Japan trip

The trip to Tokyo went well. I think John had a great time. The flights were tough, but only because he was happy and making a lot of noise. That is a lot better than crying or breaking down out of frustration. He loved all of the trains, the noodles, Disneyland, etc. Overall we had a great trip.

Here are some pics:


Tokyo Disney Sea


Shibuya




Enjoying an ice coffee at McDonalds



Roller coaster at Toshimaen



Anpanman ride


Easting some noodles at a shop in the Ikebukuro train station.



Leaving rainy Portland

Big week

John turned 9 earlier this week. We just had a family party, but he had a great time opening presents, eating cake, and jumping in the inflatable bouncer with his cousins.
Yesterday was his last day of 3rd grade. I think he had a pretty good year. He will be at the same school again next year, although his main teacher will change.
We're off to Tokyo tomorrow. It's anybodies guess how he will do on the long plane flight. He does great on long car drives, so we're hopeful the plane will be the same. But, he can also get very wound up and there is really no way to calm him down. It could be an interesting flight.
As far as seizures go, he has remained very consistent for a long time. He continues to have clusters of small seizures every day and the occasional larger seizure. Learning is the same as always. He continues to learn, but progress is so slow that it is sometimes hard to tell.

Update

The increase in the zonisamide didn't help at all. In fact, his seizures have gotten somewhat worse lately. He's having a lot of small seizure clusters that last 10-15 minutes. And, he's having an occasional bigger seizure that makes him vomit and wears him out for a couple of hours. But, the seizures are once again different and not violent at all. They are obvious to us, but probably not to others unless they are staring right at him.
So, we've lowered the zonisamide back down to 125mg/day and we'll give that a couple of weeks. I suspect we are going to be back on the drug roller coaster soon. Pretty sure Vigabatrin is next. We haven't tried it before, mostly due to a potential permanent side effect having to do with your field of vision. But, the chances of that are small and we have to weigh the potential benefits with the risks, as always.
John has a real issue with not wanting to eat anything in the morning. And, he is totally uncooperative if he doesn't eat. So, he now eats breakfast at school. We tried getting him to eat from the cafeteria but it didn't work out so well. So, he basically eats snacks now for breakfast. Not the most healthy option, but I think parents of similar kids would understand.
We're planning a trip to Japan this summer. John hasn't been on an airplane since he was 1, so it might be a big adventure. Thankfully, in-flight entertainment has come a long ways since then and we have an iPad that we'll load up with movies and games. I think he'll be OK.

Dentist Bill

Who would have expected that getting a tooth pulled would cost over $8500? That is just ridiculous. Our copay is about $1700. Kind of stings, especially considering that it was the dentists fault that we had to end up doing it in the ER instead of in the office with IV sedation.
But, they did a good job and John's front teeth are moving in the right direction. They will never be perfect, but after looking at the picture below just after the surgery I see just how much better it has gotten. I'll post a picture soon.

We had another appointment with the neurologist. We decided to raise his Zonisamide level from 125 to 150mg. His blood work showed the level was pretty low and John has grown a lot since we started this med. We'd like to get rid of the occasional big seizures. I think we can live with the daily head-nods at this point. We also learned that John's VNS is within 9 months of having to be replaced. Man, we thought this one would last 7-8 years. Sure didn't expect it to run out this fast. We talked about just shutting it off and seeing what happens. We have no idea if it is still doing anything.

School reports that John has been getting harder and harder to handle. We don't really know what to do about it. We haven't really seen any change at home. They also say he will eat non-stop all day. It is definately true that you have to keep John well-fed if you want him to be happy. Since he has always refused to eat in the morning before the bus comes, we asked that they feed him breakfast after he gets to school. I hope this will help with some of his behavior issues.

We've been using iProloqueToGo on our iPad for John's communication device. It has been great and is such a nice alternative to the usual bulky devices. Hopefully the school will follow suit at some point.

John is back at PSU for speech twice a week and does well there. And, he enjoys swimming every Saturday.

