Kindness of strangers

We didn't take John out to eat for many years.  It was mainly because of his never-ending seizures, but also because of his behavior.  Over the years his seizures have decreased and we've just gotten used to the behavior.  We don't even think twice about taking him out anymore.  Of course we take him to "noisy" places and it can sometimes still be a challenge.  Such was the case last night when we took him to a busy local pub.   He was a little more rambunctious than usual and I felt a little sorry for those around us.  He would make a lot of loud noises and bang the wall or table on occasion.  We were struggling a bit to keep him under control while waiting for the food to come (and it took forever - typical of this pub).
Once the food came he ate some of it very quickly and then Yoshie took him to the car to finish eating while I waited around to pay the bill.   The waiter came over and told me that someone had paid the bill for us!   Wow.  That has never happened before.
I went to the front and looked around to see if anyone was looking at me.  I wanted to sincerely thank whoever had done this.  I couldn't pick any one out.  I went and told Yoshie and she came back inside and asked the manager.  Apparently some nice man had just noticed our struggles and wanted to help out.  He just left a message saying "Merry Christmas" to us.   He was already gone and didn't leave his name.
We've been lucky to get a lot of support over the years from family, the medical community, the school system, etc. but never from a perfect stranger.  It kind of shell-shocked us.  Yoshie was in tears.
Thank you to whoever did this for us!  And, we will do the same for others if ever in a similar circumstance.

Getting back to normal

Well, that was a tough couple of weeks.  Ever since John's Thanksgiving adventure night seizures have been relentless.  Yoshie and I traded off sleeping with him to try to keep him safe.  He had several nights with 100+ seizures.
Last week we went to the neurologist to make sure that his VNS was working properly.  It was.  We got it turned up a notch and also got a prescription for a bit more Zonisamide to be given before bed.   Nothing changed for the first few days after this, but on the 3rd night Yoshie said that he was much better:  "Only 40 seizures".  
He only had a half dozen or so the following night.  Then, maybe just 1 small one the last couple of nights.  Yay!   We'll never know if the VNS or the drug made the difference, or if it would have just stopped anyway.
With his seizures all but stopped, his activity level went through the roof.  We got a couple of calls from school and he had to be "restrained" at least once.   He has big mood swings and will fight and pinch when he doesn't get his way.  But, this also seems to be lessening with time.   Things are almost back to normal, or at least as normal as they ever are.

Another broken window

John gets in to these moods where he likes to throw things.  Sometimes it is when he is angry or frustrated, but most of the time it seems completely random.
The other day, for no reason whatsoever, he decided to throw his iPad across the room.   Somehow he managed to hit the little decorative window in our front door.  Yes, it shattered.

We just covered it with some cardboard.  It will be fixed soon.  Our main large front window is still boarded up while we wait for the paperwork to all go through.  I'm sure our neighbors love us!  Our front window has been boarded up since August and now our front door has a broken window.
We did get a nice plexiglass TV cover that goes right over the front of our TV so hopefully that will no longer be an issue.

Night seizures are out of control

Yoshie told me yesterday that John had about 40 seizures that she was aware of on Monday night.   Last night, I put John to sleep and stayed with him.  Once he fell asleep he had a myoclonic seizure (2-3 seconds tightening up, sometimes a little shaking) about every 5 minutes.   It seemed to me that every time he fell in to a deep sleep he would have a seizure that would bring him out of the deep sleep.  This went on non-stop.  He must have had close to 100 seizures throughout the night.   I figured he'd be exhausted this morning but that was not the case.  He seemed fine and the seizures stopped once he woke up.
It's very frustrating.  We haven't seen this much seizure activity in years.  At first I thought maybe he was seizing every time his VNS fired.  This still could be the case, but it didn't seem consistent enough so I'm not sure.  I suppose it is possible that something got messed up with his VNS leads when they removed the bone from his throat.  Unlikely but possible.   I'm not sure what we are going to do, but we can't continue like this.

Thanksgiving 2013

Well, this was an eventful one.
Maya, John, and I started the day with the local 2 mile turkey trot.  John ran for the first quarter mile, then walked pretty much the rest of the way.   Sometimes, he wouldn't even walk:

We got through it just fine and it was a nice way to start the day.

Then we had a nice early dinner with the extended family.   We had do duct tape the oven closed to do the cooking as John has jumped on the open oven door enough that it doesn't close properly anymore.

Also, the toilet didn't work as John decided to put a couple of bars of soap in it.

After dinner we took Maya up to Big Al's in Vancouver to meet her friend.  John absolutely insisted on taking a turkey wing with him.  I didn't want him eating it in the car but he fought enough that I gave in.  After dropping Maya off John decided to stuff his mouth with the turkey wing, bones and all.  He choked on it.  I had to pull the car over and it gave us a little scare, but he seemed OK after that.  It soon became apparent that something was stuck in his throat, though.   It was causing him some pain every time he tried to swallow and it generally subdued him.
We tried to get it dislodged but eventually had to give up.  Yoshie took him to urgent care while I was back in Vancouver picking up Maya.   Urgent care was closed so they went to the ER at Providence.
I met them there and we got taken back after about an hour of waiting.  That was about 7pm.
We had the typical LONG wait in the ER triage room.   He got some x-rays taken and they decided there "might" be something in there.    Unfortunately it was deep and required general anesthesia to get at,  so we had to wait for an OR room and for the on-call doctor and nurse to show up.   I think it was about 11:30 when he finally got wheeled back.

I had to go in to the OR with them to help hold him down so they could put the gas mask on him.  He's super strong and it takes several adults to restrain him.
It only took the doctor about 15 minutes to find the piece and bring it out to show us.  It was just about 1.5 cm long but was sharp and had lodged itself in to his esophagus.

He said it put a small hole through his esophagus but that it should heal quickly.

It took John quite awhile to come out of the anesthesia, as always.   But, as soon as he was awake he was tearing off his IV and bracelet.   We were still hopeful that we wouldn't have to stay the night but he was so tired from everything that we ended up having to stay overnight.  He finally got to sleep around 2am.  I stayed with him and didn't get much sleep at all of course.
When he woke up in the morning, he was much better and we were able to go home almost immediately.

Once home, I guess he was starving as he stuffed his mouth with mashed potatoes:

His drug schedule got messed up and the result was that he had a big 2:15 seizure soon after this.  

Seizure video

It's really hard to get video of a seizure.  They come on so randomly and obviously grabbing a camera is not the first thing on your mind when it happens.  But, I did manage to get the very tail end of a pretty big one last week.

Cannabis

I've mentioned it before, but we've started John on cannabis.  It is legal in Oregon, and we are properly licensed to both administer it for John and grow it.  Of course I don't have the foggiest idea how to grow it and I hope I don't ever have to, but if it proves helpful I think we'll end up on that path.   The problem is that you cannot find the correct strain in any of the dispensaries in Oregon.  What we want is a very high CBD to THC ratio.   It's the THC that makes you high, and so this is what everyone wants.  A CBD only strain has little value for anyone except those suffering from seizures.   There just isn't a big enough market for the growers.  Plus, it is apparently a hard strain to grow and is very expensive.
So, for now we are giving John a 1:1 ratio of CBC:THC.  It's not ideal, but we're actually hopeful that the THC might help with his hyperactivity anyway.
We get it from a local dispensary already in liquid form (it comes in a honey/glycerin base).  We've always given him his pills with honey anyway so it was pretty easy to add a little of this to the mix.  We are starting slow of course, and haven't seen any improvement yet.  At least we don't think so.   John does NOT have as many daily seizures as before but the ones he does have are big.  Not sure if that is an improvement or not.

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).