Guarding from Epilepsy's Harm: The Dangers With Which We Live

Awesome had a convulsive seizure last Thursday morning before she woke.  It was her first ever tonic-clonic while sleeping.  I was in the next room (the bathroom) and heard a loud choking sound.  I called out.  She didn't answer.  And then I heard the tell-tale sounds of a convulsive seizure.  By the time I got there, she was in the full throes of the tonic-clonic.  Face down in bed with her head pushed into the mattress, hyper-salivating.  Despite the fact that her seizure lasted nearly 2 minutes, her Empatica Embrace seizure detection watch did not send an alert to our phones.  It's the first one of Awesome's big seizures that the Empatica Embrace hasn't detected.  That it didn't detect the seizure is both disappointing and a little scary.  As helpful as the Empatica Embrace is, it's not dependable enough to trust to protect Awesome's life.  I worry what might have happened had I not been nearby and heard the sounds of a seizure.

In worried mom mode I found myself thinking about the two cases I've recently heard about through the online epilepsy support community.  In both cases teens had had seizures in the early morning alone in their beds--and were found dead, having suffocated because they were in a breathing-compromised position.  And so, I marked it in my mind to never be far from Awesome while she's sleeping; and to always remember to listen attentively.  It's not that I hadn't decided to do exactly these things before or that I didn't think doing these things weren't important before.  But now they seemed doubly important.  Our own experience of a similarly dangerous situation made it all the more imperative.  The dangers suddenly seemed uncomfortably real and too close to home.  And so I again ratcheted up of our hyper-vigilance quotient. 

We'd already recently had to ratchet up both our evening hyper-vigilance and the bathroom related hyper-vigilance quotients based on the seizure before this last one.  With that next to the last seizure,  Awesome had excused herself from the dinner table to go to the bathroom while the rest of us lingered at the table talking.  Not more than five minutes later the Empatica Embrace phone alerts sounded.  Because Awesome hadn't had an evening seizure for a good two years, I presumed it was a false alarm.  And so I calmly walked to the bathroom expecting to open the door and find Awesome sitting with headphones on, working on her writing on her laptop, and totally oblivious--and then apologetic (this is quintessential Aweseome)--to the fact that her watch was sounding an alarm.  Instead, I opened the door to find Awesome actively seizing, wedged awkwardly against the wall of a  bathroom alcove so that it looked like her neck might be broken....  The sight was a totally unexpected one--at once both shocking, and frightening.  Thankfully, Awesome's neck was fine despite the bizarre positioning, and though she did have a bump on her head from landing hard against the tiled bathroom wall, she hadn't sustained a concussion.  Another near miss on two counts.


There have been so many near-misses lately.  Situations in which Awesome could have been seriously or even fatally injured because of a seizure--and yet wasn't.  Situations in which she came through merely with a minor bump or cut.  I'm not sure I believe in Guardian Angels.  It's not that I don't believe they could be real.  Just that I don't particularly have any reason to believe they are.  But if Guardian Angels are real, Awesome's is very good at his job.  And has been kept very busy.

Lately, Epilepsy seems to be finding new and novel ways to scare us.  Maybe it's because I'd foolishly said something several weeks ago about feeling like I could now take Awesome's seizures more in stride and not feel traumatized or disturbed by them anymore.  And so maybe Epilepsy felt it needed to remedy the situation?  I don't know.

One of the most distressing of Awesome's recent seizures was on Christmas morning this past year.  Awesome was, like most kids are, super excited about Christmas.  So excited that she had trouble going to sleep on Christmas Eve.  And then like many kids do, because she was full of excited anticipation, she woke early on Christmas morning.  Going to bed late and getting up early left her sleep-deprived, and sleep deprivation is a common seizure trigger.  In fact, it's such a well known and common seizure trigger that, in children who don't have frequent enough seizures, neurologists--hoping to catch a seizure on EEG--will often ask parents to make a child sleep-deprived by keeping the child up late and them getting up early in order to make the child more likely to have a seizure on the day of the EEG.

