Grand Mal: The Big Bad

Literally translated, grand mal means big bad. And that is exactly what our life suddenly became a little over a week ago …

5:30ish on a Monday evening, Dave and I were in the kitchen preparing supper. The Boy had been in the den just off the kitchen watching country music videos on his iPad. We both heard the sound of the iPad hitting the floor, but did not hear the expected sounds of frustration or displeasure that would normally accompany it. What we heard instead was some sort of combination of a growl and a snore. We raced into the den to see what was going on.

Vic was lying on his side on the couch. To me, he seemed to be reaching for the iPad that was lying only inches away on the floor. But something wasn’t quite right with this picture. It took a moment for my brain to process that he was convulsing from head to toe. Oh my god! He is having a seizure! Whether he had started to reach for the iPad, or he simply ended up in that position, I don’t know, but his head was hanging off the side of the couch. Dave knelt down next to him to support his head. Vic was drooling heavily. I stood frozen, not knowing what to do. I hear Dave say, “Go turn off the stove and call 911.”

I grabbed the phone in the kitchen on the way to the stove. When I heard the operator’s voice asking what our emergency was, I hysterically relayed that my 17-year-old son was having a seizure. I tried to answer their questions, repeating to Dave what they were saying, then giving them the information he was providing. I was completely overwhelmed by what was going on. All I could truly focus on was my baby lying on that couch, his little body wracked with movements he could not control. At 6 feet tall and over 250 pounds, I realize that he is anything but little; however, in that moment, all I could see was my “little” boy, my baby. I handed the phone over to Dave.

While Dave was on the phone, the seizing stopped. But he did not wake up. His eyes were closed, he was breathing deeply, snoring. All I could do was sit next to my baby, whispering in his ear that he was okay. Mama was there with him. Dave was there with him. Everything would be just fine. He was such a good boy. Mama loved him. He was going to be okay. Of course he would okay … right? I mean, he had to be okay …

When Dave finished on the phone with the EMTs, who assured us we were doing the right thing and that they were almost here, I called Vic’s father. I’m sure the last thing he expected to hear when I called him as he sat down to eat his supper was, “Vic just had a seizure. The ambulance is on the way.” He arrived moments after the ambulance.

At some point during all of this chaos, Vic opened his eyes and began to stir. He acted like he had been on a bender … glassy eyes, confused, jerky movements. And so profoundly tired. When the ambulance arrived, the EMTs needed to assess him. They attached electrodes to his body to perform an EKG. Normally, this would have been met with intense resistance and resulted in Vic pulling them off. He just sat there, entirely spent, watching vacantly as they did their work. They explained to him everything they were doing: the EKG, the blood pressure cuff, temperature, even a finger prick to check blood sugars. My typically vivacious boy didn’t even flinch. Not a peep. My heart was breaking as it never had before. Finally, I heard him say very quietly, “We fine. We fine.”

Toward the end of their initial assessment, Vic became aware enough of his surroundings that he tried to get up. Dave and the EMTs had to keep pushing him back on the couch until they could finish up. He became agitated, but compared to his usual self, it was an extremely weak attempt. He didn’t have the strength to fight. When they removed the pressure cuff and electrodes, they had him stand up and take a few steps. Again, I was reminded of someone coming off a bender. Exaggerated caution, staggering steps, weaving path. They quickly guided him back to the relative safety of the couch.

As the minutes slowly passed, Vic became more alert. His eyes were less glassy, he was beginning to respond to the people around him. It was now time to take him to the hospital. “Soldiers Memorial Hospital. In Middleton,” was his request. No, buddy. We’re going to Valley Regional Hospital. “Valley Regional Hospital. Kentville. (short pause) Wendy’s!!” The tiny grin on his face as he made that connection made my heart soar!

On the ride to the hospital, he was still lethargic. He casually looked around at everything and eventually became aware of the fact that his feet were strapped to the bed. He made a few very feeble attempts to extract them, but didn’t fuss when he was told to leave the straps alone. Very unusual behaviour for him. The utter panic I had felt when he was having his seizure had abated, but not completely gone. I found myself constantly assessing him, watching for signs that he was okay, looking for things that were different. As we approached the hospital, I was overjoyed when Vic looked at Ben, the EMT, and softly said, “Smiling, please.” My precious boy was coming back!

