It’ll be two years in August since Lola showed her first sign of a clinical seizure — at least we thought it was a seizure. We had just left the dentist’s office and Lola was still recovering from the trauma of the appointment. I noticed her exhibiting some very strange behavior through my rear-view mirror. She hadn’t had a seizure in a couple of years, but like any parent of a child with epilepsy, I was always prepared for when that seizure-free streak could end. I pulled over and immediately began to videotape the episode which you will see below. I sent it on to Lola’s neurologist and while she wasn’t fully convinced it was a seizure, rather than having Lola endure yet another EEG, we put her on Keppra to try to get the episodes under control.
The Keppra never worked and Lola was experiencing the rage-like symptoms we had read about as a potential side effect. Eventually, she had an EEG and nothing showed up. We discontinued the use of Keppra. Because she had failed two anti-epileptic drugs (AED), we knew her chances of finding an AED that would be successful were extremely low. And being in a community of epilepsy advocates makes you understand just how dangerous some of these drugs can be. Were we willing to put our daughter through those side effects (many of the long-term effects were quite frightening) knowing the drugs may or may not work? Not until we exacerbated all other options.
For the next year we would modify her diet (no processed MSG), try alternative treatments, invest in a seizure detection watch, monitor the moon phases because we thought the full moon made her seizures worse, pray the barometric pressure change wouldn’t invoke the seizure monster, try to make sure she was never sleep-deprived, and because I was stricken with fear that she could die from SUDEP (Sudden Unexpected Death in Epilepsy), she has slept in our bed, every single night, for almost two years. Talk about sleep deprivation. We tried even the most unusual interventions as well; she listened to Mozart’s Sonata in D Major, K. 448 at night because I had read it can ease the brainwaves to prevent seizures, I prevented her from drinking anything with ice because I had read the coldness could induce seizures, and we limited bananas and raisins (thought to increase seizures) then reintroduced them to see if it would change her seizure pattern. I was burned out on logging the seizures, trying to pinpoint the triggers, asking questions to hundreds of parents of children with epilepsy, and staying up at all hours of the night researching what we could do to help our little girl. Nothing was working. We felt helpless.
In spite of the two – three a week seizures, Lola continued to develop, progress and learn. We began to accept that she just might have seizures and if they didn’t seem to be hurting her development, should we just let them be? But then we began to really wonder. Why weren’t they hurting her development? These things were lasting anywhere between 4 – 8 minutes long. Could it be possible for her to have that frequent of seizures and that long of seizures and still progress at such a rapid rate?
My husband had questioned these episodes for years. I questioned them too which is why I sent video after video to doctors and fellow epilepsy parents. I was looking for some sort of affirmation — anyone to say that they had seen something similar before. But seizures aren’t always typical and they can manifest in various forms and ways. Lola would always have clammy hands and feet, her eyes would become glossed over, her nystagmus would increase (wandering eyes), her legs would clench, she would hold onto you or anything she could get her hands because she appeared as if she was afraid she was falling, and when it was over, she would usually let on a big yawn and then go back to sleep. About 90% of the episodes happen at night, but if it happened during the day, she would either nap afterward or she would go about her business as if nothing out of the ordinary had ever taken place. Most everyone who encountered her had watched a video of the episode so they could keep an eye out for it. They all agreed too — it did look like a seizure.
After a lengthy discussion with Rob and Lola’s neurologist, we all agreed it was time to catch this thing on an EEG, once and for all. She had been having them so frequently that we knew we had a good chance at capturing one. If we just knew what kind of seizure it was and if it was damaging her brain, we would know what our treatment options were. So we admitted her to Riley Hospital for Children for a five day video EEG (vEEG). Five days, folks. The mere thought of a five day hospital stay for Lola was enough to raise my blood pressure. Add in the EEG nodes, the glue to hold them on through her lusciously thick hair, the annoying helmet, the uncomfortable backpack, the staying in view of the video camera, and worst of all – being confined to the hospital room – well let’s just say it wasn’t the easiest thing Lola and I have ever been through.
I opted to stay with her the entire time as I’m her person right now. I can hardly take a shower without her busting through the door screaming, “MOM”. I knew I could keep her calm-ish, but I was thankful her ABA therapists from Access Behavior Analysis spent three days with us as well. Lola did great considering the circumstances, but every day I could see her spirit start to wither. With every person who left (daddy, Sebastian, grandma, a therapist or even a nurse), she would begin to cry. She didn’t understand why they got to leave and she had to stay. I’ve talked before about how awful EEGs are on our kids and this one was no different. I’m going to continue to commission Massachusetts Institute of Technology (MIT) to look into different technology that will help doctors get the info they need without subjecting our children to such awful circumstances. A mom can dream, right?
When others asked what they could do, we simply told them to pray, hope or wish for a seizure. It was a weird request, but as soon as she had a seizure, we could leave. Four long days and three sleepless nights went by with nothing. She had just come off of a three day seizure streak and now here we were pleading with the seizure gods and nada. By night four, I was coming unglued on behalf of my kid. EEG technicians were annoyed because they had to keep fixing the nodes. I was relieved when a new technician came in on that Thursday night. Before she could even ask how it was going, I broke down into a puddle of tears. I couldn’t help it. Lola was losing it and I was too. We were done. I called my husband and told him I was giving it one more night and if nothing happened, I was pulling the plug on the whole thing. We would treat Lola and not her EEG…just as we had always done.
