John has really had an exceptional week from a seizure standpoint. There were 3 days in the last week where we didn't see a single seizure. And, we only saw 2-3 small seizures on the other days. We do see some periods that we think are absence seizures, but something has definately changed. We can no longer consider this a fluke.
We lowered John's Lamictal 1 week ago, and I suppose this may have helped him. Or, it could really be the Chinese herbs, though I am such a skeptic that I have a hard time admitting that. The herbalist looked me straight in the eyes and told me that he will improve, and I just chuckled. But, it really happened. I still think it's probably the lowering of Lamictal that is helping, but if you look at the timing of things, his improvement coincides more with his herbal treatment than the drug reduction. In any case, I can't see stopping the herbs any time soon.
John has been incredibly hyperactive the whole week. There were a couple of days where it was simply unreal. It was like he was posessed. He would run and jump and just act crazy non-stop. His heart would be racing and he would be out of breath but he would just keep going. It was somewhat scary actually. Thankfully, he appears to be slowly getting better with each day. I assume this is withdrawal from the Lamictal, in which case we're a little scared to make another reduction so soon. It also could just be a reaction to having less seizures. I've heard of kids that go seizure free, and are over-active for up to 6 weeks after that.
His behavior has also been bad, and he's back to going limp every time he doesn't get his way. Yoshie has referred to this as "the octopus". For example, when it is time for circle time at school and John wants to play in the water, he will go limp and start screaming. Yoshie took a video of it, and it was quite surprising. We'll be working on this during his behavior therapy sessions now.
We had a meeting with his Early Intervention teachers last week, as things just aren't working out in his current setting - he cries the whole time. So, a psychologist is now going to observe John at home, at preschool, and at his EI class and make a recommendation for his services. It might end up being a 1 on 1 therapy at school or at home, or having an aide with him at his preschool, or something else. In the meantime, Yoshie is staying with John the whole time both at EI and at preschool. This isn't a long-term solution, as John needs to learn to handle the classes on his own (and Yoshie needs a break!). But, for now its better than having him sit in his stroller and cry for the entire class.
We're scheduled to take another 1/2 pill out today. We haven't decided if we will actually do it or not. When things are going well, I don't want to change anything. But, maybe the lowering of Lamictal is helping and it will be even better if we get rid of it completely. How can we know for sure?
Wednesday, September 27, 2006
Thursday, September 21, 2006
no seizures?
For the first time in over a year, we did not see a single seizure today! I'm pretty sure he probably had some, but we said a long time ago that we only count the ones we see. We're desperately hoping it is the beginning of something good, and not just the calm before the storm.
His behavior was quite bad today, and he didn't do so well at preschool. That is expected, since we lowered his Lamictal doseage, though usually it takes more than a day or two to see the fallout.
Tonight, his spirits changed almost instantly and he was in a great mood again. He's such a mystery.
So, the only 2 things that we can think of that we have changed are:
- The herbs
- the lowered Lamictal.
I don't really believe either of these could account for having a seizure free day, but I don't have any other explanation. We're just hoping it continues.
His behavior was quite bad today, and he didn't do so well at preschool. That is expected, since we lowered his Lamictal doseage, though usually it takes more than a day or two to see the fallout.
Tonight, his spirits changed almost instantly and he was in a great mood again. He's such a mystery.
So, the only 2 things that we can think of that we have changed are:
- The herbs
- the lowered Lamictal.
I don't really believe either of these could account for having a seizure free day, but I don't have any other explanation. We're just hoping it continues.
Wednesday, September 20, 2006
Doctor Visit
We joked going into the doctor that we already knew exactly what he was going to recommend. We've been doing this long enough that we really can guess what the course of action will be. If we could just write prescriptions and program the VNS, we probably wouldn't even need a neurologist.
We guessed right on again, which was good news. We are going to lower his Lamictal fairly quickly until it is gone. This is assuming that we don't see any fallout. Then, we will raise his Felbatol as far as 60mg/kg, which is 25% more than he is taking now. After that, he recommended simply keeping with the Felbatol monotherapy. He said that there were a lot of other drugs we could try, but they all come with serious side effects. Since John is doing so well these days, he didn't feel it was worth the risk to try anything new, especially since there is little chance of anything working.
This doctor had obviously studied John's files carefully before we met. This is the first time that a doctor has taken the time to truly go over everything. Some points:
- John's EEG definately shows generalized seizures only. There is no hint of a partial onset, which destroys any hope we had for surgery.
- John's latest MRI was compared with his earlier ones and his brain looks "beautiful". There has been no shrinkage, and the two sides are also the same size. He said it's pretty common in kids like John for there to be shrinkage in the brain, either from the underlying cause or from the meds. It is VERY good that John's brain still looks good.
- John's VNS is still looking good. We expected the battery to be dead by now, but it's still going strong.