Extra tooth

John had an extra baby tooth right in the front his mouth. We have known about it for a long time, and desperately tried to get someone to pull it out. We went to 2 dentists and even got an urgent appt. when the permanent teeth started coming in around the baby tooth. Despite all of this, we couldn't get an appointment to get it pulled out until recently. Everyone kept reassuring us that there was no harm in waiting. After waiting for months for our appointment to get it pulled under IV sedation, we got a phone call telling us that the dentist messed up their scheduling and had to cancel our appointment. They couldn't reschedule until March! There is no way we were waiting that long so we were able to schedule an appointment to get it done under general anesthesia in the operating room. We really hated to put John through that just to get a tooth pulled, but didn't see any other alternatives.
So, here is John just before going in for his surgery. Notice the extra little tooth behind the two permanent teeth on the top. Also notice how the 2 front teeth are way out of alignment because of this.



The operation itself went great. John actually took his meds to make him drowsy without any fuss this time. All of the nurses, doctors, and dentists were great. They pulled the tooth out and cleaned and sealed all of his other teeth. No cavities! They said his teeth looked great. The dentist came in and basically said that we waited too long to get it pulled and that John will almost certainly need braces in a couple of years. Arrgh. There is simply no way John will tolerate braces so we're hoping the teeth improve enough that we won't have to do that.
We also had John's bloodwork down while he was under anesthesia, including a genetic test.
Here he is after the surgery:



Still looking a little groggy:



John threw up several times in the hospital and after returning home. He also threw up the next day at school. That anesthesia is hard on his stomach.

And, the aftermath:



Other than that adventure, things have been going well. John has had a couple of larger seizures lately that have caused him to vomit, but otherwise he's been doing well.

some pictures

Now that it is almost winter, I thought I'd put up some pics from the summer.

John riding his scooter. Don't know how he got out without his helmet this time, but I promise that we always make him wear it.


Riding the zoo train:


On a boat ride on the Willamette:


On the Gondola ride up to Heavenly in Lake Tahoe:

Playing at Lake Tahoe:

Back to school

John started 3rd grade yesterday. He seemed happy to go back.
We had a good summer. I'll post some pictures soon of some of our adventures, including a long road trip down to Lake Tahoe.
I had a goal this summer of getting John to ride a bike without training wheels. Unfortunately he had a little accident on the tandem early in the summer (got his foot caught in the wheel). Maybe because of this he didn't have much interest in his bike. I finally got him out a couple of times and let him coast down a little grass hill without the training wheels. He did pretty good, but I could never get him to pedal. He doesn't know how to brake yet anyway, so maybe it's just as well.
Seizure-wise, John has been doing pretty well. He hasn't had a big seizure in awhile, but continues to have the many small head-drop seizures daily.
John has an extra tooth right in the front. His 2 permanent front teeth are coming in very crooked because of this. We have an appt. to have it pulled under sedation, but the waiting list is long so we're trying to figure out what to do.

Toy Story

Some parents organized a special showing of Toy Story 3 for special needs kids at our local theater. John has never been to a movie, so I was excited to take him to this.
They kept the noise a little lower, they kept the lights on a little, and there was the expectation that kids would be noisy and likely getting up and moving around. John was really happy for the first 10 minutes or so (the previews), but then lost interest in the movie. It didn't help that he drank a "medium" pop in the first 5 minutes. So, we spent another 30 minutes going to the bathroom and taking walks around the theater. We tried to sit down a couple of times but he just wasn't interested so we finally had to leave. It was a good try.

We got John's EEG results back, and I guess they were able to get some information out of them, despite the fact that John fought and cried for the entire test. The write-up just said the normal "multi-focal and generalized seizures". But, we talked to the nurse and she said the doctor compared the test with past tests and that his background is much improved. That is good news.

John has been having big seizures again. He had 2 in one day last week, and has had 1 each of the last 2 mornings. Yesterday, they were at the zoo without a stroller when John had his seizure. Yoshie couldn't carry him back, so Maya had to go get help. Of course they wanted to call 911, but Maya let them know that they didn't need to. They sent some help and were taken to the medical office until John woke up. After that, they were driven around and even got to cut to the front of the line for the train.

