John continues to do amazingly well. He still has not had a single seizure since last Monday morning. And, he feels great. He's basically picked up right where he left off about 18 months ago. He's learning some new words. He's pointing at things that he wants. We can easily make him laugh. He finally has taken an interest in our cat. He is interested in books. Mostly, he has become a computer junkie. He loves http://www.kneebouncers.com. He'd play all day if we let him.
We were able to go out to eat and he sat in a high chair without his helmet. We even let him run around the carpeted area of our house without a helmet now.
It still doesn't feel real to Yoshie and I. He got better so quickly, and really unexpectedly. I don't think we believed we would ever see him like this again. We're thinking about the future again. The seizures will likely return, but I doubt we'll see the constant daily drop seizures again. He's showing us that he is still capable of learning, and I believe that will continue indefinitely now.
Tuesday, June 28, 2005
Wednesday, June 22, 2005
Unbelievable!
John hasn't had another seizure since my last post!!! It's now Wednesday afternoon, and he hasn't had a seizure since Monday morning. He's doing so well, that it is hard to believe just a few weeks ago he seemed to be going downhill quickly. I know that this could well just be temporary, but it's been such a nice break for us. If nothing else, we are re-energized and ready for whatever comes next. And, of course we have re-gained some optimism. Of course, our real hope is that we never see another seizure.
Tuesday, June 21, 2005
Great news!!
We're scared to say anything, as we know things can turn bad quickly. But, John has continued to get better and better. He has only had 4 seizures in the last 3 days! That is just unbelievable!
He's feeling better, more attentive, able to concentrate better. It's just amazing. We know enough not to get too hopeful, so we're prepared for whatever happens. But, at the same time, it feels like we've gotten our life back for the time being.
Hopefully, one day soon I'll be able to report a completely seizure free day.
He's feeling better, more attentive, able to concentrate better. It's just amazing. We know enough not to get too hopeful, so we're prepared for whatever happens. But, at the same time, it feels like we've gotten our life back for the time being.
Hopefully, one day soon I'll be able to report a completely seizure free day.
Wednesday, June 15, 2005
Good news for a change
John did have another grand mal seizure early Friday morning. This one was only about 20 seconds. That's it for the bad news.
Since John had his VNS adjusted last Wednesday, the number of seizures decreased over 4 days all the way down to only 8 seizures in one day!! This was his best day since this whole thing started over a year ago. Since then, he has remained very good, having between 10 - 16 seizures per day. That is a huge improvement. So, I think the VNS is working.
We hate to make any big changes right now, but John was still having some strong seizures where he would have to catch his breath afterwards. My gut still tells me that this is the Lamictal causing this. So, we made another small decrease in his Lamictal on Monday. He is now on 87.5mg/day. We'll give this at least a week and watch his seizure count and intensity very closely. Hopefully, the count will stay the same and the intensity will get slightly better. There is always some increased seizure activity a few days after a med decrease, so it might get worse before it gets better so we'll have to endure that first.
We know that the grand mals can come at any point these days, and they can be terrifying, so Yoshie has had family and friends stay with her at all times lately.
The other good news is that we had our IEP meeting for John. This is the meeting where the specialists meet with us and test John to determine what sort of therapy he needs in the coming year. They agreed that he needs a 1 on 1 aide. He will start his preschool in July going 2 hours, twice a week. Yoshie will stay there throughout July, then hopefully we can leave John with just the aide at that point.
Also, John turned 3 years old on the 13th. He still doesn't understand birthdays or presents, but I think he liked having all the people around. He didn't seem too interested in his presents on his b-day, but he has begun to play with his new toys over the last couple of days.
Since John had his VNS adjusted last Wednesday, the number of seizures decreased over 4 days all the way down to only 8 seizures in one day!! This was his best day since this whole thing started over a year ago. Since then, he has remained very good, having between 10 - 16 seizures per day. That is a huge improvement. So, I think the VNS is working.
We hate to make any big changes right now, but John was still having some strong seizures where he would have to catch his breath afterwards. My gut still tells me that this is the Lamictal causing this. So, we made another small decrease in his Lamictal on Monday. He is now on 87.5mg/day. We'll give this at least a week and watch his seizure count and intensity very closely. Hopefully, the count will stay the same and the intensity will get slightly better. There is always some increased seizure activity a few days after a med decrease, so it might get worse before it gets better so we'll have to endure that first.
