Wow, I can't believe I've posted 101 times already. I should probably figure out a way to back this stuff up!
Anyway, John has been off the Lamictal for over a week now. Things got worse for the first week, culminating in a day of over 100 small seizures. Then, he got better again and is back to 20-40 small seizures a day now, and some moments where he looks a little lost. These seizures are small and would probably be missed by most poeple. Hopefully he will continue to get better. I think it was a good choice to get rid of the Lamictal. Even if his seizure count might be slightly higher, it's not enough to make the drug side-effects worth it.
If a drug completely eliminated his seizures, we would be willing to live with almost any side-effects as the brain might be able to heal. As it is, I question whether he should remain on any drug if it doesn't stop his seizures completely.
We talked to the herbalist about the tropic acid thing, and she did the research and doesn't think the herbs are causing this. She's really "excited" about it though, as she thinks it might be a key.
We have an appt. with the naturopath later this week and I guess we'll come up with some plan at that time. I'm also going to see if our neurologist has any ideas.
Grandma made a gluten and dairy free Thanksgiving dinner for John, so he was able to share in the family meal. He's such a good eater, that he scarfed down pretty much everything. I'd post a picture, but I think we forgot to take any!
Monday, November 27, 2006
Wednesday, November 22, 2006
Cyberonics
Some interesting news regarding Cyberonics over the past week. Cyberonics is the company that makes the VNS.
First, billionaire Carl Icahn purchased some stock in the company and led to speculation that he would try to force a shakeup in management. This led the stock to climb 20%.
Just 2 days later, the CEO of the company quits after it was revealed that they were likely unfairly timing their stock option purchases. This was followed on Sunday by the resignation of the CFO.
I don't know what to think about this. I always thought that Cyberonics was a little shady after the way they seemed to hide some of the serious side effects of the VNS, claiming they didn't track the patients that were using it outside of FDA approval (ie. all kids under 12!).
Still, I think it was the CEO's cavalier attitude that got the product to where it is. The VNS worked for John, there is no doubt about it. I'd pay the CEO out of my own pocket if I could. But, cheating the system and getting rich off of a money-losing company is simply unethical.
It looks like this action has actually helped the stock. I can only imagine that it will be good for the future of the company. I really hope that a competing company (ie Medtronics) will buy Cyberonics and they can combine their expertise to make a better product.
I'd like to see:
1) a reliable battery life indicator. Right now it will tell you if it's near end of service only.
2) A rechargeable battery that could be recharged through the skin. My toothbrush recharges wirelessly, why can't the VNS do the same?
3) A less-permanent way of attaching the leads to the nerve, so it could be removed more easily if needed.
4) More data on what settings should be tried. It appears to be little more than a guess right now.
5) Programmable via a phone. I worked for a pacemaker company almost a decade ago and we already had this technology. Doctors could interrogate and program the pacemaker through the phoneline from anywhere. It's ridiculous to have to go to a doctors office just to do this, especially if no doctors in your area are qualified.
6) In the future, it also should be able to sense when a seizure is starting and turn on only at that time. It seems so low tech to just have it go on and off 24 hours a day. Other companies are working on this, and I think we'll see it before too long, especially if the right mergers take place in the near future.
First, billionaire Carl Icahn purchased some stock in the company and led to speculation that he would try to force a shakeup in management. This led the stock to climb 20%.
Just 2 days later, the CEO of the company quits after it was revealed that they were likely unfairly timing their stock option purchases. This was followed on Sunday by the resignation of the CFO.
I don't know what to think about this. I always thought that Cyberonics was a little shady after the way they seemed to hide some of the serious side effects of the VNS, claiming they didn't track the patients that were using it outside of FDA approval (ie. all kids under 12!).
Still, I think it was the CEO's cavalier attitude that got the product to where it is. The VNS worked for John, there is no doubt about it. I'd pay the CEO out of my own pocket if I could. But, cheating the system and getting rich off of a money-losing company is simply unethical.
