Sunday, November 16, 2014

This Is What Epilepsy Looks Like... Not Scary, More Sad

The king's been having a bit more seizure activity the past few days. He had maybe 7-8 of them that we saw yesterday. 

People often wonder how we can live like that...  

In think it's mainly because when many people think of seizures they're thinking of the grand mal / tonic-clonic seizures you see in the movies where the person loses consciousness and convulses on the floor for a few minutes foaming at the mouth.  

Thankfully Kyle has never had one of those. At night in his sleep he has had a few scary looking 1-2 minute seizures where his eyes roll back and he mildly convulses. These are called "complex partial" seizures and thankfully they are rare for him. 

What he has more frequently, a few a day these days, are short, 10-20 seconds max incidents that sometimes just look like he's drunk with a silly smile on his face. They are short and mild, but they make him sleepy and therefore affect his quality of life...

Here's what a typical Saturday in the day in the life of a an epileptic child named Kyle looks like. 

This was yesterday. 

Saturday 8:42am
Still sleeping....in our bed, of course....  :)

Woke him up at 9:30am so he could make his swim & music classes on time....

He had one or two small, short seizures before we left the house. 

Then after music therapy and a quick trip to costco (where he sat in the cart) we drove home.  He had a 20 second seizure on the drive home and...

Saturday 2:58pm...
Sleeping again... 

This nap lasted 90 minutes...  He got up around 4:30pm and was himself for the rest of the afternoon / evening... But had a few more seizures in the evening and before we could get his dinner in him...

Saturday 6:28pm
Another 25 minute power nap...

He was up after 7...  And had  a small dinner... 

His appetite is a major issue these days. He's lost 7 pounds since the summer. 

He was up and fine for the rest of the evening. He threatened to nap a few other times, but then was up as a pup until close to 11pm and after all that napping we have to decide whether to give him melatonin to get him to sleep at nighttime.  

He went to bed after 11, without mel last night. 

And then throughout the night we've got a seizure camera / monitor on him that records all his movement throughout the night and alarms us if the movement goes over a certain length of time. 

It usually triggers about 2-3 alarms a night which are thankfully usually false alarms...

Just him flopping around or sitting up and readjusting during the night...

Like this...

Sunday 2:16am

Then somewhere around 5am eachnight lately he comes in our room and climbs into our bed and finishes his slumber. 

That's where he is now. It's Sunday 9:21am. Wifey is downstairs cleaning as we are having family over for brunch at 10:30am to celebrate her parents anniversary. And he's lying next to me in our bed sleeping as I write this on my iPhone. 



That's it. I just wanted to quickly share what a day in the life of epilepsy looks like around here. 

It's not as scary as you might think...The seizures don't look as scary as you might imagine... And each seizure doesn't warrant a trip to the hospital or a call to a doctor. 

It's not scary...but it's just kinda sad...

An 11 year old sleeping 14+ hours a day is kinda sad... 

And it's a vicious cycle cuz yes some of the seizures make him sleepy, but some of the seizure meds make him sleepy too...

But we're working on it... And making sure he's as active and happy during his waking hours...

Time to go. He's finally waking up!

Over and out. 

THE END!




12 comments:

  1. I am sorry about your son, but I do understand. I have two special needs children with very serious medical conditions. One who has epilsepy and nacrolepsy and one with autism. So I do understand. Good luck to you and your family.

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  2. I too have a son with epilepsy, I hate the mysterious beast. You never know when it will show its face. Recently our baby monitor broke and we are looking for monitors. What device do you use & do you like it? Thank YOU for sharing your life.

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    1. Not my Question, but that is a SAMi monitor he is using. We use two of them to monitor our Epilepsy Warrior Boys! http://www.samialert.com/

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  3. Thank you for writing this. I always wondered what the seizures were like. How did you know that was what they were? I don't think I would have immediately based on your description. I guess I would suspect based on sleeping during the day, since my son needs little sleep period.

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  4. One side effect of the broccoli/sulfuraphane used in that recent autism trial was gain in weight. Maybe worth giving broccoli sprouts?

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  5. I know how you feel my wife has epilepsy she used to have up to 10 seizures a day she had go to neroligist after dr n meds switch all that get it somewhat under control but thanks for sharing and educating ppl about it hope you get him on something that better helps him get through the day

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  6. Our four year old had a seizure last week during his behavior therapy. They described it just like you said, it scared me because I had never thought about him one. I wonder now if he has had more and we just didn't know that his "zone off" times where not autism but possibly seizures. We have a EEG scheduled to find out more. Thank you for your posts It helps to hear for someone that has more experience and to learn from you.

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  7. This is a great informative post. I totally had been thinking of the seizures the way you described (convulsions and foaming at the mouth). Now I'll know what to look for in my own son. He slept a lot over this weekend, but I think it might be the flu. Keep on keepin' on!

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  8. It is the "we're working on it" part that I love best. Thank you!

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  9. How and when do you sleep? My son is almost 11 but does not have seizures, he's a wanderer. I've been sleeping in his room for the past 3 years and the crappy bunk beds have all but wrecked my back - especially when he climbs in bed with me and shoves me against the wall. Sometimes I think he gets up because I'm in there snoring away dead to the world until I'm awakened by him demanding that I get up. I'd love to have a monitor like that so that I can bother my wife instead. What brand and model is it?

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  10. The seizure monitor camera is called a SAMI camera. If you google it you'll find it.

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