Father's Day

I thought I would post some pictures from our father's day get together at Lucky Lab.

John and Grandpa:
John, Dad, and Maya:

Another EEG fiasco

We took John in for another routine EEG. The last time we did this, he screamed for a long time and we had to forcefully hold him down so he wouldn't tear the leads off his head. So, we were prepared for a battle, but what we didn't take in to consideration is that John is 2 years older and a lot stronger now.
This went about as bad as you can imagine. We had to hold him tightly while he screamed just to get the leads stuck on. Then he didn't calm down at all for the actual test. Yoshie had to sit on top of him while I held his hands. He is incredibly tough and was able to escape my grasp a couple of times to pull a wire or two off. He fought and screamed for probably an hour. I really doubt they got any usable data from that. There are just too many artifacts that they would have to sift through. He did finally wear himself completely out and laid there quietly for about 2 minutes before resuming his rampage. Maybe they can get something from that.
Next time, we'll have to sedate him.
John was back to his happy self the second we left that room, but Yoshie and I were exhausted and we skipped the blood draw. I guess we'll have to go back to do that soon.

Happy Birthday!

John celebrated his 8th birthday on Sunday. We had the family over for a party and he had a great time. He now understands that the presents are for him, and he can open them by himself.
We got him a big ball that he can climb in:


We also took him out to lunch at his favorite Vietnamese Pho restaurant.


He's definitely growing up. School is out soon, but we have a lot of activities planned for him over the summer. Hopefully the weather will turn more summer-like soon.

Dr. Visit

We had another appointment with the neurologist. John is pretty stable these days so we decided not to change anything for now. We did get the VNS turned up slightly and we got an appt. for another routine EEG and blood draw (to determine the Zonisamide level).
We talked about how John's head drops have changed so that he turns to one side now. We're always hopeful that they will be able to pinpoint where these seizures are coming from. He asked if John sticks out one arm when having a seizure (like shooting a bow and arrow) and he asked if he turns circles or rolls over. We had to answer NO to all of these questions so the Dr. felt like these are still generalized seizures in every sense so likely nothing has changed. However in the days since this appt. I have noticed that he DOES stick one arm out and start to turn around for just a few seconds at the beginning of his longer seizures. Hopefully we will see something when he gets his EEG.

more zonegran

Since John continued to have the small seizures, we slowly ramped up the Zonisamide to 150mg a day. Soon after that, he started having 30-45 second tonic-clonic seizures again. We never know if it just coincidence but the correlation was strong enough this time that we lowered it back down to 125mg. Within 2 weeks, the tonic-clonic seizures were gone. So, we're pretty sure that the higher dose was causing problems. It could just as easily be something like he was fighting off some sickness. This has been a good drug otherwise, so we're content to keep him at 125mg for now. He still has the daily small "head-turning" seizures, but I think we can all live with those.
We've noticed that his "talking" has gotten a bit clearer lately. He likes to sing "Happy Birthday" and most of it is pretty clear now. And, he can count to 6 now. We'll see how long that lasts. School reports continually say that he is happy and excited.
He did get approved for extended year school this summer. That is definately a good thing, considering his tendancy to forget things that he has learned.

Zonegran

So, the Zonegran seems to be working. He's still having small seizures, but it seems like his mind has cleared somewhat. He is repeating lots of things now, and has picked up some more phrases ("take a walk"). And, as always, he is very happy. Just recently his seizures have changed to his head jerking to the side. That's different than the normal ones where is head falls straight down. Not sure what that means. And miraculously, all his issues with going to the bathroom every few minutes disappeared when the Zonegran got up to 100mg. I guess it was all somehow related. Now, if I could just take back all those tests we put him through.
I got him set up with a child stoker kit for our tandem and we have taken a few short rides on that. He still tries to jump off before we've come to a complete stop and sometimes rides with no hands. So, we still have some work to do to keep him safe with that.And, he continues with his normal odd behaviors like eating pencils. This week he took a bite of a light bulb. Somehow we got the glass out of his mouth without any cuts.
He also wrapped up another term of swimming. He still hasn't progressed to any actual swimming or even kicking, but he enjoys it.

