Myron underwent a 72 hour Video EEG in June. I have been wanting to share all the details of our stay with you for awhile. I couldn't quite get it all out in words. Days in the hospital with your kiddo are packed with so many emotions, details, and important moments. So, since, pictures are worth a thousand words, here is our Video EEG- photo journal style.
We were really worried about how Myron would do putting the electrodes on his head. Myron had one previous EEG a year prior. Saying the first went horrible is an understatement. Myron was "the most difficult patient" the tech had ever had. Myron screamed and thrashed and sweat the little glue spots right off his head. We prayed hard that this time would be much less traumatic for everyone. Myron not only did better, he did AMAZING! All our prayers were answered. He patiently sat still while the electrodes were placed on. The tech left and said Myron was "one of the best patients" he has ever had. All glory to God. He is the only one who could keep Myron so peaceful in such a sensory stressful environment.
Once we got the electrodes placed, the tech wrapped his head up and we let him relax for a few minutes before beginning the intermittent photic stimulation. Photic stimulation is a fancy term for the flashing lights they use to see if your seizures are photosensitive. Myron did a jolt during one of the flashing lights, but we did not push the seizure button. It was mild and he was still on medication so I did not think much of it. We ended up repeating the photic stimulation later in the week. At which time, he did have multiple seizures.
Once, Myron was hooked up and went through the photic stimulation, we saw the doctor for a bit and went over some history and concerns. Myron was seeing an Epileptologist in the hospital, not his usual neurologist. We needed to meet, get on the same page, and discuss how the EEG will work over the next few days. After that, we set Myron up with lots of toys and movies, and waited for seizures to start.
We had to stay in that little room for 3 days. The goal was to take Myron down to almost no meds and induce a seizure. Myron's electrodes were hooked up to a receiver which was hooked up to the wall. (VIDEO EEG TIP: Bring a small backpack to put the receiver in; this made it much easier for Myron to move around). We used movies and a lot of toys to keep Myron distracted. We were gifted some great, fun activities from friends of ours who love Myron. We played with play-doh, water beads, and glow in the dark bracelets (which was so helpful and fun for keeping Myron up late). We brought a small foldable table for Myron to sit at for eating and playing. Rady Children's Hospital, also, had many fun toys we were allowed to bring him from the play room. And, of course, we watched a lot of movies. Overall, the days were not as long as I anticipated. We prepared well!
Myron began having seizures at the end of day 2. The seizures at this time were so quick and discreet that it took me awhile to realize what was happening. And, when I started getting suspicious of the events I did not push the button. But, I should have. A side note to all parents going for the Video EEG with their child, push the button as much as you want! It wasn't until day 3 that I really understood it was better to push the button for everything and anything that could be an event, even if it ends up not being one. The button intimidated me. When you push it an alarm goes off on the whole floor and the nurse comes running in. I didn't want to set off so much chaos unless I was very sure. But, that is why you are there; to investigate any and all concerning presentations. This is my biggest regret of the week. Next time we do a Video EEG, I will push that button for any suspicious event. But in the early morning hours of day 3, the seizures became more pronounced and I began to push the button. When we saw the doctor that morning, she hadn't yet reviewed my push buttons. We decided it would be helpful for Myron to take a walk around the hallway since exercise is one of Myron's seizure triggers. We learned the EEG receiver records up to 20 minutes, unconnected. Normally, they do not prefer you to leave the room since there is no video recording what is happening when you leave. Since, we were on day 3 and hadn't recorded a typical event we headed out for a walk around the Med/Surg floor. It only took a couple minutes for Myron to begin having seizures. We brought him back in and repeated the photic stimulation. This time around he had multiple seizures during those few short minutes.
Myron continued having seizures. It wasn't long until we saw the doctor again and put Myron back on his medicines. No one wanted him to continue having the number of seizures he was having. At this point, Myron was exhausted. Seizures wipe you out. So, he fell asleep for the afternoon, and we processed all the information we learned from capturing the seizure activity on the EEG. We got a more clear diagnosis, but there are still many unknowns. Myron was believed to have partial epileptic seizures, but I knew in my gut generalized seizures were involved. This EEG confirmed that the episodes Myron had were generalized myoclonic seizures. Myron was officially diagnosed with Symptomatic Generalized Epilepsy. A better diagnosis then just plain epilepsy , but still not as specific as everyone would like. Because of the age of Myron's seizure onset, his history of complex febrile seizures and febrile status epilepticus, his tremors, and global developmental delay, the doctors believe Myron's epilepsy is a symptom of a larger underlying neurological problem. We discussed some very scary diagnosis possibilities with the doctor and were told that we just have to wait and see how his epilepsy changes or progresses. I left that hospital very fearful of the future, but glad we were making strides forward in understanding what was going on.
I couldn't have made it through the week without all the help and support from our family and friends. Derek was in and out of work and the hospital, so my mom stayed to help a lot. Adaline was taken care of by a combination of family and friends. She did make an appearance at the hospital once and she was an adorable distraction. We had family come and visit Myron to help him pass the time. I, also, received food and wonderful encouragement and texts from loved ones. I am so grateful for all the people in our life who make these hard things easier on us. We love you!
June was quite awhile ago, so here is a quick update on what has happened since.
It wasn't long after we got home until Myron had another breakthrough seizure and he was put on his second medicine, depakote. At first, Myron responded amazingly to the Depakote. We saw remarkable improvement in so many areas- behavior, language, engagement, sensory sensitivities and seizure control. It was an amazing couple months. Then, he began having seizures at school, and more at home. We have since increased his dosage. We are almost maxed out of our second med and are transferring to an epileptologist. I love our neurologist and we have been with him through so many scary things. I am sad about not having him anymore, but Myron needs an epilepsy specialist. We also went in for whole exome sequencing for Myron. We are still awaiting the results which could take months. As we head into flu season, we will most likely see an increase in seizures for Myron. We are watching closely and praying for the best.