It used to seem that every Friday was a bad day for John. We never did know why, but it happened enough times that we came to expect bad days on Fridays. Over the last several weeks, this pattern didn't hold true - John was having just normal days on Fridays. Well, the Friday curse returned with a vengeance last Friday. John had 58 seizure episodes, which is 20% more than his previous worst day. And, he was having those mouth-opening seizures for long periods throughout the entire day. He woke up at 5am, and didn't get to sleep until 11pm, but took a 4 hour nap during the day. He had a good 2 hours in the early evening where he got back on his normal schedule of 1 seizure every 20-30 minutes or so. But, the rest of the day seemed like almost non-stop seizures. We came very close to using our emergency drug (Diastat), but held back because John was NOT suffering. Outside of the constant seizures, he was fine.
Saturday, was a little better, though still bad. In this state, we decided not to increase his Lamictal just yet. Sunday was better again, so we gave him an extra 12.5mg of Lamictal at night. As of Monday, he's on 125mg/day. (9.6mg/kg, therapeutic is 5-15).
Monday was another pretty bad day (40 seizure episodes), with some very strong extended seizures.
So, it doesn't look good for the Lamictal. We could certainly go higher on the dose, but I don't think there is much point since I don't think we've seen any improvement at the current level. We'll give it at least a few more days to build up in his system, then if there isn't some real improvement I think it's time to push to get rid of it. I'm not sure what the next step is. Lamictal can be a tough one to wean, so I guess we have a couple of months of that ahead of us. I suspect the Dr. will want to add another drug as we wean down on the Lamictal.
Tuesday, May 31, 2005
Wednesday, May 25, 2005
New seizure types
I'm 100% certain now that the involuntary opening of the mouth is a new seizure type. This would be a partial seizure, which John has not had before. He has these for 45+ minutes a couple of times a day. During this time, he usually has a flurry of drop seizures as well. It's horrible to see. Lamictal has been known to cause this sort of thing, so that is likely the culprit. Also, John had a lengthy absence seizure today. This is where he just stares off in to space, and you can't snap him out of it. In addition, he had a couple more longer seizures where he will be twitching. I was using the computer last night, and it got quiet (rare around here). I turned around and John was on his back, with his arms in the air twitching, but with a smile on his face.
Because of this, I was ready to get rid of the Lamictal. I called the neurologist today and he was not ready to give up on the Lamictal yet, for the simple reason that the NUMBER of seizures John has had the last 2 weeks has been substantially less. We're scared to death to increase his dose yet again on Friday, but I agree with the neurologist that we have to know for certain that we gave the drug a fair trial. Since the drop seizures have decreased in number, there is a chance that the drug can get rid of a lot more at a higher dose. And, it is true that John seems very good in between the seizures now. He runs around, smiles, and laughs and lets us forget about his troubles for small periods of time. Next week will be interesting. And, if the other seizures get worse again, we'll start weaning the lamictal, regardless of what the doctor says.
Because of this, I was ready to get rid of the Lamictal. I called the neurologist today and he was not ready to give up on the Lamictal yet, for the simple reason that the NUMBER of seizures John has had the last 2 weeks has been substantially less. We're scared to death to increase his dose yet again on Friday, but I agree with the neurologist that we have to know for certain that we gave the drug a fair trial. Since the drop seizures have decreased in number, there is a chance that the drug can get rid of a lot more at a higher dose. And, it is true that John seems very good in between the seizures now. He runs around, smiles, and laughs and lets us forget about his troubles for small periods of time. Next week will be interesting. And, if the other seizures get worse again, we'll start weaning the lamictal, regardless of what the doctor says.
Sunday, May 22, 2005
Things are changing
By the numbers, last week was a good one. He had 300 seizures from Sunday to Saturday. That was his best week since early February. As always, there is another side to the story, though. John has started having some longer seizures, where he actually shakes for a few seconds and does not breathe. We haven't seen that before, and it is downright scary. It scares him too. Also, over the last few weeks he has started to open his mouth wide repeatedly, usually just before having a seizure. I think this is an involuntary action, and could be a new partial seizure type. These negatives are almost certainly caused by his increased Lamictal dose (he's now on 100mg/day), though it's possible it could be related to the VNS as well. I really don't know if this is an improvement or worsening of his seizures.
John seems to have longer periods of real clarity now, which is great to see. I think something is working to clear up some of his background seizure activity, at least some of the time.
John's VNS is still set to go on 21 seconds, off 30 seconds. This means that it is on 41% of the time. Cyberonics says you should not have it on more than 40% of the time, as it has shown to cause nerve damage in animals at that level. This makes me nervous, and I think I'm going to ask to have it changed back to a more normal cycle on our next visit.
We have one more increase in the Lamictal next week before we make any decisions on what to change. If the Lamictal doesn't show some dramatic improvement soon, I am going to push for getting rid of it. I want to know if these new seizure types are related to the Lamictal. And, I have a feeling that the decrease in seizure numbers may be due to the VNS, and not the Lamictal at all.
Today, John had 32 seizure clusters, and 32 seizures, meaning he didn't have a single cluster of more than 1 seizure. I'm going to have to quit calling these "clusters". He only napped for about 10 minutes today, so those are some really good numbers. And, he was in a really great mood for many hours today. However, he also had 3 or 4 very large seizures today.
