John continues to do quite well overall, but still seems to have good and bad days for no apparent reason. He's had a couple of days now where we didn't see any seizures at all, and other days where he's had a couple of stronger myoclonic head drops (one that actually bruised Yoshies face). You can tell that something still isn't quite right in his mind, though, as he can quickly go from being happy and playing to yelling or acting fearful of something for a short time. I think he's probably having subclinical seizures, though it could also be a side-effect of the Lamictal. We won't know for sure until we get another EEG. We'll probably try to schedule that for early next year.
We still haven't succeeded in getting John any speech therapy. We had both a private and County therapist scheduled to see him, but the private therapist is just too busy I guess, and the govt. supplied therapist is sick and won't be back until January. So, we keep plugging along trying to do the best we can. I don't really think there is any magic to speech therapy, and what we are doing is probably the same thing a therapist would do. Still, it would be nice to actually have a therapist confirm that.
This Thanksgiving is certainly better than last year. This year, he can join us at the table, which is great. Last year, he couldn't eat at the table because he was having such frequent seizures that he'd get hurt, and he was on the keto diet.
Wednesday, November 23, 2005
Sunday, November 13, 2005
getting better again
Things stayed mostly the same for about a week after my last update. John got a little cold and subsequently had 1 bad day with 35 small seizures or more. Once he got over his cold, he returned to more normal days of 15-20 seizures. These seizures are really small, and I'm starting to think they are actually getting better with time.
Yoshie is working hard during the day to teach John some basic commands. He now understands "sit down", "No", "take a bath", "go", "nen-ne" (go to bed), "tabetai" (I want to eat), "bu bu" (go to car), "good", "more", and quite a few other things. He's definately making progress. He's also trying hard to say a few more words, though progress is slow. He's dancing again, and plays with Maya all the time.
We still haven't heard from the speech therapist. I guess I'll have to follow up with that. The occupational therapist came by for a short time, and she'll be available for consultation from now on. We're not worried at all about his motor skills, though, so I doubt we'll have much contact with her.
The really good news is that John only had one miniscule seizure all weekend! He started getting better on Friday, with only 4 seizures that we saw, then didn't have another one until Sunday evening. It almost feels like they are burning out, but we know enough not to get too optimistic. The interesting thing is that we didn't change anything. He's still on the same dose of Lamictal, we haven't touched the VNS in a long time, and we have been keeping his diet consistent. We really can't explain why he suddenly got better. We're hoping that it is simply the cumulative effect of the VNS.
The down side to this is that he isn't sleeping very well again. This happened the last time he had a seizure free stretch too. It lasted a couple weeks last time before he started sleeping soundly again. I can only imagine that he is feeling good and doesn't want to sleep. It's certainly a small price to pay. Just one short year ago, John was on a gluten and dairy free keto diet, severly constipated, on 3 drugs, and getting worse all the time. He was diagnosed with likely Lennox-Gastaut syndrome, and we were expecting further cognitive regression. I don't think anyone would have believed he would be this well off right now.
Yoshie is working hard during the day to teach John some basic commands. He now understands "sit down", "No", "take a bath", "go", "nen-ne" (go to bed), "tabetai" (I want to eat), "bu bu" (go to car), "good", "more", and quite a few other things. He's definately making progress. He's also trying hard to say a few more words, though progress is slow. He's dancing again, and plays with Maya all the time.
We still haven't heard from the speech therapist. I guess I'll have to follow up with that. The occupational therapist came by for a short time, and she'll be available for consultation from now on. We're not worried at all about his motor skills, though, so I doubt we'll have much contact with her.
The really good news is that John only had one miniscule seizure all weekend! He started getting better on Friday, with only 4 seizures that we saw, then didn't have another one until Sunday evening. It almost feels like they are burning out, but we know enough not to get too optimistic. The interesting thing is that we didn't change anything. He's still on the same dose of Lamictal, we haven't touched the VNS in a long time, and we have been keeping his diet consistent. We really can't explain why he suddenly got better. We're hoping that it is simply the cumulative effect of the VNS.
The down side to this is that he isn't sleeping very well again. This happened the last time he had a seizure free stretch too. It lasted a couple weeks last time before he started sleeping soundly again. I can only imagine that he is feeling good and doesn't want to sleep. It's certainly a small price to pay. Just one short year ago, John was on a gluten and dairy free keto diet, severly constipated, on 3 drugs, and getting worse all the time. He was diagnosed with likely Lennox-Gastaut syndrome, and we were expecting further cognitive regression. I don't think anyone would have believed he would be this well off right now.
Wednesday, November 02, 2005
More Lamictal, Halloween, pre-school
A lot has happened since I last updated, though there has been no change in his seizures.
We had a meeting with his pre-school teachers and nurses to discuss our concerns about his pre-school environment. It went very well, and they agreed with everything we said. That was a big relief. So, for the next 3 months, we will be getting home therapy sessions in speech and general therapy. We'll also have one at-home session to go over occupational therapy issues and then the occupational therapist will be available for consultation on an ongoing basis. We'd like to get John back in preschool eventually, but not until we feel it is worthwhile. In the meantime, we're happy with this situation.
We increased John's lamictal dose to 112.5mg/day, starting on Monday. We really don't see any difference, good or bad. John does seem especially happy and attentive these days, and that could well be due to the lamictal. I guess we'll never know unless we get rid of it. Unless we see some negative effects, we'll continue to increase this drug until we get to the upper end of his therapeutic range (200mg/day). We still have a feeling this one might help him at a higher dose.
John enjoyed Halloween. He dressed as a furry green dragon, and went trick-or-treating at a couple of houses. At the first house we went to, he ran straight through the front door all the way to the kitchen area where some ladies were cleaning up. I had to run in after him. I think the house owners were amused. We had a party at Eric & Amy's house, and mostly John just enjoyed having all of the people around. Even though he doesn't talk, he definately loves the parties.
We had a meeting with his pre-school teachers and nurses to discuss our concerns about his pre-school environment. It went very well, and they agreed with everything we said. That was a big relief. So, for the next 3 months, we will be getting home therapy sessions in speech and general therapy. We'll also have one at-home session to go over occupational therapy issues and then the occupational therapist will be available for consultation on an ongoing basis. We'd like to get John back in preschool eventually, but not until we feel it is worthwhile. In the meantime, we're happy with this situation.
We increased John's lamictal dose to 112.5mg/day, starting on Monday. We really don't see any difference, good or bad. John does seem especially happy and attentive these days, and that could well be due to the lamictal. I guess we'll never know unless we get rid of it. Unless we see some negative effects, we'll continue to increase this drug until we get to the upper end of his therapeutic range (200mg/day). We still have a feeling this one might help him at a higher dose.
John enjoyed Halloween. He dressed as a furry green dragon, and went trick-or-treating at a couple of houses. At the first house we went to, he ran straight through the front door all the way to the kitchen area where some ladies were cleaning up. I had to run in after him. I think the house owners were amused. We had a party at Eric & Amy's house, and mostly John just enjoyed having all of the people around. Even though he doesn't talk, he definately loves the parties.