John had 48 seizure clusters 2 times this week, which ties his worst days ever. This was also easily his worst week ever in terms of seizure clusters. The VNS is not yet working. In fact, 3 times today he had a seizure immediately after I used the magnet. I'm getting worried that the VNS is actually making him worse. That is almost unheard of, but can happen.
We increased his Lamictal to 40mg/day. This also appears to either make things worse, or not do anything at all. He's still not officially at a therapeutic dose, but I think we would probably see some sign of improvement if this was to be his miracle drug. Since we don't have too many options, we'll continue to increase this weekly unless things really get out of hand.
John is completely off the keto diet. It's been really nice to not have to use the scale or prepare all his meals ahead of time. We're still keeping him away from heavy carb foods just to give him time to adjust. I took his ketone reading this week and it was 0. So, his brain is officially running on glucose again. We'd be happier about this if he were doing better. As it stands, it looks very likely that we'll have to put him back on the diet soon. At least he is able to enjoy meal time again. I hope this doesn't backfire. He may not ever go back to happily eating heavy cream and oil for his meals again.
The news is not all bad. John seems especially happy these days. The diet, the VNS, or the Lamictal has made a noticable change in his demeanor. I think his increased seizure activity is probably a direct result of him being in a good mood and running around all over the place. We're holding on to this slim hope that the VNS or the drug has helped his background activity, and it will help his clinical seizures at a higher dose.
Saturday, April 30, 2005
Monday, April 25, 2005
Not much change
Things haven't changed much since the last time I updated. He continues to sleep poorly. He was up in the middle of the night 5 of the last 7 nights. He's usually up for 2-3 hours at a stretch, sometime between 12am -4am. It can be very frustrating in the middle of the night when he refuses to sleep. Yoshie handles it better than I do. :)
He is still having more seizure clusters than ever. Actually, his total number of seizures isn't that high, but he has a drop roughly every 15-20 minutes all day. I don't think the VNS has helped at all. Last week he had 222 clusters and 332 seizures. I guess that is a substantial improvement over the week before (252/457), so maybe he is getting slightly better. It sure doesn't feel like it, though. This week has started very poorly, so I don't think this downward trend will continue.
He's on 30mg of Lamictal per day now. We didn't see any improvement after increasing his doseage, but we also haven't seen any side-effects (except for the sleep thing). So, I think that is good news. He's still only at about 50% of his minimum therapeutic dose, so we shouldn't expect too much just yet.
He also had his VNS turned up pretty substantially today. He's now at .75mA, on for 30 seconds, off for 66 seconds. The magnet is set to 1mA. He had a bad day today, so that obviously isn't helping yet. Hopefully, it will get better with time.
Finally, we went down to a 1:1 diet ratio a couple of days ago. He can almost eat anything he wants now, outside of bread, pasta, rice, cereal, etc. We're going to bring him completely off of the diet over the course of this week. We're prepared to go back on it at any time, though. It appears to be the only thing that may have helped him - and we're only mildly confident in saying that.
My parents joined John, Yoshie, and I on a 5K fundraiser walk for the NW Epilepsy foundation on Saturday. Of course it rained, but it wasn't too bad. It was lightly attended, but I think they still raised at least $7K. Of course, we forgot to bring a camera. :(
He is still having more seizure clusters than ever. Actually, his total number of seizures isn't that high, but he has a drop roughly every 15-20 minutes all day. I don't think the VNS has helped at all. Last week he had 222 clusters and 332 seizures. I guess that is a substantial improvement over the week before (252/457), so maybe he is getting slightly better. It sure doesn't feel like it, though. This week has started very poorly, so I don't think this downward trend will continue.
He's on 30mg of Lamictal per day now. We didn't see any improvement after increasing his doseage, but we also haven't seen any side-effects (except for the sleep thing). So, I think that is good news. He's still only at about 50% of his minimum therapeutic dose, so we shouldn't expect too much just yet.
He also had his VNS turned up pretty substantially today. He's now at .75mA, on for 30 seconds, off for 66 seconds. The magnet is set to 1mA. He had a bad day today, so that obviously isn't helping yet. Hopefully, it will get better with time.
