We've had John down to 200mg (1 pill) of Banzel in the mornings and evenings without any change, so we (along with our doctor of course) have decided to take him off of it completely. It's likely not doing anything at that low dose anyway. We've halved the amount for now, and will half it again next week, then get rid of it completely. Next up is Klonopin. This is an old-school drug. It's a benzodiazapene, which we haven't tried in years and which I would have refused a few years ago. But, our neurologist talked us in to giving it a try. I'm mostly worried that even if it works, John's body will become accustomed to it, and we'll have to raise the dose to keep it effective. You can do that for awhile, but at some point it gets to toxic levels. Then, withdrawal is very difficult.
Like all of these drugs, the side effects are pretty bad. Here are the common side-effects:
ADVERSE REACTIONS: The most frequently occurring side effects of Klonopin are referable to CNS depression. Experience to date has shown that drowsiness has occurred in approximately 50% of patients and ataxia in approximately 30%. In some cases, these may diminish with time; behavior problems have been noted in approximately 25% of patients.
John has continued to have his normal amount of small seizures. His seizures often present themselves as vomiting episodes now, which is pretty frustrating. We've had to send a lot of spare clothes to school.
He knows a LOT of songs now, and tries to talk quite a bit.
We're also looking in to getting John in to the special needs dentist at OHSU. They will sedate him if necessary. If they have to sedate him anyway, we'll probably try to get an MRI done again while he is sedated. It's been a few years since he's had one.
I'm also looking in to genetic testing. It costs several thousand dollars, and insurance may or may not help. The doctor said he'd refer John, but it's up to us to contact the testing company and insurance to see what they can do.
I'm off to an "Emerging therapies in Epilepsy" lecture tonight at OHSU. Should be good.
Wednesday, December 16, 2009
Wednesday, October 14, 2009
up and down
John went through a pretty rough patch last month. But, as is often the case, his best days come after the rough patches. He's doing quite well now. We see very few seizures these days, and his speaking has really improved lately. He uses his AAC device pretty well to request things. And, he'll repeat almost anything you say. The other day we were in our car and Maya left to get something in the house. John said, "Maya, Where go?". Wow, that was pretty cool.
We're down to 300mg Banzel in the AM, and 200mg in the PM, which is about half of what he was on last month. Clearly he's doing better. Now we are wondering if we should just keep it where it is, or try to go lower still.
The big issue we are dealing with now is nightly bedwetting. John has never had a problem with this until about 6 weeks ago. Now it's an issue every single night. For awhile Yoshie was getting up every few hours to take him to the bathroom, and he would still have accidents. He also seems ridiculously thirsty at times. Makes us worry about diabetes. We did go to his pediatrician and they did a urine test that came out normal. But since he went years without any bedwetting, they wanted us to go see a urologist. We're trying to make that appt. now, though it's been pretty tough to get an appointment in a short amount of time.
School has started. John is in 2nd grade now. He seems to like it, and I think he is doing well. We got a note the other day saying he is doing great in speech.
We're down to 300mg Banzel in the AM, and 200mg in the PM, which is about half of what he was on last month. Clearly he's doing better. Now we are wondering if we should just keep it where it is, or try to go lower still.
The big issue we are dealing with now is nightly bedwetting. John has never had a problem with this until about 6 weeks ago. Now it's an issue every single night. For awhile Yoshie was getting up every few hours to take him to the bathroom, and he would still have accidents. He also seems ridiculously thirsty at times. Makes us worry about diabetes. We did go to his pediatrician and they did a urine test that came out normal. But since he went years without any bedwetting, they wanted us to go see a urologist. We're trying to make that appt. now, though it's been pretty tough to get an appointment in a short amount of time.
School has started. John is in 2nd grade now. He seems to like it, and I think he is doing well. We got a note the other day saying he is doing great in speech.
Monday, September 07, 2009
Lowering Banzel
It's been 5 weeks since John has been off of the Keppra and on 1000mg of Banzel daily. Unfortunately, his seizures have gotten progressively worse. We can't go any higher on the Banzel, and we're not too keen to add the Keppra back in. But, we couldn't sit back and do nothing. So, we actually lowered the Banzel to 800mg/day on Saturday. It could be that he just doesn't do well with the Banzel at that level. He's actually improved a little since Saturday, so maybe that was it. It's just as likely that it was just a fluke. At least he didn't get worse.
Except for the seizures, John has been doing great. He is repeating a lot of words now, and using his communication device more and more.
