This Is What Epilepsy Looks Like… Not Scary, More Sad
November 16, 2014
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Now Reading: This Is What Epilepsy Looks Like… Not Scary, More Sad
November 16, 2014
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.
This was yesterday.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
12 People Replies to “This Is What Epilepsy Looks Like… Not Scary, More Sad”
The seizure monitor camera is called a SAMI camera. If you google it you'll find it.
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?
It is the "we're working on it" part that I love best. Thank you!
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!
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.
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
One side effect of the broccoli/sulfuraphane used in that recent autism trial was gain in weight. Maybe worth giving broccoli sprouts?
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.
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.
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/
You are a strong dad AD.
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.