Finally, we went down to a 1:1 diet ratio a couple of days ago. He can almost eat anything he wants now, outside of bread, pasta, rice, cereal, etc. We're going to bring him completely off of the diet over the course of this week. We're prepared to go back on it at any time, though. It appears to be the only thing that may have helped him - and we're only mildly confident in saying that.
My parents joined John, Yoshie, and I on a 5K fundraiser walk for the NW Epilepsy foundation on Saturday. Of course it rained, but it wasn't too bad. It was lightly attended, but I think they still raised at least $7K. Of course, we forgot to bring a camera. :(
Saturday, April 16, 2005
tough week
The VNS isn't helping at all at the current settings. That first day, it seemed like we could stop the clusters. Now I'm not so sure. In fact, sometimes it almost seems like it causes him to have a seizure. I know that isn't likely, but I hesitate to use the magnet now.
John had his worst week ever as far as seizure clusters go. He had 252 clusters this week. The previous record was 211. A lot of this is due to him waking up for a couple of hours in the middle of the night almost every night. He has lots of seizures during this time. I don't think the VNS is causing this decline, as he already was in this bad state before the VNS was turned on.
So, we're left trying to figure out what is causing this bad stretch. It's either the Lamictal (either outright, or because it keeps him up at night), the diet ratio (our current thinking), the VNS, ongoing fallout from the Felbatol trial, or just coincidence.
So what do we do about it? We can't do anything about the Felbatol or coincidence. We're obviously going to continue with the VNS ramp up over the next few months. The Lamictal is at such a low dose that it is unlikely to be causing any problem. And, we really can't give up on this one. It's one of our last hopes for meds. The diet is a mystery. It didn't seem to help at all as we increased his ratio. However, if you look at the data, it appears that he really did start getting worse as we lowered his ratio.
So, the current plan is to keep increasing the Lamictal until it is therapeutic or the side-effects are too bad. And, we'll continue to ramp up the VNS every 2-3 weeks. We don't want to change too many things at once, so we'll leave the diet where it is for now. If things don't improve on their own after a couple of weeks, we'll probably have to give the diet another trial at a higher ratio. We know that it won't make him seizure free, and that is still our goal. So, we have to continue to explore paths that could potentially make this happen. If the diet turns out to be part of a mixture of treatments that work for him, than we'll keep with it.
So, we doubled his Lamictal dose today to 20mg/day. And, we are giving his nighttime dose much earlier (6:30pm), in hopes that this will help him sleep through the night.
John had his worst week ever as far as seizure clusters go. He had 252 clusters this week. The previous record was 211. A lot of this is due to him waking up for a couple of hours in the middle of the night almost every night. He has lots of seizures during this time. I don't think the VNS is causing this decline, as he already was in this bad state before the VNS was turned on.
So, we're left trying to figure out what is causing this bad stretch. It's either the Lamictal (either outright, or because it keeps him up at night), the diet ratio (our current thinking), the VNS, ongoing fallout from the Felbatol trial, or just coincidence.
So what do we do about it? We can't do anything about the Felbatol or coincidence. We're obviously going to continue with the VNS ramp up over the next few months. The Lamictal is at such a low dose that it is unlikely to be causing any problem. And, we really can't give up on this one. It's one of our last hopes for meds. The diet is a mystery. It didn't seem to help at all as we increased his ratio. However, if you look at the data, it appears that he really did start getting worse as we lowered his ratio.
So, the current plan is to keep increasing the Lamictal until it is therapeutic or the side-effects are too bad. And, we'll continue to ramp up the VNS every 2-3 weeks. We don't want to change too many things at once, so we'll leave the diet where it is for now. If things don't improve on their own after a couple of weeks, we'll probably have to give the diet another trial at a higher ratio. We know that it won't make him seizure free, and that is still our goal. So, we have to continue to explore paths that could potentially make this happen. If the diet turns out to be part of a mixture of treatments that work for him, than we'll keep with it.
So, we doubled his Lamictal dose today to 20mg/day. And, we are giving his nighttime dose much earlier (6:30pm), in hopes that this will help him sleep through the night.
Tuesday, April 12, 2005
Terrible day, but VNS offers some hope
John woke up at 4:15am and immediately started having seizures every 5-10 minutes.
