Back again, Mama’s back. Tell a friend- but for real, please do! I am going to get back into posting on here again. This post is going to be a long one and kinda run through what the girls have been through medically the last 6 months. It has been exhausting, and they’ve been struggling so much. I have been feeling super down with everything going on, so I took a huge step back from sharing our story. I made a promise to myself, my girls and God I would continue to share as much information about Dravet as possible, and its time I get back to that.
Let’s pick up where we left off. March- Nova had a relatively uneventful March, but towards the end of the month Denver had the longest status seizure I have seen thus far. It was 2 hours long, and very hard to watch as a parent. I kept begging for intervention, but the doctor in the ER at the hospital we were brought to tried to tell me she wasn’t seizing. Which is interesting looking back through the notes because she definitely charted that Denver seized for 2 hours. We tried to get her started on Diacomit and then Fintepla but due to her age insurance refused to cover. We put her on Topiramate.
April was uneventful for both girls, and in May we decided to lower Nova’s Onfi dose a bit due to agitation. This helped a bit. Denver started having an increase in head drop seizures, so we increased the Topiramate and started the referral process for her VNS surgery.
June was very uneventful as well, but July was when things started getting a bit hectic. Nova started having an increase in seizures with no explanation. They were happening during the day, and we were having about 3 a day. We took her to the hospital we typically go to and the on call doctor told us to expect this as Nova’s new course and that things will likely get worse. This obviously was not what we wanted to hear and not something we were just willing to accept at face value. We took her to another hospital in Orlando, they did an EEG and started her on Keppra. After that we did a follow up with her neurologist and decided to completely wean her Onfi.
In August, Nova was admitted for the Onfi wean, and they decided to wean Topiramate as well because they said it negatively impacts the ketogenic diet. She was admitted for 5 days, and her EEG improved during this time. We went home with a prescription for stiripentol/diacomit and waited for that. About a week past discharge, Nova started having seizures in her sleep. She had about 3 the first night, the next day Diacomit was started and she continued to sieze in her sleep. This went on for about 3 weeks, increasing Diacomit for more coverage, and we were getting more and more seizures that were more severe every night. We did a clonazepam bridge for a few weeks at night, and that wasn’t helping much either.
We were keeping up with her neurologist, and he kept advising us to go into the ER if seizures did, and every time they did and we went in, the on-call neurologist discharged us almost immediately saying over and over there was nothing more they could do and this was “Nova’s new normal.” Her neuro suggested another hospital for keto due to the long wait at Nemours. We took her to two other hospitals as well during this time, but they all would call the on call at Nemours to advise on Nova, which of course, kept resulting in discharge. SO many nurses, physician assistants and doctors on the hospital team at Nemours fought for Nova, but while I don’t understand why, this neurologist seemed to get the finally say so. Minor med adjustments were made, but no evaluations happened or anything to try and find the root of the issue. It was extremely frustrating just being brushed off. Saying this is “just Dravet” without any further evaluations or testing is completely wild to me. I could go on and on about how upsetting this was.
Will and I were alternating sleep schedules, so one of us could be up with Nova, since a few of these seizures were longer than her normal and needed rescue medication. Will lost his job due to needing time to be with Nova, missing work for appointments and hospital visits. On 9/1-9/2 Nova had 8 seizures in less than 12 hours. The last 3 were longer and the last of those 3 we had to use rescue medication. I had finally had enough.
TO BE CONTINUED…
-Addi Epilepsy Mama