We were able to get out for a short vacation up to Vancouver BC. He did great in the car, and liked the water parks and swimming pool of course.
2nd grade starts tomorrow!
Except for the seizures, John has been doing great. He is repeating a lot of words now, and using his communication device more and more.
We were able to get out for a short vacation up to Vancouver BC. He did great in the car, and liked the water parks and swimming pool of course.
2nd grade starts tomorrow!
Thursday, August 06, 2009
Done with Keppra
Keppra was a good drug for John. It stopped his daily tonic-clonic seizures the first day we gave it to him. But, we also suspected all along that it added to his already out of control hyperactivity. So, we have been lowering his Keppra while adding Banzel. As of 3 days ago, he is completely off the Keppra. We have increased his Banzel to 1000mg/day. He's still having the same number of small daily seizures (~20 a day). But we also think his overall mood has improved and we also feel like he is understanding more. So, I'd say that was a success. It's also nice to have him back on monotherapy.
Today is also John's last day of summer school. Kind of too bad, as I think he really enjoyed it.
Today is also John's last day of summer school. Kind of too bad, as I think he really enjoyed it.
Thursday, June 25, 2009
Disneyland
We had a great trip to Disneyland last week. John did fine on the 1000 mile drive, and was pretty good in the parks for the most part. Of course he had some episodes, but nothing too bad. We were able to get a disability pass, so we could go to the front of the line for most rides. We tried to wait in a couple of the shorter lines but John went crazy and we realized just how essential that disability pass was. Without it, we would not have been able to do a single ride.
See the pictures: http://picasaweb.google.com/dyhopper/Disneyland0902#
John mostly liked the thrilling rides, and he did all of them in both California Adventure and Disneyland, except the 2 that he wasn't tall enough for. Here he is on a less thrilling ride, but loving it just the same:
John continues to do well as we lower his Keppra and raise the Banzel. He is still having the same number of seizures, but his overall demeanor is improving. Tonight we lowered his Keppra again so he is now taking only 1ml twice a day. It makes us a little nervous, as John was having tonic clonic seizures every day until we started the Keppra. But, that was a long time ago so we're hoping we can get rid of the Keppra completely without any problems.
See the pictures: http://picasaweb.google.com/dyhopper/Disneyland0902#
John mostly liked the thrilling rides, and he did all of them in both California Adventure and Disneyland, except the 2 that he wasn't tall enough for. Here he is on a less thrilling ride, but loving it just the same:
John continues to do well as we lower his Keppra and raise the Banzel. He is still having the same number of seizures, but his overall demeanor is improving. Tonight we lowered his Keppra again so he is now taking only 1ml twice a day. It makes us a little nervous, as John was having tonic clonic seizures every day until we started the Keppra. But, that was a long time ago so we're hoping we can get rid of the Keppra completely without any problems.
Wednesday, May 27, 2009
Banzel
We've now increased the Banzel to 1 full pill, twice a day. We've also lowered his Keppra by 1ml in the morning. He's now taking 2ml in the AM, and 3ml in the PM. So far, he seems to actually be MORE hyperactive, and the seizures are continuing as before. I think some of this is just his body responding to the change in drugs. We're hopeful that he will calm down a bit with time.
I was able to get off work early and go to John's speech therapy session last week. Unfortunately, since I was there John wouldn't go through therapy without my being in the room. My being there kind of ruined the session. I was able to get off work early a 2nd time and wanted to see John in a true session, so I hid in the back of our van with a blanket over me all the way to PSU. John had no idea I was there. Man, it got hot in there. Once John was in the room, I was able to go to the viewing area to watch him. That was pretty interesting. He likes his therapist, and they have a good time playing, but John doesn't seem to learn much.
The weather has finally gotten consistently nice around here, so Maya and John and I have been able to ride our bikes a little. Maya rides her new Mtn. bike, while John rides on a tag-a-long behind my bike. He often screams with joy and sings a lot while we ride. He also has started to pedal sometimes which is cool. He can also pedal his own bike for a little while (with training wheels), but he gets distracted so easily that he keeps running in to things and he quickly tires of it. Hopefully by the end of this summer I can get him to ride to the park on his own.
I was able to get off work early and go to John's speech therapy session last week. Unfortunately, since I was there John wouldn't go through therapy without my being in the room. My being there kind of ruined the session. I was able to get off work early a 2nd time and wanted to see John in a true session, so I hid in the back of our van with a blanket over me all the way to PSU. John had no idea I was there. Man, it got hot in there. Once John was in the room, I was able to go to the viewing area to watch him. That was pretty interesting. He likes his therapist, and they have a good time playing, but John doesn't seem to learn much.
