Monday, August 26, 2013

Day 6 after VNS Surgery... a much more "typical" day

What a much more "typical" day in the ol' AD household.

It's Monday at 8:01pm and I'm sitting in the dark in the kings bedroom writing this on my phone. I just brought him up to bed.

It is 6 days removed from his vns surgery implantation and things are slowly starting to get back to "normal" around here (whatever that means).

The wife reported that he napped a lot less today (only one 45 minute around 11am). And was a lot more "with it".

They went for a SHORT walk in the park and then went over my wife's sisters house for a little while this afternoon.

That visit ended when he made it crustal clear he wanted to leave when he hit his aunt. :(

When I got home he was raging a bit as well. And he was a bit weepy.

And as bizarre as this may sound... it was good to see.

Less zombie / sleepy behavior and more autistic behavior is a good thing in my book :) It means he's healing and heading back to normal Kyle I think.

I think finally 6 days after surgery he's feeling himself enough to know that his bandages are finally pissing him off and that he's in some pain/ discomfort from the 2 wounds.

After writing my post yesterday about the king's recovery I've learned a few things from chatting with others who've had the VNS Surgery and from joining a VNS surgery group on Facebook.

Here's one thing I've learned...even though for many it's a send you home the same day "procedure" and for Kyle and most children it's a one night in the hospital "procedure" it's still SURGERY and for many it kicks your ass big time.

Many I've chatted with said they were in pain & discomfort for 1-2 weeks after surgery and some were sent home with Vicodin for their pain.

I guess, stupid me, heard it called a "simple procedure" and thought he'd be back to normal in 2-3 days.

And Kyle was only sent home with instructions to give Tylenol as necessary, no Vicodin.

For the first 4-5 days even Tylenol kinda wasn't necessary cuz he was totally out of it.

But today I think he was well enough to know that he didn't feel well...if that makes any sense. And I expect the next few days to be filled with some rage and some Tylenol and maybe some Advil as well.

8 days til we turn the device on so hopefully he's totally back to pain free normal before then...

That's all.

8:18pm now and he's asleep and I'm gonna watch my new tv obsession "Under the Dome".

Just started watching it...Trying to catch up...

Goodnight all!

Sunday, August 25, 2013

VNS Surgery Update... 5 days after surgery


This nonverbal thing is really hard sometimes. My son not being able to tell me how he feels really sucks...

Today is Sunday at 5:55pm. The king had the vns surgery on Tuesday morning.

And just like with his hernia surgery in Sept 2012 he had us fooled.

This time he was fine in the hospital, fine the next day. Thursday & Friday he was a bit extra sleepy and mushy. And yesterday (Saturday) he pretty much slept the entire day. And when he was up he was kinda wobbly and unsteady when he walked.

As usual I freaked out and started googling stuff and as usual the wife was concerned, but calm.

WIFE: "He just had surgery. He's only 10 years old. Everybody recovers differently. Think about how many days my dad was out of commission from that small procedure that time..."

We called the surgeon and he didn't sound too concerned. Didn't have any answers for us either, he said -- "anesthesia & morphine from the surgery should be out of his system by now. so I doubt it's that..."

But again he didn't sound too concerned. Not like "go to the ER now" concerned but more like "come see me on Monday if you want" concerned.

Then yesterday evening he vomited a little.

After that he seemed a lot better, but still tired.

We called our pediatrician as well to run everything by him and again he didn't sound too concerned either. "How's his color? Any fever? How's his mood?"

All great. Good color, no fever, great/happy mood when he is awake...

"Come see me Monday if you're still concerned"

So we let him sleep in our bed last night so we could watch him closely.

Today has been more of the same. He's a bit more awake. And a bit more "with it" but his balance is still off.

And all this isn't too far off from where Kyle was before the surgery...

The week before when we were on vacation he was sleeping a lot and a bit zombie like when awake because of his anti-seizure meds...but we made a med adjustment midweek that week which woke him up a bit...but brought on a few more small seizures...a trade off we accepted.

Maybe he's just back to the meds making him sleepy, wobbly, etc

Or maybe with the trauma of the surgery he could be having more seizures...maybe the ones that are hard to see the "silent seizures".

