Sickness, Christmas

John has had a cold for the last week and, as usual, this brings on more seizures. It also really appears that there is a direct correlation between the amount (and quality) of sleep he gets and the number of seizures he has the next day. We consistently see that he has a good day when he sleeps well. It's kind of a catch 22, as his current drug causes sleep problems. I definitely think the drug is helping him, but it is also keeping him from having a good nights sleep, which is likely hurting him. So, we carry on with our adjustments, hoping we can find the sweet spot again where he can go seizure free.
John didn't do so well seizure-wise with all the extra activity that Christmas brings. As you'd expect, he got really excited and for him that means increased seizures. He's done much better in the couple of days after Christmas. He still doesn't understand presents or anything. Even new toys don't interest him at first, though he does seem to slowly take interest in his own time.
We tried to get a picture with Santa, but John won't ever stay still long enough to snap a picture so we ended up with a nice picture of Maya and Santa, with John trying to squirm away.
Yoshie's mother is coming to stay with us for a week beginning on Dec. 31. It will be interesting to see how John reacts to this. He seems to enjoy having others around so I think it will be good.

Increase in Lamictal

I really think John's seizures just get better and worse on a completely random basis. Things seem to change for no reason at all. John was really doing pretty well for a good week, then he started to get worse again this week. We hadn't changed his drug or diet or anything else that we can think of. He had some stronger head drops this week, and a couple of days of around 20 seizures. Also, earlier this week he was having seizures that would be followed by a couple of minutes of crying. It was like he suddenly was in a state of really deep sadness and it was hard for us to see. But, that only lasted a day or two. Our first thought was that things were getting stronger again. But, Yoshie thinks he just may be more aware now and so he realizes when something happens to him so its an appropriate reaction. Who knows.
He has had a slight fever, and Tylenol seems to actually decrease his seizure count. So, maybe he is just very fragile and that slight temperature is all it takes to put him over the edge.
I talked to the neurology nurse again, who got us an appt for Dec. 30. I'm not sure if he'll adjust the VNS again, or further increase the Lamictal. In the meantime, we increased his Lamictal another half a pill so he is now taking 137.5mg/day. Hopefully we'll see some improvement over the next week.
Last week, we also went to see the Washington County special services dept. to see what sort of aid we qualified for. The good news is that we qualified for financial aid for all sorts of services. The bad news is that the waiting list is 3 years. At least we're on the list now.
We still haven't been able to get a speech therapist to come over. We do have another appt. with the private therapist next month. Yoshie has been working hard on the techniques that we've learned for increasing his speech. He is definately getting better, but at his own sweet pace.

Still doing pretty well

We increased John's Lamictal to 125mg last Friday. It's been a week now, and I actually think he is doing a bit better. He still has a handful of seizures almost every day, but I think they are really getting smaller. It seems to me that he gets a little bit clearer each time we raise the Lamictal. I wonder if it may be calming his background activity.
We also started giving John fish oil again. We've heard time and time again how it can be beneficial, and many people give it to their kids as a supplement anyway. What made us do it was a small study that seemed to show that some kids actually had reduced seizures while taking Omega 3 supplements. It doesn't hurt anything, and John takes it fairly easily so we figured it couldn't hurt.