Since my last post, we have increased his Keppra to 2.0 ml, twice a day. He went through a tough time with bigger seizures so we had to do the increase. Thankfully, this really helped his seizures. He still has many daily seizures, but they are back to being small again. He seems to have bigger seizures during sleep, though. As expected, the Keppra caused John to be a wild child for awhile. He would change moods instantly, and get very easily frustrated. He would bang his head against the floor or wall to the point of hurting himself. This lasted for a few weeks, but is slowly getting better.
School is going fine. He has really taken a liking to two of his teachers. I think he enjoys his school and is doing well.
There is a lot of snow around here now, and John has been having a lot of fun playing in the snow. Mostly, he just loves to eat the snow. I'll post pictures later. The good news is that he wears his hat and gloves without any issue now.
Tuesday, December 23, 2008
Thursday, October 02, 2008
Dr. Visit
We had an appt. with John's neurologist on Monday. We got his VNS turned up to 1.5mA, on for 30 seconds, off for 3 minutes. We're also going to increase his Keppra to 1.5ml twice a day. John has been sick since Monday, so we are holding off on this increase until he feels better. Hopefully, these changes will help with his lingering seizures, and also his development.
Wednesday, September 24, 2008
Cycling
I finally got up the nerve to try riding with John. Of course he loves it, and wants to go every day. I still worry about him having a seizure while riding or trying to jump off while we're moving. So far, he has been OK, though. He hasn't learned to pedal yet, but we're working on it. He likes to stand on the pedals and try to grab things as we go past, which of course makes the whole thing quite unstable. So, we keep it real slow.
For some reason, he really wants to ride Yoshie's bike. Of course it is way too big for him, but he still loves to have me push him around on it. He won't ride his little bike anymore. We'll have to get training wheels for Maya's bike and see if he'll ride that one.
For some reason, he really wants to ride Yoshie's bike. Of course it is way too big for him, but he still loves to have me push him around on it. He won't ride his little bike anymore. We'll have to get training wheels for Maya's bike and see if he'll ride that one.
First day of school
I'm a little late posting about John's school, but here he is on his first day of first grade. This was also Maya's first day of fourth grade:
John takes the bus for about 30 minutes each way. Here he is looking a little nervous on his first day:
So far, school has gone pretty well. At least we haven't been called to pick him up yet. :)
I think he's a handful for them, especially on the playground. The teacher has been really good about keeping us up to date with what he does each day. I stopped by the school one day when we forgot to give him his morning medicine and he looked happy.
He is getting a little too comfortable on the bus, and they have had to use the harness seatbelt to keep him in his seat. I don't like that, but safety first I guess.
John takes the bus for about 30 minutes each way. Here he is looking a little nervous on his first day:
So far, school has gone pretty well. At least we haven't been called to pick him up yet. :)
I think he's a handful for them, especially on the playground. The teacher has been really good about keeping us up to date with what he does each day. I stopped by the school one day when we forgot to give him his morning medicine and he looked happy.
He is getting a little too comfortable on the bus, and they have had to use the harness seatbelt to keep him in his seat. I don't like that, but safety first I guess.
Done with Felbatol
On Aug. 27, we gave John his last dose of Felbatol. So, it's been almost a month now, and we didn't really see much change. He still has seizures every day. Some days we see just a few, other days we see a hundred or more. But, these are still all the brief myoclonics and haven't progressed any further. John is currently only taking 1.2ml of Keppra twice a day. We see the neurologist again next week. I'm guessing we'll increase the Keppra, or change the VNS settings to try to reduce the myoclonics that he is having.
Friday, August 22, 2008
Felbatol reduction
John's myoclonic seizures have been getting slightly worse all summer long. He's still doing great, but we felt it was time to show the doctor what he was now experiencing.
