02 Jan When your child is diagnosed with Juvenile Myoclonic Epilepsy and you’re a basket case
The first time I witnessed my oldest child having a seizure was almost exactly five years after he was diagnosed with juvenile myoclonic epilepsy at the age of 15 years old. I had always felt guilty for not being there when he had a seizure, it just seemed somehow wrong that his mother had managed to be elsewhere every time he went through this very traumatic event. But guilt is by far not unfamiliar territory to my maternal existence.
Especially when it comes to Ben, born with the adorable tight red curls and the sweet little lamb cry, stealing my heart the moment I saw him. I was almost 25 years old when I had him and as it turns out was not entirely prepared for the tremendous responsibility of another human being’s survival. A single mother, insecure and anxious by nature, I was ill equipped to deal with the various health and safety crises that my firstborn exposed me to over the years of his childhood. From the alarmingly shrill and loud cries of a newborn with tummy issues, which sent me and baby to the local emergency room dragging my friend and birth coach Kim along for support, to the truly scary and life threatening diagnosis we were given in January 2011.
By the time he had started kindergarten we had dealt with asthma, a peanut allergy and the first of several head injuries he would have before the end of adolescence. I remember many nerve wracking drives to the Montreal Children’s Hospital, alone with my wheezing child in the back seat, struggling to breathe. I remember a panicked phone call to my friend and housemate Julie, who also had a peanut allergy, when Ben told me his mouth felt “funny” after eating a peanut butter cookie that I had lovingly made just for him. And I remember going to get his pyjamas and running back into the bathroom after hearing a bang and a yell, to the horror of seeing my child standing in the bathtub with blood pouring down his face and body, grotesquely colouring the bath water. He was holding the soap dish which had previously been cemented to the tile wall before he slammed it into his forehead when he decided to pull on it to see if he was strong enough to take it off the wall. Don’t judge him, he was only three years old.
After that there was another bloody head injury, a couple of bullying incidents and some pretty serious preteen and teen issues. Warranted or not, it feels like I was always living in fear of something happening to my precious boy.
Epilepsy made it real. In the fall of 2010 while having a fairly serious discussion with Ben, the subject of which I fail to recall, he made a sudden upper body movement, like a spasm or a jerk, and he said it was something that happened to him sometimes lately when he was tired or stressed.
When I look back I see this as being the moment that our lives changed, although we were blissfully unaware of it at the time. Was this something I would have remembered had it not been for what came soon after? You see, that spasm was a myoclonic seizure, the diagnostic benchmark of JME.
On December 26, 2010, my husband Jonathan and I drove home from London, Ontario where we had been visiting family for Christmas, but Ben decided to come back to Montreal with my parents the following day. As we were having lunch in Cobourg, which is about halfway home, I missed a call from my brother-in-law Eric and when I called in for my voicemail I listened to a message that I am not likely to ever forget.
“Ben has had a seizure. 911 has been called and paramedics are on their way. I will try Jonathan’s cellphone now.”
As I finished listening to the message, Jonathan’s phone was ringing and I sat watching him lis- ten to a more detailed version of what I had just heard, holding my breath, on the verge of a complete meltdown and feeling like I was in a nightmare, that this couldn’t really be happening.
We drove back to London and went straight to the hospital. We didn’t end up getting any real answers that night, except the results of a scan indicating that there was no brain tumour or in- jury present that could have been the cause of Ben’s seizure, which was good. Not having determined a possible cause, we were left with the warning that another seizure could happen at any time but with no way of knowing if or when it might happen nor what could be done to pre- vent it from happening, which wasn’t so good.
Another seizure did happen, later that week one morning soon after I left for work. Luckily Ben’s friend Dave had slept over and was with him when it happened and called me to tell me he thought Ben had had a seizure. I rushed back home and then headed over to the children’s walk-in with the two teenage boys in tow, where our paediatrician gave Ben a referral to a neu- rologist and suggested going to the emergency at the Montreal Children’s Hospital with the re- ferral.
When something like this happens and your world is turned upside down it seems so odd to see the rest of the population carrying on like nothing was different.
So when I took Ben to the emergency at the Children’s, presented the referral to the doctor on call and was told that I had to call neurology and get Ben on a waiting list I was astonished. In the meantime, how were we supposed to go about our daily business when this horrific event could happen again at any- time? How could I stop this from happening to my child? I was terrified and desperate. My first taste of how ruthlessly inefficient our healthcare system can be.
Ultimately we were lucky because we were able to have Ben seen by a neurologist within two weeks, which passed without any seizures. Another CT scan, an EEG, an MRI and a blood test later, we were told that Ben had juvenile myoclonic epilepsy, a type of epilepsy that is usually well controlled with medication but that he would most likely have for the rest of his life. Individ- uals with JME typically have absence seizures in early to mid childhood, during which the child may appear to be daydreaming. Myoclonic jerks may begin one to nine years later and are usually soon followed by tonic-clonic, or generalized, seizures. I realize that Ben most likely had absence seizures when he was younger and I try so hard to remember an incident that may have been an absence seizure, wishing I had noticed that something was not right. Not that it would have done Ben any good if I had, but I never miss an opportunity to feel guilty!