The weather has finally gotten consistently nice around here, so Maya and John and I have been able to ride our bikes a little. Maya rides her new Mtn. bike, while John rides on a tag-a-long behind my bike. He often screams with joy and sings a lot while we ride. He also has started to pedal sometimes which is cool. He can also pedal his own bike for a little while (with training wheels), but he gets distracted so easily that he keeps running in to things and he quickly tires of it. Hopefully by the end of this summer I can get him to ride to the park on his own.
Wednesday, May 20, 2009
Another new drug
Well, that ADHD med also caused a rash on the 4th or 5th day. I guess John has an allergy to stimulants. We weren't really happy with it anyway. We might try Strattera next, but we had an appt. with his neurologist and decided to try a different path for now. As of May 18, we have started him on a new seizure drug called Rufinamide (Banzel). This is a new drug, only approved a few months ago. The hope is that this drug will work for John and we can lower his Keppra dose. Keppra is likely causing at least some of his hyperactivity so that is why we want to get that as low as possible. We also had his VNS turned up a bit again. It's still nowhere near as strong or frequent as it was in the past, but we're slowly inching it back up.
John's in-home speech therapist (that we love) is taking some time off, but John still goes to PSU twice a week for speech therapy.
We got some financial assistance from the county to hire a behavioral therapist as well. We had the first session last weekend. We're going to try to work on getting John to sit at the table during meal-time, and to fall asleep without one of us having to be in his bed. We're also going to take the therapist on a shopping trip, and maybe out to eat, so she can see some of the challenges we face there.
We had a scary experience on Sunday while I was watching John. We were out front of our house. I was cleaning my bike and John was climbing and playing with rocks as usual. He took his shoes off, so I made him go inside for a bit. After awhile, I went in to check on him and I couldn't find him. I frantically looked everywhere and finally realized that he had pushed a window screen out and was gone. I ran down the street towards the busy cross street looking for him, but couldn't find him, so I ran the other way towards the park and still couldn't find him. I went back inside to see if he was there, but he wasn't. So, I went back out towards the busy street again yelling at the top of my lungs. I finally saw John coming back towards the house laughing and barefoot. Once I got to him, I noticed that traffic was stopped at the intersection and people were out of their cars. I don't know exactly what happened, but he at least had traffic stopped. A guy yelled from a distance "He was almost killed!". Very scary. I don't know where he thought he was going. I'm sure the people didn't know what to do, as he can't understand anything and probably had no regard at all for oncoming cars. We're just glad he's safe, and we are putting locks on our windows so they can't open too far.
John's in-home speech therapist (that we love) is taking some time off, but John still goes to PSU twice a week for speech therapy.
We got some financial assistance from the county to hire a behavioral therapist as well. We had the first session last weekend. We're going to try to work on getting John to sit at the table during meal-time, and to fall asleep without one of us having to be in his bed. We're also going to take the therapist on a shopping trip, and maybe out to eat, so she can see some of the challenges we face there.
We had a scary experience on Sunday while I was watching John. We were out front of our house. I was cleaning my bike and John was climbing and playing with rocks as usual. He took his shoes off, so I made him go inside for a bit. After awhile, I went in to check on him and I couldn't find him. I frantically looked everywhere and finally realized that he had pushed a window screen out and was gone. I ran down the street towards the busy cross street looking for him, but couldn't find him, so I ran the other way towards the park and still couldn't find him. I went back inside to see if he was there, but he wasn't. So, I went back out towards the busy street again yelling at the top of my lungs. I finally saw John coming back towards the house laughing and barefoot. Once I got to him, I noticed that traffic was stopped at the intersection and people were out of their cars. I don't know exactly what happened, but he at least had traffic stopped. A guy yelled from a distance "He was almost killed!". Very scary. I don't know where he thought he was going. I'm sure the people didn't know what to do, as he can't understand anything and probably had no regard at all for oncoming cars. We're just glad he's safe, and we are putting locks on our windows so they can't open too far.
Wednesday, April 29, 2009
Try Again
The Metadate didn't work out. John developed a rash soon after taking it every morning. The rash didn't last long, but the doctor told us to discontinue it. It was hard to tell for sure, but the school thought it might be helping him some. This was also the first time in 15 years that the doctor had seen this drug cause a rash. No surprise to us that John would be the rare case. We did see a slight increase in seizures as well, which was another reason to stop it.