We sent him these 2 videos:
After seeing these videos, he agreed that these were definately seizures (something he wasn't willing to admit a few months ago). Despite this, we got the OK to lower his Felbatol level, and hopefully get rid of it altogether in the near future. He just said to watch John carefully and if he starts falling or having Tonic-Clonics then we need to stop the reduction. It's been almost a week since we lowered the drug to 1ml, twice a day, and we haven't seen any problems yet.
We sent him these 2 videos:
After seeing these videos, he agreed that these were definately seizures (something he wasn't willing to admit a few months ago). Despite this, we got the OK to lower his Felbatol level, and hopefully get rid of it altogether in the near future. He just said to watch John carefully and if he starts falling or having Tonic-Clonics then we need to stop the reduction. It's been almost a week since we lowered the drug to 1ml, twice a day, and we haven't seen any problems yet.
Tuesday, August 19, 2008
Summer trips
Here's some pictures from our road trips last week:
Trillium Lake
Trillium Lake
John has been a good car traveler lately.
This is actually at our local rec center
At the beach. John got soaked.
Hotel pool
Big chowder at Mo's
Dodge Park
Eating some Haagen Daz
Trillium Lake
Trillium Lake
John has been a good car traveler lately.
This is actually at our local rec center
At the beach. John got soaked.
Hotel pool
Big chowder at Mo's
Dodge Park
Eating some Haagen Daz
Friday, August 01, 2008
Summer 2008
I haven't posted in awhile. As usual, that means things are pretty much unchanged from my last post. John continues to have several clusters of myoclonic seizures every day, but he doesn't fall and seems to recover quickly. So, these days, we are much more focused on his development than his seizures.
John remains on 1.2 ml of keppra twice a day and 2ml of Felbatol twice a day. We might ask about lowering the Felbatol a little more. We don't want to interfere with his relatively good status these days, but we sure would like to do all we can to help him learn.
John turned 6 in June and he had a party at a local climbing gym. He wouldn't wear the harness, so he didn't get to climb any of the big walls, but he had fun running around and climbing the small walls.
Yesterday was the last day of summer school. I think he was just getting used to it in the past week or so, so it's too bad that it is over. He starts first grade next month at a special needs class about 15 minutes from our house. We hope it works out well, though we have out doubts.
He has also been receiving private therapy from 2 different therapists. We finally decided to drop the one that was 90% covered by insurance and stick with the other one that we think does a much better job. It's expensive, but worth the extra cost. Since John still rarely says anything spontaneously, we are trying other methods to get him to communicate. He's been doing quite well with the picture exchange system, and does a little sign language. We're also looking in to getting him an electronic device where he can push buttons to let us know what he is trying to say. We have a specialist coming to our house in the next couple of weeks to evaluate John for these devices, then if that goes well we'll try to get insurance to cover this as they are very expensive.
I'm on vacation all next week and we'll be taking some car trips and hopefully getting in some things that John enjoys (ie swimming!).
John remains on 1.2 ml of keppra twice a day and 2ml of Felbatol twice a day. We might ask about lowering the Felbatol a little more. We don't want to interfere with his relatively good status these days, but we sure would like to do all we can to help him learn.
John turned 6 in June and he had a party at a local climbing gym. He wouldn't wear the harness, so he didn't get to climb any of the big walls, but he had fun running around and climbing the small walls.
Yesterday was the last day of summer school. I think he was just getting used to it in the past week or so, so it's too bad that it is over. He starts first grade next month at a special needs class about 15 minutes from our house. We hope it works out well, though we have out doubts.
He has also been receiving private therapy from 2 different therapists. We finally decided to drop the one that was 90% covered by insurance and stick with the other one that we think does a much better job. It's expensive, but worth the extra cost. Since John still rarely says anything spontaneously, we are trying other methods to get him to communicate. He's been doing quite well with the picture exchange system, and does a little sign language. We're also looking in to getting him an electronic device where he can push buttons to let us know what he is trying to say. We have a specialist coming to our house in the next couple of weeks to evaluate John for these devices, then if that goes well we'll try to get insurance to cover this as they are very expensive.