After looking at everything, he said that he thought John's seizures would change for the better with time, and that he could potentially grow out of them. We've always held out some hope, based on stories from other parents, but we've never heard a doctor tell us this. In fact, the predictions when we've pressured them have always been pretty bleak. It came as such a shock to hear him say that, that I still don't fully believe it.
Here are the answers to some other questions that we asked:
- If you recall, John had a test for celiac disease last year. This test showed that he had zero IgA. They brushed it off back then, but we brought it up again. This doctor also said that there was no link to IgA deficiency and seizures, and that kids that have immune system problems are always sick, which isn't the case with John. He recommended that we dismiss this.
- We asked about the frequency of blood tests, since most kids on Felbatol get weekly or biweekly blood tests. He insisted that John only needs a test every 3 months, and will go to every 6 months after awhile.
- Yoshie asked about IVIG as a treatment. He said that they had tried it with some kids, but that John just didn't fit the seizure type for that sort of treatment.
- We asked about new technologies that we've read about. He knew everything about all of them, which was great to hear. John isn't a candidate for any, but it's nice knowing his doctor is up on these studies.
I'm sure there is more, but that is all I can remember right now.
We told him about the herbalist and naturopath that we are seeing and he was all for that. He said we could send him a list of everything that John is taking so they could check for any drug interactions. He even added thyroid tests to John's lab slip, as the naturopath wanted that information.
I've said it before, but I really believe we've ended up with the best neurologist around. As an added bonus, John really likes him. I also believe we have the best naturopath and herbalist in town.
We guessed right on again, which was good news. We are going to lower his Lamictal fairly quickly until it is gone. This is assuming that we don't see any fallout. Then, we will raise his Felbatol as far as 60mg/kg, which is 25% more than he is taking now. After that, he recommended simply keeping with the Felbatol monotherapy. He said that there were a lot of other drugs we could try, but they all come with serious side effects. Since John is doing so well these days, he didn't feel it was worth the risk to try anything new, especially since there is little chance of anything working.
This doctor had obviously studied John's files carefully before we met. This is the first time that a doctor has taken the time to truly go over everything. Some points:
- John's EEG definately shows generalized seizures only. There is no hint of a partial onset, which destroys any hope we had for surgery.
- John's latest MRI was compared with his earlier ones and his brain looks "beautiful". There has been no shrinkage, and the two sides are also the same size. He said it's pretty common in kids like John for there to be shrinkage in the brain, either from the underlying cause or from the meds. It is VERY good that John's brain still looks good.
- John's VNS is still looking good. We expected the battery to be dead by now, but it's still going strong.
After looking at everything, he said that he thought John's seizures would change for the better with time, and that he could potentially grow out of them. We've always held out some hope, based on stories from other parents, but we've never heard a doctor tell us this. In fact, the predictions when we've pressured them have always been pretty bleak. It came as such a shock to hear him say that, that I still don't fully believe it.
Here are the answers to some other questions that we asked:
- If you recall, John had a test for celiac disease last year. This test showed that he had zero IgA. They brushed it off back then, but we brought it up again. This doctor also said that there was no link to IgA deficiency and seizures, and that kids that have immune system problems are always sick, which isn't the case with John. He recommended that we dismiss this.
- We asked about the frequency of blood tests, since most kids on Felbatol get weekly or biweekly blood tests. He insisted that John only needs a test every 3 months, and will go to every 6 months after awhile.
- Yoshie asked about IVIG as a treatment. He said that they had tried it with some kids, but that John just didn't fit the seizure type for that sort of treatment.
- We asked about new technologies that we've read about. He knew everything about all of them, which was great to hear. John isn't a candidate for any, but it's nice knowing his doctor is up on these studies.
I'm sure there is more, but that is all I can remember right now.
We told him about the herbalist and naturopath that we are seeing and he was all for that. He said we could send him a list of everything that John is taking so they could check for any drug interactions. He even added thyroid tests to John's lab slip, as the naturopath wanted that information.
I've said it before, but I really believe we've ended up with the best neurologist around. As an added bonus, John really likes him. I also believe we have the best naturopath and herbalist in town.
Thursday, September 14, 2006
A lot has happened...
Sorry for the long delay in updating this site. We have tried a lot of things in the last month, with some things looking promising. So far no improvement in his seizure count, though.
First of all, his blood results came back fine. His Lamictal level was low. We of course already knew this because we have been lowering his dose for some time. It hasn't been at a therapeutic level in months. The Felbatol level was definately therapeutic, but there is a chance we can go a little higher.
We lowered his Lamictal another half pill during a week nothing else was going on. He is now on 75mg/day. Again, nothing seemed to change with this reduction, aside from a couple of days of him just not feeling quite right.
