. 4 letters...PICU. It immediately sends me to Post Traumatic Stress Disorder reaction, which is what I'm guessing your over-worrying about seizures is caused by, rather than the boogeyman. It doesn't even have to be my kid (although the reaction is significantly worse if it is) but it can really be anyone. I was reading a book yesterday (90 Minutes in Heaven) where a majority of it is set in the ICU. And I twitched. And cried. Because I know it too well. And I know how few leave alive. And now I'm tearing up. Gotta go think happy (non PICU) thoughts!

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  5. Sheri-Rose RubinMarch 7, 2011 at 8:17 AM

    My irrational fear is hip surgery... not as life altering as seizures but I live in fear of it anyway. We X-ray every 4 or so months to watch the progression of Max's hips and I hold my breath each time. Kids like my Max are threatened by the need for it all the time and each time I read an account of the pain and set backs it causes, I literally stop breathing. My Max is starting to make wonderful physical progress and I stay constantly at war with my own boogymen...

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  6. Seizures are our boogeyman here too. My daughter has only had one but is at a higher risk to have them again. Every time someone yells my name or bursts into the bathroom while in the shower (which being a mom, happens an awful lot) my heart skips and beat and I hold my breath just knowing that the next words will be, "stop everything, she's having a seizure. What should we do?"

    So no, you're not alone! And google is also our friend a foe, especially on the seizure front.

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  7. ll8uijm
    That's from Addison. ;)
    Forgot to say...I love having a direct email! Our new ped gave me his, and it has made life so much easier!

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  8. Pneumonia.

    Other diagnosis, including leukemia (which we're at high risk for), car accidents, plane crashes, falling with a fatal head bump, choking, getting lost and drowning, stranger abduction... all of these things I have considered, mentally walked myself through, and either take steps to minimize or can't do a thing about so won't fret over. But pneumonia is panic-inducing.

    Also, the things that I have NOT yet considered. Because I'm always getting hit out of left field. Giving due consideration to what COULD go wrong is the equivalent to rubbing a bunny foot. A pre-emptive de-hexing, if you will.

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  9. Yes, I've been really struggling with these types of issues. I think mine stem from the fact that I had a very high risk pregnancy - dimo twins and was constantly monitored with weekly ultrasounds, hasd suspected twin-to-twin transfusion, had twice weekly nst tests, was hospitalized at 29 weeks with one twin's head in the birth canal. When I was hospitalized I was given a test to see if I was likely to give birth in 2 weeks and it came back positive. After all of that, I made it to 35 weeks, 2 days and gave birth to healthy 5+ pound twin boys. Then at 5 days of life, while in the NICU, Rowan became ill with suspected H1N1 virus resulting in severe brain damage leading to his CP. So, everything I feared happened but not in the way I feared, resulting in me having severe anxiety. Also, my father has suffered from severe anxiety as well, almost cripling anxiety. I'm not sure if he related the 2 but his anxiety started when Rowan became ill.

    Julie Lewin

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  10. I am freaked out by seizures and my son has NEVER HAD ONE.

    My husband had epilepsy as a child, but hasn't had a seizure since he was 7 or 8 and was taken off meds at 10. My brother had seizures in his 20s, after he was diagnosed with a brain tumor.

    So any time my son goes a little quiet for a second, or has a giggle fit, or whatever, I can't help but go there.

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  11. Stephanie PinksterMarch 7, 2011 at 12:34 PM

    Unfortunately, seizures don't bother me anymore. We've experienced such a plethora of them, I've become numb. It does help that my husband is a paramedic and has everything on hand to start an IV to stop it if needed (which has been the case until about a year ago). I think one reason I do t mind them so much is there is no doubt in my mind what's happening to Collin. His seizures are the one medical issue that requires no guess work.

    My boogey man is Pneumonia as well. Like earlier posters have commented, it's something that tales the lives of kids with severe CP. We've never had lung issues, but I still fear that with everything else Collin has overcome, it would be something so seemingly simple that could take him.

    My other worst fear are the "What If's". Collin is 7 and you'd think by now I'd be able to get those out of my head, but they just never seem to go away. What if I'd stretched him more, what if I'd have noticed the seizures before he was 2 months old, what if I don't stretch him today. What if.......

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  12. Yeah. Seizures. PICU. Status Seizure history here w/ my daughter and the idea of another makes my blood run cold. So, those weirdnesses that are usually just kid weirdness (laughing in sleep, weird sleep or not sleep behavior, staring, zoning out.....etc etc etc)....yeah, I sit up and take notice. Some days, I google hunt to torture myself in the name phobia...erp: research.
    Sigh.
    parenting is not for sissies.

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  13. I hate seizures! My daughter is three and we have seen relatively few of them (thankfully). Whenever I do see a seizure, it really does bring out the irrational side of me very quickly. As a matter of fact, she had 3 last week and I was in a funk about it. UGH!

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  14. I'm so thankful that Max is OK, but I completely understand your fears. There isn't any one thing in particular that I worry about. Unfortunately, I tend to worry about EVERYTHING. If my son's WBC is a little high, I wonder, could it mean leukemia? If he's more constipated or tired than usual, then I'm convinced that his thyroid has gone done the crapper. He has diarrhea? Maybe it's the flu or could it be celiac disease??? I worry that his cardiac meds will no longer work & that he'll need repeat open heart surgery. ETC, ETC, ETC. I think that once your child has experienced a serious health problem, you can no longer be a parent who lives in that blissful state where you say, "oh, that would NEVER happen to my kid". Are my fears irrational? Probably, but I doubt they'll go away anytime soon.....