I'm on vacation all next week and we'll be taking some car trips and hopefully getting in some things that John enjoys (ie swimming!).
Tuesday, June 10, 2008
lots going on
It's been a while since I've posted, and quite a bit has happened in the last month.
We have continued to lower the Felbatol level. He is now at 5ml/day, down from a high of 12ml/day last year. John does continue to have a lot of the myoclonic jerks. In fact, they are getting more frequent and a little stronger. But, since these seizures don't really seem to phase him much, we're opting for the lower drug level anyway in the hopes that it will help him to learn.
John does seem to slowly make progress. He has taken an interest in picture books finally and will usually repeat the words. He still has a hard time pointing at a picture when asked, but can sometimes do it with real familiar objects. He's getting better and better at riding his bike, but still needs someone to walk next to him at all times. And he refuses to wear a helmet, which we have to rectify soon.
It's been over 1 year now since we've seen a grand mal seizure! That's a pretty good milestone. I just wish we could get rid of these myoclonics as well.
And, it's now been 4 years since this whole thing started.
We got John's placement for 1st grade awhile ago. We visited the school and we weren't very happy with it. John was placed in the lowest level of special needs. It's really sad to go visit those classrooms. We tried to fight it, and had another IEP meeting, and visited another school. Unfortunately, the other class was just as bad or worse. So, after all that we ended up back with the original placement. They explained all of the different levels of special needs and it just didn't seem like John fit in any of them. So, the default is to put him in the lowest level. We'll continue trying to push John. It's our hope that he can learn to communicate better and we can eventually get him in to a better class. It's hard to believe my son belongs in that class, especially since he was so bright in his first couple of years. It's amazing how things can change so quickly.
John's birthday is coming up, and we're going to have a party at a rock climbing gym. I'm sure he'll love that!
School gets out for the summer this week. John will be in summer school for 6 weeks, and we have 2 other therapists that he will be seeing. Plus, Maya is signed up for swimming, cooking class, pottery, Japanese school, and piano. So, the summer will be busy!
We have continued to lower the Felbatol level. He is now at 5ml/day, down from a high of 12ml/day last year. John does continue to have a lot of the myoclonic jerks. In fact, they are getting more frequent and a little stronger. But, since these seizures don't really seem to phase him much, we're opting for the lower drug level anyway in the hopes that it will help him to learn.
John does seem to slowly make progress. He has taken an interest in picture books finally and will usually repeat the words. He still has a hard time pointing at a picture when asked, but can sometimes do it with real familiar objects. He's getting better and better at riding his bike, but still needs someone to walk next to him at all times. And he refuses to wear a helmet, which we have to rectify soon.
It's been over 1 year now since we've seen a grand mal seizure! That's a pretty good milestone. I just wish we could get rid of these myoclonics as well.
And, it's now been 4 years since this whole thing started.
We got John's placement for 1st grade awhile ago. We visited the school and we weren't very happy with it. John was placed in the lowest level of special needs. It's really sad to go visit those classrooms. We tried to fight it, and had another IEP meeting, and visited another school. Unfortunately, the other class was just as bad or worse. So, after all that we ended up back with the original placement. They explained all of the different levels of special needs and it just didn't seem like John fit in any of them. So, the default is to put him in the lowest level. We'll continue trying to push John. It's our hope that he can learn to communicate better and we can eventually get him in to a better class. It's hard to believe my son belongs in that class, especially since he was so bright in his first couple of years. It's amazing how things can change so quickly.
John's birthday is coming up, and we're going to have a party at a rock climbing gym. I'm sure he'll love that!
School gets out for the summer this week. John will be in summer school for 6 weeks, and we have 2 other therapists that he will be seeing. Plus, Maya is signed up for swimming, cooking class, pottery, Japanese school, and piano. So, the summer will be busy!
