John continues to have longer seizures on most days, but we haven't seen any over 10-15 seconds since last week.
He had a great Christmas Eve with no longer seizures at all. All of the excitement of Christmas led to 3 longer seizures, though.
I guess we're getting used to them now. And, it's a big relief that they haven't progressed to the point they were last year. So, far he has been able to bring himself out of them within 20 seconds. Or, maybe the VNS magnet is helping to bring him out of them.
We think John is doing better cognitively. He's still not communicating much, but it appears that he is understanding more and more. I also witnessed him sitting down and turning the pages of his book for probably 5 minutes. For a kid that usually can't concentrate for 5 seconds, this seemed like a big step. This could be because of the increase in Felbatol or the removal of the Lamictal. As long as the seizures don't get worse, we're not going to reintroduce the Lamictal. We'll trade seizures for development, up to a certain point.
We're scheduled to increase the Felbatol again next week. Hopefully, we'll see even better things with that.
Santa brought John a bag of 100 balls, which he was really excited about, though he seems to have gone back to his old set of 5 or 6 balls for the most part. Not sure why that is. Santa also brought the kids a big realistic remote-controlled dinosaur. We were worried that it might scare John, but he pets it just like a cat.
Friday, December 22, 2006
The battery was fine. So, the increase in seizure activity means something else is going on.
We asked the doctor if maybe John just needed a low dose of Lamictal to control the longer convulsive seizures. Even though it is not considered therapeutic, he says that he sees cases all the time where a low dose of Lamictal helps kids. So, we may end up going back on a low dose of Lamictal at some point. Before we go there, though, we want to give Felbatol a shot at a higher dose, and then try playing with the VNS settings to see if we can get better control.
We increased his Felbatol dose from 6ml/day to 7ml/day a couple of days ago. We'll see in the next 4-5 days if this has any effect.
The doctor also said that since the VNS doesn't seem to have any adverse effects at all at the current setting, that we can certainly try some stronger settings with that. He was ready to update the VNS settings yesterday, but we wanted to hold off since we had just increased his med doseage. We did increase his magnet ampage to 2.5mA, though. Even at this level, it doesn't seem to bother John at all.
John had 3 longer seizures yesterday. Still only about 5-8 seconds each, but with convulsions. The good news is that the seizure last night stopped immediately with the VNS magnet swipe. Maybe the VNS still offers us some hope!
As of 11:30 this morning, I've seen maybe 10 small "normal" seizures, but no larger ones. That is good news, as we've been seeing a larger one almost every morning lately.
We asked the doctor if maybe John just needed a low dose of Lamictal to control the longer convulsive seizures. Even though it is not considered therapeutic, he says that he sees cases all the time where a low dose of Lamictal helps kids. So, we may end up going back on a low dose of Lamictal at some point. Before we go there, though, we want to give Felbatol a shot at a higher dose, and then try playing with the VNS settings to see if we can get better control.
We increased his Felbatol dose from 6ml/day to 7ml/day a couple of days ago. We'll see in the next 4-5 days if this has any effect.
The doctor also said that since the VNS doesn't seem to have any adverse effects at all at the current setting, that we can certainly try some stronger settings with that. He was ready to update the VNS settings yesterday, but we wanted to hold off since we had just increased his med doseage. We did increase his magnet ampage to 2.5mA, though. Even at this level, it doesn't seem to bother John at all.
John had 3 longer seizures yesterday. Still only about 5-8 seconds each, but with convulsions. The good news is that the seizure last night stopped immediately with the VNS magnet swipe. Maybe the VNS still offers us some hope!
As of 11:30 this morning, I've seen maybe 10 small "normal" seizures, but no larger ones. That is good news, as we've been seeing a larger one almost every morning lately.
Wednesday, December 20, 2006
Well, John has continued to have lots of little seizures, and at least 1 larger seizure in the morning. This morning he had a 15-20 second seizure that really scared us (and him). This was his longest seizure in a year and a half. His eyes were rolled back in his head, he turned pale, and was convulsing. Maya even offered to call 911. What a good sister! The magnet didn't seem to help. But, thankfully he came out of it on his own. So, we're back to close monitoring of him, and keeping the magnet, diastat, and stopwatch close by.
Over the last couple of days, we have noticed that the magnet doesn't seem to stop the clusters as it used to, and it didn't seem to have any effect on this bigger seizure. I have tried to make him vocalize after swiping the magnet to see if we could get some indication that it is working. We just can't. The truth is, we have never been able to tell when it was on. But, I also know based on the charts that John's battery could die any day. We're crossing our fingers that it is now dead and this is why his seizures have gotten worse. We were able to get a quick appt. to check the battery tomorrow morning, and I'll update after that.
In the meantime, we are increasing his Felbatol again starting tonight.
