In my last post about Nova’s journey, I ended with sharing that around her first birthday we decided to switch neurologists. I still to this day wonder if that was the right choice for her or not, and todays post will help you understand why that question haunts me. We changed neurologists to an “epileptologist” that came recommended to us by our pediatrician. On the day of our first appointment, we were greeted with a waiting room FULL of patients. We waited far past our appointment time, but I accredited it to the fact that this guy must be really good to have so many patients coming to see him. He immediately knew what Dravet was, looked at Nova’s genetic testing and symptoms and very factually said she had Dravet Syndrome. He completely changed her medication line up, one of those including Depakote, and asked to see her back in a few weeks. I don’t remember if she hadn’t had a seizure at all, or if it was only one, but her tonic-clonic seizures had significantly decreased. For the next few months, everything continued to go pretty well. I don’t know exactly how long, but she had her longest stretch without a seizure at this time. However, every time Nova would have a seizure, her doctor would increase her Depakote dose. We were told this was a medication that had to be monitored with bloodwork, but we weren’t made aware of how serious that was. In mid-February 2024, Nova started to get sick with some type of respiratory illness. She had seizures with fever, but that was to be expected with Dravet Syndrome. After our second or third time taking her into the emergency room, they did testing and said she had rhinovirus. All throughout this, meds are still being increased with every seizure. Then March comes around, she’s still sick, she’s still having seizures 1-2 times a week. We keep being told by her neurologist, pediatrician, and the emergency department that its just a virus and it will pass. One of our visits in the beginning of March, her oxygen was sitting in the 80s and they kept her overnight and discharged her in the morning. Her breathing sounded awful to us, but we were told she was okay to leave. Her breathing sounds just kept getting worse as the month went on, but we kept taking her to the ED and pediatrician and hearing it would pass. Come the end of March, I was taking her to the emergency department every 3-4 days. She started having a non-stop fever, which meant increased seizures. She was also very lethargic, but at the time I thought that was just because she had been sick for so long. We were discharged on the 28th with pneumonia and an antibiotic. What no one informed us of at discharge, however, is her platelets were 52. On the 30th of March, I brought my baby in again. She had a rash all over her legs (petechiae) and was so sluggish she could barely keep her eyes open. To our naive eyes, we thought she was just having an allergic reaction to her antibiotics, we would go in and get an epi pen or something and come home. We didn’t know we were in for a weeklong hospital stay. When we arrived, her oxygen was dipping into the low 70s. We later found out her platelets were 13, and this is when we were informed, they were 52 two days prior. We were told we were being transferred to Nemours, but we had no idea what that really meant. When we got to Nemours, they informed us our child had severe pneumonia and was either in respiratory suppression or that she had cancer. This felt like a dagger to our hearts. Nemours did amazing running tests and keeping us comfortable. After a few days, her platelets rose slightly. This felt amazing because it meant it wasn’t cancer. What it did mean, was she was experiencing Depakote toxicity, and that combined with being so ill caused respiratory suppression. After lots of blood work, a platelet transfusion, strong antibiotics, and lots of oxygen- our babygirl came home 8 days later. We also were discharged a new patient of our current epileptologist. This whole experience made us feel like we were failed in so many ways. I begged for help for my baby for 6 weeks before finally someone saw what was wrong. I lost my girl for that bit of time to illness and medication. But, thanks to our amazing team at Nemours, we got her back better than ever. Nova started walking 2 weeks after discharge. 3 months after she was speaking quadruple the amount of before. She flourished under new care. Today, Nova is still being cared for by Nemours and is on a regimen of Diacomit, Fintepla, Clobazam and Epidiolex. Nova has had 5 grandmal seizures in the last year, but over the last 6 months has been having daily atonic seizures. We are so happy with where she is compared to April of 2024. She speaks in 2-3 word sentences and is the happiest girl. We will be doing an EMU soon, my next post will be about why. Can’t wait to share more