Dentist

John finally got to the dentist for the first time. We found out that OHSU has a dentist for developmentally disabled kids so of course we signed him up.
We had to buckle him down tightly and 3 of us held him down why they tried to take a look. He wasn't very happy about it and let them know it. She was able to do a little cleaning (maybe 1 minutes worth), then they painted some flouride on. We tried really hard to get an x-ray, but were unsuccessful - he was just moving too much. As far as they could tell, everything looked OK. They said we'll do more at our next appt. in 6 months. I hate to tell them that it won't be any easier in 6 months! If anything, he'll just be that much stronger.

drug swap

The Klonopin didn't work out well at all. Not only did he become much more irritable, but seizures got much worse as well. His seizures were getting worse and worse every day and it scared us to the point that we took him off of it before things got out of hand. A few days off the drug and he returned to his normal self. Still having too many little seizures and bouncing off the walls, but way better than he was on the Klonopin.
We left him drug free for a couple of weeks again, and recently started him on yet another drug - Zonisamide. So far we haven't seen any bad side effects from this one, though school reported that he had a 50 second seizure yesterday. We're increasing the dose very slowly, so it might be awhile until we know if it has any benefit.

We also took John to the urologist to see if we could find any reason that John sometimes have to go to the bathroom 8-10 times in an hour. Like I said before, he also started wetting the bed every night, after not having this problem for many years. Something definately seems wrong, but so far we don't know what it is. His urine test was normal. The doctor suspects it is just behavioral though it sure doesn't feel like that to us. He has a x-ray and ultrasound on Monday to see if there are any structural problems. I assume that will all look OK and it will just be another thing that nobody can explain.

Klonopin

We ended up taking John off the Banzel and leaving him drug free for a couple of weeks. It's nice to see how he is without any drugs, but unfortunately his seizures persisted and his behavior and mood swings are uncontrollable. So, we started him on Klonopin last night. We'll see how it goes.

another new med on the horizon

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.

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.

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!

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.

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.

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.

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.

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.

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.

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.

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.

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:


 

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

Keppra increase

Since my last post, we have increased his Keppra to 2.0 ml, twice a day. He went through a tough time with bigger seizures so we had to do the increase. Thankfully, this really helped his seizures. He still has many daily seizures, but they are back to being small again. He seems to have bigger seizures during sleep, though. As expected, the Keppra caused John to be a wild child for awhile. He would change moods instantly, and get very easily frustrated. He would bang his head against the floor or wall to the point of hurting himself. This lasted for a few weeks, but is slowly getting better.
School is going fine. He has really taken a liking to two of his teachers. I think he enjoys his school and is doing well.
There is a lot of snow around here now, and John has been having a lot of fun playing in the snow. Mostly, he just loves to eat the snow. I'll post pictures later. The good news is that he wears his hat and gloves without any issue now.

Dr. Visit

We had an appt. with John's neurologist on Monday. We got his VNS turned up to 1.5mA, on for 30 seconds, off for 3 minutes. We're also going to increase his Keppra to 1.5ml twice a day. John has been sick since Monday, so we are holding off on this increase until he feels better. Hopefully, these changes will help with his lingering seizures, and also his development.

Cycling

I finally got up the nerve to try riding with John. Of course he loves it, and wants to go every day. I still worry about him having a seizure while riding or trying to jump off while we're moving. So far, he has been OK, though. He hasn't learned to pedal yet, but we're working on it. He likes to stand on the pedals and try to grab things as we go past, which of course makes the whole thing quite unstable. So, we keep it real slow.




For some reason, he really wants to ride Yoshie's bike. Of course it is way too big for him, but he still loves to have me push him around on it. He won't ride his little bike anymore. We'll have to get training wheels for Maya's bike and see if he'll ride that one.

