We recently acquired a new piece of equipment which has been such a blessing already in peace of mind. After a long, exhausting battle with the insurance company, we now have a pulse oximeter in Melanie's room. It's just a small machine attached to a glowing sensor wrapped around her toe whenever she sleeps, monitoring her oxygen saturation and heart rate. We have it set to alarm if her O2 drops below 88%, indicating a possible seizure. In my mind, I also think of the higher risk of SUDEP (sudden unexplained death in epilepsy) in Dravet kids. One of my biggest fears, besides not waking to the sounds of a seizure in the middle of the night, is waking up to find Melanie has slipped away while I slept. I know this pulse ox won't save her life if an organ decides to shut down, but I can't even explain the peace it brings me to know that she will never simply slip away without our knowing it. Of course the main reason for having this machine is to be alerted to nocturnal seizures. The few times I have awoken to the seizure breathing sounds it he middle of the night, I have run up to her room to find her face-down and blue. Now with this machine, I don't have to worry that I might not wake up to those faint sounds next time. I can sleep so much better now!
Melanie's last seizure was the Saturday before Thanksgiving. As usual, she regressed in speech, mood, behavior, etc. after the seizure. It usually takes at least two weeks for her to get back to baseline. This was the shortest tonic clonic (grand mal) ever, because of the wonder-rescue-med, but it took two and a half weeks for her to recover. On Wednesday of last week, I saw something click in her, and she became brighter, happier and better. During that post-seizure slump she may not lose a whole lot of words or anything too severe, but her forward progress definitely halts for a time. When she snapped out of it this week, we instantly started hearing new words and speech sounds, and her cognition/understanding started improving again. I'm not sure how much this has to do with it, but at that same time we tapered her ickiest medication. We've been slowly bringing down her depakote, since it messes with... everything: liver, appetite, metabolism, behavior, cognition, speech.... It's poison. Every time I request a decrease, it makes our neurologist "nervous," but of course she always leaves it up to us. It doesn't make mom nervous, though. I would just love to cut this one out of her cocktail completely! I see Melanie emerge more and more with each decrease.
We are planning on trying a special diet in the new year. It's gluten-free, casein(dairy)-free, and it is touted mainly for treating autism and ADHD. We're hoping to see improvement in Melanie's cognition and sleep and overall wellness. I'm doing research right now, trying to get as much planning as possible done before we get into it. It will be hard, but I know we can do it. If it helps her, it will be more than worth the work.
Sometimes I just can't believe how great Melanie's seizure control is right now. We continue to lower med doses (I've even been skimping on her keppra more and more each week), and there is no visible increase in seizure activity. We only see positive improvements in everything else. Only one answer for that: God's amazing protection and the many and constant prayers of those who love us.
Deo gratia
