We had a lot of fun at the hospital and now we’re home.
I’m not kidding!
Not every minute was pleasant, but overall it was a pretty good time. Nigel got frustrated a few times with having a bunch of wires hanging from his head and not being able to cruise the whole floor in the little car that he found in the hallway, but in general, he handled it with grace and aplomb. Of course, I spent a lot of time running around after him- I’ve spent years of my life dealing with “cable management” but never quite like this!
While we were there, Nigel had almost no seizures (these are the MAE seizures I’m talking about). The ones he had were quite mild – Mari and I didn’t notice any, but the docs and techs looking at the EEG’s did. Dr. Nash said that she saw “a pattern of discharges”, which means that the medicine is working without completely erasing the phenomenon it’s controlling. If the discharges were of higher amplitude, we’d be seeing them as seizures.
Nigel also has some more severe “tonic-clonic” seizures, but they happen only once in a long while. Or rather, I’ve only seen them a few times – they only happen when he’s waking up from a nap, and they last for maybe 5 seconds at the most. The docs at UCSF were hoping to capture one of those, but the chances were slim that he’d have one while we were there… and he didn’t.
They took some blood on Tuesday morning, mainly to check the level of medication in his bloodstream. The results were: the current level of medication is good; the level is near the limit without being over the limit. This may explain why he had a bad reaction when the dosage was increased a couple of weeks ago.
That being the case, the occasional small seizures that we’re seeing are just something that Nigel will just have to live with for now. I’d like to change his diet and move towards a ketogenic diet, which is said to help with MAE, and is in fact the only treatment known to really control MAE seizures. Drugs help, but diet works better. At the moment, with his food allergies and developmental delays, going ketogenic would be a big challenge. (but what if the ketogenic diet would help with his developmental problems???)
Anyway, it was not a terrible way to spend a couple of days and nights – not like a normal hospital stay at all. Tuesday I was out for the day and Mari was with him, and he decided that he didn’t need to take a nap. He finally fell asleep at 6 and was asleep when I arrived for the night shift. He woke up at 7:20, hungry and thirsty. He ate, we played for a few hours, he ate again, we played some more… I was ready to sleep, so I tried to get him to sleep at about 10:30… no luck. At about 11:30 he discovered the controls that move the bed, and got very VERY excited. That was fun, but by midnight I was exhausted, so I rolled over and fell asleep. A few minutes later he cuddled up with me and went to sleep. I extricated myself and made up the chair-bed, and got in a few hours of deep sleep, and Nigel slept well through the night.