Monday, May 05, 2008
Felbatol level
At our last doctor visit, we had a chance to see the EEG and how it correlated to John's seizures. John is definately still having seizures, but for some reason the EEG does not go crazy during the times that we see the seizures. It's pretty bad at other times though, when we don't see anything. As bad as his EEG is (especially during sleep), it's still a big improvement over his previous EEG's. Because of this, and the fact that the seizures he currently has don't seem to phase him that much, we decided to slowly lower his Felbatol. Since it's clear we can't stop the seizures completely with the drugs, we'd rather have him on fewer drugs even if the current seizures get a little worse. Obviously if he goes back to having Grand Mals or drop seizures we will do anything and everything to stop those. I don't think that is going to happen, though.
So, as of today John is on 6mg per day of Felbatol. This is exactly half of the dose he was on in December. So far, we haven't seen any real worsening of the seizures. And, I think we have seen some real improvements in other areas.
Talking is just not John's thing, but he seems to understand more and more of what we tell him. He also can almost ride his bike now (with training wheels). I tried forever to teach him how to pedal but he just couldn't get it and really wasn't interested. He's finally getting the hang of it, and actually likes to ride his bike now.
So, as of today John is on 6mg per day of Felbatol. This is exactly half of the dose he was on in December. So far, we haven't seen any real worsening of the seizures. And, I think we have seen some real improvements in other areas.
Talking is just not John's thing, but he seems to understand more and more of what we tell him. He also can almost ride his bike now (with training wheels). I tried forever to teach him how to pedal but he just couldn't get it and really wasn't interested. He's finally getting the hang of it, and actually likes to ride his bike now.
Monday, March 10, 2008
Climbing
On Saturday, our friend Rick offered to take us to the Portland Rock Gym. He knows how to do the belaying, so John and Michael (his son) got to take turns climbing the big walls. Of course John loved going up.
I got a little worried when he got way up there, as I didn't know if he would try to go over the edge. So, Rick tried to get him lowered, but he wanted none of that and became frustrated. Finally he just kind of camped out up there and started humming "I'm a little teapot". He ignored my requests to come down. A worker finally went up and coaxed him down. In hindsight, I suspect he would have come down on his own if we had let him go to the very top. But still, I felt a little helpless since there is no way I could go up after him. I think Yoshie and I are going to take the class so we can do the belaying next time. I'm guessing Yoshie and Maya would also enjoy the climbing.
I got a little worried when he got way up there, as I didn't know if he would try to go over the edge. So, Rick tried to get him lowered, but he wanted none of that and became frustrated. Finally he just kind of camped out up there and started humming "I'm a little teapot". He ignored my requests to come down. A worker finally went up and coaxed him down. In hindsight, I suspect he would have come down on his own if we had let him go to the very top. But still, I felt a little helpless since there is no way I could go up after him. I think Yoshie and I are going to take the class so we can do the belaying next time. I'm guessing Yoshie and Maya would also enjoy the climbing.
VNS
Wednesday, February 27, 2008
EEG and VNS surgery
Everything went as planned. We are back home and John is doing fine.
We arrived at the hospital at 7:30 Monday morning. No mix-ups this time, so we got a room pretty quickly. The tech came in pretty early to glue the EEG leads on. As expected, this was the worst part of the whole day. It took several of us to hold him down and he was pretty unhappy for the 45 minutes or so that it took.
He started having seizures right when she was finished, so we had the tech start recording immediately. So, the first few seconds of the recording should have at least one seizure on it. Surprisingly, once the leads were all on and his head was wrapped up, he didn't seem to mind. He carried on as usual just watching videos and running around. He only tried to grab at his head a couple of times, and we were able to distract him pretty easily.
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We didn't see any seizures for most of the day, and we were getting worried. But, he did finally have a small cluster of seizures in the evening. This was much smaller than we normally see, but we were hopeful that it would be enough to determine if there was a focal point or not.
