In elementary school there was a kid that was a grade or two above who had epilepsy. I remember so clearly a group gathered around him one day on the playground, then slowly dispersing with horrified looks on their faces. He was being helped off of the ground by a teacher. The kids who saw it were describing his seizure to everyone, saying he was thrashing around, and teachers kept repeating “don’t let him swallow his tongue”. This was my only “experience” with the subject. Except for that image being reinforced by movies. So, when Marcia sent me her son’s story, I assumed that’s what she was talking about when I saw her first line.
Epilepsy is more than Hollywood
By Marcia Morales
Life as a single mother with a teenager, a seven-year old, a five-year old, and twin three-year olds can be full of life changing moments. Most changes remind me of the blessings and youthful hearts children have. Other moments can turn our world upside down in a split second.
In April of 2014, there was no way I would have foreseen the events the day would unfold. The three youngest began running across the wood floor in their socks, sliding to the wall. They thought it was a funny race. I told them to stop before someone got hurt, which is a common phrase to say to children. Again, they raced across the floor. Halfway across, I shouted, “stop! Before someone gets h-…”
I did not finish that phrase. My youngest son, three years old, slipped as he slid, and landed on his back, hitting his head on the floor. For the first second, I thought it was exactly what I warned. Then I saw him stiffen, and his eyes locked all the way to the side. His lips started turning blue, and he was non-responsive. I had absolutely no idea what happened, but my gut told me I would need help. I told my other children to bring me my phone. I called 911. My focus was completely on getting him to breathe.
Those eyes. They were locked to the side as if they could not go any further or something inside his head would snap. I could calmly take care of a broken limb, or stop bleeding. I can not see or bandage a brain. It was the strangest and scariest injury I had seen. I had no idea how to loosen his stiff leg or arm. I had no idea how to get his lips to be pink again. I felt so out of control of the situation.
The ambulance came. They told me it was a seizure, and that it still was happening while they were there. They were extremely concerned as they were trying to secure him in a bed to transport him safely. By the time he came out of his seizure, fifteen minutes had passed. In the ambulance afterwards, he stared wide-eyed in the distance. He would look around as though he was in shock and scared. I talked to him, but it was as though he had no idea what was going on. He could not speak. His tongue stuck out of his mouth a bit almost the entire time. He threw up as we approached the hospital.
He did not actually attempt to speak for almost two hours. Then he had trouble using his voice. He strained to speak, and his words were not words. He spoke in a strained baby talk. Time went by. He suddenly had a huge thirst. He drank juice, and a few crackers. Then he fell asleep. He slept for about 15 hours, closely monitored at home once we got there. The next day he was still weak, but he was back to himself.
I had a lot of learning to do. I watched him every second. I checked on him while he slept. I never wanted that to happen again. As much as I wanted to believe it was a single event, I didn’t let my guard down.
A few weeks later, I heard him cough in his bed. It was one cough that ended strangely. I went to check on him, and it was happening again. I called 911. The ambulance came. This time it only lasted about 8 minutes. The recovery time was a little shorter, but very similar.
A few weeks after that, it happened again. It was a completely different scenario again, but his reactions and seizure were the same. It lasted about 5 minutes, and recovery was slightly shorter again.
Children’s Hospital is amazing. They have many doctors and staff, who want to learn every detail, and also explain everything to the parents. They are receptive to questions, and try to explain to be understood. After many visits, EEG, and CT SCANS, we realized he was having a few types of seizures. I did not realize some of his strange behaviors were seizures. It did not fit the typical seizure shown on TV and movies. They taught me how to know the difference between seizures and distracted staring. There are actually 42 types of seizures.
I was able to get an advocate for him through the Epilepsy Foundation. They helped me with filling out information for the school, and to create a school health action plan. Unfortunately I had trouble with one of his teachers who refused to acknowledge his “lesser” seizures as existing or being real. The advocate stepped in to help me with that issue as well.