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  15. My fears are so small in comparison and mostly revolve around things like social rejection and acceptance in the classroom and community, and what the future holds. I can't imagine the terror and hypervigilance that would have to accompany a seizure diagnosis.

    You're so damn brave!! Your kids are lucky to have you!

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  16. ellen, there is nothing irrational about being unnerved by the prospect of a seizure.

    fletcher didn't begin having them until he was 3.5 (thought we were out of the "danger zone," ha.). After his first one (a doozey, last mother's day, that lasted probably about 30 MINUTES) I had my first ever convo with a neuro who promply told me that F's EEG was spaghetti and he has a severe seizure disorder... talk about zero to sixty. He had only had one seizure for pete's sake, and now they are telling me he most likely has intractable epilepsy.

    so, not only am i spooked by seizures, but i am spooked by the idea that at any second my son is going to start having 100's of them per day and start losing all the abilities he has worked so hard to gain these past 4 years... thanks alot, neuro.

    ps, he has only had two more since the dx... but each one has been 10 minutes at least and only stopped by rescue meds. ugh.

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  17. Ashley's seizures still scare the willies out of us, as does his sleep apnea - he breathes 4 times then pauses. You find yourself holding your breath with him.
    He has tics and petit mals too and you do wonder what damage is being done.
    He yelps rhymically when he actually has a seizure and we leap to action stations, noting the start time, watching the limbs affected, no time to be scared.

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  18. I hate epilepsy with a passion. Of all the things with which my daughter lives this is the one I fear and dread the most. Even though she is medicated and has a great neurologist and her seizures now are usually short lived I hate them no hate that she has a run of them and has to have her meds increased and I hate that I am irrational about them and fear the worst.

    I'm glad Max is just laughing in his sleep. Good to know he is happy even when he's asleep.

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  19. Ellen, as usual, you are invading my thoughts, and I see that my boogeyman likes to hang out with many of you too :) Maddy had her first seizure when she was 6 hours old and 21 months later we "think" we have found the correct combo of meds to control them (Trileptal and Keppra). She will be 2 next month and I still flinch and send myself into a panic if she doesn't quickly respond when we call her name or makes any unusual moves. She has complex partial seizures, so I always worry that I am missing something. It was, however, my "irrational" fears that helped her neurologist discover the type of seizures she is having. So, I guess sometimes being a crazy momma is not a bad thing.

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  20. I'm with you on the seizures! In fact, I was starting to panic as I read your post because Malayna will occasionally laugh in her sleep. So I was rather relieved that your neuro was not concerned. Malayna has some facial "tics" as well. Her speech therapist was recently concerned about some facial grimacing she was doing during a session and I went into panic mode but decided it's just part of the CP. I'm glad to know I'm not alone on this one!

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  21. Joint pain is my boogeyman. I have rheumatoid arthritis and a couple of other autoimmune diseases, and while I would prefer neither child develop those, it's juvenile rheumatoid arthritis that scares me. Whenever the kids seem stiff or complain about a joint hurting, there's a place in me that forgets all about Jesus for a moment and just freaks out.

    Oh, that and MRSA. Every little red spot on my skin freaks me out because each bout with MRSA usually means major setbacks in my health stuff.

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  22. Boogeymen can be real, unfortunately! My daughter has Lennox-Gastaut Syndrome, so she seizes all day long, every day. Things that would look like just a weird thing on another kid, are a seizure. It makes me freak every time she twitches or burps or makes a weird noise. And she DOES have gelastic seizures. Imagine the freaking out I do when she's in the living room laughing at the TV, and it's not turned on. Ugh!

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  23. Ellen,

    I love the way you inject humor into your post. This one had me laughing, as usual.

    This post touches on a serious reality for parents of kids with special needs. Many of them develop post-traumatic stress disorder (PTSD) because of the prolonged and traumatic events associated with their kids' conditions. A post at my DiffferentDream.com website links to a NYT article about PTSD in parents of NICU babies. It might be of interest to some of your readers: http://www.differentdream.com/2009/09/ptsd-and-nicu-parents-what-about-you/

    PTSD is also prevalent in children who experience invasive medical treatment. Several posts at DifferentDream.com address the subject. Just type "PTSD" in the search box to find them.

    If any of your readers suspect they or their children suffer from PTSD, I'd be happy to talk to them about symptoms, diagnosis, and treatment.

    Jolene Philo

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  24. I freak out when I see my 5yr old(today!!) do simple everyday kid things like swing on his stomach or lean over things on his stomach while trying to climb up stuff.. He has a pacemaker in his abdomen & has broken the lead TWICE now even though I watch him like a hawk. So I scream like a mad woman and everyone at the park thinks I'm crazy but it terrifies me to think that something so simple could land us back in the hospital for yet another surgery.

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  25. Laughing in your sleep is a sign of seizure activity- where did you hear that from? I never knew laughing in your sleep is a sign of seizure activity. And, I have a daughter who has frequent minor seizures.

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  26. I wish seizures scare me yet they dont. Yeah Abby has seizures- so what. I'm more worried about Abby's future. Erin I disagree- there IS something irrational about being scared by minor seizures. And, minor seizures dont cause regression.

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Thanks for sharing!