Daytime seizures are back

John has been suffering a lot of night seizures, but hasn't had any daytime seizures for quite some time.  Of course that all changed on one of the very rare evenings that Yoshie, Maya, and I got out without John.   We got the call just after ordering our food.  It's almost comical.  But, we have a great caregiver that was watching John and she handled it all just fine so we were able to enjoy our time out.

John is big enough now that we cannot carry him to bed when he has a seizure.  So, he got a nice long nap on the kitchen floor.

We ARE very slowly decreasing his ONFI.  This is a benzodiazapene and withdrawal seizures are pretty common.  We're hopeful that is all it was and it doesn't happen again.  We really don't want to have to add that drug back in.

Another VNS adjustment

John has really been struggling with big nighttime seizures lately so we decided to get his VNS adjusted again.  It has been at a pretty low setting since he had the battery replaced back in January.  We still have a lot of room to adjust before adding a new drug in to the mix.
So, his new settings are:
1.5mA output current, on for 30 seconds and off for 1.8 minutes.   If we swipe the magnet it goes for 60 seconds at 1.75mA.
It often takes a few weeks after an adjustment before we see any change.
We also got the OK to start going down on his Onfi.   We really don't think it's doing anything and it is one of those drugs (a benzodiazapene) that you really don't want to be on long-term.   Weening these benzos often mean withdrawal seizures but I think it's worth it in the long run.   We're also hopeful that we can find the right strain of cannabis to help John.  That is proving to be quite difficult in Oregon.
The doctor said they are getting 30 calls a day from parents wanting to try cannabis.  But, the doctors don't know anything about it.   This grey area of legality is really ridiculous and means parents have to learn about strains, dosing, etc. from other parents instead of doctors.   Hopefully it will get better soon.

broken chairs

Last week it was all about chair arrangement.  This week he has moved on to chair destruction:

We really don't have much furniture left.  And, it wouldn't make sense to buy anything new.   We might have to resort to folding chairs or similar in the near future.

John the artist

John's new "thing" is taking all of our dining room chairs and arranging them in some unique way.  I have no idea what he is thinking with this.  But, he gets super focused on it.

Some examples (in the 2nd one he is posing in front of his work):

Night-time seizures

John is really having a hard time at night now.  Almost every day he will have a big seizure about 1 hour after going to bed.  He wakes up right before the seizure and is scared.  He made it down the hall one day before being taken down.
Last night the seizures continued all night.  They were small, but Yoshie estimated that she had to use the magnet 20 times to try to stop seizures.
We are at a point where we have to do something.   We have an appointment to get his VNS adjusted in a couple of weeks, and we're still hoping to find the right strain of marijuana that could help him.  In the meantime, we'll probably have to raise one of the other meds he is on.  We always hate to do that but there comes a time when we really don't have a choice.

More seizures again

While we've never had long seizure-free periods, we had been doing pretty well lately, averaging about one large seizure per week.   For some unknown reason that has changed this week.   He had 3 nights in a row where he had a large seizure about 90 minutes after going to bed.  One of those nights he had back to back 2 minute seizures.  First time we have seen that.   Of course the first one was the night before his first day of 6th grade.   He seemed OK in the morning so he went to school and seemed to do OK.
As usual, we didn't change anything.  It's a complete mystery why these things come and go.

TV

While we avoided damaging the condo while on vacation, it didn't take long after we returned to cause some real damage:

Who knows why he decided to throw the remote control at the TV.  He wasn't upset or anything.  He just walked by and threw it like it was the most normal thing.

Sunriver

We had a nice weekend in Sunriver.  We got in some nice boating, hiking, and swimming.  And, we avoided damaging the condo.  Yay!

He reminds me of Pig-pen from Peanuts:

Teapot

We got an aluminum teapot so that John couldn't break it.
He still found a way:

Window

We are getting the window replaced with some shatter-proof glass, but it is going to take awhile.  So, I had to board it up:  

Broken window

We knew it would happen someday.  John loves to lay backwards on the couch and kick the window.

Thankfully it was only one pane of a double pane window and it didn't shatter.  But, he seemed pretty happy with what he did and is now continuing to try to bust it out.  I fear for the rest of our windows.   I'm sure it's going to cost a fortune to fix.   For now I taped up all the cracks and covered it with cardboard.  Sigh.

Child locks, part 2

We'll see how these hold up, but so far they seem like the best invention ever:

The drawers and cabinets stay locked until you swipe the magnet over the area where the lock is.  As long as we keep the magnets away from John this seems like it will work very nicely.

Food waste

John eats an amazing amount of food, but he is also pretty wasteful.

This is a normal result after eating popcorn:

and here is the entire bunch of bananas that I carefully picked out just 5 minutes after getting home:

And, I'm glad John is finally eating pears, but this is kind of ridiculous:

Medical marijuana

Well, it was a long time coming, but we finally were able to get John on medical marijuana.  It's kind of ironic that it happened the same day that CNN ran a story about a seizure kid being helped immensely by the stuff, and Sanjay Gupta reversing his earlier stance and now supporting it.
It's a very tough system to navigate, but I finally just went with a guy that had very good reviews and delivered to my house.   We wanted a liquid form and he only had one strain in liquid form.  Not knowing one from another, we just bought what he had.    It's strong stuff, and we started him on 2 drops morning and night.  That didn't seem to do anything so I have been increasing it slowly.  We're up to 5 drops now, and while I can see some change in John, I don't really think it is helping his behavior.
Further study made me realize that we need a strain high in CBD and low in THC.  Unfortunately the one I got is high in THC and low in CBD.  Basically it will make him high but doesn't have a lot of medicinal value.  So, the search is on for a dispensary that carries the kind we need.

