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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Emotional Inventory



Every now and again it is good for the soul to do a little emotional inventory. In the church years ago, I was taught that emotions are just feelings and not to pay any attention to them. I have learned over the years, it is imperative that you do pay attention to them. The emotions are so often overlooked in the run for perfection feeding the intellect and the will of a person. If you leave emotions out of the equation, you end up taking action without evaluating how you feel about it. We may want to do something, the will says yes, but the emotions are there saying no… 

Please don’t! Tonight, I find myself thinking about so many different things. I find myself feeling all sorts of emotions. Brett went for his first neurologist visit today. He will go in a few weeks for a Video EEG & MRI. It is a strong possibility that he is indeed having seizures. He will return for an extended 48 hour Video EEG as soon as the can get the insurance approval and the appointment scheduled. His answers will come, and there are a lot of emotions that I am feeling about it all… Seems a bit overwhelming at the moment, I have so many other emotions to deal with at the same time. Gosh, it makes me so mad… Just the thought that seizures may have 


been overlooked by medical professionals once again, now in Brett is taking it’s toll on my sanity. We have been through so much these past few years in this Epilepsy battle. I refuse to give up hope, I figure worst case scenario if Brett is diagnosed with Epilepsy and is similar in any way to Brynn… Perhaps it will lead to answers as to WHY and prayerfully better solutions.

 So, my emotional inventory is being worked out as I type this. We will get through this valley as all the others that we have been forced through. Not only will we get through, but we will get through and come out stronger than ever before in faith and willingness to fight. I am a human being… I get mad, I cry and I laugh for lack of anything else in good times and bad. One thing I try to do is hold on, knowing that God would never give us more than we can handle. I just know that there is a reason and a purpose for all things, and all things work together for good in those that love God. Brynn’s seizure count for August 22, much better than last August bringing 65! Keep the faith and try, try, try to stay positive! I will post an update when  I have more answers!