We know that the grand mals can come at any point these days, and they can be terrifying, so Yoshie has had family and friends stay with her at all times lately.
The other good news is that we had our IEP meeting for John. This is the meeting where the specialists meet with us and test John to determine what sort of therapy he needs in the coming year. They agreed that he needs a 1 on 1 aide. He will start his preschool in July going 2 hours, twice a week. Yoshie will stay there throughout July, then hopefully we can leave John with just the aide at that point.
Also, John turned 3 years old on the 13th. He still doesn't understand birthdays or presents, but I think he liked having all the people around. He didn't seem too interested in his presents on his b-day, but he has begun to play with his new toys over the last couple of days.
Thursday, June 09, 2005
Another GTC
Well, we knew things were risky 3-6 days after a decrease in the Lamictal dosage. We decreased his dose on Sunday night. Sure enough, 3.5 days later (this morning) John had another Grand Mal seizure.
Yoshie had taken John to the park to play. He started seizing and couldn't come out of it. Yoshie screamed for help and some people that were walking in the park came over to help her. She called me and I raced home. When I got to the park, John was sleeping on a blanket, with some curious onlookers around him. Everyone was very nice and helpful. We carried him home and he slept for an hour. He's still sort of out of it today, and looks on the edge of having another big one. Hopefully we can avert that.
This one was about 1 minute in length, and he came out of it just as he was turning blue. Yoshie used the magnet and she thinks it may have helped. I also had a chance to use the magnet at lunch today when he started seizuring for a few seconds and it seemed to work.
I think the next couple of days might be tough, then hopefully we'll see an improvement - at least until the next drop from 100mg to 75mg.
Yoshie had taken John to the park to play. He started seizing and couldn't come out of it. Yoshie screamed for help and some people that were walking in the park came over to help her. She called me and I raced home. When I got to the park, John was sleeping on a blanket, with some curious onlookers around him. Everyone was very nice and helpful. We carried him home and he slept for an hour. He's still sort of out of it today, and looks on the edge of having another big one. Hopefully we can avert that.
This one was about 1 minute in length, and he came out of it just as he was turning blue. Yoshie used the magnet and she thinks it may have helped. I also had a chance to use the magnet at lunch today when he started seizuring for a few seconds and it seemed to work.
I think the next couple of days might be tough, then hopefully we'll see an improvement - at least until the next drop from 100mg to 75mg.
Another neurologist visit
Since John's GTC, we lowered his Lamictal dose to 100mg. I was sure that the doctor was going to scold us for that. The first thing I told him was that we lowered it, and I intended to lower it again to 75mg. He said, "Sounds good to me". So now we are hoping that the decrease in Lamictal will also mean no more GTC seizures. There is a good chance of some withdrawal seizures, though. So, the next couple of weeks could be tough.
He was willing to try out our theory that the VNS is causing the decrease in the number of seizures, and the Lamictal was causing the stronger seizures. So, he turned the VNS up quite a bit. It's now rapid cycling at 14 seconds on, 18 seconds off, at 1.5mA. I was uncomfortable with the amount of stimulation that he was getting (it's on 43% of the time). But, he wouldn't budge. Of course we could have demanded he change it, but he explained how he's done hundreds of them and I left there believing that he knows what he is doing. If this shows promise, it will be changed to 7 sec. on and 12 seconds off on our next visit. I'm actually more comfortable with that, because it would be stimulating him less overall. I tried to get him to go to that setting right now but he wouldn't do it.
John tolerates the VNS extremely well. It doesn't seem to bother him at all. It takes some kids many, many months to get to this level comfortably.
I also had him give us another prescription for Diastat (emergency drug for the GTC seizures). Our current dose was only 2.5mg. I was reading the patient information and it looked to me like John's dose should be 10mg, based on his age and weight. He agreed.
We asked about being referred to Seattle or LA for more testing and a 2nd opinion, and he agreed that this would be a good idea. We'll get that ball rolling in the next couple of months.
As we were leaving, I mentioned John's new seizure type: opening his mouth and turning to the left. These seizures are so minor that we almost didn't mention them. Sure enough, right after we talked about it John did it right in front of the doctor, then preceded to have a drop seizure. The doctor immediately said that this might be significant. He said that looks like a focal point, and he wants more testing done (probably in Seattle). I told him that we already had the full workup to look for a focal point and there was none. He said, "we need to have someone else take a look". I hope this also means that they will be willing to do a PET or SPECT scan now. They wouldn't do it before as they were positive that there wasn't a focal point.