So anyway,  on Christmas morning Awesome woke early and insisted on getting dressed immediately while we waited for some of her brothers to get out of bed and for others to arrive from out of town.  She wanted to be ready to start the festivities the minute everyone arrived.  And so once dressed, while waiting, she sat on our bed looking at her smartphone while I was in the bathroom getting dressed.  Suddenly,  I heard two loud crashes.  The first one was the loud sound of glass breaking. And the second one, before I could even call out to Awesome, was the thud of something big falling to the ground.  I called out to Awesome, but she didn't answer.

Rushing into the room, I stopped short when I saw the scene before me.  The entire bedroom floor was covered in shards of broken glass, big and small, mixed with water.  Awesome herself, actively seizing, was lying on top of the shards of glass.  Wedged between the bed and the nightstand,  she was tangled up in the legs of the nightstand with her chin hooked around one of the legs.  She'd apparently been sitting on the edge of the bed when the seizure hit, and as she started seizing, her flailing arm had knocked into the heavy glass (full of water) on the nightstand, causing it to fall to the floor, shattering into hundreds of shards, big and small.  And then, because she was sitting close to the edge of the bed and her seizures usually involve a torquing of her head, neck, and trunk sharply to one side--throwing off her center of balance--she fell off the bed, onto the glass shard covered floor.

It was hard to even know how to rescue Awesome from the situation.  I thought about how each convulsion, as it caused physical movement, could be driving the glass shards further into various parts of her body.  She couldn't be left there.  Given Awesome's history we couldn't be sure that her seizure would end on its own; we ought to be administering CBD oil as a rescue measure as soon as possible.  But by moving her and then putting her down in a different position, we risked driving still other shards of glass into other parts of her body.  Moving Awesome off the floor wouldn't be easy, not just because of the glass shards but because, while she was unconscious and convulsing, she was 100 pounds of moving dead-weight, incapable of cooperating by tensing and relaxing parts of her body to make the moving easier.  From past experience, I knew how hard it was to move her in this state.  It requires picking her up by grasping her around the trunk and pressing her back up against your chest--another dangerous move to not only Awesome, but the person moving her--in this glass shard covered situation.  The moving would also need to be done in a flawless way.  If one of us slipped and lost our grip, letting Awesome accidentally fall down onto the ground again, we risked re-injuring her on the shards of glass.  As hard as it would be, she simply had to be rescued.  Carefully.  Delicately.  And as soon as possible.

Before we could do anything we had to protect our own feet.  You can't walk into a glass shard covered room in your barefeet unless you want to end up in the ER with someone pulling glass shards from your feet.  And so, everyone, after being called to help, had to retreat to find shoes before anything could happen.

Once we'd all returned appropriately shod, we extricated Awesome from the legs of the nightstand first.  Her brothers and father carefully picked her up--it's not an easy thing to pick up a 100 lb actively seizing child--and before they put her down on the bed they held her in mid-air, only lightly balanced on the bed, while I quickly but gently tried to wipe the scores of glass shards from her cheek, arms, and side before she was put down on the bed.  Wiping off glass shards is a delicate work because you're afraid you'll simply push them into her skin.  Likewise, putting her down again was worrisome for the same reason.  Then I had to wash my hands and inspect them for glass shards before I could administer the rescue dose of CBD into the pocket of the mucus membranes of her mouth.  Thankfully the seizure didn't last long; by the time we'd accomplished all this, the convulsive part of the seizure was over.

 But as I sat there beside Awesome and surveyed the room, I realized just how lucky we'd been.  Not more than 12 inches from where Awesome had fallen, the thick base of the large glass had landed upright; it was a huge dagger-like shard of glass sticking straight up.  Had that piece have landed closer to the bed or Awesome have fallen further away from the bed instead of getting wedged between the nightstand and the bed, she'd have fallen directly on that dagger-like piece of glass.  And had she done so, she'd have been seriously injured.  And if it had stabbed into a vital organ like her liver, a kidney, a main artery, or even her heart, the injuries would have been life-threatening or even fatal.

