The first time I watched Isa have a gran mal seizure, she was 7 years old. It was the night before the fourth of July and we were still living in Texas. I had just returned from NYC and Isa and Elio, my 5 year old son, were sleeping in my bed with me. It may sound strange to you but my children had just begun sleeping in their own beds regularly. We slept in a family bed when they were younger and as a single mom I think it was just easier to indulge in letting them sleep with me whenever they wanted, which was most nights. Besides, bed time stories were more fun in my queen then they would have been if I had sat on the edge of one of their beds. On this particular night I had missed my kids and was happy to sleep all together in one bed again.
I woke up around 1AM to what felt like a tremor. My first thought was this must be a minor earthquake, I had experienced a few when I lived in San Francisco. I quickly realized it was actually my daughter shaking uncontrollably. I began to shake her gently and say loudly, “Isa, wake up. Are you ok? Wake up baby!” I quickly shifted thoughts again. I had several years of first aide training as a dance teacher and though I had never seen a seizure, I knew this was one. Unfortunately, I had successfully woken up Elio but not Isa. I ran to my phone, then back to the bed and calmed myself. Isa’s eyes were rolling in the back of her head, foam flowing from her mouth, her lips blue and her body contorted, stiff and shaking. I called 911 as I realized Elio had a tremendous nose bleed. I was on the phone with 911, pinching a tissue to my sons nose while rubbing my daughters back calmly reminding her to breathe.
Everything happened so quickly, although it felt like hours. Isa’s seizure ended and the ambulance eventually arrived, our place was so difficult to find. The EMTs spoke to me then tried to wake Isa up but she was unresponsive. I carried her to the ambulance where one EMT pricked her foot to check her blood sugar. Isa finally woke up crying and frightened. Just then my ex husband Eric also arrived and followed us to the hospital taking Elio in his car. The ambulance took us to Dell Children’s and then put us in a room. At the hospital they did a CatScan on Isa but couldn’t find anything. The doctor spoke to us, and then just sent us on our way telling us to follow up with a neurologist. The next day I felt like I was walking through a bad dream and spent most of the time on the phone with doctors and my dad, who isa retired physician. Fortunately we had an amazing pediatrician who got us in to see a neurologist quickly. She set up some appointments for that week and began what has now become one in a series of sleep deprivation tests . Isa had to stay awake till midnight and get up at 6, getting no more then 5 or 6 hours of sleep. I was used to be alone through these types of things as a single mom. I had spent many nights with Elio teething or Isa sick in my arms. I used to enjoy being up alone with them in the middle of the night. It was like the world only existed for us in those moments. This was different though. It was painfully lonely and felt like the world might end any moment.
I got myself together in the morning and took Isa back to the hospital for the tests. First the EEG. They had to attach electrodes to her skull. I can’t remember but there must have been twenty or so. First she had to hyper ventilate, then they put her in front of a strobe light, and finally they let her sleep. They basically were trying to induce a seizure so they could see what type of abnormality was happening in her brain. They didn’t find anything. We went to lunch and I bought Isa a stuffed animal. It was the only thing I could think to do to cheer us both up. Honestly, her spirits were probably better then mine. Then we went back for her MRI. This one was hard. They had to strap Isa onto a bed with a neck brace type of thing to keep her from moving. The MRI machine was incredibly loud and she had to lay in a tunnel and listen to that earth shattering sound.
Isa was certainly incredibly sensitive to sounds, smells and tastes. Isa’s first grade teacher had recognized some of Isa’s sensitivities and also that she had a difficult time in social situations. Ms. Flake said Isa used to walk in circles around the playground but didn’t know how to interact with the kids. Isa had been put in a program for a receptive expressive speech disorder and would start speech therapy the next year. I wasn’t sure how this MRI would go given Isa’s sensitivity but she was so incredibly brave. She could see me in a mirror they had set up by her face but she lay still as a mouse. Then they pulled her out of the machine and gave her a shot with a sort of dye to intensify the quality of the MRI. I think that’s when she began to cry. They put her back in the machine and she sat still again, crying. I hate thinking of that. Her helpless and me unable to go to her even though she was only a few feet away. But Isa endured and the test ended. We saw the neurologist shortly after that. They did not find anything and could not explain the seizure. We decided not to medicate Isa since there was no reason to believe she would have another seizure but I would need to monitor her closely. She always needed to wear a helmet when riding a bike, to be watched closely when swimming, and would start taking showers instead of baths.
I was on pins and needles for months, maybe the whole next year. This was the end of my first year at grad school. Fortunately, it was summer break and so I could be with Isa all the time, but eventually I would have to go back to school. I made it through the next year, and so did Isa and Elio. Everything seemed just fine. When Isa went back to her school and it seemed she had a burst of cognitive development and went from being behind the class in reading to far ahead of the class. Elio began PreK and I went back to the University.