Anyway, it's only a glimmer of hope, but if they could find a focal point, that would be HUGE! If the focal point is in an easily accessible location, they can go in and remove that part of the brain. I never thought we'd be wishing for brain surgery, but that's exactly how we feel. This type of surgery has a better than 50% chance of curing the epilepsy.
He was willing to try out our theory that the VNS is causing the decrease in the number of seizures, and the Lamictal was causing the stronger seizures. So, he turned the VNS up quite a bit. It's now rapid cycling at 14 seconds on, 18 seconds off, at 1.5mA. I was uncomfortable with the amount of stimulation that he was getting (it's on 43% of the time). But, he wouldn't budge. Of course we could have demanded he change it, but he explained how he's done hundreds of them and I left there believing that he knows what he is doing. If this shows promise, it will be changed to 7 sec. on and 12 seconds off on our next visit. I'm actually more comfortable with that, because it would be stimulating him less overall. I tried to get him to go to that setting right now but he wouldn't do it.
John tolerates the VNS extremely well. It doesn't seem to bother him at all. It takes some kids many, many months to get to this level comfortably.
I also had him give us another prescription for Diastat (emergency drug for the GTC seizures). Our current dose was only 2.5mg. I was reading the patient information and it looked to me like John's dose should be 10mg, based on his age and weight. He agreed.
We asked about being referred to Seattle or LA for more testing and a 2nd opinion, and he agreed that this would be a good idea. We'll get that ball rolling in the next couple of months.
As we were leaving, I mentioned John's new seizure type: opening his mouth and turning to the left. These seizures are so minor that we almost didn't mention them. Sure enough, right after we talked about it John did it right in front of the doctor, then preceded to have a drop seizure. The doctor immediately said that this might be significant. He said that looks like a focal point, and he wants more testing done (probably in Seattle). I told him that we already had the full workup to look for a focal point and there was none. He said, "we need to have someone else take a look". I hope this also means that they will be willing to do a PET or SPECT scan now. They wouldn't do it before as they were positive that there wasn't a focal point.
Anyway, it's only a glimmer of hope, but if they could find a focal point, that would be HUGE! If the focal point is in an easily accessible location, they can go in and remove that part of the brain. I never thought we'd be wishing for brain surgery, but that's exactly how we feel. This type of surgery has a better than 50% chance of curing the epilepsy.
Wednesday, June 08, 2005
1 year anniversary
John's 1 year anniversary of his epilepsy diagnosis came and went without any fanfare. His seizures are obviously worse now than they were a year ago. Cognitively, I think he's stayed right at about an 18month level. Of course we never thought we'd still be dealing with this a year later, but at the same time I know things could get a lot worse.
Stats for the year:
- over 17,000 seizures that we've seen. Half just head drops, and half full on drops.
- 1 Grand Mal seizure
- 6 failed drugs: Ativan, Depakote/Depakene, Tranxene, Topamax, Felbatol, Lamictal. (plus a trial of Pyridoxine).
- 9 months of the ketogenic diet.
- VNS surgery
- 2 neurologists
- 3 visits to the ER
- 3 visits to the urgent care clinic
- 1 ambulance ride
- Tests: 3 EEGs (1 short, and 2 long), MRI, CT Scan, Spinal tap, over a dozen blood draws
- Other therapies: homeopathy, chiropractic, naturopath.
Stats for the year:
- over 17,000 seizures that we've seen. Half just head drops, and half full on drops.
- 1 Grand Mal seizure
- 6 failed drugs: Ativan, Depakote/Depakene, Tranxene, Topamax, Felbatol, Lamictal. (plus a trial of Pyridoxine).
- 9 months of the ketogenic diet.
- VNS surgery
- 2 neurologists
- 3 visits to the ER
- 3 visits to the urgent care clinic
- 1 ambulance ride
- Tests: 3 EEGs (1 short, and 2 long), MRI, CT Scan, Spinal tap, over a dozen blood draws
- Other therapies: homeopathy, chiropractic, naturopath.
