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If you only read my blog then this will be news to you so please check out my Facebook page for more of the backstory. For the rest of y’all here’s the latest news…
Tues 6:46am — We are still in the hospital. We finally had a 30 minute EEG yesterday afternoon.
I know you’re all thinking “why only 30 minutes?”. Well 30 minutes is all they needed.
They saw 6 seizures in that time. 5 silent seizures & 1 complex seizure.
The complex seizure was like the
big ones that I was writing about yesterday, turning head to the right side and twitching. Those last 30 seconds and happen once in awhile (he had three all day yesterday)
But the silent seizures those are just him starting off into space for a few seconds. And those seem to be happening alot. Five times during the test and now I can’t tell what’s a silent seizure and what’s Kyle’s normal looking spacey or staring at me out of the side of his mouth.
He started anti-seizure meds last night…Oxcarbazepine (brand name Trileptal) and today we go for an MRI to see if they see any reason that they came on so suddenly.
The wife arrived at 6:30pm last night so we are all back together. 🙂
And the king is handling it as best as can be imagined. Eating lots of popcorn & Cheerios while watching Seaame on the iPad all day made him happy.
Being poked and prodded for blood pressure, temperature, IVs, etc and being stuck in bed all day… he’s not too thrilled about.
Let’s hope these meds work fast cuz we are seeing alot of them and they are scary.
That is all for now. Thanks for all your prayers, thoughts and well wishes!
Wow! Your post is really heartwarming. This will surely inspire parents out there who are also battling with their children's health issues.
My son was dx with seizueres a few mths ago.his EEG showed nothing but they stopped him on Keppra.His cogniive capacity has increase a lot since starting him on the medicine.Something to consider.It might come out as blessing in Disguise.who knows.
Whats next you wonder. Life is so unfair. Hang in there dude.
I wouldn't be too happy either if they were poking and prodding me. Give Kyle a great big Hug for being such a stoic little "King".
just wanted to let you know that we have gone thru the same thing with our asd daughter, she has had absent ( petit mal ) seizures for a long time, they are controlled by meds. Be careful of flashing lights, police,fire,ambulance, cameras, lightening, most kid things. we had to really watch her around pizza places like chuck e. cheese. they make so many things that blink now and they are not good for her. recently we had a new thing happen with her, she started having generalized epileptic seizures, (grand mals, or tonic clonic) both the same thing. so now we are starting from square one peg one, to see if we can figure out her triggers? sounds like fun. you will become an expert fast. be careful of tv, sometimes the movies/kids shows blink fast and can cause a seizure too. I just wanted to let you know that you are not alone, i fully understand what you are going thru. if you need someone to talk to or have questions. let me know. on FB Stacie Cole. It is not easy to go thru, God bless and good luck with your little guy.
thanks for keeping us posted and I am glad Autism Mommy is back home now. Hang in there and know that Kyle, you, and your wife are all being thought of, prayed for, and cared about deeply. ((hugs))
Prayers are with you. Always live strong.
all of you are in my prayers! as an epileptic, and mother of an asd son with febrile seizures, i understand the fear you feel. be certain to keep an eye on calcium and vitamin d levels, as most AEDs cause these levels to drop. i'm hoping he's seizure free SOON! hugs to all!
I'm so glad that your wife is back. Hope the MRI happens soon. Remember that you still need to eat and bathe. With a child in the hospital you tend to want to push these things aside, but you won't be able to take care of your child as well if you don't take care of yourself. Still sending thoughts, prayers and hugs your way! Nancy
Hope your all ok.hope everything is alright for Kyle x
Hope all works out with Kyle. Very scary. Hugs to you all.
Hi AD! My daughter had an MRI last year and we found out that she has gray matter heterotopia which can result to seizures. My ASD child is five years old but so far she hasn't had any seizures yet. By the way, you may want to check out organic virgin coconut oil. I've read that some people with epilepsy/seizures have been helped by consuming coconut oil.
Hope you all get to go home soon 🙂
THANK YOU FOR THE UPDATE,I AM SO SORRY THIS IS HAPPENING TO THE KING AND UR FAMILY.BEST WISES TO UR ENTIRE FAMILY.UR FAMILY IS IN MY FAMILY'S HEART AND PRAYS
Glad to hear the update and so sorry that this has been your reality! Sounds like you and medical team are on the road to figuring out what is happening and that will hopefully give you a better understanding of how to work with it. I am not familiar with the medication but a quick Google search shows that it can reduce sodium levels so those should be monitored.
Thinking of you all, must be so scarey. Love and hugs.xxx
My daughter's seizures are the same as your son's and started "out of the blue" when she was 13.
Positive to all this (I know, I know seizures suck and why does he need one more thing) is that when the meds work they retain more of what they're learning.
Hope all goes well!
Tracy
Love and prayers for you all. I am happy to hear your wife is home. I love reading that he's still good with his popcorn and cheerios 🙂 I pray the MRI gives you all some solid answers and helps brings you some peace from this scary time. Thank you for the update. <3
Praying for ya..Hope all goes well..Hugs to you and your family
All three of you are in our thoughts and our prayers. Best wishes to The King, Autism Daddy and Rock Star Mommy.
CousinAnthonyValhalla
Keeping you all in my thoughts and prayers! Nick is only a few months younger than Kyle, and I am nervous for this to start happening to him suddenly as it did with Kyle. Glad he is getting the care that he needs and has such wonderful parents 🙂 Thanks for the update!
good luck! so glad you took him in! prayers are with you all! remember special kiddos need special parents!
You & your family are in my prayers.
Lots of love to you all…
Praying for yall
Hang in there… And thanks for keeping us posted. Sending prayers your way.
Big hugs to you all. you're in our prayers.
All my thoughts and prayers to you. He's a lucky little fella to have parents who love and care for him so much XXX
I am glad the EEG went well and they were able to see what was going on. My son has the exact same seizures..he'll get the staring seizures..like someone pushed his pause button..and the complex one's. He takes the depakote sprinkles. I have to hollow out his chicken nugget and slip the sprinkles in there. They refuse to give him the liquid. They say it's not long acting. Prayers to the "King" and you and your wife. The depakote works pretty well. Just hate that I had to add yet another serious medicine to his list of things to take.
thanks for the update ! glad he is doing some what better I am soo scare to face this situation with my son!
AD, thank you for the update. I am glad autism mommy is with you now, and new meds are on board. Thinking good thoughts for the MRI today.