The title says it all. It's been 5 1/2 weeks since we last saw a seizure.
He's just having a good time being able to be a kid again.
He is still having some issues with learning. I don't think he's fully capable of learning new words yet. It might just take time, or it might just be the way things are. We have no idea what underlying problem caused the seizures, and we don't know if all of the seizures have causes some brain damage. It doesn't really matter. He's seizure free, and we couldn't be happier.
The neurologist got back to me regarding the VNS settings. Thankfully, Cyberonics said that his settings were perfectly safe. They said that their advice would be not to touch anything. Seizure freedom is very hard to attain, and once lost there is no guarantee that you can get it back. We agree completely. So, if he stays seizure free, he doesn't need to go back to the neurologist until 2006.
His early intervention preschool has been a bit of a disappointment. It's just like any other preschool I guess, in that they don't teach much of anything. Really, it seems to be just a place to drop the kids off so that the parents can get a rest. Some of the kids have behavior issues too, and it scares John. I think what John needs is intensive speech therapy. So, I may have to try to set up a meeting to discuss our concerns. We will also be getting private speech therapy in addition to whatever they provide. The other problem with this preschool is that it is from 1:30 to 3:30 in the afternoon. This is prime nap time for John. With his Lamictal already causing sleep problems, we can't afford to interrupt his naps. So, he's already missed some classes, or part of classes. Maybe we can get him put in to an earlier class.
Thursday, July 28, 2005
Tuesday, July 19, 2005
4 weeks seizure free
We've still seen no sign at all of any seizure activity since June 21. He hasn't had to wear his helmet for 2 weeks now. It's amazing.
We went to see John's VNS surgeon and his neurologist yesterday. The visit with the surgeon (actually just his nurse) was just to make sure that everything was OK. The cuts are healing fine so it was a quick appointment. They were really happy to see John doing so well. I don't think they get much of a chance to see the kids after they put the VNS in, so I think they were really happy to have the chance to see how they changed his life.
We made the appt. with the neurologist because I was a bit concerned about the duty cycle of John's VNS, and we had some questions about the Lamictal, etc. When we told the doctor that John was only on 75mg of Lamictal, and hasn't had a seizure in 4 weeks, he shook his head in disbelief. He really looked over the charts that I had brought in, as I don't think he fully believed himself that the VNS would have such a dramatic effect. Before John got his VNS, we had asked if he had any patients that had a very successful outcome. He said there was one kid who went from 300 to 30 seizures per day. I think John might now be his best example of the possiblities.
I brought in the physicians manual for the VNS, and had the parts highlighted that showed that a duty cycle of over 50% was not advised (John's is 56%). He said that he's never heard of a single case of nerve damage, and that Cyberonics knows what he is doing, and that many kids are on an even greater duty cycle, etc. But, you couldn't argue with what that manual said, so he is going to call Cyberonics and we'll find out later this week what they say. I really hope that they can tell us that his current settings are safe. We don't want to touch anything if we don't have to.
So, he didn't change the settings on the VNS, but if Cyberonics says his current settings are risky, we can get them changed at any time. He did a lead test of the unit, and it was a very good 2. The battery was at 3. It runs out at 7. At first I thought that sounded terrible, but he assured me that they usually start at 2, so his is fine. We expect it to last about 2 years at the current setting.
We asked at what point we could consider weaning the Lamictal. We were expecting him to say that we should never wean it, or wait at least 6 months. But, I think he believes (like we do) that the VNS is solely responsible for John's improvement. So, he said we could start weaning in 1 month and take out 1/2 pill per week. Geez, even I'm not comfortable with an aggressive schedule like that. So, now we know we can wean that with the doctors blessings whenever we are comfortable doing so. I think we'll wait a few months, then go much more slowly then he mentioned.
He said we didn't need to see him again in 6 months. Woohoo!
John also started his preschool today. Yoshie will stay with him for the first couple of classes, but since John has a 1 on 1 aide hopefully Yoshie will be able to let him stay by himself after awhile.
We are also going to get John some speech therapy now that I think he is capable of learning again. I sent the list of approved therapists to our doctor so that he could give us a recommendation. Hopefully we can get that started pretty soon.
We went to see John's VNS surgeon and his neurologist yesterday. The visit with the surgeon (actually just his nurse) was just to make sure that everything was OK. The cuts are healing fine so it was a quick appointment. They were really happy to see John doing so well. I don't think they get much of a chance to see the kids after they put the VNS in, so I think they were really happy to have the chance to see how they changed his life.
