Epilepsy Storms

September… not even over and it has been a month. I took Brett to a local Dr. and showed them a video of him I captured while recording Brynn having a seizure. Could be Parasomnias, could be seizures hard to tell… So we were referred to Children’s Hospital to let a Neuro view it. Due to Brynn’s history, it was decided to do a sleep deprived EEG first and order a 2 day once insurance approved it. I took Brett to Children’s Hospital to have a Sleep

Brett at Children’s

Deprived EEG on the 17th. I knew what I saw… Had no doubt that something was wrong as soon as he fell asleep. When the Technion got up and placed an extra wire on him in a precise area, I knew… Well, let me tell you…
 

Chelsea SUDEP awareness walk!

When I saw the number on the caller ID, I took a deep breath…
   Turns out that 20 minutes of sleeping was enough…
   Enough to confirm he does indeed have seizures… Enough to identify a focal area (Left Parietal). He was started on Keppra. The two day EEG is not even needed to confirm, no doubt about it he has Epilepsy.
  I was so mad that yet again a child was overlooked, ignored and medically neglected by Physicians.
I am so grateful that this one listened ..

and confirmed that yes, he did need to be sleeping to get an accurate EEG. I am so upset, that he has suffered needlessly because that Pediatrician would not listen. I do not have all the details yet, but his MRI was okay. He does have dilated blood vessels in the top part of his brain and there are blotches in them. I don’t know what this means, but it is recommended that he have a follow up MRI. The neuro said that this doesn’t have anything to do with his seizures and is not the cause of them.

I have a hard time facing and getting through the fear that Brett has the same thing as Brynn and where this will go. I have already lost precious pieces of one little boy
I only get to see a little sparkle of the boy he once was randomly over days, weeks and months…

Brynnon 2009

Like glitter falling….
Pieces of him disappear….

The winds of seizures….
Just take his sparkles away…. 
They steal his memories and they steal his laughter…

Brynn’s seizure count by the 17th was 16, almost his whole total August seizure count.
We have  just raised Brynn’s Onfi to his max. On to the next drug once this honeymoon phases out as he is now maxed out on all three drugs again  seizure count by the 17th was 16, almost his whole August seizure count in mid month. I know this will get easier over time, just harder with Brett. I didn’t know anything about seizures or Epilepsy with Brynn. Now I not only know, I also know

what can happen. I can’t change it, I can only accept it is what it is… We will fight this Epilepsy Monster… as we reach out for the obvious answers… Why Brett and Brynn? Is this Epilepsy monster waiting in the shadows to touch another of my precious children? Where did it come from and will it be passed on by our other children or them? I layed in bed one night some time ago and watched as a seizure started.

…No panic, just prayer… It occurred to me at that moment that a seizure is like a storm. It’s like lightening in the brain causing the seizures. So I prayed “Peace Be Still.” When I heard the song “Praise You in the storm by: Casting Crowns recently… That song took on a whole new meaning. I will praise Him in the storm… That is my Epilepsy theme song now! I will dance in the hallway while waiting for the door to open… Trying not to fear what “could” be and accepting what is at the present moment.

Brett Epilepsy Alert Band 9/25/13

                 ………….. We NEED A CURE!…………..

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