It looks like this action has actually helped the stock. I can only imagine that it will be good for the future of the company. I really hope that a competing company (ie Medtronics) will buy Cyberonics and they can combine their expertise to make a better product.
I'd like to see:
1) a reliable battery life indicator. Right now it will tell you if it's near end of service only.
2) A rechargeable battery that could be recharged through the skin. My toothbrush recharges wirelessly, why can't the VNS do the same?
3) A less-permanent way of attaching the leads to the nerve, so it could be removed more easily if needed.
4) More data on what settings should be tried. It appears to be little more than a guess right now.
5) Programmable via a phone. I worked for a pacemaker company almost a decade ago and we already had this technology. Doctors could interrogate and program the pacemaker through the phoneline from anywhere. It's ridiculous to have to go to a doctors office just to do this, especially if no doctors in your area are qualified.
6) In the future, it also should be able to sense when a seizure is starting and turn on only at that time. It seems so low tech to just have it go on and off 24 hours a day. Other companies are working on this, and I think we'll see it before too long, especially if the right mergers take place in the near future.
Monday, November 20, 2006
Done with Lamictal
We continued to lower John's Lamictal, to the point that his last dose was Friday night. He is suffering some withdrawal symptoms, including stronger and more numerous seizures. We're crossing our fingers that this will subside over the next couple of weeks. He seems ridiculously happy the last couple of days, though, so it's a good trade-off as far as I'm concerned.
John's latest ferritin level came back at 36, which is much better than before but still on the low side. We went through his seizure journal and it looks like his seizures started getting worse when we started giving him an iron supplement. So, we stopped giving him the iron supplement. The seizure count has remained high, so we might have to start him back on the iron supplement soon. It didn't seem likely that an iron supplement could cause more seizures, but you just never know.
John has now gone to his preschool twice without Yoshie. They say he did fine. That's good news. We have no idea what they teach him there, but the fact that he didn't scream the whole time is great. We also have an appt. next week to meet with another special-needs preschool.
John's second attempt at the organic acid test also failed. His tropic acid level was too high. The lady at the lab called the maker of John's seizure meds to see if they might be causing this, but they definately aren't. She then called other labs that do organic acid testing to see if they had ever run across elevated tropic acid levels. Well, no-one has ever seen this, except when certain meds are being taken. They wanted to make sure that no-one was "sneaking" meds to John, as they didn't have any other explanation. That's ridiculous, of course. So, we have something to pursue again. I suspect it might be something in his Chinese herb concoction. I sort of hope not, though, as a result like this might be a crucial key to figuring out what John's underlying problem is. To us, it still seems like some metabolic problem. All these things must mean something:
1) Very low ferritin levels, despite getting adequate iron in his diet.
2) An IgG reading of zero.
3) Elevated tropic acid level, which no-one seems to be able to explain.
4) The fact that AED drugs and the keto diet seem to be completely useless against his seizures.
John's latest ferritin level came back at 36, which is much better than before but still on the low side. We went through his seizure journal and it looks like his seizures started getting worse when we started giving him an iron supplement. So, we stopped giving him the iron supplement. The seizure count has remained high, so we might have to start him back on the iron supplement soon. It didn't seem likely that an iron supplement could cause more seizures, but you just never know.
John has now gone to his preschool twice without Yoshie. They say he did fine. That's good news. We have no idea what they teach him there, but the fact that he didn't scream the whole time is great. We also have an appt. next week to meet with another special-needs preschool.
John's second attempt at the organic acid test also failed. His tropic acid level was too high. The lady at the lab called the maker of John's seizure meds to see if they might be causing this, but they definately aren't. She then called other labs that do organic acid testing to see if they had ever run across elevated tropic acid levels. Well, no-one has ever seen this, except when certain meds are being taken. They wanted to make sure that no-one was "sneaking" meds to John, as they didn't have any other explanation. That's ridiculous, of course. So, we have something to pursue again. I suspect it might be something in his Chinese herb concoction. I sort of hope not, though, as a result like this might be a crucial key to figuring out what John's underlying problem is. To us, it still seems like some metabolic problem. All these things must mean something:
1) Very low ferritin levels, despite getting adequate iron in his diet.