Later that evening, the on-duty neurologist agreed to discharge Lola first thing in the morning. Just knowing we were on the latter part of the stay made that night more bearable. And then at 5:10 am, I felt a tightened grip on my shoulder. It was happening. Oh thank God. I quickly pushed the button to alert the technicians to document the activity. They asked me questions through the monitor as I consoled Lola. After about seven minutes went by, Lola let out a huge yawn and passed out. I have never felt such relief. It was over and now we’d get the answers we were seeking. Of course, we would leave the hospital with no information and what a letdown that was. Knowing they had captured the seizure and we would know nothing about it for at least a week was awful. But being in a hospital for children is a reality check that others are going through much worse. Our hospital stay was short compared to most. Our daughter was healthy, we would be able to leave, and we didn’t anticipate a trip back anytime soon. We were among the lucky. I expressed this to that sweet technician as I was sobbing uncontrollably. She reminded me that while it’s good to empathize, don’t belittle the fact that the week was hard on our daughter because it was very difficult for her. And with that we left and Lola went back to enjoying her freedom.
Lola had a routine appointment with her neurologist last week. I knew the chances of her knowing the results were slim, but I prodded anyway. She warned me several times that she hadn’t seen the whole EEG, just the part where we pushed the button for the seizure activity. She took a breath and said, “It didn’t look like a seizure to me. I could be wrong and I want to wait for the report, but I didn’t see anything that indicated she had a seizure at that time.” Again, she reiterated she we would need to wait for the report — she knew she was unveiling news that could be life altering. I gasped with excitement and also confusion. I didn’t know whether to laugh or cry. The neurologist was quite pleased with the EEG overall. She said Lola was prone to seizures, but it actually looked pretty good. She went on with the exam and stated she very impressed with Lola’s development, language and progress. She told me she would email me if she had good EEG news and call if it was bad. I thanked her and we left. I recall asking my mom several times if she had heard what I did. Did she say she didn’t think it was a seizure? Did she really say that? How did she say it? Now I can’t remember. My word, I just didn’t know how to process it. I called my husband and while his instincts told him they weren’t seizures, I could sense he was surprised as well. But we would wait for the report and remain cautiously optimistic.
Two days went by and I received an email from the neurologist, “I have great news. Dr. Smith agrees. She did not have any seizures during the video EEG. Yeah! It does show she’s at risk for seizures.”
You read that correctly. The “seizures” we thought Lola was having for the last two years are not seizures at all and if they aren’t seizures – then what are they?
Elated, joyful, surprised, excited, relieved, confused, dumbfounded and worried are just a handful of the emotions this last week has brought our family. Okay – maybe me more than anyone. I know people have been patiently waiting for an update, but I couldn’t bring myself to share the news. We needed time to process it. We had been down a similar path before when Lola’s lissencephaly diagnosis was retracted. We were happy she didn’t have lissencephaly, but we were left with more questions than answers and now here we are, yet again. She hasn’t been having seizures this entire time, but what in the heck are these episodes? Something is taking our daughter out of the universe a few times a week for several minutes and that concerns us.
We’ve asked if she needs more scans such as an MRI, but nobody seems to be too worried about the nature or origin of these things. We’ve begun to wean down her Trileptal and have alerted those closest to her that she isn’t having seizures after all. I felt it necessary to write out the story, in its entirety, almost because I can’t believe it myself. Of course, I could post this today and then tomorrow she may have an actual seizure — if we even know what her seizures will really look like. Yet I think back to the last two years and my mind is just blown. I’ll spare you all of my expletives because I’ve said many this last week. I asked those closest to us, “Did I make it all up?” I realize I’m asking for some sort of reassurance because I know I didn’t. They all saw the same videos and some even saw the episode with their own two eyes. It looked like a seizure. And yet it’s not.
What we are being told is that it is some sort of self-stimulatory phenomenon or a transient alteration of awareness – two extremely vague, non-identifiable conditions. Lola goes in for a sleep study this month for possible sleep apnea. We’ve thought maybe it’s some sort of parasomnia activity, but why would she have it during the day? I could write four more pages about the questions that go through my mind. My poor husband and Lola’s poor neurologist, neurogeneticist and Bosch Boonstra Schaaf Optic Atrophy Syndrome researchers — I’ve just bombarded them with questions. How can I not though? For two years, epilepsy has ruled our lives. Maybe not ruled, but it wedged its big ass right smack dab in the middle of it. And that’s OK because Lola is our daughter and we just wanted what was best for her. Yet now it’s all in question. Now we don’t know if we are up against something or not, and that’s an uneasy position to be in as a parent. But if the experts aren’t worried, I’m going to try to not worry either. We’ll just go on with life, love on our little girl, get her off of the AED, and maybe finally get a bit of shut eye because girlfriend is back to sleeping in her own bed. She may continue to have the night episodes and now I won’t know, but at least we can rest easier knowing she is safe and that’s all that matters. Oh Lola, what a story we’ll have for you someday.