First day of school

I'm a little late posting about John's school, but here he is on his first day of first grade. This was also Maya's first day of fourth grade:



John takes the bus for about 30 minutes each way. Here he is looking a little nervous on his first day:




So far, school has gone pretty well. At least we haven't been called to pick him up yet. :)
I think he's a handful for them, especially on the playground. The teacher has been really good about keeping us up to date with what he does each day. I stopped by the school one day when we forgot to give him his morning medicine and he looked happy.
He is getting a little too comfortable on the bus, and they have had to use the harness seatbelt to keep him in his seat. I don't like that, but safety first I guess.

Done with Felbatol

On Aug. 27, we gave John his last dose of Felbatol. So, it's been almost a month now, and we didn't really see much change. He still has seizures every day. Some days we see just a few, other days we see a hundred or more. But, these are still all the brief myoclonics and haven't progressed any further. John is currently only taking 1.2ml of Keppra twice a day. We see the neurologist again next week. I'm guessing we'll increase the Keppra, or change the VNS settings to try to reduce the myoclonics that he is having.

Felbatol reduction

John's myoclonic seizures have been getting slightly worse all summer long. He's still doing great, but we felt it was time to show the doctor what he was now experiencing.
We sent him these 2 videos:





After seeing these videos, he agreed that these were definately seizures (something he wasn't willing to admit a few months ago). Despite this, we got the OK to lower his Felbatol level, and hopefully get rid of it altogether in the near future. He just said to watch John carefully and if he starts falling or having Tonic-Clonics then we need to stop the reduction. It's been almost a week since we lowered the drug to 1ml, twice a day, and we haven't seen any problems yet.

Summer trips

Here's some pictures from our road trips last week:


Trillium Lake






Trillium Lake




John has been a good car traveler lately.




This is actually at our local rec center




At the beach. John got soaked.




Hotel pool




Big chowder at Mo's





Dodge Park





Eating some Haagen Daz

Summer 2008

I haven't posted in awhile. As usual, that means things are pretty much unchanged from my last post. John continues to have several clusters of myoclonic seizures every day, but he doesn't fall and seems to recover quickly. So, these days, we are much more focused on his development than his seizures.
John remains on 1.2 ml of keppra twice a day and 2ml of Felbatol twice a day. We might ask about lowering the Felbatol a little more. We don't want to interfere with his relatively good status these days, but we sure would like to do all we can to help him learn.
John turned 6 in June and he had a party at a local climbing gym. He wouldn't wear the harness, so he didn't get to climb any of the big walls, but he had fun running around and climbing the small walls.
Yesterday was the last day of summer school. I think he was just getting used to it in the past week or so, so it's too bad that it is over. He starts first grade next month at a special needs class about 15 minutes from our house. We hope it works out well, though we have out doubts.
He has also been receiving private therapy from 2 different therapists. We finally decided to drop the one that was 90% covered by insurance and stick with the other one that we think does a much better job. It's expensive, but worth the extra cost. Since John still rarely says anything spontaneously, we are trying other methods to get him to communicate. He's been doing quite well with the picture exchange system, and does a little sign language. We're also looking in to getting him an electronic device where he can push buttons to let us know what he is trying to say. We have a specialist coming to our house in the next couple of weeks to evaluate John for these devices, then if that goes well we'll try to get insurance to cover this as they are very expensive.
I'm on vacation all next week and we'll be taking some car trips and hopefully getting in some things that John enjoys (ie swimming!).

lots going on

It's been a while since I've posted, and quite a bit has happened in the last month.
We have continued to lower the Felbatol level. He is now at 5ml/day, down from a high of 12ml/day last year. John does continue to have a lot of the myoclonic jerks. In fact, they are getting more frequent and a little stronger. But, since these seizures don't really seem to phase him much, we're opting for the lower drug level anyway in the hopes that it will help him to learn.
John does seem to slowly make progress. He has taken an interest in picture books finally and will usually repeat the words. He still has a hard time pointing at a picture when asked, but can sometimes do it with real familiar objects. He's getting better and better at riding his bike, but still needs someone to walk next to him at all times. And he refuses to wear a helmet, which we have to rectify soon.
It's been over 1 year now since we've seen a grand mal seizure! That's a pretty good milestone. I just wish we could get rid of these myoclonics as well.
And, it's now been 4 years since this whole thing started.