Sunday, June 05, 2005
First Tonic/clonic
Thursday night, I was all ready to finally post a positive report. He had 4 days of improving seizure numbers. Thursday, he had the fewest number of seizures in a day since last September. Friday morning started pretty good. He was in good spirits and only had a couple of small seizures in the morning. At about 7:45 he fell over sideways and I caught him. He started to convulse, and seemed to try to come out of it a couple of times in the first 5-10 seconds but couldn't quite stop it. He continued to shake violently as I carried him into the living room and eventually outside. He wasn't stopping. At this point, his lips were blue, he was foaming at the mouth, and his face looked completely lifeless. We always knew that a Grand Mal seizure was likely to happen at some point, and I was prepared for the prolonged convulsions. However, I was not prepared for the look on his face. I really thought he was going to die right there. Yoshie had already dialed 911 and I took over the phone while Yoshie took John. At this point, he wasn't shaking anymore, but was completely limp and lifeless. Thankfully, his color started to come back pretty quickly. The ambulance and fire engine arrived in just a few minutes and by the time they got here he was sound asleep on our living room floor. There were 8-10 paramedics in our living room, and they gave John some oxygen and checked his glucose levels, etc. Everything was fine, but since this was his first generalized tonic/clonic (GTC) they wanted to take him to the hospital for observation. Yoshie rode with John in the ambulance. Many of our neighbors had gathered in our driveway and they all volunteered to help out with Maya. So, Maya actually got to school as normal while I drove to the hospital.
John was still asleep when I got to the hospital, but he woke up a short time later. Once he woke up, he seemed completely back to himself. So, we were soon able to leave. I think we were home by 9:30am.
At first, I thought John's convulsions lasted about 2 minutes, and that is what I told the paramedics. Yoshie has since convinced me that the actual convulsions probably lasted more like 75 seconds, and he was limp for another minute after that. It seemed like an eternity, though. And, I never even thought to use the VNS magnet. Doh!
I talked to our neurologist on Friday, and he didn't want to change anything with the meds right now. The reason being that the NUMBER of seizures that John is having is greatly improved. However, I still think the total energy released from the seizures is the same. He thinks that the tonic/clonics are just a progression of John's epilepsy. I feel like the coincidence is just too great that this happened 5 days after increasing his Lamictal to 125mg.
Since Friday, John has had a number of seizures that seemed like they were going to turn into full blown GTCs again, but he either came out of them after a few seconds, or we were able to stop them with the VNS magnet. Still, they are super scary, and we decided tonight that we'd rather have more smaller seizures, if given the choice. So, against the doctors suggestion, we took out 25mg of his Lamictal today. There is a decent chance that the decrease in seizure numbers is due to the VNS, and not to Lamictal at all. We want to know this for sure before we risk another seizure like that. So, we may end up going back up on the Lamictal in the future, but for now I want to see what he is like at 50mg/day. It will take some time to get down to 50mg/day, and we expect more withdrawal seizures along the way. But, we're crossing our fingers that the number of seizures remains low, while the severity improves. It could happen, but we've also learned not to get too optimistic.
John was still asleep when I got to the hospital, but he woke up a short time later. Once he woke up, he seemed completely back to himself. So, we were soon able to leave. I think we were home by 9:30am.
At first, I thought John's convulsions lasted about 2 minutes, and that is what I told the paramedics. Yoshie has since convinced me that the actual convulsions probably lasted more like 75 seconds, and he was limp for another minute after that. It seemed like an eternity, though. And, I never even thought to use the VNS magnet. Doh!
I talked to our neurologist on Friday, and he didn't want to change anything with the meds right now. The reason being that the NUMBER of seizures that John is having is greatly improved. However, I still think the total energy released from the seizures is the same. He thinks that the tonic/clonics are just a progression of John's epilepsy. I feel like the coincidence is just too great that this happened 5 days after increasing his Lamictal to 125mg.
Since Friday, John has had a number of seizures that seemed like they were going to turn into full blown GTCs again, but he either came out of them after a few seconds, or we were able to stop them with the VNS magnet. Still, they are super scary, and we decided tonight that we'd rather have more smaller seizures, if given the choice. So, against the doctors suggestion, we took out 25mg of his Lamictal today. There is a decent chance that the decrease in seizure numbers is due to the VNS, and not to Lamictal at all. We want to know this for sure before we risk another seizure like that. So, we may end up going back up on the Lamictal in the future, but for now I want to see what he is like at 50mg/day. It will take some time to get down to 50mg/day, and we expect more withdrawal seizures along the way. But, we're crossing our fingers that the number of seizures remains low, while the severity improves. It could happen, but we've also learned not to get too optimistic.
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