An update on Kyle’s at home EEG test…
May 30, 2013
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Now Reading: An update on Kyle’s at home EEG test…
May 30, 2013
Wed 8:50pm — Just got home from the EEG place. Kyle did awesome! The quadruple whammy of 2 Benadryl, swaddling him up in a sheet like a mummy, daddy sitting on his legs, and mommy playing Sesame videos on her phone 10 inches from his face throughout the process did the trick.
He is now asleep in his room and I’m sitting in a rocking chair on the side of his bed.
The wife and I will be taking shifts tonight…watching him as he sleeps (a) to make sure he doesn’t pull the EEG wires off and (b) if we see any possible seizure activity there’s a button we’re supposed to press.
Did I mention it’s a video EEG so there’s a camera pack that we take from room to room so they can see exactly what the seizures look like and compare it against what they see on the EEG report.
The wife asked the technican, “Does the camera have audio?”
It does!! So we have to watch our potty mouths and not complain about any doctors or they’ll have us on record! 🙂
Anyway, tonight’s the easy part. It’ll be easy when he’s sleeping.
Tomorrow when he’s awake and wanting to pull the leads off will be a different story.
But we’ve called in reinforcements. I’m taking the day off from work…and my sis-in-law & niece will come over in the late morning to give us a break and try to distract Kyle as much as possible.
We’ll get thru this fine. In the grand scheme of things this is nothing. We’ve been thru a lot worse than this with his majesty.
The end game is to get the results and hopefully find exactly the right med to put him on so he’s almost completely seizure free.
And as I’ve mentioned before, if we don’t find that med, we’ll probably be looking at VNS surgery.
But I’m getting ahead of myself. Wifey just came in to take a shift so I can scarf down some dinner and watch some of the Yankee game.
Talk to y’all later…
For more of a back story of why he’s getting this EEG & what the VNS surgery is all about read the blog post from earlier this month called “Autism Better, Epilepsy Worse? An update about my son”
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” :-).
6 People Replies to “An update on Kyle’s at home EEG test…”
I wanted to mention that a colleague of mine has a 5-year old son that suffers from seizures. They had him on all kinds of meds but once he got a seizure they were pretty bad. Anyway, they got a service dog and this has done wonders for their son. The dog alerts them about 20 minutes BEFORE the boy gets a seizure, at that point they give him the medication. By the time the seizure starts it is incredibly mild because the medication is already in his system. He lives in South Florida but here is the telephone number to call and they can get you in contact with a local agency.
TRAYCE : (954) 867-7397
Good luck and let us know how Kyle is doing.
this might help!
Oh my gosh! God Bless you guys! Your wife is certainly a mommy rock star and you are super dad! Kyle is so lucky to have such a great family! So nice that your family is there when you need reinforcements. Please keep us updated and I pray that he is seizure free VERY soon!
I would be in big, big trouble if we had to walk around this house with a camera…
My 9 year old son who is very similar to Kyle had a seizure yesterday. I pray he doesn't have any more and I'm already trying to figure out how they will do an eeg on him! I wish you all the luck tonight and tomorrow!
Gosh man you and your wife work well together. I wish me and my husband worked 1/2 as well. I do everything with and for our son.