We've now been to the Chinese herbalist 4 times. She has given him a concoction each week, trying to address his sleeping issues, constipation, and the healing of his brain. The constipation thing worked at first, but did not work the next time we tried it. John is also sleeping OK now. I don't "think" that is related to the herbs, since he is no longer getting that combo of herbs and his sleep remains fine. The big problem is that the stuff tastes disgusting, and it is getting harder and harder to get it into him. We're going to continue for awhile longer, but not indefinately unless we see some improvement.
We also went to see our old Naturopath earlier this week. He is a good guy, and has a very sensical approach. He told us to simply give John 2000mg of vitamin C a day to take care of his constipation. It worked after 1 day. That sure is easier and cheaper than the $70/week for herbs! John got an allergy test and will be getting an organic acids test through him pretty soon. We are waiting to get the results from these tests before continuing with any treatments.
We are going to see John's neurologist again next week. He said he wanted time to look over all of John's records and he set up a 1 hour appointment. Hopefully something good will come from that.
Yoshie has been continuing with John's daily speech therapy. He sits for 45 minutes at a time now, and seems to really enjoy it. If you say, "What is your name?", he now answers with a quiet "juh". It's a start!!
John started his preschool last week. This is a normal preschool, and John is in the 3 year old class (he is 4). He's still by far the slowest in the class, of course. Yoshie stays with him. He's been to 2 classes so far, and so far so good. I think he can really benefit from this environment if we do it just right.
His preschool is in the afternoon, so we had to switch his early intervention services to a morning class. That has just been terrible. He hates it there, and lets them know it by crying non-stop the entire time he is there. It's a no-win situation for everyone. They called us and want to set up a meeting because they are "very concerned" with John. I don't think they believe us when we tell them that John is a very happy guy who almost never cries. The fact is that he hates the school. That meeting is next week. Hopefully they will suggest sending someone to our house for therapy. If not, we may be forced to give up on that program completely. So much for "no child left behind".
The other big news around here is that I think it's safe to finally declare that John is potty-trained! Even at night! He still makes the occasional mistake, but it's getting more and more rare. He hasn't had to wear a diaper for a couple of weeks now.
I guess that's it for now. I will try to post some new pictures soon.
First of all, his blood results came back fine. His Lamictal level was low. We of course already knew this because we have been lowering his dose for some time. It hasn't been at a therapeutic level in months. The Felbatol level was definately therapeutic, but there is a chance we can go a little higher.
We lowered his Lamictal another half pill during a week nothing else was going on. He is now on 75mg/day. Again, nothing seemed to change with this reduction, aside from a couple of days of him just not feeling quite right.
We've now been to the Chinese herbalist 4 times. She has given him a concoction each week, trying to address his sleeping issues, constipation, and the healing of his brain. The constipation thing worked at first, but did not work the next time we tried it. John is also sleeping OK now. I don't "think" that is related to the herbs, since he is no longer getting that combo of herbs and his sleep remains fine. The big problem is that the stuff tastes disgusting, and it is getting harder and harder to get it into him. We're going to continue for awhile longer, but not indefinately unless we see some improvement.
We also went to see our old Naturopath earlier this week. He is a good guy, and has a very sensical approach. He told us to simply give John 2000mg of vitamin C a day to take care of his constipation. It worked after 1 day. That sure is easier and cheaper than the $70/week for herbs! John got an allergy test and will be getting an organic acids test through him pretty soon. We are waiting to get the results from these tests before continuing with any treatments.
We are going to see John's neurologist again next week. He said he wanted time to look over all of John's records and he set up a 1 hour appointment. Hopefully something good will come from that.
Yoshie has been continuing with John's daily speech therapy. He sits for 45 minutes at a time now, and seems to really enjoy it. If you say, "What is your name?", he now answers with a quiet "juh". It's a start!!
John started his preschool last week. This is a normal preschool, and John is in the 3 year old class (he is 4). He's still by far the slowest in the class, of course. Yoshie stays with him. He's been to 2 classes so far, and so far so good. I think he can really benefit from this environment if we do it just right.
His preschool is in the afternoon, so we had to switch his early intervention services to a morning class. That has just been terrible. He hates it there, and lets them know it by crying non-stop the entire time he is there. It's a no-win situation for everyone. They called us and want to set up a meeting because they are "very concerned" with John. I don't think they believe us when we tell them that John is a very happy guy who almost never cries. The fact is that he hates the school. That meeting is next week. Hopefully they will suggest sending someone to our house for therapy. If not, we may be forced to give up on that program completely. So much for "no child left behind".
The other big news around here is that I think it's safe to finally declare that John is potty-trained! Even at night! He still makes the occasional mistake, but it's getting more and more rare. He hasn't had to wear a diaper for a couple of weeks now.
I guess that's it for now. I will try to post some new pictures soon.
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