Tuesday, June 10, 2014

Today's neurologist appointment & other "jerky" events

So because of Kyle's seizure clusters at school yesterday & today (read my previous blog post for more info) we went to the neurologist appointment at 2:15pm. This is a well regarded NYC neurologist that we saw last year to get a second opinion before we decided to get the VNS surgery.

We are thinking of him being our regular neurologist.

And just as I expected before we do anything he wants Kyle to go in for a new 24-48 hour EEG at the hospital that he is affiliated with.

But within 10 minutes of being in his office our morning that felt like such an emergency started to feel like "ok, well let's do this & that & then try this"

Kyle will go in for a 24-48 hour EEG on June 23rd in a hospital in Manhattan (unless they have a cancellation or a no-show...then we are on the standby list).

After the EEG we'll decide what kind of seizures he's having and adjust meds accordingly or try new ones.

Really the scariest part about all this (at least for me & the wife) is the fact that we'll be leaving the great children's hospital where we've done all his eegs the last 2 years and where we feel so comfortable and where they get Kyle and instead we'll be going to an older smaller hospital in manhattan with all the hustle and bustle that comes along with that.

Will they know how to glue the EEG leads on the head of our 90 pound scrappy kid? At the other place they knew how to handle him. The neurologist said we'll be fine at the new place.

But that's the big unknown. In the past getting the eeg leads on was the hardest part. It's absolute torture for the king. The smell of the glue. The sound of the machine. A strange person gluing 20-30 wires to his scalp. Once we get them on the rest of the 24-48 hours, while definitely not a picnic by any means, have gone ok.

So as long as we can get the leads on his head without anyone getting slapped by Kyle and without Kyle popping blood vessels from crying so hard (it happened once) we should be ok.

But for now we are in a complete holding pattern until the EEG. So he goes back to school and we roll the dice and hope for less seizures.

And so how was Kyle for the rest of the day?

Well at the doctors office he was a jerk, lots of hitting between watching his iPad.

We brought my wife's sis with us as backup and she took the brunt of the hitting.

After the appointment we came home and he was fine. Totally his usual jerky self. Watching tv while bouncing on his ball while holding his breath while eating potato chips while playing with his saliva.



After being home for a few hours the wife said let's go to the supermarket.

There's this big, kid friendly supermarket that Kyle sometimes likes when he's in a mood where he likes it...if that makes any sense.

:)

I thought she was crazy to want to go food shopping after the day we had, but before I could object she was like "c'mon he'll be awake for another couple of hours. we need milk and his waffles. and maybe he'll like it and if not you guys can wait in the car and ill race thru the store."

So we all put on our shoes and headed out.

And he kinda LOVED it! He had a real nice time there between some hitting. He had an ice cream cone and pushed all the buttons on the animatronic singing characters placed throughout the store.

And after we finished shopping they have actual real farm animals outside the store so we went to check them out but instead of enjoying seeing the real live animals my son instead fell in love with one of the ugliest animatronic displays 


playing one of the worst songs I've ever heard in my life. LOL.

He just wanted to stand there and watch it over and over. 

He even bopped to the music a little.


We got some food from the outdoor food court and we sat at a picnic table right near that ugly, hideous animatronic display and he ate a decent dinner right there.

On the way home he was back to being jerky. Hitting me in the passengers seat and purposefully spilling his bottle of water on the floor.

But jerkiness is better than sleeping and seizures, right?

Anyway it's now 8:21pm and he's asleep on the couch next to the wife.

And tomorrow we pick ourselves up and go back to our normal routine and hope for the best.

That's all I got. I figured I wrote a post about the first half of our day and that first half was a bit scary. So I figured I'd give you the 2nd half of our day to show that when he's not having his small seizures everything is still "normal" around here.

The king is still his jerky self.

Anyway that's it. Time for wifey & I to watch Episode 7 of "Orange is the New Black" Season 2.

Goodnight all!

THE END.

7 comments:

  1. Have you thought about getting a third opinion @ CHOP (Children's Hospital of Philadelphia)? My son has ASD, ADHD and Epilepsy with r-frontal brain surgery last year. CHOP and Dr. Christina Bergqvist have saved his life and ours, too! They are accustomed to children like yours and mine. NYC has great hospitals and we received a 2nd opinion from a Dr. @ NYU but remained @ CHOP for several reasons. I know how difficult life can be with ASD but compounded with Epilepsy and ADHD, it is beyond difficult! Wishing you a healthy summer!

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  2. I believe we all have those type of days with our kids, especially when epilepsy is thrown in the mix. You and wife are a great team! Have a great night and I will pray that Kyle has a great day tomorrow!!

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  3. What is the name of the kid friendly grocery store? We need something like that in my area! Good luck on the next EEG.

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  4. Glad to have found your site. Keep up the good work! DB Product Review

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  5. Hi Autism Daddy- I started following you on Facebook by the suggestion of a friend since both our sons are 11 and on the severe side being non-verbal etc. And I know you have tried some out of the box bio-medical approaches as well so I wanted to share with you about a natural herb called Holy Basil Leaf sold by the brand name Gaia. I just joined their private group on FB because our sons neurologist has suggested our son take it to help control his seizures as well as his new aggression since I think pre-puberty is making him off the hook. He scratches us now, pinches tries to bite. I just want my loveable, smiley boy back but he has become David Banner (The Hulk). We are only 7 days into using the Holy Basil Leaf and so far I must say it has started to decrease his anger and aggression to maybe 1 or 2 episodes a day as compared to almost every few hours. But while reading the posts on the group page, many , many parents are having remarkable results with controlling seizures. Oh and we only learned about this from our neurologist when we asked him if we can try cannabis, the medical marijuana now first for his aggression but he said the Holy Basil Leaf is very similar to cannabis so try it first. I hope you get to read this comment and maybe think about trying it. If so again its all natural and we purchased it right through amazon for like $28 including S&H.

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  6. These guys are really wonderful to work with, the food is delicious, the drinks are good, the view is phenomenal, and it's overall just a great group to work with.

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  7. this just made me cry my son has seizures is non verbal yet still no indication of why other than kids with severe asd can have them with no reason at all my son has taken a liking to the old song jump in my car and closes his eyes and spins and does some strange dance moves almost like the crazy hippies u see at music festivals i love this blog and please let your wife know she is an amazing mum and what an incredible family you are <3 from mum of 3 asd boys one with high functining and two non verbal except kaid has seizures and moderate hearing loss he is on rispiridone and is 4 month seizure free touch wood

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