John wouldn't allow anyone to take his vitals. He especially hated the blood pressure cuff. They finally had to give up and do it in the middle of the night while he was sleeping.
John had to give blood around 8:30, then I went home. He didn't sleep very well, and was awake for a couple of hours during the night, so John and Yoshie ended up very tired on Tuesday.
I arrived back at the hospital at 5:45am, just as the tech was coming in to remove the leads. Of course John didn't like this, but it went pretty quickly. He enjoyed his freedom after that and we spent some time walking around the hospital. As expected, he had a significant cluster of seizures during this time.
Just after 7:00am he was wheeled down for surgery. He took his calming medicine without problem this time. Whew! Last time they had to resort to forcing it up his nose. He got very drunk-like, and they took him away at 7:55. Yoshie and I went to wait in the surgery waiting area.
John's neurologist found us in the waiting area and gave us the results of the EEG. Apparently, his team had already studied them that morning. He said overall that John's EEG was dramatically better than it ever has been. He said that his brain wave rhythm had matured, and the background slowing had improved. He said there were times of some normal sleep rhythms - maybe for the first time ever. And, he said the the seizures themselves were far less severe. In fact, he said that if he were basing his findings on the EEG alone, he probably wouldn't classify these discharges as seizures at all. Since these discharges are associated with head drops, they are certainly still seizures, but are a big improvement over the seizures he's been having for the last 3 years. He said that he and his team believe that John's seizures originate in the thalamus area of the brain. This is an area deep in the brain that cannot be accessed. So, that obviously rules out any more testing for a surgery option. He said the best course of action for this type of seizure is VNS and drugs, which is exactly what we're already doing.
We don't know why John got better. It could be the Keppra, or it could be that he is just growing out of this. We also asked about John's lack of development, even with this improvement. He said that it could very well be the underlying issue that is causing all of this. Or, it could be the drugs that John is on. So, he said his goal is to get John on as little medication as we can, which was music to our ears. John really has seemed more alert since we lowered his Felbatol level, so we're really hopeful that further lowering this drug will help even more.
While we were talking to the neurologist, the neurosurgeon came in and told us that everything went fine. He said the leads were OK, so they only needed to do the generator replacement. He said that John was already starting to wake up so we'd be able to see him soon. That was 9:30.
At around 10am, a nurse came out and told us that John was just starting to wake up, and we'd be able to see him soon. She had us go down and get his new prescriptions (antibiotic and pain meds) while we were waiting. Around 10:30, the neurologist came back and said he had just turned on John's VNS. He set is really low compared to what it used to be. It is now set at 1mA, on for 30 seconds each 5 minutes. He said we'd increase it in a couple of weeks but he has no intention of going to the type of settings that John had previously. He also said that John was waking up and we'd be able to see him soon.
At 11:10, I finally asked reception for a status and they were able to take us back to see him immediately. Sure enough, he was half-awake. We tried to get him to drink some liquids so that his IV could be removed (it was driving him crazy). He watched a little TV, and fell back asleep.
At around 1pm, the nurse came and said we could wait for him to wake up, or we could take him home and let him sleep. We opted for the latter. I carried him down to the car and we went home. We were home by 2pm. Once we got home, John went back to his normal ways. I actually had to stop him from climbing his climbing wall and jumping off the couch. It was as if nothing had happened to him. We didn't even give him any pain medicine until bed time as he didn't seem to be in any pain.
Today (Wednesday) he seems completely fine. He doesn't know that he has a big cut in his chest, and we're hiding it from him. I think if he saw it, he would try to remove it. But, it doesn't seem to bother him at all so far. I gave him a dose of the pain med first thing in the morning, really just as a precaution. I'm guessing we won't have to give him any more at all. We even got out for a little hike today. He grabbed some stinging nettles, which is bothering him more than anything right now. So I think it is fair to say that it all went better than expected.
We'll go back in a couple of weeks to increase his VNS settings, and then we'll hopefully start decreasing the Felbatol shortly thereafter.