It wasn’t until September of the following year, 14 months later, that I was woken in the middle of the night to a similar sensation. The kids still slept in my bed, although I had gotten more comfortable with having Isa out of site at moments. I imagined that I may have never known she was having a seizure if she wasn’t in the room with me. I knew what this was right away, and so I didn’t wake Elio up. I called 911 and just whispered to Isa while she seized again. My heart felt a searing pain and I held back tears. This time I would stay clam. “Just remember to breathe Isa. It’s ok, I’m here. Just breathe.” Maybe I was reminding myself to breathe. The ambulance arrived after the seizure had ended. Everything went almost exactly the same as before. This time, though, a wonderful neighbor walked past the EMTs and asked me what he could do to help. I am sure he could see I was in shock. He said, “Let me take Elio to sleep at my house.” He picked Elio up and took him away without pause. Daniel had a son Elio’s age and they were friends. So it would just be me in the ambulance this time. The EMTs told me they had never seen someone as calm as me in this type of situation. I remember we chatted about my racing medals. Although I may have seemed calm, I was freaking out on the inside. This all felt like a horrible nightmare. Eric would meet us at the hospital. We spoke to a doctor, everything went just like the last time without any tests. The doctor told us that were was no need to go to the hospital in an ambulance if she had another seizure before we could see her doctor, unless it lasted 20 minutes. We could just wait it out and drive her ourselves. Although I know this is true, it just seems so crazy. If you watch someone having a seizure it sure feels like an emergency, but they are actually ok? I knew this before calling the ambulance this time, but I was caught off guard. I had just begun to let my guard down. It’s honestly just terrifying watching those tiny little earthquakes as they happen. It seems like an emergency in the moment, even though there is nothing to be done but wait it out.
We went back to my place. Eric stayed the night on the couch. I stayed up for a while doing some homework and heard Isa shout after about an hour. She was having a second seizure. I yelled to Eric and he called 911. I told him to hang up, remembering what the doctor said but it was too late. They called right back and had to send an ambulance. I argued with the EMT who told me I might as well take Isa in and start her on medication or I was “just going to have a lot of nights like this one.” This EMT was nothing like the last and I would be stuck with him alone in the ambulance on the ride. As suspected, we got there and there was nothing to be done. They sent us home. I remember going for a long bike ride the next day while Eric stayed with Isa. I had to get out and feel alive for a bit, but I didn’t go far.
We did the same series of tests without the MRI. More sleep deprivation studies and more feeling desperately alone in the middle of the night. This time, although they still found nothing, we decided to begin medication. It was not worth the risk that Isa would have another seizure. The doctor adjusted her dose a little over the next year. I felt Isa shaking in the night a couple of times and was told these would have been gran mal seizures if she wasn’t already on medication.
Another issue that has continually popped up at school is that Isa struggles academically. We have had many evaluations done at this point. The school labeled her as highly functional autistic while the speech therapist says she has a complicated receptive expressive speech disorder. Her old neurologist says this is all connected while her most recent neurologist(who I have fired) wanted to give her ADHD medication when I started talking about the issue. It is another story for another time but I have actually fought the public school system in Texas for neglecting her IEP at one point and won.
Isa was on her medication for 2 and a half years and it was time to ween her off to see what would happen. This was in 2013. It had been two and a half years since her last seizure and 4 since her first. We were planning a 4,800 mile road trip that included a stop at Disney World. I am not sure what I was thinking other than my kids deserved a real family vacation after my 3 years in graduate school and another year of teaching high school(which was a whole different intense story). I was determined to drive my kids alone across the country, and camp a bit along the way. So we started to ween off the medicine as we also started to drive across America. I did not know at the time that Isa should not ride rollercoasters, so we enjoyed Disney World to its fullest. They even gave us a special pass because of Isa’s seizure disorder which was like a fast pass for every ride and front row seats to each of the fireworks displays. We made it all the way to Canada where we would stay with my parents for several weeks. Isa had just finished weening off her meds and it happened again. Gran Mal Seizure number 4. By now I was used to it. I should mention here that Isa is never aware of the seizures and fortunately Elio had only seen the one. If I focus on my fear in these moments, please understand it is only with the knowledge that my children have not had that experience. The thing that sucks the most for Isa is that she just wants to be like anyone else. Isa does say she remembers having a strange dream that night where she was walking and it felt like sharp needles were pricking her feet. Then she dreamt I picked her up by her ankles and lifted her upside down.
My father is a doctor and made sure Isa was ok after the seizure. She was. There was nothing to do so we did not rush to the hospital. I called Isa’s doctor in the morning and he just said to go right back on the meds. That was 3 years ago. Since then Isa has been seizure free and we are waiting to ween her off again. The hope is that she will grow out of her seizure disorder. Last summer she took another sleep deprivation study to see if they would find anything in her EEG. They have not found anything yet. We are seeing a new neurologist this summer because I lack confidence in her most recent neurologist(we moved last year and had to change doctors).
Yesterday Isa fainted at school. I was right across the street working and got there faster then the ambulance. Although the school assumed it was a seizure and the students were frightened, she clearly just fainted. Watching someone faint is scary too and people are usually unsure of what has happened. When you see a gran mal seizure there is no question about it. I understand why they called an ambulance, I understand why the EMTs recommended she go to the emergency room in the ambulance. I drove Isa to the emergency room knowing better. After waiting 3 hours and not being seen I knew it was ok to leave. They would not have done anything anyways besides maybe test her blood sugar levels. So we head to her doctor this morning and to the new neurologist in July for another sleep deprivation test. More uncertainty, I am sure. On one hand, I am glad we have no idea what is the cause for all this. There are any number of bad things it could be that it is not. Living with uncertainly sucks though. If you ask me in person, and when I talk to Isa, everything is ok. We are truly blessed. Isa will be fine one way or another. But if you could dig into my brain or more appropriately, my heart, there is a space where fear lives. Fear of the unknown and fear that at any moment another tiny earthquake could occur.