We got John's placement for 1st grade awhile ago. We visited the school and we weren't very happy with it. John was placed in the lowest level of special needs. It's really sad to go visit those classrooms. We tried to fight it, and had another IEP meeting, and visited another school. Unfortunately, the other class was just as bad or worse. So, after all that we ended up back with the original placement. They explained all of the different levels of special needs and it just didn't seem like John fit in any of them. So, the default is to put him in the lowest level. We'll continue trying to push John. It's our hope that he can learn to communicate better and we can eventually get him in to a better class. It's hard to believe my son belongs in that class, especially since he was so bright in his first couple of years. It's amazing how things can change so quickly.
John's birthday is coming up, and we're going to have a party at a rock climbing gym. I'm sure he'll love that!
School gets out for the summer this week. John will be in summer school for 6 weeks, and we have 2 other therapists that he will be seeing. Plus, Maya is signed up for swimming, cooking class, pottery, Japanese school, and piano. So, the summer will be busy!

Felbatol level

At our last doctor visit, we had a chance to see the EEG and how it correlated to John's seizures. John is definately still having seizures, but for some reason the EEG does not go crazy during the times that we see the seizures. It's pretty bad at other times though, when we don't see anything. As bad as his EEG is (especially during sleep), it's still a big improvement over his previous EEG's. Because of this, and the fact that the seizures he currently has don't seem to phase him that much, we decided to slowly lower his Felbatol. Since it's clear we can't stop the seizures completely with the drugs, we'd rather have him on fewer drugs even if the current seizures get a little worse. Obviously if he goes back to having Grand Mals or drop seizures we will do anything and everything to stop those. I don't think that is going to happen, though.
So, as of today John is on 6mg per day of Felbatol. This is exactly half of the dose he was on in December. So far, we haven't seen any real worsening of the seizures. And, I think we have seen some real improvements in other areas.
Talking is just not John's thing, but he seems to understand more and more of what we tell him. He also can almost ride his bike now (with training wheels). I tried forever to teach him how to pedal but he just couldn't get it and really wasn't interested. He's finally getting the hang of it, and actually likes to ride his bike now.

Climbing

On Saturday, our friend Rick offered to take us to the Portland Rock Gym. He knows how to do the belaying, so John and Michael (his son) got to take turns climbing the big walls. Of course John loved going up.


I got a little worried when he got way up there, as I didn't know if he would try to go over the edge. So, Rick tried to get him lowered, but he wanted none of that and became frustrated. Finally he just kind of camped out up there and started humming "I'm a little teapot". He ignored my requests to come down. A worker finally went up and coaxed him down. In hindsight, I suspect he would have come down on his own if we had let him go to the very top. But still, I felt a little helpless since there is no way I could go up after him. I think Yoshie and I are going to take the class so we can do the belaying next time. I'm guessing Yoshie and Maya would also enjoy the climbing.

VNS

Here's a picture of John with his new VNS. You can see that it is significantly smaller than the previous one. I think the stitches itch him, as he's always trying to get pick at them.

EEG and VNS surgery

Everything went as planned. We are back home and John is doing fine.

We arrived at the hospital at 7:30 Monday morning. No mix-ups this time, so we got a room pretty quickly. The tech came in pretty early to glue the EEG leads on. As expected, this was the worst part of the whole day. It took several of us to hold him down and he was pretty unhappy for the 45 minutes or so that it took.










He started having seizures right when she was finished, so we had the tech start recording immediately. So, the first few seconds of the recording should have at least one seizure on it. Surprisingly, once the leads were all on and his head was wrapped up, he didn't seem to mind. He carried on as usual just watching videos and running around. He only tried to grab at his head a couple of times, and we were able to distract him pretty easily.