2) An IgG reading of zero.
3) Elevated tropic acid level, which no-one seems to be able to explain.
4) The fact that AED drugs and the keto diet seem to be completely useless against his seizures.
Thursday, November 09, 2006
After our scare a couple of weeks ago with the worsening seizures, things started to get better again. Whew! He's now back to having 10-20 seizures a day, and maybe a little smaller again. No more signs of anything like a drop.
Somehow, we totally forgot both his Lamictal and Felbatol last Friday night. Strangely enough, he slept better that night and had a good day on Saturday. This has inspired us to start lowering his Lamictal again, which we did last Saturday. He is now only taking 25mg/day. Hopefully he can be completely off of it in a few weeks.
John got his ferritin level checked again today. We'll get results next week. Hopefully his levels are better. I think we'll have to monitor this for awhile, as we still don't have a good reason as to why his level was so low.
We made the decision to take John out of his preschool class. It was just too much for him. We are now looking to get him enrolled in another special needs class, as well as potentially starting music therapy. Yoshie has also started doing multiple therapy sessions with him daily. He's up to 60 minutes at a time now!
We did have another meeting with EI, which was attended by 7 or 8 people (not including us). The meetings seem to grow each time. John will be getting a 1 on 1 aid starting next week. It's only for 1 month, but that is a good start. Yoshie will be leaving him at the door and won't return until class is over, at least that is the plan. They know that John will likely cry the whole time, so we talked about ways to prevent that. I'm sure the first week will be tough, but hopefully he will adapt quickly.
Unfortunately, after being almost perfectly potty trained for a few months, John has been having frequent accidents over the last couple of days, even at night. I'm not sure what is causing this, but I don't think it's reason for worry unless it persists. It could be another withdrawal symptom from lowering the Lamictal.
Somehow, we totally forgot both his Lamictal and Felbatol last Friday night. Strangely enough, he slept better that night and had a good day on Saturday. This has inspired us to start lowering his Lamictal again, which we did last Saturday. He is now only taking 25mg/day. Hopefully he can be completely off of it in a few weeks.
John got his ferritin level checked again today. We'll get results next week. Hopefully his levels are better. I think we'll have to monitor this for awhile, as we still don't have a good reason as to why his level was so low.
We made the decision to take John out of his preschool class. It was just too much for him. We are now looking to get him enrolled in another special needs class, as well as potentially starting music therapy. Yoshie has also started doing multiple therapy sessions with him daily. He's up to 60 minutes at a time now!
We did have another meeting with EI, which was attended by 7 or 8 people (not including us). The meetings seem to grow each time. John will be getting a 1 on 1 aid starting next week. It's only for 1 month, but that is a good start. Yoshie will be leaving him at the door and won't return until class is over, at least that is the plan. They know that John will likely cry the whole time, so we talked about ways to prevent that. I'm sure the first week will be tough, but hopefully he will adapt quickly.
Unfortunately, after being almost perfectly potty trained for a few months, John has been having frequent accidents over the last couple of days, even at night. I'm not sure what is causing this, but I don't think it's reason for worry unless it persists. It could be another withdrawal symptom from lowering the Lamictal.
Friday, November 03, 2006
John's seizures have continued to increase in number since my last post. They have also increased in intensity again. He has had many days of 30+ seizures again, with some seizures back to lasting a couple of seconds. Yoshie thinks he may have also had a couple of drop seizures yesterday, though she isn't 100% sure. I can't imagine making him wear the helmet again, so hopefully these incidents were nothing. We haven't changed anything, and we've even gone back to the herbal formula that he was on a few weeks ago when things were going so well. His good and bad stretches once again appear to be completely random. He does have a bit of a cold now, and that could well be the culprit this time.
John has remained on 37.5mg Lamictal and 5.5ml of Felbatol for quite awhile now. We were hoping to further reduce his Lamictal but we're not going to do it when things are going backwards. John has also remained on a gluten-free, dairy-free, and limited sugar diet. This may have helped his stomach issues (as he no longer has issues!), but sure doesn't appear to help the seizures.
