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| The Ups & Downs of an Autism & Epilepsy Life… |
Today is Sunday May 11th.
It is Mother’s Day. It is also the day before Kyle’s 11th
birthday.
The plan for the day was for us to have a bunch of family
over for brunch to celebrate the moms and to celebrate the king’s birth.
But the day started out with an unexpected unwelcome old
nemesis.
At about 4am this morning Kyle burst into our bedroom and
jumped in to our bed and went right back to sleep.
He hasn’t done that in a while so I didn’t force him back to
his bed like I sometimes do when he’s in a pattern of doing that a few nights
in a row.
It’s a good thing i didn’t because at about 7am Kyle had
quite a seizure. The worst, longest one he’s ever had. It lasted close to 3
minutes. 3 minutes of him lying there with his eyes rolled back and breathing
strangely. The VNS Magnet didn’t really
stop / shorten it.
It was long enough that we almost gave him this strong,
emergency anti-seizure med that we have on hand for seizures lasting longer
than 3 minutes. It is a rectal medication meant for these “breakthrough
seizures” and it is supposed to stop them cold.
But as wifey was reading the directions and preparing to
give it he came out of it.
But the whole thing was scary. It was a return to Seizure
Street in a big way and we haven’t seen any of these type of seizures (of any
length) in months.
The ones he usually has these days are quite pleasant
actually. He gets a weird smile on his face and looks a little tipsy for 15
seconds or so and then he usually snaps out of it.
But this mornings was the real deal. Long, scary looking,
and towards the end he peed himself.
So needless to say we were on edge…but we didn’t change
our plans. We figured if we’re not
taking him to the emergency room then why not have the celebration. He’d probably enjoy seeing everyone in his
own way and with more people here their would be more eyes on him anyway.
So from 7:03am til 11:30am one of us stayed with him while
the other one got the house ready for company.
And so then 11 people came over for brunch and birthday
cake.
We had a full house from about 11:30am – 3:00pm and Kyle had
an ok time. He seemed his usual, crazy,
breath holding, happy to see everyone but not necessarily be in thee same room
with them self.
And no other seizures that we saw. And while we told our siblings about that
morning’s scary seizure activity. We
kept it from our folks cuz we didn’t want them to worry.
Anyway, everyone had a nice time with coffee, buns, rolls,
fruit, bagels, donuts, quiche, etc and Kyle got some cool stuff for his
birthday….clothes, shoes, etc…
Plus a sand/water table for the backyard from his aunt and a
bunch of Sesame wall decals from wifey and me for his playroom wall.
And obviously these were his 2 favorite
gifts.
Yes he may be turning 11 but he’ll probably be a toddler
forever…
🙂
Anyway, everyone left at around 3pm and then we set up the
sand/water table in the backyard and he had a blast playing with it for over an hour.
But after saying “don’t eat the sand” for the 20th
time I decided that he had eaten enough sand so he and I came inside and I gave
him a bath while mommy sat in the sun in the backyard for 30+ minutes… her first real break on Mother’s Day.
After bath he had dinner, 6 blueberry waffles and 7 pieces
of bacon.
And before we knew it, it was 7:30pm and medicine and melatonin time.
It is now 9:39pm and I’m writing this in Kyle’s room so I
can watch him sleep. Whenever he has a
big seizure or a big cluster of little seizures we go thru a phase where we
feel like we need to watch him 24/7… but usually within a few days he’s back
to normal…(knock on wood)
And 9:45pm and he just had another one in his sleep as I’m writing this…lasted about 60 seconds…son of a bitch…
Anyway, that was (is) our crazy Mother’s Day.
Tomorrow is Monday May 12th and the beginning of what is
bound to be a busy week starting with Kyle’s birthday and ending with his IEP
meeting on Friday with probably lots of calls (and probably appointments) with Kyle’s neurologists thrown in
between.
Anyway, hope y’all had a good Mother’s Day and have a great
week coming up!
Autism Daddy out!
THE END
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View Comments
Big hugs to you and your family. .
Hey AD - Does Paula do any seizure detection with Kyle? Or is she mostly a companion/behavior disruption dog?
Wow. What a day... I don't know how you do it. My oldest son has autism. He will be 13 in July. It is overwhelming at times. He isn't completely non verbal but he is limited in communication. You are a strong person to have everything you have on your plate. Seizures are scary. We have a yellow lab who is 8 that has had a few seizures and it was so scary. I can't imagine if Hunter had one. So happy that yall still had your celebration and you wife was able to get a break on mothers day. Hang in there. I know it sucks. When ever you have a set back like that it just sucks and its not fair.
Hi autism daddy. I wonder why you don't give the king the diastat right away? Story is too long but our son, who just turned 19 and is still into Barney and Sesame Street, had Lennox-Gastaut Syndrome (he has C.P. from birth, cortical vision impairment, seizures, speech and developmental delays). His seizures would not stop without diastat, sometimes two doses, and he would stop breathing the entire seizure. He also has the VNS, takes meds, and was on the ketogenic diet for six years. Odd thing about our son is once he hit puberty his seizures all but stopped when we were prepared for the opposite to happen. Anyhow, just curious about waiting for the diastat. Thank you!
Been there done that! It all sux but I will care for my son till death due us part! And I do it ALONE! Seizures are a bitch and so hard to watch. But in the long run Im just happy to know that I m here caring for him giving him the best life possible. To hell with the rest!
I was told to wait and time the seizure..if the seizure was over 5 mins to give the up the tush one....when my son wont drink his triliptal after a few hours I give him a clozepam melting pill(spelling?) to prevent one...or if he has a second one no matter the length he get the up the tush one to break the cycle. Its a full time job this mess!! So AD what do they tell you to do please?.
Use a baby monitor at all times so you can hear him in his room if he has a seizure!!! I have used one since my sons first one. They work great. A seizure is something you have to know about!!
After 19 years we STILL use the baby monitor. :-)
:`( I haven't read through all the blog entries, I am aware of your position about God doesn't give us more than we can handle, blah, blah, blah but I really do have to pray for your family. That is just what we do. I know that we can't do much of anything else for you but my heart hurts for all of you. To say that it is difficult being on the sideline as a loved one goes through something like this is a huge understatement. All I have to offer is our thoughts and prayers for healing. Big huge hugs from Ohio!
Sending positive thoughts and many prayers for the king your way.
How frightening. I just cant imagine. I have no other words or advice but wanted to send (((hugs))) and a message of support.