He has done this before for an hour or two, but then will usually snap out of it. Today, he didn't snap out of it the whole day. We had his appt. at 9am to turn on the VNS. By that time, he had already had 60 seizures (15-20 clusters). He ended up with 48 clusters, and 98 seizures, easily his worst day ever.
He had his VNS turned on to .5 mA, on a 3 min off/30 sec on cycle. The first time it came on he gagged, and looked uncomfortable. So, it got turned down immediately to .25 mA, which is a really small "dose". The magnet activation was set to .5mA for 1 minute. John was having lots of seizures right in the office, even after the VNS had been turned on. So, we tried the magnet, and it seemed like it actually may have stopped the clusters. It's hard to know for sure, as some of his clusters are only 1 seizure anyway.
The rest of the day, we used the magnet every time we saw him have a seizure, which was a lot.
It seems like it IS working for all but the strongest seizures. It does not stop him from having a seizure in the first place, but does seem 90% effective in stopping the cluster after the first seizure. This is leaving us very optimistic, because this dose is just really low. I think there is a good chance that this will help him greatly at the higher settings. Time will tell. We're scheduled to have it turned up in 2 weeks.
Now we're trying to figure out why yesterday was so bad. It is very possible that this is due to the diet ratio. We're prepared to go back up on the diet ratio if he doesn't improve in a week. I was convinced that the diet wasn't helping him, but I'm not so sure anymore.
We are also going to continue increasing his Lamictal dose, but on opposite weeks of any VNS changes. The doctor didn't think it was likely that the Lamictal was causing his sleeping problems, but we don't know what else it could be. We tried giving him .5mg of melatonin last night, but it didn't have any effect at all.
He has done this before for an hour or two, but then will usually snap out of it. Today, he didn't snap out of it the whole day. We had his appt. at 9am to turn on the VNS. By that time, he had already had 60 seizures (15-20 clusters). He ended up with 48 clusters, and 98 seizures, easily his worst day ever.
He had his VNS turned on to .5 mA, on a 3 min off/30 sec on cycle. The first time it came on he gagged, and looked uncomfortable. So, it got turned down immediately to .25 mA, which is a really small "dose". The magnet activation was set to .5mA for 1 minute. John was having lots of seizures right in the office, even after the VNS had been turned on. So, we tried the magnet, and it seemed like it actually may have stopped the clusters. It's hard to know for sure, as some of his clusters are only 1 seizure anyway.
The rest of the day, we used the magnet every time we saw him have a seizure, which was a lot.
It seems like it IS working for all but the strongest seizures. It does not stop him from having a seizure in the first place, but does seem 90% effective in stopping the cluster after the first seizure. This is leaving us very optimistic, because this dose is just really low. I think there is a good chance that this will help him greatly at the higher settings. Time will tell. We're scheduled to have it turned up in 2 weeks.
Now we're trying to figure out why yesterday was so bad. It is very possible that this is due to the diet ratio. We're prepared to go back up on the diet ratio if he doesn't improve in a week. I was convinced that the diet wasn't helping him, but I'm not so sure anymore.
We are also going to continue increasing his Lamictal dose, but on opposite weeks of any VNS changes. The doctor didn't think it was likely that the Lamictal was causing his sleeping problems, but we don't know what else it could be. We tried giving him .5mg of melatonin last night, but it didn't have any effect at all.
Sunday, April 10, 2005
Sleeping again, VNS cost, 1.5:1 ratio
It seems that the side-effects of the Lamictal may be wearing off. He slept most of the night for 2 nights in a row now, and is actually taking a nap right now. We'll probably have to go through this every time we increase the dose, which will be weekly for quite some time. That's OK, as long as it works.
I got the bill for the VNS surgery. It was over $48,000, and that doesn't include the neurologist or anethesiologist. That is double what I was expecting. It's a good thing I have good insurance.
The VNS gets turned on tomorrow. It will start at a low setting, so we don't really expect to see any improvement right away. But, we're at least hoping that we can use the magnet to stop some clusters.
