>> Friday, September 30, 2016

Electrical Status Epilepticus of Sleep looks like this:

Hell of alot of seizures isn't it? All while asleep. The few hours of peace are when he is awake. The seizures tire him out so he sleeps a lot which causes more seizures. Viscous cycle. Lately, he has not been responding too well to rescue medications and we can speculate what that means but speculation does not lead to treatment. So while I wait for his appointment to be confirmed, I use the Quick Capture every 10 minutes and hope his oxygen stays stable. If it weren't, he would be in the ER, but in the ER they knock him out with phenobarbital and he is unconscious for days on end just to calm his brain down. With ESES...will it calm down while he is unconscious? Who knows really and it's a risk of more damage than good...remember when he almost died because of too much pheno? Ya, me too, let's not do that again.

So we patiently wait for this cycle to improve and if it doesn't....he goes to the ER. He has until tomorrow and then we hope for the best and turn him over to the Emergency Room and I mind my p's and q's to not strangle anyone for arguing about NO EEG and Ativan.

He's a tough kid but how tough? :(


All about the timing

>> Thursday, September 29, 2016

Today this video came across my Facebook feed:

I began to tear up at her response, at his joy, and the school cheering for them both. Genuine. Touching. Love.

And then I began to think about Bug. I had just given him his SECOND dose of rescue medication in 12 hours and the tears went from 'how touching' to 'it will never be'.

The grief sets in again. With the renewed possibility of helping Bug, the seizures being OFF THE HOOK while he is asleep are even more difficult to deal with on an emotional and physical level.  He will get to visit Johns Hopkins and he will, hopefully, get the help he has been waiting for.

I have created a list of things to check for our little man. It reads:

ESES – Seizures almost exclusively sleep-dependent.
            FRa – Folate Reductase Autoantibody – Immunology
Ears – has not had a detailed MRI of his inner ear and with KBG syndrome it is of GREAT concern that a malformation was missed since he CAN hear.
Stomach – he needs a scope. With KBG he is more likely to have stomach issues and with the gagging episodes that started last year, they may or may not be attributed to the Epidiolex.
Teeth – Glenn has to be sedated for exams and since his broken jaw, he has not seen a Dentist.
Orthopedics – Glenn’s seizures may not be the sole cause of the tightness in his ankles but Botox was recommended in Utah. With KBG we also need to look at his hips and ribs.

Full body MRI?

I am reminded with each seizure that I have let him down so many times I can't begin to count. I can say: The Doctors should have...but it still comes down to me making it happen. So I will make it happen and maybe...this video could be of Bug smiling because a sweet girl asks HIM to dance. Odds are not good that will ever happen has to try to make miracles and not just sit and wait for them to happen.


What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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