That could explain some of this. He sometimes sleeps a lot after a seizure cluster.

This is why they don't turn the vns device on for weeks so you can separate what's complications from the surgery VS. issues with the device.

But with Kyle it's so hard because there's no normal. All summer he hasn't had a baseline of normal. We've been tweaking meds all summer. He'd have a week with a lot of bad (complex partial) seizures in his sleep so we started a new med to try & combat that. We'd go up slowly on that med and he'd be napping in school. Then when he was too zombie like we started going down on that med.

Anyway he seems a bit better this evening and I need to stop googling things and watching him like a hawk.

The wife actually kicked me out this afternoon, told me to go see a movie. I went to see the new comedy "The World's End".

Great movie which took my mind off of all of this crap for exactly 1 hour and 49 minutes. And then I got back in the car, got that pit in my stomach, and texted the wife to get the update.

And I got Breaking Bad & Dexter which will take my mind away for 2 hours tonight.

Anyway, that's my quick update.

And as usual, all the family is checking in asking how Kyle's doing and are shocked when we tell them the truth that he's still kinda off 5 days removed from "minor surgery"

And I can tell by the sound in their voices that they are thinking that when it's turned on that this vns device is gonna be some miracle and take all of Kyle's seizures away.

And I don't want to be Debbie Downer, but i want to bring their expectations down and tell them it's probably gonna take a while and it's only significantly successfully in half the people that get it.

Anyway I'm rambling. The main takeaway here is that the king had vns surgery on Tuesday and still isn't completely back to himself (whatever that means) on Sunday at 6:36pm which is longer than I expected...

The other takeaway here is as usual the wife is the calm one, the voice of reason ("do you want to bring him to the ER right now? then there's nothing we can do now so while he's napping I'm gonna cook why don't you clean out the garage")

The last takeaway?

This nonverbal thing is really hard. My son not being able to tell me how he feels really sucks.

Can't wait to go to work tomorrow to get my head out of this for 8 hours... :)

...unless we end up back at a dr's office... :(

THE END.

Wednesday, August 21, 2013

AUTISM DADDY'S REVIEW OF AUTISMATE IPAD APP



I was asked a few months back to review a communication IPad app called Autismate.



I said yes because I haven't really done reviews before and thought it might be interesting to start doing them...



But then I put it off for weeks partially because we were going thru a lot at home with the king...but mainly I put it off because I felt it wasn't an app that would be appropriate for my son Kyle.



Unfortunately most of these types of apps are still way over Kyle's head who's still working on PECS with one "desired" item & one "undesired" item.



And the types of drawings that are in these apps mean nothing to Kyle.



He has a hard time generalizing so a drawing of teeth brushing will mean little to him; a pic may mean a little more, a pic of him doing the activity would probably work best of all.



So I assumed this app would be way over Kyle's head and mainly for that reason I put it off for weeks...



But I promised these guys a review and I figured I would review it with many of my readers and their kids in mind because I'm sure many of your kids would find this app appropriate.



So I downloaded the app from the iTunes Store and starting playing around with it.



And it's pretty darn cool!! And it uses the iPad technology to the fullest. And while it’s still over my son Kyle’s head right now...it’s a lot closer than any other app I’ve seen before.



Here’s why...



Yes it has all the grids and PECS style pics and sentence building features like proloquo2go does... (but this one is $70 cheaper...)



But this one does a whole lot more. Everything is based on locations. It comes preloaded with pics of a house and in that house are pics of a kitchen, bedroom, and bathroom.



And on each of those pics are “hotspots”. You touch the fridge and a pic of an inside of the fridge will pop up.  You touch the sink and it will say “I have to wash my hands” or will show a video of a kid washing his hands.






And all that is great and different, especially the video part, but what really sets this app apart for me is the fact that you can take your own pics of your own house, and your own kitchen, bathroom, etc. Then you can record your own voice saying the phrases...and record video of your own kid (or yourself) doing the task.



For a kid like my son who has a big problem generalizing, this is HUGE to be able to have a communication app that will have pics & videos & voices that he is completely familiar with.



You have to be familiar with Ipad functionality to customize everything and it will take some time, but the app is pretty intuitive. And once you set up your “home” and all the rooms in it, you can then move on to other locations...school, Grandma’s house, Trader Joe’s, Walmart and customize all your pics, videos, phrases, from these locations.





You can also mark the GPS location of all your places so when you open the app at a particular location (and that location has wifi) Autismate will recognize where you are and the closest location to the current GPS position will appear.



That’s what I mean about using the capabilities of the Ipad to the fullest.



A few weeks ago, the wife and I slowly began setting it up, taking pics of the rooms in my house. I wasn’t thrilled with the quality of the pics I was getting from the iPad camera (not the app’s fault) so I grabbed my digital camera took the widest, brightest pic of each of the rooms in my house and then I downloaded into my iPad.



We used these pics, with her voice, and iPhone video of me doing some of the tasks (like brushing my teeth). We did all of this while Kyle was asleep. And she & I had a blast, goofing on each other as we were recording the voices & shooting the videos. (if only you could keep the bloopers / outtakes!)



In the morning we showed it to Kyle and while there weren’t any miracles, it looked like he recognized the pic of his bathroom, the sound of mom’s voice, and the videos of dad. We got a couple of smirks from him before he pulled the ipad from us and put on an episode of Dora the Explorer.



But its baby steps for Kyle and we saw a sliver of something with this app that we’ve never seen with any other communication apps. Our school district actually “bought” us the proloquo2go app last year and it’s just been sitting there barely used for a year...but this one I really can see the potential for Kyle to “get it”



Ok so to finalize my review and make it more “official” here’s some other things that the Autismate app features...



--Visual scenes can be personalized to each user (Scene Based AAC)

--Full Sentence Builder (Grid-based AAC)

--Video Modeling

--Photo Schedule with Timer (very useful for kids who need routine and a visual schedule)

--Visual Stories

--Content Library – More content is always being added and will be accessible to existing users.

--GPS Enabled – Use GPS to tie certain scenes to your physical location

--Capable of Building Multiple User Profiles (could be used by a teacher and customized for a few different students)

--Over 10,000 Symbols included



But as you can tell it’s the personalization that has me the most excited.



AutisMate is available on the iTunes Store for $149.99. That may seem like a hefty price, but it’s within line of other autism therapy apps, like the $219.99 Proloquo2Go. It’s also way cheaper than the old, pre-iPad therapy / AAC machines, which used to cost up to $15,000.



And if you are not sure if Autismate is for you, you can now get a free LITE version of the app by going to
http://autismate.com/PressReleases/AutisMate-LITE-Learning-App-Adults-Children-with-Autism/ 


So there you go, there’s my first review. What did you all think? How’d I do?

Tuesday, August 20, 2013

VNS SURGERY: HOW DID WE GET HERE?




(originally written & published on August 20, 2013)



If you've been reading my Autism Daddy Facebook page today you'll know that my son Kyle had VNS Surgery today for his seizures / epilepsy. If you don't know what VNS Surgery is, read this.

http://epilepsy.med.nyu.edu/diagnosis-treatment/vagus-nerve-stimulation-vns

It's 10:18pm and I'm writing this on my iPhone in the hospital while the king is sleeping peacefully next to me.

Wifey is sleeping on the couch behind me. We are taking shifts staying up to watch Kyle to make sure he doesn't try to pull at the bandages while sleeping or have a seizure in his sleep.

So how did we end up deciding to do the VNS Surgery?

Well autism has taken a major back seat to epilepsy the past few months in the ol' AD household and we've been doing a lot of med tweaking and dealing with some side effects, mainly major sleepiness and some zombie like behavior when awake.

And even with all these meds in his system he was still having seizures daily. Not scary looking tonic clonic seizures, mostly small silent seizures or seizures where he gets this cute smile on his face and kinda zones out for 10 seconds. And sometimes in his sleep we'd see bigger "complex partial" seizures.

But the point is with all the meds he was on he still having seizures daily...most days enough to count on 2 hands.

So here's the deal. Kyle has epilepsy. He has a type of epilepsy called Lennox Gasteau Syndrome which is a hard to treat with meds form of epilepsy. He's on his 4th medication and is still having seizures.

And I live in the NYC Metro area and Kyle has a great neurologist and we recently saw a "Top Doctor" manhattan neurologist for a second opinion.

And both docs say that if after trying 3-4 different anti-seizure meds you're still having "breakthrough" seizures and if you're seizures aren't under control, the odds of you finding a med that will work are slim to none. You have "refractory epilepsy"

Your options then are...

1) keep trying more meds anyway

2) Brain surgery (scary, scary stuff!)

3) Ketogenic diet

4) VNS Surgery.

And I know what you're thinking and many have asked. "Have you tried the Ketogenic diet?" "Wouldn't you try the diet before opting for surgery?"

And my answer is no, not for Kyle. If you've been reading my page for awhile you'll know that Kyle had major eating issues. He stayed the same weight for almost 3 years and his diet was extremely limited. And we had to force him to eat every day and it was excruciating.

But since November 2012 he's put on over 25 pounds, probably mostly due to a side effect of one of the antiseizure meds he's on (depakote).

This is a side effect we welcomed with open arms! The king now has an appetite! He's trying new foods! He looks the healthiest he's looked in years!

To put him on the Ketogenic diet, which is one of the most restrictive diets out there (kinda like a much much stricter, modified Atkins diet) would be tough.

If my kid was verbal and understood why I was denying him all the foods he loved it would be extremely difficult. To deny my nonverbal autistic kid the foods he loves and he doesn't grasp the reason why is (in my opinion) virtually impossible and kinda cruel.

So in the wife and my opinions, the diet is off the table. You may not agree with us, but we stand by that.

So the diet is off the table, brain surgery is scary shit so if we can avoid that for now we will.

And that leaves us with trying more meds or VNS surgery.

Now let me tell you that my wife was all gung ho to move forward with the VNS Surgery months ago. So much so, that when we had an appointment with a neurosurgeon in July she asked him to pencilled in a date for the surgery which was today Tues August 20th. Her reasoning for doing it then? We get our annual lake vacation in the week before which Kyle loves, and the surgery and recovery would all get done before school starts again in September.

I was a lot more apprehensive about the surgery. Why? Because of some of the comments & feedback I've gotten from some of y'all when I've written about it. And because I started googling it.

And I read about some possible side effects. And it is still SURGERY which is always scary.

And what if what's the device is inplanted and turned on and working, what if he's in pain or it feels weird and he can't tell us.

And when I mentioned this to the wife she said, "who knows what he's feeling now with the meds? maybe he's in pain now? maybe he's got a massive headache and can't tell us?"

"and he's sleeping his life away..."

And that's the reason why we don't want to try any other meds... He's sleeping a lot.

The cocktail of meds he's on now make him very sleepy. He's been napping 60-90 minutes at school pretty much every day this summer. Then he'll have a late afternoon nap, and he'll still go to bed for the night around his normal time.

And the hope of the VNS Surgery, even if it is somewhat successful, is that we can get him off some of these meds...or at least down to a lower dose so he can get his life back...get back to his normal hyper stimmy autistic self.

I never thought I'd say that, but after seeing zombie boy this summer I'll take stimmy autism Kyle back. The happy version, not the 2011 "summer of rage" version. :-)

So all summer we've had that August 20th date hanging over our head. We had our vacation last week and had the surgery today and so far so good.

And that's where we are at.

We leave the hospital tomorrow and he hopefully has a few days at home to recover and will be back to normal.

One thing to note is that the device is not "turned on" during the surgery. That happens 2 weeks later in the surgeons office. The reason for that is this way they can more easily tell if something is a complication from the surgery vs a complication from a setting on the device.

So 2 weeks from today they turn it on and then every 2 weeks they adjust the settings of the stimulation that is being sent and we monitor his seizure activity to see which setting is the most effective.

Then we start reducing meds and seeing if seizures come back...and tweak and adjust as needed.

So this is all gonna take awhile, but we are glad to have the ball rolling.

Thanks for all your thoughts and prayers and kind words on Facebook today and in the days leading up to the surgery.

That's it. Over and out.

Now I'm waking up the wife so she can start her shift watching kyle and I can get some shut eye.

G'night all!


THE END.

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