We took another step down on his diet ratio yesterday. He is now at a 1.5:1 ratio. At this point, I think it's safe to say the diet is healthy again. He gets enough fruit, veggies, cheese, etc. to satisfy him. The only thing he is missing is the sugar and grains. This is probably only slightly more restrictive than an Atkins diet. Probably in the next couple of weeks he can come off of the diet completely. The only reason I hesitate is that when I look at his seizure chart, it appears that he started getting somewhat worse as we came off the higher ratios of the diet. I'm 95% sure this was due to other circumstances (ie. Felbatol), but I cannot be completely sure. In any case, we're ramping up with 2 treatments (VNS and Lamictal) right now, so I don't want to add a 3rd variable into the mix. If nothing else works, we can give the diet another try later.
I added a link to his seizure diary on the right side (under the picture). You can scroll through the tabs on the bottom to see the graphs.
I got the bill for the VNS surgery. It was over $48,000, and that doesn't include the neurologist or anethesiologist. That is double what I was expecting. It's a good thing I have good insurance.
The VNS gets turned on tomorrow. It will start at a low setting, so we don't really expect to see any improvement right away. But, we're at least hoping that we can use the magnet to stop some clusters.
We took another step down on his diet ratio yesterday. He is now at a 1.5:1 ratio. At this point, I think it's safe to say the diet is healthy again. He gets enough fruit, veggies, cheese, etc. to satisfy him. The only thing he is missing is the sugar and grains. This is probably only slightly more restrictive than an Atkins diet. Probably in the next couple of weeks he can come off of the diet completely. The only reason I hesitate is that when I look at his seizure chart, it appears that he started getting somewhat worse as we came off the higher ratios of the diet. I'm 95% sure this was due to other circumstances (ie. Felbatol), but I cannot be completely sure. In any case, we're ramping up with 2 treatments (VNS and Lamictal) right now, so I don't want to add a 3rd variable into the mix. If nothing else works, we can give the diet another try later.
I added a link to his seizure diary on the right side (under the picture). You can scroll through the tabs on the bottom to see the graphs.
Thursday, April 07, 2005
Another trip to the urgent care clinic
Despite our best efforts to keep our house free from dangers, John still manages to have seizures in the worst possible places. Last night he had a seizure in front of the TV, and fell on the corner of the TV stand. He got a pretty good cut on his left eyelid, and it started swelling quickly. It was hard to tell how serious it was, so we took him to the urgent care clinic. As usual, we had to wait over an hour to see a doctor. By the time the doctor finally saw him, the swelling had gone down and the cut had closed up nicely. He said he wouldn't recommend stitches in this case, and I happily agreed.
Because of this, John got to sleep rather late. We thought that would mean he would at least sleep through the night. Unfortunately, that didn't happen. He was up from 12:00 am until 2am. Thankfully, he did sleep until after 8am this morning, so at least he got a good 8 hours of sleep (still about 4 hours short of what I think he needs). He had a lot of seizures during those couple of hours in the middle of the night, so our streak of decent days is sure to come to an end today.
The good news is that the side effects of the Lamictal appear to be limited to sleep problems. He seems to be full of energy during the day, and very happy.
Because of this, John got to sleep rather late. We thought that would mean he would at least sleep through the night. Unfortunately, that didn't happen. He was up from 12:00 am until 2am. Thankfully, he did sleep until after 8am this morning, so at least he got a good 8 hours of sleep (still about 4 hours short of what I think he needs). He had a lot of seizures during those couple of hours in the middle of the night, so our streak of decent days is sure to come to an end today.
The good news is that the side effects of the Lamictal appear to be limited to sleep problems. He seems to be full of energy during the day, and very happy.
Tuesday, April 05, 2005
Sleep....or a lack thereof
We increased John's Lamictal to 10mg a few days ago, and this seems to have further aggravated his sleep problems. He routinely wakes up during the night now. Last night was the worst - he was up from 12:15am to 4:30am. He cries a good portion of this time, and it's just miserable for all of us. Amazingly, he seems well rested after waking up just a few hours later. The same cannot be said for us parents. If this drug is causing these sorts of sleep problems at 10mg, I wonder what it is going to do at 100+mg? In fact, John can theoretically go up to 290mg/day. Often the side effects wear off after awhile. Obviously we're hoping for that.