Door planking

Maybe the next big thing?

Child locks?

Of course, there is no child lock made that can keep John out.  So, long ago we resorted to tying up the cupboard to keep him out.  It's a serious pain to have to untie that thing every time you want to sneak a snack, especially after he has pulled on it so the knot is super tight.  
But, despite years of not being able to beat this system he continues to try.  The problem is now he is strong enough that the cabinets themselves can be beaten:

Not sure what to do about this.  I think I can repair it, but why?  Now that he knows it's possible I'm sure he'll continue to break it.   I'm open to ideas.   I wonder if they have solid steel cabinets?  :)

Maybe you are wondering where I was while this damage was taking place?  Well, I was in the other room steam cleaning the carpet after he intentionally gagged himself and puked.   And, he was gagging himself while I was in the bedroom replacing all the sheets that he pulled of the bed.   And, he pulled the sheets off the bed while I was cleaning up the box of screwdrivers that he dumped on the floor.  See where this is going?

It's getting very close to being a 2 person job to watch him.  One can do it if they are energetic and watch him closely, but if you get behind and have to clean up after one mess, he will stay one step ahead of you with his troublemaking.  

The easiest way to keep him out of trouble is to just take him for drives.  I wonder how many thousands of miles I've driven him around in circles.

Big seizure

It's been a long time since I've seen a big grand mal seizure.   We had a few last week after he drank the diastat, but those were only about 30 seconds.   But, at 6:45 this morning was a truly scary seizure again.  A lot more violent then I think I've seen and his face was really contorted, etc.   It was about 90 seconds long.   I have no idea what could have contributed to this, but I hope I never have to witness that again.

And, because Yoshie is overseas I had to force John to get up and go to his daycare just a couple of hours later.  I felt really bad about that.   But, he seemed OK with it.  I'm sure he was a lot calmer than usual.  I checked in this afternoon and he is apparently back to normal.   #resilience

Money

Oh man.  Yet another new thing to worry about.   John has taken a liking to paper money.   I mean, EATING paper money.  I guess he likes the chewy texture.  I suppose it is more satisfying than the wimpy paper he usually chews on.   This money was sitting on our counter (only ones, thankfully!)  But, later I caught him going through my wallet looking for more.

Diastat

We had a little bit of a scare last week when John decided to DRINK his emergency medicine (Diastat otherwise known as valium) that is normally given rectally.   It comes in a syringe inside plastic packaging.  And, we've carried this with us for 8 years.  I have no idea why he suddenly decided he would drink it.
It's strong stuff.

He suffered several small seizures in the hours following this (yes, it's an anti-seizure med).  And, was generally out of it for awhile.  But, he bounced back pretty quickly.

More shoes

It's hard to see in the picture, but John's new fascination is taking all of our shoes and putting them behind the piano.

More destruction

The destruction continues.  In the last couple of days he broke the glass light in our bedroom, pulled out the light in our bedroom that was installed with those strong drywall fasteners,  and slammed the kitchen door hard enough to create this hole.   And, believe it or not this had a thick plastic 4" protector on it.  It broke in two.
I'm thinking I should just buy the drywall repair kits in bulk.

New hobby

So one of John's new hobbies is ripping up papers.  This was just a newspaper, but he has since moved on to magazines and books.

New (big) problem

John has always been an escape artist.  But, lately his desire to escape our house has become alarming.  We already have keypad locks on all of our internal doors and the windows are all locked.  But, we cannot install a keypad lock on the inside of the front door due to fire codes or something.   So, we have alarms on those doors and I installed a small slider lock high up so he couldn't reach it.   But, that no longer works.  Check this out:

The breakup at the end is because he ran outside and was going to climb the tree.  I barely got to him in time even though I was standing right there!
Not sure what we are going to do about this yet, especially with Yoshie leaving to Japan in a few days.  I'm trying to figure out how I'm going to be able to take a shower without John escaping.  I'll have to get creative.
 

Running

Well, I knew it was too good to last.  We had a couple of months of nice runs where I pushed John in his push chair and Yoshie rode her bike with us.  But, that ended today.  He decided he didn't want to ride in the chair at all.  He kept trying to escape while we were moving pretty good.  That is kind of dangerous.   I ultimately had to run with him for about a quarter mile, pushing the chair with my left hand and holding on to John with my right.  That would wear him out enough that he would sit in the chair for a few minutes after that.  Repeat.   We didn't get in much of a run, unfortunately.

I could probably put the harness on there to force him to sit, but I don't want this to be torture for him.  I was hoping he would continue to enjoy the runs.  

At least we did get in a nice trip to the beach after the run:

He did pretty good at the beach again.  The only thing that freaked me out was that he grabbed a 12" jellyfish that I was trying to get him to avoid.  I mistakenly thought it might sting him.  He grabbed the whole thing and ran in to the surf, tearing it in two on the way.   I don't know why he had the need to do that, but I'm glad it didn't sting him!

On the roof again

He can get on the roof in about 20 seconds now via the tree in our front yard.  And, he will if you take your attention off of him at all.  Today we were both watching him, but the neighbor across the street came out and said something to us.  John saw his opportunity and was up there before we even knew what happened.  Yoshie somehow climbed the fence and got up there almost as fast.  I ran out back to get the ladder.  But, John was already sitting on the gutter on the side of the house ready to jump off.  I tried to stop him but was unsuccessful.  I tried to break his fall but didn't do a great job.  He got hung up on the gutter messing it up and bruising his arm in a couple of places.  Of course he thought it was all great fun.

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?