One really promising sign is that the VNS magnet has appeared to stop John's seizure clusters on two occasions today. I have a good feeling that we're going to be able to go to just the VNS and a low dose of Keppra for long term treatment.
We arrived at the hospital at 7:30 Monday morning. No mix-ups this time, so we got a room pretty quickly. The tech came in pretty early to glue the EEG leads on. As expected, this was the worst part of the whole day. It took several of us to hold him down and he was pretty unhappy for the 45 minutes or so that it took.
He started having seizures right when she was finished, so we had the tech start recording immediately. So, the first few seconds of the recording should have at least one seizure on it. Surprisingly, once the leads were all on and his head was wrapped up, he didn't seem to mind. He carried on as usual just watching videos and running around. He only tried to grab at his head a couple of times, and we were able to distract him pretty easily.
.JPG)
.JPG)
We didn't see any seizures for most of the day, and we were getting worried. But, he did finally have a small cluster of seizures in the evening. This was much smaller than we normally see, but we were hopeful that it would be enough to determine if there was a focal point or not.
John wouldn't allow anyone to take his vitals. He especially hated the blood pressure cuff. They finally had to give up and do it in the middle of the night while he was sleeping.
John had to give blood around 8:30, then I went home. He didn't sleep very well, and was awake for a couple of hours during the night, so John and Yoshie ended up very tired on Tuesday.
I arrived back at the hospital at 5:45am, just as the tech was coming in to remove the leads. Of course John didn't like this, but it went pretty quickly. He enjoyed his freedom after that and we spent some time walking around the hospital. As expected, he had a significant cluster of seizures during this time.
Just after 7:00am he was wheeled down for surgery. He took his calming medicine without problem this time. Whew! Last time they had to resort to forcing it up his nose. He got very drunk-like, and they took him away at 7:55. Yoshie and I went to wait in the surgery waiting area.
John's neurologist found us in the waiting area and gave us the results of the EEG. Apparently, his team had already studied them that morning. He said overall that John's EEG was dramatically better than it ever has been. He said that his brain wave rhythm had matured, and the background slowing had improved. He said there were times of some normal sleep rhythms - maybe for the first time ever. And, he said the the seizures themselves were far less severe. In fact, he said that if he were basing his findings on the EEG alone, he probably wouldn't classify these discharges as seizures at all. Since these discharges are associated with head drops, they are certainly still seizures, but are a big improvement over the seizures he's been having for the last 3 years. He said that he and his team believe that John's seizures originate in the thalamus area of the brain. This is an area deep in the brain that cannot be accessed. So, that obviously rules out any more testing for a surgery option. He said the best course of action for this type of seizure is VNS and drugs, which is exactly what we're already doing.
We don't know why John got better. It could be the Keppra, or it could be that he is just growing out of this. We also asked about John's lack of development, even with this improvement. He said that it could very well be the underlying issue that is causing all of this. Or, it could be the drugs that John is on. So, he said his goal is to get John on as little medication as we can, which was music to our ears. John really has seemed more alert since we lowered his Felbatol level, so we're really hopeful that further lowering this drug will help even more.
While we were talking to the neurologist, the neurosurgeon came in and told us that everything went fine. He said the leads were OK, so they only needed to do the generator replacement. He said that John was already starting to wake up so we'd be able to see him soon. That was 9:30.
At around 10am, a nurse came out and told us that John was just starting to wake up, and we'd be able to see him soon. She had us go down and get his new prescriptions (antibiotic and pain meds) while we were waiting. Around 10:30, the neurologist came back and said he had just turned on John's VNS. He set is really low compared to what it used to be. It is now set at 1mA, on for 30 seconds each 5 minutes. He said we'd increase it in a couple of weeks but he has no intention of going to the type of settings that John had previously. He also said that John was waking up and we'd be able to see him soon.