We have raised John's Keppra to 3ml/twice a day. I think we still might have to go higher, as he continues to have quite a few daily seizures, and they seem to gradually be getting stronger.
John was sick for a couple of weeks. But now that he is better, we have started him on another ADHD drug. This one is a generic form of Dexedrine. The school says he is able to focus better, but when he came home he seemed pretty out of it and not himself at all. That is unsettling to us and we''ll have to monitor closely. He takes the extended release form, and I'm guessing that the effect is wearing off when he comes home causing a letdown feeling that is a documented side-effect. We'll get a better idea when we can watch him all day on the weekends.
We were able to take advantage of our local ARC "Parent's night out" last week. We dropped John off at 6:30, and picked him up at 8:45. We had no idea how he would handle that, but they said he was a joy to have there and he was well behaved. Hmmm. That was not what we expected, but certainly great news. We'll continue to take advantage of this every month. They also have a "summer camp" with the same caregivers that goes all summer.
We have raised John's Keppra to 3ml/twice a day. I think we still might have to go higher, as he continues to have quite a few daily seizures, and they seem to gradually be getting stronger.
John was sick for a couple of weeks. But now that he is better, we have started him on another ADHD drug. This one is a generic form of Dexedrine. The school says he is able to focus better, but when he came home he seemed pretty out of it and not himself at all. That is unsettling to us and we''ll have to monitor closely. He takes the extended release form, and I'm guessing that the effect is wearing off when he comes home causing a letdown feeling that is a documented side-effect. We'll get a better idea when we can watch him all day on the weekends.
We were able to take advantage of our local ARC "Parent's night out" last week. We dropped John off at 6:30, and picked him up at 8:45. We had no idea how he would handle that, but they said he was a joy to have there and he was well behaved. Hmmm. That was not what we expected, but certainly great news. We'll continue to take advantage of this every month. They also have a "summer camp" with the same caregivers that goes all summer.
Thursday, March 26, 2009
New drug
We saw the developmental pediatrician yesterday, and she prescribed Metadate CD for John's hyperactivity. This drug is the same as Ritalin LA. One capsule lasts for about 8 hours. We HATE giving John more drugs, but it seemed like it was time to try something. He can't concentrate very well, which makes it really hard to learn anything. We're hoping this will help him to focus, without taking away anything from his personality. Side effects include increase in heart rate, decrease in appetitite, and of course a lowering of seizure threshold. :(
Today was the first dose and according to Yoshie, it isn't working - he's as active as ever. This is a small dose, and there are many other meds to choose from, but of course we were hoping the first one would do the trick.
Also, John's quick little seizures have been increasing in number so we increased his Keppra recently to 2.5ml twice a day. John is still doing great, but we want to stop this increase in seizures before it gets out of hand.
Today was the first dose and according to Yoshie, it isn't working - he's as active as ever. This is a small dose, and there are many other meds to choose from, but of course we were hoping the first one would do the trick.
Also, John's quick little seizures have been increasing in number so we increased his Keppra recently to 2.5ml twice a day. John is still doing great, but we want to stop this increase in seizures before it gets out of hand.
Johns cut seems to be healing nicely. He's going to have quite a scar, but other than that seems to have no other issues.
Monday, March 02, 2009
cut
It's been two days since John got cut, so we had to change the bandage tonight. It took both of us to hold him down, but we got it done. The incision looks good. I think it will heal pretty well.
Sunday, March 01, 2009
More excitement
John has been doing pretty well lately. We have seen some very small seizures come back. These are just a split-second tightening and a slight head-drop. So far, we've only seen them when he is really agitated. We also got an appointment with the developmental pediatrician to look at options for his hyperactivity. That is on March 25.
Yesterday, we got to spend the afternoon in the ER again. John was climbing on a picture that we had leaning against a wall (it wasn't hanging, because we thought he might pull it down). Anyway, this was a large picture with a glass front. The frame broke and the glass broke and John got a huge cut on his back as he fell on it. Yoshie screamed that we needed to get to the ER so off we went. I didn't even see the cut until we pulled up at the ER. Wow. It was very nasty. Probably 4 inches long, and 1cm wide, with the fat coming out. He was screaming so they took us right back. The doctor took a look and said that it looked like a "clean" cut, and didn't hurt anything inside. I guess we're lucky in that sense. It easily could have gone a little deeper and done more damage.