Once the shock and chaos settled within the first couple months, we had emergency medicine and an action plan for him. Knowing what to do and how to react are huge stress relievers. It is still scary every time, but knowing how to react to each event makes it less of a panic.
His next big seizure was at home. As soon as it began, I caught him on his way down to the floor. I gently let him land. I checked the time. The other children were ready for what I needed. At five minutes, I was going to give him his emergency medicine, and call an ambulance. This one ended at four minutes. During his recovery (the postictal stage), I called the doctor’s after hours line. I was told that I did not have to bring him all the way to Children’s Hospital that time. They instructed me to go to my nearest hospital just to get his vitals checked. No problem.
Actually, it was a problem. On the way to the hospital, he had another seizure. I could only see him in the rearview mirror and at stop lights. I did not want to pull to the side of the road and waste time when I could just get to the hospital 4 blocks away. I checked the time, and watched the usual symptoms happen. It was about 3 minutes this time. He came out of it just as we arrived. Since it was under 5 minutes, it would be good to have vitals checked immediately. I went inside the local hospital.
The hospital quickly checked him in, and we went back to a room where he was postictal from his second seizure in a half an hour. As the nurse and I were discussing all the events, he was relaxing in a bed next to us with his eyes closed. Well, that was until he had another seizure in front of us. The doctor rushed in. Three seizures in less than an hour.
They moved his bed to the big room across from the desks so he could be monitored more closely. They had him attached to all kinds of monitors, and had given him medicines. He was going to be transported to Children’s Hospital. He was emotional. He was weak. He began projectile vomiting. He was a mess. I wanted to cry watching him suffer this way.
Transport came. It was a calm ride. Children’s Hospital was much more relaxed than the local hospital. They would react quickly, but not give off any panic alarms to the children. My son was still a mess. He was going in and out of consciousness. He was throwing up. He was having more seizures. We had to wait out the medicines the hospital gave him. Finally, it was calm again around 3am. The hospital gave him an IV of Keppra, and a prescription. It is a typical medicine for seizures. As we were leaving, my son could not even walk. He was dizzy. They said sometimes it is a side effect.
Two days later I was at his primary doctor for follow up in general. My son had spent the weekend going between screaming flailing rage, to unconscious, to weak, exhausted, and emotional. It was miserable for him. He could not walk because he was too dizzy. I spent those few days carrying him around or trying to keep him safe from hurting himself. His doctor called the neurology department to get an appointment immediately. He said he could not just send us home like that.
We spent the next week adjusting medications. The rage did not stop. The ups and downs were extreme. Finally we were admitted to the hospital after another large seizure. He was there for several days. He was in the room across from the nurses’ desk. I constantly kept his raging inside his bed. He was flailing so hard that he would almost jump out of bed. He was tangling his IVs so badly that eventually they had to disconnect them before he ripped them from his arms. I had to get back up often to keep him safe. It would be me and two or three nurses trying to calm him, keep him from raging out of the bed. We both were exhausted. Both he and I ended up with hernias after that week. I had never seen my calm gentle boy act like that. It was like a dramatic movie about a possessed child.
They finally knocked him out with something so they could do an MRI. After the MRI, they decided to switch his medicine. The Keppra had completely transformed him over the last ten days. He had cluster seizures all day, every day, with rage and emotions. The new medicine was better. He only had about 6-14 seizures each week that lasted less than 3 minutes. We scheduled a Video EEG for the future. As the summer went by (this was only June) his seizures calmed down a bit. His new medicine was better, but still not the one for him. I learned much more about seizures that I never knew existed. He switched medicines again, and he had one seizure every 5 days. It was a relief, but the doctors want his seizures gone. Ok. I can agree.
The day of the VEEG came. As we were about to leave for the hospital, he had a seizure. I wished it would have held off until we were at the hospital. We checked into his room. They put his EEG cap on his head. He is a calm patient usually. He let them put it on with no problem. They said many children need a special harness to keep them from freaking out while they attach each wire. Luckily, my son is patient. Then the cap is attached by long wires to the wall behind his bed. He could barely reach the bathroom. We were scheduled for 5 days.