At 11:10, I finally asked reception for a status and they were able to take us back to see him immediately. Sure enough, he was half-awake. We tried to get him to drink some liquids so that his IV could be removed (it was driving him crazy). He watched a little TV, and fell back asleep.
At around 1pm, the nurse came and said we could wait for him to wake up, or we could take him home and let him sleep. We opted for the latter. I carried him down to the car and we went home. We were home by 2pm. Once we got home, John went back to his normal ways. I actually had to stop him from climbing his climbing wall and jumping off the couch. It was as if nothing had happened to him. We didn't even give him any pain medicine until bed time as he didn't seem to be in any pain.
Today (Wednesday) he seems completely fine. He doesn't know that he has a big cut in his chest, and we're hiding it from him. I think if he saw it, he would try to remove it. But, it doesn't seem to bother him at all so far. I gave him a dose of the pain med first thing in the morning, really just as a precaution. I'm guessing we won't have to give him any more at all. We even got out for a little hike today. He grabbed some stinging nettles, which is bothering him more than anything right now. So I think it is fair to say that it all went better than expected.
We'll go back in a couple of weeks to increase his VNS settings, and then we'll hopefully start decreasing the Felbatol shortly thereafter.
One really promising sign is that the VNS magnet has appeared to stop John's seizure clusters on two occasions today. I have a good feeling that we're going to be able to go to just the VNS and a low dose of Keppra for long term treatment.
Thursday, February 21, 2008
EEG and VNS
We went in for John's EEG last week, but there was some mix-up and we were finally sent home and forced to reschedule. We got rescheduled for next Monday (Feb. 25) at 7:30am.
Today, we met with John's neurosurgeon to discuss replacing his VNS. We got some x-rays taken just to make sure the leads were still OK - they were. And, it turns out that they had a cancellation and were able to get John in next Tuesday for the surgery! So, his EEG will go from Monday morning to early Tuesday morning, at which point they'll remove the leads and take him right to surgery. It will be a rough couple of days, but nice to get it over with all at once. If all goes well, the surgery will take less than 30 minutes and we'll be home Tuesday evening.
In other news, John really seems to be doing better on the lower Felbatol dose. He just seems more "with it". Thankfully, we didn't see any increase in seizures at the lower dose either. So, we're hopeful that we can lower it even more after we get the VNS working again. John has continued to have daily clusters of small seizures, but I don't think they have gotten any worse since my last post.
John seemed to like school for months. But, for some reason he cries when you say the word "school" now. The teachers say he is fine after awhile, so I guess it's just separation anxiety. We're not sure why it suddenly came on, but it might also have something to do with his reduced Felbatol level. John knows the route to his school, and he'll cry as long as you stay on the same route. If you turn off course at any point, he quits crying. So, some parts of his brain seem to work quite well. Sure hope the language part starts working one of these days.
Today, we met with John's neurosurgeon to discuss replacing his VNS. We got some x-rays taken just to make sure the leads were still OK - they were. And, it turns out that they had a cancellation and were able to get John in next Tuesday for the surgery! So, his EEG will go from Monday morning to early Tuesday morning, at which point they'll remove the leads and take him right to surgery. It will be a rough couple of days, but nice to get it over with all at once. If all goes well, the surgery will take less than 30 minutes and we'll be home Tuesday evening.
In other news, John really seems to be doing better on the lower Felbatol dose. He just seems more "with it". Thankfully, we didn't see any increase in seizures at the lower dose either. So, we're hopeful that we can lower it even more after we get the VNS working again. John has continued to have daily clusters of small seizures, but I don't think they have gotten any worse since my last post.
John seemed to like school for months. But, for some reason he cries when you say the word "school" now. The teachers say he is fine after awhile, so I guess it's just separation anxiety. We're not sure why it suddenly came on, but it might also have something to do with his reduced Felbatol level. John knows the route to his school, and he'll cry as long as you stay on the same route. If you turn off course at any point, he quits crying. So, some parts of his brain seem to work quite well. Sure hope the language part starts working one of these days.