We didn't see any seizures for most of the day, and we were getting worried. But, he did finally have a small cluster of seizures in the evening. This was much smaller than we normally see, but we were hopeful that it would be enough to determine if there was a focal point or not.
John wouldn't allow anyone to take his vitals. He especially hated the blood pressure cuff. They finally had to give up and do it in the middle of the night while he was sleeping.
John had to give blood around 8:30, then I went home. He didn't sleep very well, and was awake for a couple of hours during the night, so John and Yoshie ended up very tired on Tuesday.
I arrived back at the hospital at 5:45am, just as the tech was coming in to remove the leads. Of course John didn't like this, but it went pretty quickly. He enjoyed his freedom after that and we spent some time walking around the hospital. As expected, he had a significant cluster of seizures during this time.
Just after 7:00am he was wheeled down for surgery. He took his calming medicine without problem this time. Whew! Last time they had to resort to forcing it up his nose. He got very drunk-like, and they took him away at 7:55. Yoshie and I went to wait in the surgery waiting area.
John's neurologist found us in the waiting area and gave us the results of the EEG. Apparently, his team had already studied them that morning. He said overall that John's EEG was dramatically better than it ever has been. He said that his brain wave rhythm had matured, and the background slowing had improved. He said there were times of some normal sleep rhythms - maybe for the first time ever. And, he said the the seizures themselves were far less severe. In fact, he said that if he were basing his findings on the EEG alone, he probably wouldn't classify these discharges as seizures at all. Since these discharges are associated with head drops, they are certainly still seizures, but are a big improvement over the seizures he's been having for the last 3 years. He said that he and his team believe that John's seizures originate in the thalamus area of the brain. This is an area deep in the brain that cannot be accessed. So, that obviously rules out any more testing for a surgery option. He said the best course of action for this type of seizure is VNS and drugs, which is exactly what we're already doing.
We don't know why John got better. It could be the Keppra, or it could be that he is just growing out of this. We also asked about John's lack of development, even with this improvement. He said that it could very well be the underlying issue that is causing all of this. Or, it could be the drugs that John is on. So, he said his goal is to get John on as little medication as we can, which was music to our ears. John really has seemed more alert since we lowered his Felbatol level, so we're really hopeful that further lowering this drug will help even more.
While we were talking to the neurologist, the neurosurgeon came in and told us that everything went fine. He said the leads were OK, so they only needed to do the generator replacement. He said that John was already starting to wake up so we'd be able to see him soon. That was 9:30.
At around 10am, a nurse came out and told us that John was just starting to wake up, and we'd be able to see him soon. She had us go down and get his new prescriptions (antibiotic and pain meds) while we were waiting. Around 10:30, the neurologist came back and said he had just turned on John's VNS. He set is really low compared to what it used to be. It is now set at 1mA, on for 30 seconds each 5 minutes. He said we'd increase it in a couple of weeks but he has no intention of going to the type of settings that John had previously. He also said that John was waking up and we'd be able to see him soon.
At 11:10, I finally asked reception for a status and they were able to take us back to see him immediately. Sure enough, he was half-awake. We tried to get him to drink some liquids so that his IV could be removed (it was driving him crazy). He watched a little TV, and fell back asleep.









At around 1pm, the nurse came and said we could wait for him to wake up, or we could take him home and let him sleep. We opted for the latter. I carried him down to the car and we went home. We were home by 2pm. Once we got home, John went back to his normal ways. I actually had to stop him from climbing his climbing wall and jumping off the couch. It was as if nothing had happened to him. We didn't even give him any pain medicine until bed time as he didn't seem to be in any pain.
Today (Wednesday) he seems completely fine. He doesn't know that he has a big cut in his chest, and we're hiding it from him. I think if he saw it, he would try to remove it. But, it doesn't seem to bother him at all so far. I gave him a dose of the pain med first thing in the morning, really just as a precaution. I'm guessing we won't have to give him any more at all. We even got out for a little hike today. He grabbed some stinging nettles, which is bothering him more than anything right now. So I think it is fair to say that it all went better than expected.
We'll go back in a couple of weeks to increase his VNS settings, and then we'll hopefully start decreasing the Felbatol shortly thereafter.
One really promising sign is that the VNS magnet has appeared to stop John's seizure clusters on two occasions today. I have a good feeling that we're going to be able to go to just the VNS and a low dose of Keppra for long term treatment.