As I inspected her and carefully tried to wipe the glass shards from her body and clothes, I thanked God that the only injuries I saw were two tiny superficial cuts.  Even in falling onto glass shards Awesome had managed not to get a single splinter of glass stuck into her anywhere.  Had that not been the case, it might have taken hours in the ER to pull minute slivers of glass from her face, arms, etc.  We were very, very fortunate that we weren't spending Christmas morning in an ambulance and/or in the ER....or in emergency surgery.  Instead, Awesome slept for awhile and when she awoke, I--and it was me who did it because of the glass shards still clinging to her clothing--carefully undressed her, helped her into a bathrobe, and we made our way to the shower.  Her brothers, meanwhile, had carefully cleaned up the glass shards in the room using paper towels, brooms, and eventually the vacuum cleaner.  As Awesome brushed her hair after her shower, I rolled the bedclothes and blankets up and headed to the washer with them.  Washing and drying them would rid them of any stray shards of glass from Awesome having lain on them while covered in glass shards.

I try to take away a lesson from every one of Awesome's seizures, whether that lesson is a ratcheting up of our hyper-vigilance quotient or a way of doing things differently, better, or more safely.  The take-away from some are more obvious than from others.  From her Christmas morning seizure,  our take-away was that glass is simply too dangerous--in a house with a child with Epilepsy--for anywhere but the kitchen table.  From now on, Awesome would only be allowed to use metal or plastic cups, not glass ones.  And the rest of us too.  We've since purchased many metal and plastic drinking containers--most with lids to avoid the spills from dropped cups.  A second change is that Awesome, when she sits on the bed, is now encouraged to sit in the middle.  Not near the edge.

It's not until you come so close to serious or life-threatening injuries that you start to think about just how dangerous epilepsy is.  How easy it is to get hurt in the most normal and mundane of everyday circumstances.  For some types of seizures with some kids, epilepsy is a lot like fainting.  Your child is fine one minute and then next minute she is not; suddenly she has no control, no awareness, and she can suddenly be falling, falling, falling.  What's around her when she falls makes all the difference in the world.  Or who is with her, exactly where that person is standing, and how quickly that person reacts can also make a difference.

In the past, Awesome would usually have a simple partial seizure--a warning seizure--before the big seizure--the one that causes her to fall.  Usually, but not always. There have been seizures--the kind she has now--in which Awesome has been standing there fine one minute, chatting away, and then in the next moment she is falling.  One time in particular, one morning Awesome and her father were standing on opposite sides of the kitchen counter talking.  Suddenly Awesome was falling; her father had just enough time to reach across the counter and manage to grab onto a handful of Awesome's clothing as she fell.  His save was enough to slow down her descent.  He began shouting for help, and I arrived to find him, stretched out across the counter, desperately trying to hold on to her.  But before I could get to her, the clothes slipped out of his hand and Awesome fell the remainder of the way to the ground.  But his quick reaction had saved her from injury.  He had successfully broken her fall so that she fell only about a foot--instead of 4 feet--onto the floor.  Seizures and falls can happen in literally the twinkling of an eye.  Look away for a moment, and it's too late.  Which means that hyper-vigilance is a way of life for us and all of those families who have a loved one with intractable epilepsy.

The stories that come through the grape vine about kids who have near misses, who have serious injuries, or who die as a result of epilepsy related injuries or accidents are both numerous and frightening.  To some degree, the kinds of dangers children with epilepsy encounter vary with seizure type.  Children with non-convulsive seizures are often endangered--and aren't rescued early enough--because they don't LOOK like they're seizing.  Children who wander in this state can walk into traffic or into dangerous situations.  In fact, about a year ago, in our community, a child in non-convulsive status epilepticus was found wandering on and near a four lane highway at dusk during rush hour.  She narrowly avoided being hit by a car several times.  Horns were honking at her.  Thankfully, a woman driving on that road recognized that the girl was a child, realized that something was terribly wrong with her and so stopped to help her.  This girl's real life Guardian Angel called an ambulance, followed the ambulance to the ER, and then stayed with the child until her parent could be located.  The child had wandered off from her house unaware and in a seizure state.  Had the woman not have stopped, what might have happened to that child?

Children with Epilepsy die at a rate 5 times that of the general population of children.  Most of those deaths are from injuries that occur because of seizures.

As the parent of a child with epilepsy, living with the threat of serious injury is real and ever present.   And so is living with hyper-vigilance.  It's not optional.  It's required.