So it’s been about 4 months since I last updated. Some of the absence was due in part to needing to recharge from the longest and most challenging school year I’ve had in 15 years of teaching. I’ve also been busy with my two favorite hooligans having some summer adventures. In the last 4 months, Max’s Epilepsy has had some major peaks and and some plateaus and as I’m writing this now, I am in what Matt affectionately referred to as our timeshare: Lurie Children’s Hospital.
I am a big organizational nerd so we’ll summarize in list form:
The Good:
- We’ve had 4 RNS adjustments so far and they’ve gotten some really great data.
- Overall, the device is shortening the duration and severity of a decent amount of Max’s seizures. This is rad because we know we are playing the long game (think a few years) with this and seeing these improvements is a big deal. It helps tremendously that he is 8. Almost every single seizure he has is caught and flagged by us.
- We’ve been able to wean off of one heavy hitting medication. I wasn’t super thrilled about him being on to begin with because it had rough side effects.
- We are on a cannabis based medication that I’ve wanted to try since the early days of Max’s diagnosis and experiencing more success on it than other medications we’ve tried.
The Bad:
- Going onto the cannabis based medicine was tricky because 2 of Max’s other medications he was on have contraindications with it and can increase in potency very quickly.
- Spoiler alert: they did increase in potency very quickly, please see “ The Ugly”
The Ugly:
- We’ve had some ups and downs navigating medications since all of this started. Max is very sensitive to medications and most AEDs (Anti Epilepsy Drugs) come with a laundry list of scary side effects. Max’s Epilepsy is drug resistant or intractable so not only have we struggled to find medications to give us seizure control, but also ones that don’t completely change Max’s moods and personality.
- He has had medications that have given him extreme mood swings and make him very emotional. I related it to the movie Inside Out for him. It’s GOOD to have feelings and emotions and you want to experience them all. It just has to be HIM that is in the driver’s seat. We want to make sure that his medication isn’t making one of his emotions like sadness or anger louder than the others. I had asked one of our nurses very early on if this was the trade off with Epilepsy: that we treat the seizures and I lose this amazing, funny, charming, intelligent charismatic kiddo. She said no, that the goal is to get him as close as possible to the pre diagnosis Max while treating his seizures. That has been the bar we’ve set things by since, and we won’t settle. He is an incredible kid and we’ll keep pushing until we figure it out.
The Super Ugly:
So we had settled into a groove and weaned off one medication completely and weaned down on another because the increased levels were caused by the addition of the cannabis based medication. Seizure load was lightened, Max was feeling like himself after finding a sweet spot with medication levels. Then.. like Murphy’s Law, this past week happened.
Sunday morning Max has a seizure that clustered. It started, we used his RNS magnet to mark it and timed it. It seemed like it ended after about two minutes. Max was kind of lucid and able to answer some questions like what his name is and who Matt was. Then he went back into the seizure and came out and went back into it. Time added up and we had to administer his rescue medication because we were over our 5 minute seizure time. The seizure ended and Max took a 3 hour nap. He woke up and was groggy (expected) but ok. Then he had 2 more seizures later that evening. This was the first time we’d had to use rescue medication in months.
Monday Max has a short seizure which was more like his typical seizures we’ve been seeing.
Tuesday brought another cluster and rescue meds. He went on to have some more seizures in the evening. Our SAP (Seizure Action Plan) protocol is that if Max has clusters we have to start a bridge medication. Bridge therapy is a set of scheduled oral doses of clonazepam for patients with seizures that have increased in frequency) until an effective oral maintenance dose can be attained. We started Max’s bridge. We stayed in communication with the Epilepsy team and on call Neuros with plans to continue with regular medication, hypervigilance, and come in if things continued the next day.
Wednesday morning brought us another cluster and rescues. We called in and made a plan to check in on a non emergency basis. They said they’d call us and let us know when our room was ready. We packed and prepped the dynamic duo for some time apart. We dropped Frankie off with my parents. Max scored some Lego sets and books from Nana and his Aunt to keep him busy and we were off to our timeshare at Lurie’s. We met with the on-call Neuro and gave her the rundown, she had seen our videos and seizure log. Max got all hooked up to his video EEG and got to Lego constructing. Matt stayed with him overnight and I went home to tag in the next day. They had a pretty quiet night seizure wise.
Thursday morning delivered another cluster and another round of rescues in the hospital. They were recorded on the video EEG and RNS. Max took another epic nap and the team reviewed everything they saw. It’s too soon to adjust his RNS again because we just did 2 weeks ago. We were given the option to increase on one of his medications. One is a chemo medication that helps shrink the tubers (tumors) caused by his TSC and the other is the cannabis based medicine. He was on a higher dose of the chemo med before and it was causing mood side effects for him so we think our best bet right now is to increase the cannabis based medication. We increased that this evening and are keeping our fingers crossed that he tolerates that well and things calm down a bit for us. Max definitely seemed more comfortable this evening.
Somedays are harder than others and this week was a rough one but I’ll leave you with a Frankieism that I am trying to employ. She has hip-hop through the park district and parents have to wait outside and come back at the end of class because of Covid. I said, “I’ll be out in the parking lot and come in at the end, I don’t want you to worry”. Frankie said, “ I won’t worry, that’s not my thing”.