EEG and VNS

We went in for John's EEG last week, but there was some mix-up and we were finally sent home and forced to reschedule. We got rescheduled for next Monday (Feb. 25) at 7:30am.
Today, we met with John's neurosurgeon to discuss replacing his VNS. We got some x-rays taken just to make sure the leads were still OK - they were. And, it turns out that they had a cancellation and were able to get John in next Tuesday for the surgery! So, his EEG will go from Monday morning to early Tuesday morning, at which point they'll remove the leads and take him right to surgery. It will be a rough couple of days, but nice to get it over with all at once. If all goes well, the surgery will take less than 30 minutes and we'll be home Tuesday evening.

In other news, John really seems to be doing better on the lower Felbatol dose. He just seems more "with it". Thankfully, we didn't see any increase in seizures at the lower dose either. So, we're hopeful that we can lower it even more after we get the VNS working again. John has continued to have daily clusters of small seizures, but I don't think they have gotten any worse since my last post.

John seemed to like school for months. But, for some reason he cries when you say the word "school" now. The teachers say he is fine after awhile, so I guess it's just separation anxiety. We're not sure why it suddenly came on, but it might also have something to do with his reduced Felbatol level. John knows the route to his school, and he'll cry as long as you stay on the same route. If you turn off course at any point, he quits crying. So, some parts of his brain seem to work quite well. Sure hope the language part starts working one of these days.

Not a lot has changed seizure-wise since my last post. John continues to have at least 1 cluster of seizures every day. Each cluster has between 5-12 seizures. The cluster lasts a couple of minutes, and the seizures themselves are just head drops. We have lowered his Felbatol from from a high of 12ml/day down to 9ml/day. We didn't see any change in his seizures, so that is good news. I feel more comfortable with this lower dose.
Since we lowered the Felbatol, we think John has gotten more talkative. He babbles a lot now, and sometimes seems to say words that make sense, though its never clear so we can't be sure. He has also started to cry non-stop at school lately. Yoshie had to pick him up twice this week. He's always seemed to like school, so we're not sure what changed. Yoshie suggested that maybe he is just a little clearer after the Felbatol reduction, so he has a some separation anxiety again.
John has also been going to speech therapy twice a week at our local university. I had a chance to observe him the other day. It's really more like play time than therapy, but at least he likes it. So far Yoshie has had to remain in the room most of the time. Hopefully that will change soon.

We had an appt. with the neurologist on Monday. As expected, we got an appt. for another "24 hour" EEG. We'll be doing that next week. He told us that he still believes John's seizures are generalized, but there is a 25% chance that they could be focal. It was enough of a chance that we decided to pursue it. If the EEG shows a focal point, then we'll have another MRI. If the MRI shows something in that area, then we'll continue with further testing. The end result would be a surgery to remove that section of the brain. But, there are many, many steps before we get to there and if any step along the way doesn't show a clear focal point, then we'll stop. The chance of actually getting to the point of a surgery is very small.
After the EEG, we are also going to increase his Keppra slightly. Since it has worked so well, I think there is a decent chance that an increase will help him.
Finally, the VNS is completely dead, so we'll be getting that replaced shortly. As always, we only want to do one thing at a time, so it might be another month or two before that gets done. We got to see the new VNS, and it is remarkably smaller than his current one. It also has more functionality. We're not looking forward to putting John through another surgery, but this one is low risk. I doubt we'd even have to stay overnight. The hardest part will be keeping John from poking at the incision.

Christmas

Yoshie and Maya are in Japan this week, so John and I have been having fun playing with our Christmas toys.














We even got a little snow on Christmas day, which John loved. I hope it snows again soon!










John's seizures are slowly but surely getting worse. He has at least one cluster every day, with the seizures getting a little stronger. He sometimes laughs after the seizures. I guess they feel funny. We raised his Felbatol last week, and that clearly didn't help. So, we'll begin lowering that again soon unless the seizures disappear. I'm sure that John will get his VNS replaced in the next few months.