At the hospital, both Tom and Dave arrived right after we did. We had a bit of a wait to get an examining room as the emergency department was very busy that night. And we waited (and waited and waited) once we were assigned a room, for someone to come in to talk to us. At long last, a medical student arrived, asking questions and informing us that the doctor on call ordered a CT scan and blood work. She said that it is very unusual for someone to have a “first seizure” at his age, and the information gathered thus far didn’t provide an explanation.

That evening, I did what I thought I would never do. I left my baby’s side when he was having tests done. Squeamish by nature, I just could not bear to watch the lab tech go on a fishing expedition searching for a “viable blood vessel” to take his blood for testing. Both Tom and Dave suggested I go for a walk, go outside for some fresh air. I knew he was in good hands with both of them there, so I took their advice. Wracked with guilt for not staying with him, but knowing that I would be of little valuable use to him if I stayed, I put on my coat and went outside.

Feeling useless, I decided I would do what I was capable of. I started making phone calls to those who would be most immediately impacted by that night’s ordeal. I started with his resource teacher. I sent a text message telling her that I needed to talk to her about Vic, could she please call me. She has such a strong connection to The Boy, some days you would think she was the one who gave birth to him! I didn’t want to break this news to her in a text message, and I wanted her to hear it in my voice that he was going to be okay. As I waited for her phone call, I moved on down the list. His EA who travels with him on the bus. His respite worker who would have been picking him up from school the next day.

I went back inside, anxious to be with my boy. By the time I got to his room, he had already gone with his father to have the CT scan done. The lab tech was in his room with another tech who would try once again to get the blood samples they needed. Dave answered the return call from Vic’s resource teacher, who was predictably shaken by our news. He assured her that The Boy was being examined thoroughly and would bounce back with a couple days of rest, she asked us to keep her up to date on “V Man.”

As the evening dragged on, tests were conducted and we waited for the results. Vic kept asking for two things: for a doctor to remove the stint the EMTs had put in his arm in case medication needed to be administered, and supper at Wendy’s. By the time the doctor on call finally came and told us that all test results were normal and we could go home, we missed Wendy’s. But, he was okay with the consolation prize of supper at McDonald’s. If you can consider McDonald’s drive thru at 11 pm supper, that is. Back at home, our exhausted little trooper was asleep almost instantly. It had been quite a night for him. And for us. I didn’t sleep that night, but rather set up camp on that very same couch, which is only a few steps from his bedroom door. I left that door open that night, lest I miss a single movement he made while he slept.

In the days that followed that hellish ordeal, we learned a few things: 1 in 4 people with Autism Spectrum Disorder will, at some point in their lives, develop a seizure disorder. Puberty seems to be a common trigger for the seizures to begin, so it is not uncommon for them to start in the teen years. Also, The Boy’s paternal grandmother and her twin sister had epileptic seizures when they were growing up. The sister takes anti-seizure meds to this day. I’ve been told that epilepsy is inherited, and seems to skip a generation, making Vic predisposed to seizure disorders. A double whammy for the carefree boy who just wants everyone around him to be as happy as he is. Sometimes life seems unfair, and sometimes autism really sucks.

As we wait for an appointment with the seizure clinic in Halifax, where we will hopefully find some answers to the questions that haunt us, we are very vigilant. If he makes a noise, we go check on him. If he is too quiet, we go check on him. If we pass his room while he is in it, we check on him. We find ourselves microscopically assessing every move, every word, searching for signs that we may have missed the last time. Silently waiting for the “next time” that will hopefully never come. We turn everything inside out, looking for clues as to why it happened and how we can prevent it from happening again.

In an instant, in the blink of an eye, your world can turn upside down, irrevocably change. Perspectives morph; what seemed like the centre of your universe only hours ago is now almost irrelevant. Events happen that make you suddenly realize just exactly what is most important to you and remind you to not take anything for granted. We hope this is just an isolated incident with him, but at the same time we brace ourselves for the possibility that this may become our new “normal.” Whatever life has in store for us, we know one thing with absolute certainty. We three are a single unit. What happens to one of us, happens to us all. We will always be there for each other, and we are one another’s universe.