Yoshie is continuing to do a lot of therapy with John, with the guidance of our ABA therapist. She is now doing two 50 minute sessions per day. Most days, John does pretty well with this. He is still making progress, albeit at a very slow pace.
The naturopath had us do an organic acid test. So, John had to further limit his diet for 48 hours, and we sent the test off. There was some acid that came in outside of the normal boundaries and would be very unusual if true. To verify this, we have to re-do the test, which means he's back on the very stringent diet for the next couple of days. I suspect the herbs are messing with the test results.
John is still taking an iron supplement. We'll get his ferritin level checked again next week. Hopefully we can get that back in the normal range.
John has continued to go to his preschool and his Early Intervention class, both with mixed results. John has a hard time with "circle time" especially. Yoshie continues to accompany him to both classes, though we're still hoping to begin to phase her out with time. We've had a couple of meetings with the EI team. The first one resulted in a Psychologist monitoring John in several scenarios: home, EI, and preschool. The next meeting she presented her report, which basically recommended that John remain in his current setting, with the goal of getting Yoshie phased out. We requested a 1 on 1 aid again, and hopefully that will come through - though I doubt it. We also are getting a recommendation to be evaluated by the autism program. Some of the EI specialists don't think this is a good idea, because it's really intense and they think it would be too much for John. What we argue is that those kids get exponentially more services than John, including a daily speech therapist. We were told again that 15 minutes/month of speech therapy is a lot in John's case. In any case, we feel that it doesn't hurt to try. If it's too much, we'll take him out.
We have another meeting with EI next week.
We did get out trick or treating on Halloween. John wasn't very interested, of course. He just doesn't understand it. He was mostly interested in picking up barkdust from people's yards and throwing any ball he could find. He was a furry monster, which was a good choice since it was really cold that night! (click below for some halloween pics!)
John has remained on 37.5mg Lamictal and 5.5ml of Felbatol for quite awhile now. We were hoping to further reduce his Lamictal but we're not going to do it when things are going backwards. John has also remained on a gluten-free, dairy-free, and limited sugar diet. This may have helped his stomach issues (as he no longer has issues!), but sure doesn't appear to help the seizures.
Yoshie is continuing to do a lot of therapy with John, with the guidance of our ABA therapist. She is now doing two 50 minute sessions per day. Most days, John does pretty well with this. He is still making progress, albeit at a very slow pace.
The naturopath had us do an organic acid test. So, John had to further limit his diet for 48 hours, and we sent the test off. There was some acid that came in outside of the normal boundaries and would be very unusual if true. To verify this, we have to re-do the test, which means he's back on the very stringent diet for the next couple of days. I suspect the herbs are messing with the test results.
John is still taking an iron supplement. We'll get his ferritin level checked again next week. Hopefully we can get that back in the normal range.
John has continued to go to his preschool and his Early Intervention class, both with mixed results. John has a hard time with "circle time" especially. Yoshie continues to accompany him to both classes, though we're still hoping to begin to phase her out with time. We've had a couple of meetings with the EI team. The first one resulted in a Psychologist monitoring John in several scenarios: home, EI, and preschool. The next meeting she presented her report, which basically recommended that John remain in his current setting, with the goal of getting Yoshie phased out. We requested a 1 on 1 aid again, and hopefully that will come through - though I doubt it. We also are getting a recommendation to be evaluated by the autism program. Some of the EI specialists don't think this is a good idea, because it's really intense and they think it would be too much for John. What we argue is that those kids get exponentially more services than John, including a daily speech therapist. We were told again that 15 minutes/month of speech therapy is a lot in John's case. In any case, we feel that it doesn't hurt to try. If it's too much, we'll take him out.
We have another meeting with EI next week.
We did get out trick or treating on Halloween. John wasn't very interested, of course. He just doesn't understand it. He was mostly interested in picking up barkdust from people's yards and throwing any ball he could find. He was a furry monster, which was a good choice since it was really cold that night! (click below for some halloween pics!)
