Cleaning

For some unknown reason, John had a NEED to move all of our shoes to this one location.  There was no stopping him.

Autism is so weird.

Climbing

We bought the mats to keep him safer, but of course he figured out a way to have some fun with them:

Sugar!

This is why we keep the cupboard locked:

Where are you?

John was supposed to be in bed (in his pajamas).  This is where we found him:

Today's damage

Window sill:

The picture speaks for itself

This weekend's damage

Another sun visor (3rd one for those that are counting):

Another umbrella:

And, this is a new one.  He discovered the molding can be ripped off:

On the roof again

John is back to climbing the trees.  This is the one he uses to try to get on the roof.

As you can guess, we have to watch him very carefully while outside.  He did manage to get up on the roof yesterday even though we were watching closely.  

I think we're going to have to cut that tree down, unfortunately.

Today's damage

I hope this current phase of tipping over furniture when he gets angry passes quickly.

Beach

We took a short 1-night trip to the beach.  We stayed at a place he is familiar with because he loves their pool.  Unfortunately the pool pump broke right before we got there and was scheduled to be fixed just as we were leaving.   But, they let John in there anyway for a short swim.  It seemed like it was enough to keep him happy.
This was probably the best trip we've had with John.  He was well behaved the whole time, didn't have any seizures, and was safe enough at the beach that we could just let him be.  
The weather was beautiful and warm and we couldn't see another person in any direction.   It was like a giant playground for him.

He refuses to drink from a cup:

The beach all to ourselves:

 

John actually playing normally and safely:

One little act of defiance just as a reminder:

You can see his joy in the video:

crying

Yoshie and I can't remember ever seeing John cry.  I think it's been years.  But yesterday evening, he had these wild mood swings where he would hit things and knock over furniture, even causing some damage:

... followed by long periods where he would pace back and forth crying.  He couldn't be consoled at all.  I don't think he even knows what he was crying about.   It was like he had figured out crying and he was forcing himself to do it.  

We're really hoping this is just a short phase and not a new challenge.

On the flip side, he attended his summer day care/camp for the first time yesterday.  Sounds like he had a great day there.  He was very active and wore out the staff.  We got a message on the machine saying he was so active that they are sure he must be at home completely worn out now.   Got a chuckle out of that.  Nothing wears him out.  He is like that from early morning until late at night, unless he's in the car (or lately in his push chair).

Run

I pushed John in the giant stroller on my run today.  It actually went quite well!  We picked a flat bike path.  We ran for an hour and I didn't have to stop even once to deal with something.  I think he enjoyed it too!

3 minutes in the car

And this is what happens when John is left alone in the car for a few minutes:

$90!   I only know because this is the 2nd time this has happened.

3 minutes

This is what happens when John is left alone for 3 minutes.

Happy 11th Birthday!

Happy Birthday John!   We had a nice little party with Christi, Jack, and Grandma.

John got a new "push chair".  It's really just a BIG stroller.  Of course he can walk and run just fine, but this calms him and has been a real help while waiting for the bus.  You can see the video earlier on the blog with our past struggles getting him on the bus.   But, with his routine of sitting in the chair he has been much, much better.   I'm entertaining the thought of running with him again with this, but it is pretty big.  It would definitely have to be a flat route!

pancakes and staples

We had a nice pancake breakfast at John's school this morning where he got recognition for finishing 5th grade.

Then, he proceeded to have some sort of accident which required him to get a few staples in the back of his head.

Soy Sauce

John loves any foods/drink with a strong flavor.  He loves to eat salsa by the bowlful, and liked coffee for his entire life.  He will also steal a sip of beer from you if you aren't careful.
Well, he recently started drinking soy sauce.  We have had to hide our soy sauce for the last few weeks.  But, he found the big Costco sized bottle of soy sauce yesterday and drank all that was left in it.  It was about 2 cups worth.  We're very thankful it wasn't more!
He seemed totally fine, until he wasn't.   He threw up 6 times in my car.  :(
Outside of being pale for the rest of the evening, he seemed fine.  It sure didn't slow him down.  I hate to think what that much sodium would do to you.  Glad his body got rid of it.

Vaccine

We are continuing to get John vaccinated, one shot at a time.  It obviously takes longer, but if you've had the chance to see John after a vaccine you'd understand.   He got a polio vaccine last Thursday.  Friday was a new level of craziness.  He could not stand or sit still for even the tiniest amount of time.  He ran back and forth across the house with no breaks the entire day.   He wouldn't even stop for food.   Thankfully he did get to sleep around midnight and slept until almost 7am.   Then, he was back at it all through the weekend.  He's gets better each day now.
Surely, this must mean something?  I've never heard of another kid reacting to a vaccine that way.   We have seen this with each of his vaccines.

window locks

I had to put a window lock on John's bedroom window after we found him running around outside at 10pm when we thought he was asleep!

House

At what point do we quit referring to this as our house and start calling it our gym?

VNS adjustments

We continue to increase John's VNS settings.  He is up to 1.25 output current, with the magnet set to 1.5.  It is on for 30 seconds and off for 1.8 minutes.  He's still having about the same number of seizures, but changes are never immediate with the VNS.  But, one thing we do see with each increase is that he gets super hyper for a while.  It's really incredible to watch him.  He can't stay still for a second.
He has 2 new behaviors since we increased his VNS on Wednesday.  The first is he tries to escape the house constantly.  I installed some more window locks so now he is really locked in, but he has figured out how to undo the door locks so I'll have to add a key to those.
The other new behavior is that he takes all his clothes off constantly.  I mean like 50 times a day.  He can't go 5 minutes without taking his clothes off.  It's very tiring for Yoshie and I as we have to watch him constantly and if we don't our punishment is putting his clothes back on.  It's not too bad until you have to do it several dozen times.  It gets ridiculous.
Yesterday, he combined his 2 new behaviors and was running around out in front of our house completely naked.  I'm kind of surprised we didn't get a visit from the cops.

More Zonisamide

We're still hoping the VNS will help with these night seizures, and we have 2 more appointments to adjust his VNS settings.   But, in the meantime we had to go back up on his Zonisamide.  We were hoping to get rid of this drug altogether, but I guess that isn't going to happen any time soon.  He's back to 100mg twice a day.

Seizure video

Yoshie took some video of one of John's night time seizures this morning.  These are the typical ones that he has 3-4 times a night now:

Sunday morning seizure

New VNS settings

The daytime seizures have mostly stayed away which has been really nice.  Unfortunately the bigger night time seizures have continued so we got his VNS turned up yesterday.  The current is now set at .75, on for 30 seconds and off for 1.8 minutes.   The magnet is set to 1.0 and is on for a minute.  Hopefully we'll see some improvement with this, but he will have it turned up again in 3 weeks regardless.

Struggling

We went to the surgery follow-up appointment yesterday and the incision is healing nicely so he got the OK to submerge it in water again.  That is good because he likes to play in the bath and didn't understand why he couldn't for the last 2 weeks.  
John continues to do pretty well during the day.  He's had some good therapy sessions and very few daytime seizures.   But, for 2 days in a row now he has had a very bad grand-mal seizure around 5am.  These are the kind where he shakes violently and doesn't breath.  It scares us to death.   And it completely exhausts him.  So, today we had to keep him home from school yet again.

VNS #3

John had his VNS replaced again on Jan. 3.   Over the last several months John's seizures had gotten progressively worse so we made an appt. to get the VNS checked.  It was dead or close to it.  So, that pretty much convinced us that the VNS was actually helping him so we had no choice but to get it replaced.
John did great during the surgery and once out of the general anesthesia he did not want to stick around so we left the hospital almost immediately.  We were at Subway literally 90 minutes after he woke up.  Crazy kid.
It was a challenge to keep him from taking the bandage off but with very close supervision we were mostly successful for the required 2 days.  He then took the steri-strips off almost immediately but the wound looks like it is healing very nicely so no worries.
John has had a couple of bad days since the surgery, but overall he is doing MUCH better.  They just turned it on a very low setting during the surgery but it has really helped him.

Behavior therapist

Today, John's behavior therapist came over.  We haven't seen her for awhile, so we had a lot to share.  She gave us some techniques to use to control him when he gets really wound up.  And, she is going to come over in the morning next week to help John get on the bus.  Hopefully she will have some ideas to make this easier going forward.   I start my new job next week, so I will not be able to help Yoshie in the morning.  She simply cannot do this herself so we need to figure out something very quickly.
We also are considering starting John on his new seizure drug (Onfi) and backing off on the Risperidone for now.  We have to discuss with his doctors first though.  There are several doctors now, and I want them all to be in agreement about our course of action.  
We think John IS slightly better these days.  It can be hard for us to tell, but we did have his sitters over again tonight and they said he was much better this week than last.   We have noticed that John is eating like crazy these days.  He has always been a big eater, but now he can eat non-stop for hours.  Weight gain is a very common side-effect of Risperidone, and it looks like he is running in to this. 

Doctor visit

We went back to the developmental pediatrician today, this time with John.  She wanted to do an exam, but of course he wouldn't allow that.  She still got to see him in action, which was great.  And, we got more information about our course of action.   We are going to continue to increase his Risperidone.  It hasn't done much yet, but his current dose is still low so we have a long way to go.

Morning seizure

John's seizures have gotten somewhat worse lately.  Today he had a big seizure in the morning and he had to sleep it off all morning so he missed the bus.  We had to take him to school.  He wasn't happy at all about that.   They had to lock him in the room so we could escape.

playing at the park

Just another day dealing with the "new" John.   We took him to a park to play for 30 minutes while we were waiting to pick up Maya from school.  When we were ready to go, he simply would not get in the car and Yoshie and I could not even force him in.   Ultimately, John and I had to walk from the park to Maya's school.  He continuously tried to escape (into the busy road).  This is the first time that we simply could not get him in, no matter how hard we tried.  It's been a two person job for a couple of weeks now, but we are at the point that even with both of us it can't be done.   So far the Risperidone doesn't seem to be helping at all.

Bed-wetting and Big Al's

Well, John did wet the bed today.  But, this is the first time in over a week!  So, simply moving his seizure med from night to morning made a HUGE difference.  And, to think we were just about to put him on another drug for this.
Today was the worst day yet for getting him on the bus.  It was a huge struggle and we thought we had succeeded.  We were just going back in the house when we turn around and see him in the stairwell of the bus.   So, we had to do it all over again.  From now on, we have to use the harness which clips him in so there is no way he can escape.  I think we are getting quite a reputation in our neighborhood as there is a nice line of cars every day that have to wait for us to get him on the bus.  It can take up to 10 minutes some days.   Twice we have had to give up and have the bus drive around the block so we can try a second time.
Today was also my last day of my job that I have had for 14 years.   To celebrate, we went out to Big Al's (a noisy restaurant, bowling alley, arcade games, etc.).   We sat down and ordered and that was about all John could handle.  He doesn't understand that he has to wait for his food to be prepared and he simply couldn't understand why other people were getting food before him.  He became very agitated and eventually Yoshie had to take him outside so he could throw rocks in to a mud puddle.   When we were done eating we went outside to find John still throwing rocks.  It was very difficult to get him in to the car.  I had to hold his feet while Yoshie held his arms.  He fought the whole way.  I'm surprised the police weren't called.  It was very exhausting.

Another doctor

John had 2 more big seizures on the 18th and 19th.   We don't know if this is because of his new med and it's known side-effect of lowering the seizure threshold.  Seems a little suspicious, though.
Today, Yoshie and I met with his new behavioral/developmental pediatrician while John was at school.
This was a good appointment, and this doctor is getting the ball rolling on a lot of things.  It's obvious we've reached a point where we are struggling and need some help.  She is pulling together his other doctors, his school, etc. to get everyone in the loop.
She gave us a dosing schedule to slowly increase the Risperidone, which we will start doing today.   We will increase from .125 twice a day to .25 twice a day.  We will have another meeting with her next week so she can see John in action.

We were able to take a video of our daily struggle to get John on the bus these days:

This goes on for another 5+ minutes inside the bus.  And believe it or not, most days are worse than this.  It's a horrible way to start the day, both for John and for us.  I really wish we knew why he suddenly doesn't want to go to school.  He rode the bus without issue for many years.

Big seizure

Maya and I left for a hike today.  John ended up having a big seizure in the morning, with no breathing and just his right arm shaking violently.  He seemed to recover OK from this, but his behavior and aggression remains very bad.

Friday the 13th

Today started with John's appointment with his primary care physician.  She came in early just to see John which was nice.  John was crazy in the waiting area and at one point pulled Yoshie hard enough that she fell and bruised her backside.  He continued to be wild in the doctors office and so she ended up sending Yoshie and John to the ER at OHSU.   I got a phone call at work from the doctor saying that she had just sent them to the ER and that they needed to try to medicate him for his own safety.  And, if they couldn't find something that would work that she would recommend sending him to a psychiatric ward until they could get him settled down.
As is typical of ER's, we had to wait a couple of hours to see anyone that could help.  They did bring us back to the ER room quickly, but this required 2 men to forcefully pull him to the room.  John can't just wait around so we had to make many trips up and down the hall and to the vending machines.   We still needed to get some blood.  They wrapped him up in blankets so he couldn't use his arms or legs and then had 3 nurses and myself attempt to hold him down so they could get some blood.  Even with 4 of us we couldn't hold him still enough to get the needle in the right place.  They had to poke him twice and only ended up with 1ml of blood which wasn't enough to do most of the tests.  And his hand ended up completely bruised.
Yoshie had a long conversation with a social worker.  I'm not sure what will come from that, but she seemed determined to help us.
We finally got to talk with the child psychiatrist.  After many questions she decided that the best course of action was to start John on a low dose of Risperidone.   We agreed and we were able to leave in the afternoon.
To make matters worse, I thought that someone stole our iPad from our car while parked in the ER parking lot.  I even filed a police report.  Turns out that I had left it at work and my friend had seen it on my desk and hid it for me (and forgot to tell me!).  
We ended up keeping our plans to go out to dinner with my mom while John was cared for by Yoshie's friends.  That actually went fine.  John loves company and is usually pretty good at home.
Based on Yoshie's hunch, we changed when we gave John his Zonisamide from night to morning.  Can you believe that he didn't wet the bed for the first time in a long time?  Hopefully that will continue.

Sleep study appt

Today, we had an appt. with the sleep study center.  John's neurologist referred us here due to John's issues with bed-wetting and waking up repeatedly through the night.
John was in fine form during this appointment.  He fought going (and staying) in the doctors office, and threw her notes across the room when he got a chance.  He put on quite a show which I think was a bit alarming to the doctor.
There is a chance that John's VNS could be the cause of his bed-wetting.  Or, it could be seizures.  Or, it could be too deep of a sleep due to meds.  Or, it could be an issue with how his body creates urine.  Or, it could be sleep apnea.  Anyway, we decided a sleep study would be a good idea to help get to the bottom of it.
The doctor also wanted to start John on a new medication that limits the amount of urine that gets created.  It seems he has some issue, as he can go to the bathroom dozens of times between dinner and bed.   But, he needed a blood and urine sample before he could start taking this med, so we were instructed to make an appointment with his primary care doctor as soon as we could.
After seeing John at his worst, this doctor made some phone calls and got John's primary care doctor to come in early the next morning to see John first thing.

Scary

I obviously haven't been very good about keeping the blog updated.  But, things are changing again so I will make an effort to keep this up to date.
John has been on 225mg of Zonisamide (taken in the evening) for quite a while now.  He continues to have small "head nod" seizures throughout the day and a bigger seizure (with vomiting and ultimately sleep) once every 1-3 weeks.  So, things have been pretty good, but not great. 
Lately, John's behavior has become more of an issue than the seizures.  He get's aggravated easily and cannot be calmed down.  And, he is getting bigger which makes it harder for us (especially Yoshie) to handle. 
We had a scary situation happen recently that made us realize that we need to make some changes to keep him safe.
Yoshie was driving our minivan, and was turning left from Cornell on to 185th (a very busy intersection).  As she slowed down, John undid his buckle and went to the opposite side door and got out!  Yoshie tried to stop him, and ended up hitting the car in front of her (only slightly, no damage).  But, John still escaped and took off down Cornell barefoot.  Yoshie got out and screamed for help and the guy who's car she had just hit got out and chased John down.  Then, a couple of good Samaritans helped to keep John on the sidewalk while he fought to get away.  By the time I arrived, the car was still in the middle of the road and several people were in the parking lot nearby.  A couple were helping to keep John from escaping but the rest really didn't know what to do.  I went around and told everyone of John's condition and thanked them for helping out.  The guy said the scratch on his car wasn't enough to even worry about.  What a nice guy!  I really wish I would have gotten his name.  Thankfully, I know his car very well so hopefully I will see him again.
Anyway, we obviously have to worry about safety now so some changes need to be made.

Playground fall

John went to a special needs camp all last week. We were pretty nervous about sending him, but he seemed to really like it. That is, until Friday. The group was playing at a playground that had a pretty high play structure. Of course John was at the top. Nobody seems to know what happened, but someone mentioned that he was pushed from the top and fell about 12ft down. His head and face hit something on the way down.
They said he was acting "stunned" so they called the paramedics. They put a neck brace on him and drove him to the ER.
Unfortunately I was in an all-day meeting and Yoshie was at the zoo with Maya so we couldn't be reached. They were able to reach my mom who got in touch with my brother who I think called the front office of my work. I finally got called out of the meeting and was able to call the camp director. All she could tell me was that John had a bad fall, was in a neck brace and on a backboard and that I needed to get to the ER ASAP. Scared me to death. And, traffic was horrible. Then, there was construction at the hospital. Three ambulances passed me while I was waiting there. I'm guessing John was in one of them. Thankfully, Yoshie had come back to the car for her phone so I was able to get in touch with her. She actually got to the ER about the same time as the ambulance.
When I got there, they were holding him down and cutting off his clothes. He had a big lump on his head and a bruised face but didn't seem to be in any horrible pain. I think he was a lot more upset about being held in place. They did an x-ray and CT scan. Both of those were fine, thankfully. Soon after that we were sent home. They said he likely had a mild concussion and we just have to watch him carefully for awhile.
His face got a little more swollen on Saturday, but has since gotten much, much better. He also was favoring one arm and his shoulders were crooked. This required another set of x-rays on Monday. Those also looked OK, so we're hoping that it is just some muscle pain that will go away soon.
We did keep him home from camp this week. We're still decided whether or not to send him back next week.

CT Scan:



Looking a little beat up:

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.