I Hope We Can Stop EEGs Sometime Soon — 5 Minutes for Special Needs

I Hope We Can Stop EEGs Sometime Soon

by Gina


Today we’re checking into Children’s Hospital for J’s biannual EEG. We’ve been anticipating this for…well, for about 6 months, since his last EEG so we can get a better grasp of what’s going on for him. His last EEG, July 21, 2010 showed him still having 50% of his REM in spike and wave activity, meaning he is having seizures or precursors to seizures for 50% of this sleep. Not good.

Med changes, and here we are, December 14th. We know he’s not to 0%. His behavior and sleep alone tell us this, not to mention language…but it does give us more information.

The hardest part of this, besides remembering what to bring each time, is that we have to put him under. He refuses to allow leads to be placed on his head. He fights, struggles, with all his might and then, after 30 minutes, he passes out, vomits and falls asleep. So, under general anesthesia he goes, every time, two times a year.

I hope we chase this down soon enough so at the bare minimum, these trips can stop.

Email Author    |    Website About Gina

Gina St. Aubin is a mother of 3, one diagnosed with Cerebral Palsy, PDD-NOS, Sensory Processing Disorder, and Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) . A former Victim's Advocate turned advocate for those with intellectual and physical challenges, Gina believes being a 'Special Parent' means to discover, embrace, educate, advocate, encourage, treasure and laugh.

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1 Vanessa December 14, 2010 at 9:35 pm

Ben goes for a Video EEG on Monday – never had this type done before. They will monitor him while he is awake and asleep for at least 24 hours. We have to be with him at all times. Was hoping you may have some experience with this? Any suggestions?

2 Gina December 15, 2010 at 1:43 am

Hi Vanessa~

Yes, that’s exactly what we’re doing now. One of the hardest parts is getting the leads on. The second is entertaining him (and yourself) while you’re there. Most hospitals won’t allow him out of the room during his stay, but should have a game room you can check toys out of and a movie/tv/dvd system set up in the room to help. Feel free to email me directly and we can talk more. Good luck. (SpecialHappens -at- gmail -dot- com).

3 MarjH December 15, 2010 at 10:20 am

Funny enough, our guy sits PERFECTLY STILL for the leads placement and the 24hours. He sits on the floor and plays quietly. It’s amazing. But at home? Never stops moving. The part he hates about the EEG is when they take the leads OFF. He has, once or twice, pulled them off towards the end of the 24 hour period, ripping out hair and all. Ouch.

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