The procedure of the EEG is strange. The nurses and doctors did not seem on the same page with telling me when I should push the button. As he was monitored, I was to push the button for any unusual behaviors. The doctors thought I was pushing the button when I saw a definite seizure. They began doubting the seizures after all this time because the button was pushed with no seizure. I had to explain I saw no seizures during that time, and then they seemed confused. The doctor in charge of the team of 15 acted as though she had an agenda from the first day to prove me wrong. It was very strange. Everything to this point had made sense. Now she was ready to throw away all diagnoses and all symptoms of the last 5 months because she thought I was making it up. I wondered if I was in the twilight zone.
I was frustrated, about to cry. I had not left his side in months. I had not left his side at the hospital either. Finally I had someone to sit with him for a few minutes so I could get a coffee from the food court. It was the first time I left the room in three days. I happened to run into one of the doctors from the stay we had when he was raging and had the MRI. She was very concerned. I think she reminded the doctors about previous witnessed events.
The final meeting of the team was interesting. I was exhausted and frustrated. I was not about to have this one doctor tell me it was all my imagination. I was ready. She began her summary. She brought up the fact that I did not agree with her ideas. She also tried to put words in my mouth and tell me I had claims that I never did.
That was the point I addressed them all. I told them all that my son did not have a seizure since we had arrived, and explained to them what the nurses told me. I had to explain to the entire team instead of just her this time. I had my laptop with me. I said I wanted to show them what his typical seizures looked like since he was not having one on video at the hospital. She stopped me, and told me it was unnecessary and irrelevant. I was about to explode, but one of the doctors spoke up. He said, “play it. I want to see it.” So I did. While the video played, I narrated my son’s specific symptoms along with the child on the video. I explained the differences and similarities. Then the doctors started asking questions that were relevant and productive. The lead doctor was not happy. But I was getting answers finally after 5 days of defending myself.
The doctor that asked me to play it requested to be his new neurologist. I said perfect. We were in the middle of changing from the downtown branch to the local branch. He said he would come back to discuss things after the team finished. The lead doctor recognized that she and I had poor communication, and she handed it over to the team to finish. The new doctor came back and discussed medicines and gave me a ton more information to help us at home. The new doctor is still my son’s doctor, and his progress has been fantastic!
My son has had many seizures since the VEEG. Some were large and frightening, some were smaller and not as intense. The most difficult part once a parent learns about seizures and epilepsy enough to react calmly, is defending it to others or informing others so they understand.
Seizures are not as they are in Hollywood. There are 42 types of seizures. Not all of them are obvious, even to people who know seizures. They are not stereotypical. They vary wide with the types and symptoms. I recall times I saw seizures in other people, but I had no idea that is what happened because I was ignorant. The person who has a seizure usually does not remember it. They can often recall the aura beforehand, and the familiar feeling in postictal state, but the actual seizure is a memory glitch. People even have walking seizures.
The seizures are never less frightening. They are usually heart wrenching. The more I learn of them, the more he experiences, the more controlled it seems to be. We try to function as other families, but we are prepared at all times with medicine, caution, and watchful eyes. I hope one day to look back and be able to say he hasn’t had a seizure in 20, 30, 40 years or more. But there is always a voice in the back of my head reminding me that it could still happen at any moment, time does not make it end. Luckily, we have had much luck experimenting with multiple medications, doctor visits, learning, and researching. His life is filled with joy and happiness. When he has a seizure, we can look forward to the possibilities of a speedy postictal recovery and more time between seizures.
I’m learning so much as I’ve done this Living With series. I knew I wanted to expose the challenges behind closed doors. But, I’m also seeing how much even the things that are out in the open can be so misunderstood, undiagnosed, or even completely dismissed by others. I hope that if nothing else, it can give comfort to those struggling. There are others who “get” it.
Here are a few links that I encourage you to check out: