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.