We can't seem to stay drama-free for very long. A few weeks ago Elin wouldn't wake up-literally. She slept though the night which was my first clue that something was amiss but when she wasn't up by 8:30am I got really nervous. Susie was here and we both went up and tried to rouse her but she didn't want to wake up. So I packed a bag, cancelled my class I was about to teach and headed with Elin to SCH.
After all day in the ER we were admitted for the night. They ran a battery of tests but my underlying suspicion was that her CBD was causing one of her AED's (anti-epileptic drugs) to spike in her system. She slept a majority of the day which was a blessing since it took them over 4 tries to get an IV in her. She had a cold and had been fairly sick leading up to this so we had them swab her and she tested positive for rhinovirus. We had increased her CBD dose earlier that week and had seen her normal increase in drowsiness but it had been improving until that morning. The only other thing that had changed was her new batch of oil we started using on Thursday night.
By Saturday mid-day she was lively and hungry and seemed to be on the mend so we left the hospital. It would take several days to get blood test results back that would help us determine whether the Clobazam levels had been affected or not so there wasn't any need to stay since she seemed fine again.
Back at home she remained tired. We chocked it up to her being sick and just needing to rest. But come Monday when she wouldn't wake up all day again we headed back to SCH that evening. She ended up staying until Thursday afternoon and while we were there we switched her back to the capsule form of CBD and also lowered her Clobazam dose. The blood test results came back and sure enough her Clobazam metabolite was through the roof which was causing her increased drowsiness.
The good news is that this experience has opened up the conversation with the SCH neuro team about lowering her AED doses. They seem to be more open to it now and we were able to continue to use the CBD in the hospital. When we shared with them how well it had been working for her they seemed genuinely happy to hear that it was controlling her seizures. She did have one seizure prior to the hospital stay when she was coming down with her cold originally. Also- while she was in the hospital the second time she had about 4 seizures on Tuesday because she hadn't had any drugs for over 24 hours. Once we got her started again and re-introduced the CBD (at a lower dose as well) she stopped clustering.
Since being home she has had more apneic episodes. We need to raise her CBD dose but worry about it interacting with her other drugs still. We need to contact SCH and make sure we get a plan to start lowering her AED's soon since we need to increase the CBD. I mean lets get her up on the drug that helps, and wean her off the ones that don't seem to be doing much good- possibly more harm anyway.
So that is our current battle- trying to figure out how to manage all the drugs without landing in the hospital again.
As always- we had amazing help from family. Kyra and Susie were both instrumental in keeping our heads attached to our bodies and making sure Anya ate and went to school. All the cogs in the wheel have to keep moving when our world erupts- it is tough to manage it all.