Speaking of guilt, as I already mentioned, my son suffered several seizures before the first one that I saw. One time I came home from work to see the answering machine flashing but chose to start supper and clean the kitchen up a bit before listening to the message. The message was from Ben’s coworker at IGA letting me know that he had been sent by ambulance to the hospital. Since his coworker couldn’t be sure which hospital Ben was sent to, I went on a bit of a goose chase before calling the Children’s from the parking lot of the Lakeshore General and, after being put on hold and transferred to different people three times, I finally knew where to find my injured boy. So I hightailed it down to the Children’s and got the whole story.
He had been riding his friend’s bike to work, sans helmet of course, when he had a seizure and fell, the left side of his face breaking his fall. A kind woman driving by stopped, noticed his IGA uniform, put Ben and the bike in her car and brought him to IGA hoping someone who knew him could help. She made sure an ambulance was called, left the bike with the personnel at the store and left. Ben was actually very lucky, considering how much worse it could have been. I am haunted by the thought of what would have happened to him had he been on a boulevard instead of the small residential street he was on. Even as it happened his injuries could have been so much worse.
Although JME is usually very well controlled with medication, for various reasons it was difficult for Ben to adapt and consistently take his medication as prescribed, so he did have seizures occasionally. But until that fateful Sunday I had been MIA every time. On December 20, 2015, I went down to Ben’s room in the basement to talk to him about something (again I fail to recall what it was about). When I saw the unmistakable jerk happen a couple of times I realized he was about to have a seizure. Heart racing, I asked him to lie down on his bed and I called up to Jonathan asking him to bring the phone downstairs. And then I sat next to Ben on his bed and watched him have a seizure. Also I called 911.
I can’t even begin to describe how it made me feel to see that happen to my child. You’re supposed to time the seizure in case it lasts more than five minutes and if it does, you should call an ambulance. Doesn’t matter because this is how it went down:
1) I called an ambulance after I think, 3 seconds;
2) Those 3 seconds felt like 30 minutes; and
3) ARE YOU FREAKING KIDDING ME I’M GONNA WAIT 5 MINUTES WATCHING THIS BE-
FORE CALLING AN AMBULANCE? Oh hell no.
All those years I spent wishing I had been there for him when he had a seizure. You know what they say, be careful what you wish for because once you see your child having a seizure you can never un-see that.
Maybe that’s not exactly what they say but it certainly is on point for me. I know all too well that I can never un-see that. In fact, I re-see it over and over again and every time it’s like an assault on my mind and my heart, battered by the image that I can’t stop conjur- ing up in my head. In case you’re wondering, I’m well aware of my obsessive nature, it goes along with the aforementioned anxiety and insecurity.
Since my first seizure attendance there have been many more; 2016 was a particularly difficult year. It occurs to me how living through this has changed me, how my reaction to crisis, at least that related to seizures, has changed. And that is NOT to say it’s any less traumatic to see a seizure or its aftermath. However, I never would have thought that coming home from work to a bathroom so covered in blood it looked like a set from The Shining wouldn’t have sent me into immediate cardiac arrest. But when this happened I took a deep breath, wondering if my babysitter had seen this and hoping my two young children had not, and quietly opened Ben’s bedroom door to assess his condition and determine if he needed immediate medical attention.
There was another time when I slept over at my mother’s one night and Jonathan called me on my cell at 1am to tell me that Ben was taken to the hospital after having a seizure while out at a bar. Instead of losing my shit, I quietly got dressed, then I sat on my mother’s sofa making calls to different hospitals trying once again to find my injured boy. When I finally did, I headed out at almost 2 in the morning to take care of him.
Since this epilepsy thing became Ben’s reality, he has handled it all with such grace and courage and I am so very proud of him. Ben has not always made the best choices and there have been situations in his life that I know he could have handled better. But seeing how he faces this kind of adversity shows me his true strength of character, never feeling sorry for him- self, determined to carry on and not let it stop him from living his life and pursuing his dreams. For that I am so grateful.
I’ve seen a few seizures now and although each one leaves me with a memory that almost breaks me every time it pops up in my mind’s eye, I believe that I have come a long way on the path to acceptance of this reality. The worst is always the minutes, hours and sometimes days following a seizure when my psyche is returned to that high alert status and I fear almost con- stantly the next one. But after the dust settles and a few seizureless days pass, the fear no longer preoccupies almost every waking moment.
There are still times when my anxiety is heightened around Ben; like when he seems tired or otherwise out of sorts and I begin to worry that a seizure may be imminent, and this can be tax- ing – on myself, on Ben and on our relationship. I am learning to try to assess the situation without panic so that I can respond appropriately. Usually I come to realize that it’s probably fine, there is no imminent seizure. But JUST in case a seizure is imminent, I need to remind myself that I most likely can’t stop it, so I focus on what I can do: keep him as safe as possible and really be there for him if it does happen. I really feel better having a plan. You know, be prepared for all eventualities.
I know I have some work to do in learning how to handle emergencies. But I am proud of the progress I’ve made since the days of running to the emergency room with a colicky baby.
Since those days I have had two more little humans whose survival largely depends on my ability to get my shit together and step up when scary things happen. And I believe that I have had some success in developing that ability – anxious, insecure and obsessive nature and all…
In fact to be honest, today I just might have the constitution to wait out those five minutes.