This required general anethesia, but he had just eaten so we had to wait 90 minutes before they could do anything. That was a long 90 minutes (and included several small seizures). They had 5 nurses in there to hold him down to give him the shots, and they told us he would get sleepy in 20 minutes. About 30 seconds later he was completely out. It happened so fast, that we all got alarmed and the doctor was called in again. Vital signs were fine, so he started stitching him up right away. 4 internal stitches, and 18 external. We had to wait another 90 minutes for him to sort of wake up, and we were discharged. As soon as we got to the car, he threw up everywhere. We decided to go home anyway. He was in a lot of pain, and couldn't stand more than a few seconds. By about 9pm, he started feeling better. This morning, he seems 100% back to his normal self. He's climbing everything and his cut doesn't even seem to bother him. It's going to be a challenge to keep the bandage on, but so far so good.
I only had my cheap cell phone camera with me, but you can get an idea of the cut:
Yesterday, we got to spend the afternoon in the ER again. John was climbing on a picture that we had leaning against a wall (it wasn't hanging, because we thought he might pull it down). Anyway, this was a large picture with a glass front. The frame broke and the glass broke and John got a huge cut on his back as he fell on it. Yoshie screamed that we needed to get to the ER so off we went. I didn't even see the cut until we pulled up at the ER. Wow. It was very nasty. Probably 4 inches long, and 1cm wide, with the fat coming out. He was screaming so they took us right back. The doctor took a look and said that it looked like a "clean" cut, and didn't hurt anything inside. I guess we're lucky in that sense. It easily could have gone a little deeper and done more damage.
This required general anethesia, but he had just eaten so we had to wait 90 minutes before they could do anything. That was a long 90 minutes (and included several small seizures). They had 5 nurses in there to hold him down to give him the shots, and they told us he would get sleepy in 20 minutes. About 30 seconds later he was completely out. It happened so fast, that we all got alarmed and the doctor was called in again. Vital signs were fine, so he started stitching him up right away. 4 internal stitches, and 18 external. We had to wait another 90 minutes for him to sort of wake up, and we were discharged. As soon as we got to the car, he threw up everywhere. We decided to go home anyway. He was in a lot of pain, and couldn't stand more than a few seconds. By about 9pm, he started feeling better. This morning, he seems 100% back to his normal self. He's climbing everything and his cut doesn't even seem to bother him. It's going to be a challenge to keep the bandage on, but so far so good.
I only had my cheap cell phone camera with me, but you can get an idea of the cut:
Sunday, February 08, 2009
No seizures
That last increase in the Keppra did the trick. We haven't seen a seizure since Christmas. He's still on only 2ml twice a day, so we have a lot of room to go up if needed. Hopefully, he won't need it. It's no surprise that with the increase came even more hyperactivity and sleeping troubles. He wakes up every night for 2-3 hours these days. He comes to our bed, and just makes noises and things. It's amazing that he can function so well without ever getting a full nights rest.
We got a referral to see a developmental pediatrician to discuss putting him on some hyperactivity drug. While we're awaiting that, we're also trying the herbs again to see if that might help. He HATES the taste of the herbs, so it's a battle to get him to take it.
We've also decided to slowly get John up to date with his vaccines. We're going to just get one at a time so there is no risk of overloading his system. He only needs 5 more total, so it shouldn't be too bad.
I think John has grown a lot lately. He also lost a couple of teeth (He pulls them out when they get loose). I'll post a picture soon.
He is taking speech therapy 3 times a week now (on top of his normal school day services). It sometimes seems like he makes progress, but he still only has a handful of words. He is pretty good with a picture system, though. And, he loves to sing, though we don't always know what he is singing.
Maya turned 10 a few weeks ago. Check out her blog...
mayahopper.blogspot.com
We got a referral to see a developmental pediatrician to discuss putting him on some hyperactivity drug. While we're awaiting that, we're also trying the herbs again to see if that might help. He HATES the taste of the herbs, so it's a battle to get him to take it.
We've also decided to slowly get John up to date with his vaccines. We're going to just get one at a time so there is no risk of overloading his system. He only needs 5 more total, so it shouldn't be too bad.
I think John has grown a lot lately. He also lost a couple of teeth (He pulls them out when they get loose). I'll post a picture soon.
He is taking speech therapy 3 times a week now (on top of his normal school day services). It sometimes seems like he makes progress, but he still only has a handful of words. He is pretty good with a picture system, though. And, he loves to sing, though we don't always know what he is singing.
Maya turned 10 a few weeks ago. Check out her blog...
mayahopper.blogspot.com