Wednesday, February 06, 2008
Not a lot has changed seizure-wise since my last post. John continues to have at least 1 cluster of seizures every day. Each cluster has between 5-12 seizures. The cluster lasts a couple of minutes, and the seizures themselves are just head drops. We have lowered his Felbatol from from a high of 12ml/day down to 9ml/day. We didn't see any change in his seizures, so that is good news. I feel more comfortable with this lower dose.
Since we lowered the Felbatol, we think John has gotten more talkative. He babbles a lot now, and sometimes seems to say words that make sense, though its never clear so we can't be sure. He has also started to cry non-stop at school lately. Yoshie had to pick him up twice this week. He's always seemed to like school, so we're not sure what changed. Yoshie suggested that maybe he is just a little clearer after the Felbatol reduction, so he has a some separation anxiety again.
John has also been going to speech therapy twice a week at our local university. I had a chance to observe him the other day. It's really more like play time than therapy, but at least he likes it. So far Yoshie has had to remain in the room most of the time. Hopefully that will change soon.
We had an appt. with the neurologist on Monday. As expected, we got an appt. for another "24 hour" EEG. We'll be doing that next week. He told us that he still believes John's seizures are generalized, but there is a 25% chance that they could be focal. It was enough of a chance that we decided to pursue it. If the EEG shows a focal point, then we'll have another MRI. If the MRI shows something in that area, then we'll continue with further testing. The end result would be a surgery to remove that section of the brain. But, there are many, many steps before we get to there and if any step along the way doesn't show a clear focal point, then we'll stop. The chance of actually getting to the point of a surgery is very small.
After the EEG, we are also going to increase his Keppra slightly. Since it has worked so well, I think there is a decent chance that an increase will help him.
Finally, the VNS is completely dead, so we'll be getting that replaced shortly. As always, we only want to do one thing at a time, so it might be another month or two before that gets done. We got to see the new VNS, and it is remarkably smaller than his current one. It also has more functionality. We're not looking forward to putting John through another surgery, but this one is low risk. I doubt we'd even have to stay overnight. The hardest part will be keeping John from poking at the incision.
Since we lowered the Felbatol, we think John has gotten more talkative. He babbles a lot now, and sometimes seems to say words that make sense, though its never clear so we can't be sure. He has also started to cry non-stop at school lately. Yoshie had to pick him up twice this week. He's always seemed to like school, so we're not sure what changed. Yoshie suggested that maybe he is just a little clearer after the Felbatol reduction, so he has a some separation anxiety again.
John has also been going to speech therapy twice a week at our local university. I had a chance to observe him the other day. It's really more like play time than therapy, but at least he likes it. So far Yoshie has had to remain in the room most of the time. Hopefully that will change soon.
We had an appt. with the neurologist on Monday. As expected, we got an appt. for another "24 hour" EEG. We'll be doing that next week. He told us that he still believes John's seizures are generalized, but there is a 25% chance that they could be focal. It was enough of a chance that we decided to pursue it. If the EEG shows a focal point, then we'll have another MRI. If the MRI shows something in that area, then we'll continue with further testing. The end result would be a surgery to remove that section of the brain. But, there are many, many steps before we get to there and if any step along the way doesn't show a clear focal point, then we'll stop. The chance of actually getting to the point of a surgery is very small.
After the EEG, we are also going to increase his Keppra slightly. Since it has worked so well, I think there is a decent chance that an increase will help him.
Finally, the VNS is completely dead, so we'll be getting that replaced shortly. As always, we only want to do one thing at a time, so it might be another month or two before that gets done. We got to see the new VNS, and it is remarkably smaller than his current one. It also has more functionality. We're not looking forward to putting John through another surgery, but this one is low risk. I doubt we'd even have to stay overnight. The hardest part will be keeping John from poking at the incision.
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