We made the appt. with the neurologist because I was a bit concerned about the duty cycle of John's VNS, and we had some questions about the Lamictal, etc. When we told the doctor that John was only on 75mg of Lamictal, and hasn't had a seizure in 4 weeks, he shook his head in disbelief. He really looked over the charts that I had brought in, as I don't think he fully believed himself that the VNS would have such a dramatic effect. Before John got his VNS, we had asked if he had any patients that had a very successful outcome. He said there was one kid who went from 300 to 30 seizures per day. I think John might now be his best example of the possiblities.
I brought in the physicians manual for the VNS, and had the parts highlighted that showed that a duty cycle of over 50% was not advised (John's is 56%). He said that he's never heard of a single case of nerve damage, and that Cyberonics knows what he is doing, and that many kids are on an even greater duty cycle, etc. But, you couldn't argue with what that manual said, so he is going to call Cyberonics and we'll find out later this week what they say. I really hope that they can tell us that his current settings are safe. We don't want to touch anything if we don't have to.
So, he didn't change the settings on the VNS, but if Cyberonics says his current settings are risky, we can get them changed at any time. He did a lead test of the unit, and it was a very good 2. The battery was at 3. It runs out at 7. At first I thought that sounded terrible, but he assured me that they usually start at 2, so his is fine. We expect it to last about 2 years at the current setting.
We asked at what point we could consider weaning the Lamictal. We were expecting him to say that we should never wean it, or wait at least 6 months. But, I think he believes (like we do) that the VNS is solely responsible for John's improvement. So, he said we could start weaning in 1 month and take out 1/2 pill per week. Geez, even I'm not comfortable with an aggressive schedule like that. So, now we know we can wean that with the doctors blessings whenever we are comfortable doing so. I think we'll wait a few months, then go much more slowly then he mentioned.
He said we didn't need to see him again in 6 months. Woohoo!
John also started his preschool today. Yoshie will stay with him for the first couple of classes, but since John has a 1 on 1 aide hopefully Yoshie will be able to let him stay by himself after awhile.
We are also going to get John some speech therapy now that I think he is capable of learning again. I sent the list of approved therapists to our doctor so that he could give us a recommendation. Hopefully we can get that started pretty soon.
Tuesday, July 05, 2005
2 weeks!!
John hasn't had any seizure activity at all for over 2 weeks now. He continues to get better in every respect. His turn-around is miraculous. I don't want to jinx things by being overly optimistic, but he really is doing well right now.
I think this graph of his seizures speaks volumes (click to get the full size pic):
As you can see, his improvement was dramatic and fast.
Here is a picture of him taken this week:
John still isn't sleeping as much as a 3 year old should. I don't know if it's just because he is so excited these days, or if the Lamictal is causing this. It's obviously a minor issue, but enough of an issue that I'd like to try to lower his Lamictal after a few months if he remains seizure-free. His VNS setting also worries me a little. His duty cycle is officially 56%. The formula is time on (14 sec), + 4 seconds (2 seconds ramp up and ramp down) divided by time on (14) + time off (18). Cyberonics warns that you should keep the duty cycle below 50%, but then they advertise that you can go down to 7 seconds on, 12 seconds off (58% duty cycle). I contacted Cyberonics about this, but of course they wouldn't tell me anything. In any case, I'm not really concerned about this. But, it's another thing to talk to the neurologist about.
I think this graph of his seizures speaks volumes (click to get the full size pic):
As you can see, his improvement was dramatic and fast.
Here is a picture of him taken this week:
John still isn't sleeping as much as a 3 year old should. I don't know if it's just because he is so excited these days, or if the Lamictal is causing this. It's obviously a minor issue, but enough of an issue that I'd like to try to lower his Lamictal after a few months if he remains seizure-free. His VNS setting also worries me a little. His duty cycle is officially 56%. The formula is time on (14 sec), + 4 seconds (2 seconds ramp up and ramp down) divided by time on (14) + time off (18). Cyberonics warns that you should keep the duty cycle below 50%, but then they advertise that you can go down to 7 seconds on, 12 seconds off (58% duty cycle). I contacted Cyberonics about this, but of course they wouldn't tell me anything. In any case, I'm not really concerned about this. But, it's another thing to talk to the neurologist about.
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