Over the last couple of days, we have noticed that the magnet doesn't seem to stop the clusters as it used to, and it didn't seem to have any effect on this bigger seizure. I have tried to make him vocalize after swiping the magnet to see if we could get some indication that it is working. We just can't. The truth is, we have never been able to tell when it was on. But, I also know based on the charts that John's battery could die any day. We're crossing our fingers that it is now dead and this is why his seizures have gotten worse. We were able to get a quick appt. to check the battery tomorrow morning, and I'll update after that.
In the meantime, we are increasing his Felbatol again starting tonight.
Friday, December 15, 2006
John's seizures have continued to get worse. Yesterday he had two longer seizures in the morning that scared me enough that I took the day off work. Most of his seizures are still short, though he routinely has 80+ a day now that we see. So, we needed to make a change. I called the neurologist and we got the OK to increase his Felbatol dose. He was taking 5.5ml/day, and we increased that to 6ml/day. It's not much of an increase, but John didn't have any of the large seizures this morning so maybe it's helping. After 2 weeks, we can raise it to 8ml/day. That would be a big jump, and probably his max doseage of this med. We really hate increasing his meds, but he just wasn't doing very well and we can't ignore that.
We went to a meeting the other day about his transistion in to kindergarten next year. We didn't learn too much. He'll obviously be in a "self-contained" classroom, and we won't know where that is until next year. Yoshie is considering home-schooling John next year, but I think we'll wait to see what they offer before we make any decisions.
John also got his speech evaluation the other day at the therapy place. They thought he was a delayed 2 year old. Imagine their surprise when they found out he was 4.5! We already know it, but I think even the therapists are a bit taken back by the severity of his delays, especially since he looks like a normal kid. They were really surprised to hear of our trouble with getting adequate speech services through the county. But, they also said we'll likely get a lot more next year when he is school age. In any case, John was too delayed to even do any of the tests. (ie. He can't point to a kitty, or a ball when asked). But, she was very good and saw some potential in John. We'll be starting to take John to see her and the OT once a week pretty soon.
We are still continuing with the stringent diet for now, and we have just added some more supplements to the mix. We are also continuing with the herbal mix. The herbalist is trying everything she can think of and calls us frequently to assess how things are going. She suggested that we might want to go to China for more advice, but I don't think we'll be doing that. :)
We went to a meeting the other day about his transistion in to kindergarten next year. We didn't learn too much. He'll obviously be in a "self-contained" classroom, and we won't know where that is until next year. Yoshie is considering home-schooling John next year, but I think we'll wait to see what they offer before we make any decisions.
John also got his speech evaluation the other day at the therapy place. They thought he was a delayed 2 year old. Imagine their surprise when they found out he was 4.5! We already know it, but I think even the therapists are a bit taken back by the severity of his delays, especially since he looks like a normal kid. They were really surprised to hear of our trouble with getting adequate speech services through the county. But, they also said we'll likely get a lot more next year when he is school age. In any case, John was too delayed to even do any of the tests. (ie. He can't point to a kitty, or a ball when asked). But, she was very good and saw some potential in John. We'll be starting to take John to see her and the OT once a week pretty soon.
We are still continuing with the stringent diet for now, and we have just added some more supplements to the mix. We are also continuing with the herbal mix. The herbalist is trying everything she can think of and calls us frequently to assess how things are going. She suggested that we might want to go to China for more advice, but I don't think we'll be doing that. :)
Monday, December 04, 2006
John seems to be understanding and vocalizing a little better this week, but the seizures are getting worse again. Both the number and strength of the seizures has been getting worse since my last post. We're not sure what to do about it. We don't want to return to the Lamictal. For now, we are just waiting this out and hoping it gets better. If it gets any worse, we will have to do something, though. He's close to falling with some of the seizures again, and we definately don't want to go back there again.
We went to an evaluation at a private therapy place. The lady that evaluated him was very good, but she was an occupational therapist. We're going back for another evaluation with the speech therapist next week. It seemed like a nice place and I hope it works out.
We got the Santa visit out of the way early this year. John still doesn't know Santa from any other person, and it's pretty tough to get him to sit for 1 second to get a picture. Yoshie sits him there and darts away and hopes that he makes some expression that is acceptable. It looks like he's smiling here, though it was really a whining face.
We went to an evaluation at a private therapy place. The lady that evaluated him was very good, but she was an occupational therapist. We're going back for another evaluation with the speech therapist next week. It seemed like a nice place and I hope it works out.
We got the Santa visit out of the way early this year. John still doesn't know Santa from any other person, and it's pretty tough to get him to sit for 1 second to get a picture. Yoshie sits him there and darts away and hopes that he makes some expression that is acceptable. It looks like he's smiling here, though it was really a whining face.
There is an interesting show airing on PBS that talks about epilepsy. We watched it last night and it covers some of the treatments that we have tried (VNS, keto diet, drugs). You can see it online if you have a fast connection: