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Friday 10:02pm — The king had a few seizures this morning….he went to school about an hour late, had a GREAT day in school, had a GREAT, pleasant, happy, seizure free afternoon & evening at home…and now he’s having some seizures in his sleep…freaky, freaky stuff…
The neurologist is going to add a new antiseizure med into the mix to go along with the depakote. I’m not sure what it is yet. We’ll get more info tomorrow.
The drs said these “breakthrough” seizures may coincide with a cold/ infection/ fever. Kyle has had a very minor cold this week…but it’s not really been that bad at all…
Many of you guys have suggested it and I’m starting to believe it that this all has to do with a growth spurt. He put on 7+ pounds in the last few months…he’s getting taller… so maybe the amount & dose of meds that worked to keep him seizure free a few weeks ago now need to be increased/ tweaked to meet his growing body.
Makes sense…but if that’s true it’s scary to think that he’ll be growing for about 9 more years…so every little growth spurt and/or every little cold is gonna come with a return of the seizures?? Fun! Fun!
Again, this is still scary uncharted territory for us and I’m sure we’ll one day get used to seeing our sons eyes roll back into his head and watch him not “be there” for 30 seconds…But for now it’s scary stuff…
But what’s good about me & wifey is that even thru all this rough stuff we can ALWAYS sleep. When the going gets tough… WE SLEEP HARD! She’s sleeping now and I’ll be going down right after i post this…
And what’s also good about wifey and me is that when he’s not having seizures…and everything is back to “normal”… even if he’s been seizure free for only 5-6 hours…we can easily forget all about them and go back to our normal wacky autism lives…
And then when the seizures come back our brains are like… “Oh shit, a seizure, let’s get ourselves back to worrying and freaking out about seizures!”
Here’s a perfect example of this…to leave things off on a positive note…
Here’s a short video from earlier tonight, around 8pm of wifey feeding Paula peanut butter out of the cap and Paula’s tongue is going to town! You can hear Kyle watching his Sesame bedtime DVD in the background and you can hear him eeeee-ing at the end…
Enjoy!
my granddaughter is 10 years old.she had a seizure that three hospitals couldn't stop so they put her in a medical coma. then did surgery on her right brain lobe saying she wouldn't have any more seizures. they were wrong. now they say she was misdiagnosed and want to operate on the left side. she was growing fast too. there's going to be a conference to day with the doctors and family.family wants to bring in u of m to give more advise. please pray for her.
I am so elated at finding people who speak the truth on this journey! Okay, so call me a serious blogging neophyte but if I want to subscribe to blogs I don't entirely get how to do that… I don't really understand the options it gives me! Lol. Help!
James gets breakthrough seizures with every growth spurt. He is only 9 and will likely not stop growing until his late teen years. His breakthrough seizures so far have been blinking seizures where he blinks rhythmically for 30+ seconds. They are hard to spot because blinking is also one of his tics. I hope the new medication works and you family goes back to not worrying about seizures!
I understand the feelings of uncertainty. Our son started to have seizures for the first time last year at age 9, but his are not as severe. He is also on other meds, risperdal, lexapro and those seem to need to be increased as he grows too. It is scary. Our neurologist thinks our boy's seizures are casued by all the things Serenity said–hormones, anxiety, lack of sleep.
Thanks for posting the video of Paula. She is the twin of our son'g service dog, Annie, and they both share the PB passion too! Getting Annie was the best thing we ever did. She completely changed the dynamic of the household in a good way.
Thanks too for sharing so much of your lives. I love your humor. Hope you and your wife had a good night's sleep and that the King has a seizure free day.
Seizures can also be brought on by anxiety, lack of sleep, and severe weather changes. Hormones – growth being one of them – also plays a huge role factor. I was on Depakote when hitting the teens and it worked all right for me for awhile. I forget why I went off that medication, but certain medications are only meant for short term (and some that are meant long term only work short term and vice versa) and there's a medication curve (meaning, each person is going to act differently to a med and even that won't always be consistant) – if that makes any sense (on pain killers and off heavy meds since surgery a week ago, so my brain is all fuzzy). Since I've been off my seizure med, the nightmares are returning, so will reintroduce that med first. The brain is a funny creature. I tell people my seizures look worse than they are and just let me seize it out.
So stressful! Hope you did get a good night's sleep.
Always good to end an Autism day with smile. Thank you Paula and Autism Daddy
<3<3<3 Night Night Kyle
Sweet Dreams<3<3<3