Friday and Saturday were pretty good seizure days, then Sunday turned out to be really terrible (37 clusters). Yesterday (Mon) was better again. We've quit giving him most of the supplements, including the prescription carnitor. We've always suspected that this made him worse. His carnitine blood levels were low, but he doesn't show any signs of carnitine deficiency, so we're holding off for now. With his lower diet ratio, hopefully he just doesn't need the carnitine anymore.
The 2:1 diet ratio and increased calories have caused his glucose to go up slightly (now in the 70's). However, his ketones remain sky high (5+). In fact, I'm beginning to wonder if his high ketones are contributing to his waking up at night. It doesn't make any sense that he should have such high ketones on a 2:1 ratio. He really is a mystery.
Yoshie sewed a piece of foam onto one of his shirts to protect his VNS area. Seems to be working great so far. The incisions look better each day. He's still taking Tylenol every 5 hours, but we've lowered his dose somewhat.
Even though he was wearing his helmet, he managed to fall right on his forehead on the small exposed tile area of our kitchen. So, he has yet another bruise on his forehead.
Friday and Saturday were pretty good seizure days, then Sunday turned out to be really terrible (37 clusters). Yesterday (Mon) was better again. We've quit giving him most of the supplements, including the prescription carnitor. We've always suspected that this made him worse. His carnitine blood levels were low, but he doesn't show any signs of carnitine deficiency, so we're holding off for now. With his lower diet ratio, hopefully he just doesn't need the carnitine anymore.
The 2:1 diet ratio and increased calories have caused his glucose to go up slightly (now in the 70's). However, his ketones remain sky high (5+). In fact, I'm beginning to wonder if his high ketones are contributing to his waking up at night. It doesn't make any sense that he should have such high ketones on a 2:1 ratio. He really is a mystery.
Yoshie sewed a piece of foam onto one of his shirts to protect his VNS area. Seems to be working great so far. The incisions look better each day. He's still taking Tylenol every 5 hours, but we've lowered his dose somewhat.
Even though he was wearing his helmet, he managed to fall right on his forehead on the small exposed tile area of our kitchen. So, he has yet another bruise on his forehead.
Friday, April 01, 2005
Recovering from surgery
I always read about kids that are "back to their normal self" 2 or 3 days after the VNS surgery. I would say John is 80% back to normal. He still requires a pretty hefty dose of Tylenol every 5 hours or so. And, when he gets tired or cries a lot it sounds like he is losing his voice. Plus, his sleeping patterns are still screwed up - he was up crying from 2am - 4:30am on Wednesday. I think his incisions are healing fine. I don't really know what to look for, but Yoshie assures me that they are OK. We have to keep him in a turtle-neck so that he doesn't scratch the wounds.
His seizures are back to normal, which is too bad. He's having pretty strong drop seizures, and it seems like he manages to fall right on his VNS quite frequently. He doesn't complain, but it sure seems like that must hurt. We're going to try to get him to wear a life jacket for the next couple of days for protection.
We're planning on doubling his dose of Lamictal either tonight or tomorrow. So, as always, we're hopeful that we'll see some improvements in his seizure activity.
Also, since the 2.5:1 diet ratio obviously isn't working, we went down to a 2:1 ratio and increased his calories by 130. He got an amazing 50g of tofu for lunch today! We try to get most of his fats in via healthy oils, so he doesn't have to eat much whipping cream anymore. That's good, as it was getting increasingly more difficult to get him to take it.
His seizures are back to normal, which is too bad. He's having pretty strong drop seizures, and it seems like he manages to fall right on his VNS quite frequently. He doesn't complain, but it sure seems like that must hurt. We're going to try to get him to wear a life jacket for the next couple of days for protection.
We're planning on doubling his dose of Lamictal either tonight or tomorrow. So, as always, we're hopeful that we'll see some improvements in his seizure activity.
Also, since the 2.5:1 diet ratio obviously isn't working, we went down to a 2:1 ratio and increased his calories by 130. He got an amazing 50g of tofu for lunch today! We try to get most of his fats in via healthy oils, so he doesn't have to eat much whipping cream anymore. That's good, as it was getting increasingly more difficult to get him to take it.
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