John seems to have longer periods of real clarity now, which is great to see. I think something is working to clear up some of his background seizure activity, at least some of the time.
John's VNS is still set to go on 21 seconds, off 30 seconds. This means that it is on 41% of the time. Cyberonics says you should not have it on more than 40% of the time, as it has shown to cause nerve damage in animals at that level. This makes me nervous, and I think I'm going to ask to have it changed back to a more normal cycle on our next visit.
We have one more increase in the Lamictal next week before we make any decisions on what to change. If the Lamictal doesn't show some dramatic improvement soon, I am going to push for getting rid of it. I want to know if these new seizure types are related to the Lamictal. And, I have a feeling that the decrease in seizure numbers may be due to the VNS, and not the Lamictal at all.
Today, John had 32 seizure clusters, and 32 seizures, meaning he didn't have a single cluster of more than 1 seizure. I'm going to have to quit calling these "clusters". He only napped for about 10 minutes today, so those are some really good numbers. And, he was in a really great mood for many hours today. However, he also had 3 or 4 very large seizures today.
Sunday, May 15, 2005
Lamictal now therapeutic
As of yesterday, John is taking 75mg Lamictal per day. The therapeutic range for Lamictal is 5-15 mg per kg. John is about 13kg, so he is just over the minimum therapeutic dose. It took him 2 months to get to this point. Ironically, yesterday was his worst day of the week. I don't think it means anything, as it takes a few days for the drug to build up in his system. But still, it doesn't leave us with a lot of optimism that things are going to get better this week.
John did do somewhat better last week than the 2 previous weeks. Hopefully, he's turned the corner and we'll start seeing some consistent improvement now.
We saw the doctor last Monday and had his VNS adjusted again. It is now set to go on 21 sec, off 30 seconds. It's set at 1mA, and the magnet is set at 1.25mA. I think it does bother his throat a bit now, and he coughs every now and then. No detectable voice change yet. So, I don't think it's doing anything yet, but hopefully we start to see some gradual improvement after a couple of months. Our next appt. is not for another month. At that point, the VNS will have been on for almost 2 months, and he will be at 125mg/day of Lamictal. If we don't see some significant improvement by then, I think he'll change the VNS back to a more traditional setting (on 30sec/off 3 minutes) but at a higher ampage. And, we may add another drug and start getting rid of the Lamictal, though I'm not sure if he'll want to try an even higher dose before giving up on it.
John did do somewhat better last week than the 2 previous weeks. Hopefully, he's turned the corner and we'll start seeing some consistent improvement now.
We saw the doctor last Monday and had his VNS adjusted again. It is now set to go on 21 sec, off 30 seconds. It's set at 1mA, and the magnet is set at 1.25mA. I think it does bother his throat a bit now, and he coughs every now and then. No detectable voice change yet. So, I don't think it's doing anything yet, but hopefully we start to see some gradual improvement after a couple of months. Our next appt. is not for another month. At that point, the VNS will have been on for almost 2 months, and he will be at 125mg/day of Lamictal. If we don't see some significant improvement by then, I think he'll change the VNS back to a more traditional setting (on 30sec/off 3 minutes) but at a higher ampage. And, we may add another drug and start getting rid of the Lamictal, though I'm not sure if he'll want to try an even higher dose before giving up on it.
Saturday, May 07, 2005
Worse again
At some point, things have to start getting better. It certainly hasn't happened yet. This week was another new record for the number of seizure clusters (285), despite being on more Lamictal. The Lamictal could well be making things worse but, like I said before, we don't have too many choices left so we need to at least get this one up to a high therapeutic dose before we give up on it. Of course, if this downward trend continues we will have to rethink this stategy.
There is some evidence that the VNS doesn't start working for people until after a couple of months. Hopefully, that is the case with John.
John hit his face a couple of time this week. He has new bruises on his forehead and his nose. And, he reopened the cut on his eyelid earlier in the week, as well as bruising it again.
We tried to go to a restaurant today for the first time in 10 months. Of course John made quite a scene by slamming his head into the dishes and spilling food everywhere. It was miserable and we had to leave early. I don't think Yoshie had a chance to eat anything.
We'll get the VNS turned up again on Monday. We're certainly not expecting that to help things at all, at least not immediately.
All that being said, things have been worse in the past. He's definately having more seizures now, but his mind seems clear and he's happy. It's better now than the times when he was just dull and never smiled. I believe that today ends his worst week that he'll ever have, seizure wise. I really think he is about to turn the corner and things will start getting better again.
There is some evidence that the VNS doesn't start working for people until after a couple of months. Hopefully, that is the case with John.
John hit his face a couple of time this week. He has new bruises on his forehead and his nose. And, he reopened the cut on his eyelid earlier in the week, as well as bruising it again.
We tried to go to a restaurant today for the first time in 10 months. Of course John made quite a scene by slamming his head into the dishes and spilling food everywhere. It was miserable and we had to leave early. I don't think Yoshie had a chance to eat anything.
We'll get the VNS turned up again on Monday. We're certainly not expecting that to help things at all, at least not immediately.
All that being said, things have been worse in the past. He's definately having more seizures now, but his mind seems clear and he's happy. It's better now than the times when he was just dull and never smiled. I believe that today ends his worst week that he'll ever have, seizure wise. I really think he is about to turn the corner and things will start getting better again.