Once I'd freaked myself out enough that Bennett wasn't developing like he should have been I called the neurologist we were working with up here who works at Primary Children's (Dr. Nelson) to ask if we could get some genetic testing done to get clarification on or rule out a syndrome. I could only get through to his nurse, of course, and she told me he would not let us do the testing because Bennett didn't meet the requirements to be able to justify it to an insurance company. They were wrong, which I told her over the phone, he actually meets all the requirements (intractable seizures, normal eeg, normal MRI, developmental delays, no other obvious reason for seizures), and I angrily asked her if Dr. Nelson was waiting until he had a status seizure and ended up in the hospital so he would "qualify". She had no response to this and I told her we would find a different doctor and get the testing done elsewhere.
At this point I went online to search the forums for parents of kids in Utah with complex seizure cases to see if they could recommend any doctors who were willing to do genetic testing and work with them on personalizing their care. For the most part people recommended the epileptologists at the University of Utah hospital (there are only 2), but they take around 6 months to get in to--and I'm worried about Bennett's development and safety right now, so I don't want to wait that long. I finally found a pediatric neurologist someone recommended who wasn't an epileptologist, but seemed to specialize in seizures to some extent, and she was only 10 minutes away and could get us in that very week!
So that brought us to our first appt. with Dr. Morita. The morning of that appointment Bennett had his first longer-than-5-minutes seizure :(. It was really like 2 back to back tonic-clonics that he never came back from until they were both over. But in total the episode was about 10 minutes. Dave had an important talk he was giving at a conference for work in Salt Lake City, so I quickly called him just to update him that Bennett had had the seizure and seemed to be okay, just really tired and fussy, which is his normal post-ictal state. We both agreed that the ER would probably be less helpful than going to the appt. with the new neurologist, so we hung up and Bennett and I just waited around for an hour until it was time to go.
2 minutes into meeting her I could tell that she was my kind of doctor. She didn't understand why Dr. Nelson didn't want to order genetic testing because it could only help answer our questions. She listened closely to my concerns about Bennett's development and the timeline of his medications and seizures, at which point she asked me what I'd like to try next (that's really all doctors ever need to ask me if they want to gain my trust). I told her I really wanted to get him off one of these medicines (currently on Keppra 2 ml 2x/day and Phenobarbital 30 mg 1x/day) to see if we noticed any personality differences, because I was worried they were slowing his development. And that I actually thought the Keppra was making his seizures worse if anything. She agreed that it didn't sound like the Keppra was helping so she explained how we could start weaning him off of it, while planning to up the Phenobarbital if he had any breakthrough seizures during or after the wean. She then took about 20 minutes printing off info for me about all of our other options for medications for Bennett and asked me which one I felt most comfortable trying next if the higher dose of Phenobarbital didn't control the seizures completely.
I'll have to go back to the notes to see which medicine we settled on, but it was either Onfi or Topamax. I'm pretty sure I wanted to try the one that was supposed to make him groggy rather than irritable. But honestly I told her I didn't want to try any more traditional AED's (anti-epileptic drugs) because I had heard great things about CBD oil (Cannabidoil) in terms of controlling seizures and reducing side effects in kids. She told me she's seen mixed results and the research isn't great, but it's true that it seems to have less side effects than the traditional meds and that in Utah to get a medical marijuana card you have to have tried 3 traditional AED's and proven that the seizures are still not controlled to qualify. But then once you reach that point you can just buy it online and legally use it here in Utah. She fully supported trying to get to CBD as quickly as possible if the AED's weren't working.
She also told me I could always just try it illegally right now if I wanted to because lots of parents do, which endeared her to me quite a bit, but I told her we would do our best to wait and go through the right channels before we started it. Before we left she told me that the goal was 100% seizure free and if we didn't get there, we would keep trying whatever we could until we did. And that he needed to be 30 lbs before we could legally have a rescue medicine at home with us, and that having oxygen at home can actually be more dangerous for kids having seizures so if he had another seizure like the one that morning that was 10 minutes long I should call 911 and they could administer the rescue med to him, which would stop the seizure, and head to the ER if it didn't. I hadn't been sure if 911 would be able to do anything for him so I didn't call them that morning and luckily he stopped seizing on his own, so this was really helpful information for me.
I left the appointment feeling more hopeful, empowered, and informed than I had since the seizures started and excited to see what happened with Bennett once he was off the Keppra. Now we just the waiting game!
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