ESES

>> 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? :(


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All about the timing

>> Thursday, September 29, 2016

Today this video came across my Facebook feed:

http://youtu.be/tmWfJR4KrDI

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 but...one has to try to make miracles and not just sit and wait for them to happen.

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Bad year...go away

>> Thursday, May 26, 2016

I haven't blogged for a very long time.

Because Dad died.

In December he came for Christmas, by January he had a cancer diagnosis and began chemo and was dead mid-March. Our world turned upside down. Again. I miss him more than I have ever missed anyone before. He was a great man. A great man that everyone knew but no one ever knew. That helped everyone yet no one helped him because he wouldn't ask. He was a quiet man with a loud voice, at times. And he loved his children, grandchildren and great grandchildren. My heart is broken still and while Dad was dying...

Bug got worse. He developed gagging episodes. We talked to his Doctor and suspected new seizure types but he eventually stopped responding to rescue meds. Rescue meds at triple the dose still did not work. It was a very rough time. So we had another option for the cause of the gagging and we decided to treat him with Zantac. It helped. Nearly immediately. And his nightly seizures seemed to stop. For almost a week we had no gagging and only four seizures.

Until today.

Today he had 4 seizures in 4 hours. And it made me miss my Dad even more. Bug is better now, seemingly happy and energetic, but for how long? I hate waiting for that show to drop.

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All In.

>> Friday, January 29, 2016

What do you do when you hear of an injustice?

Bug is doing well, he is happy and playful and not having more than 2 seizures in any given day and almost ALWAYS sleep dependant. No really big ugly tonic/clonics so we are pretty pleased. He also saw his new Doctor.

And I warned him about us, about how we are tenacious but do not require hand-holding, how we are always researching but also ruling out before we present an idea. He was cool with it and we were cool with him. We are working on getting Bug going with IVIg again, which makes me excited and sick at the same time. Bug gets so sick after the treatment but then he doesn't seize so is it worth it? We will see how that goes but we expect it to go well, even with the puking that may follow.

So what of this injustice?

In 2006 the Utah State Legislature passed SB8: Care of Students with Diabetes in School. It passed all committees unanimously and then both the Senate and the House. It is a smart bill, it is a good bill that was supported universally. We took this bill and changed Glucagon to Doctor-Prescribed Rescue Medication to ensure that students with epilepsy can now get blanket access to their medications no matter in what Utah District they reside.

And no one will touch it.

Now, we have other avenues we are using to ensure that the student with a Health Care Plan gets the medications they need, and we have great hope that will help, but there is ONE thing that makes me shake with anger.

The bill that is CURRENTLY sitting in rules that is a bad bill, is an admitted bad bill by its own sponsor. What do you do when you hear: I know it's not ADA compliant and there will be a lawsuit and it will cost millions of dollars and a decade of time but if that what has to happen then that's what has to happen. What do you do when you hear that the student with diabetes gets their medication but the student with epilepsy should 'wait for EMS to come because it's not like they know what is happening while they are seizing'? Yes, that is a DIRECT quote, darn near verbatim. Made by a 'professional' tasked with ensuring the safety of these children.  A 'professional' in a position to exert great pressure on anyone daring to support an effort to make this right, to stand in support of the ADA.

What do you do when you hear that YOUR child is NOT as important as the Doctor Group getting what they want finally at the expense of children? This same group supported SB8, and didn't support Charlee's Law. It seems they don't like children with epilepsy, that they have something against children having seizures being helped in a timely manner and receiving an education. There is no other conclusion to draw. If you have allergies or diabetes then we see and recognize your need but if you have epilepsy you will have to sue us to get the same services.

It's sickening and I won't take it anymore. I am giving my notice, I am ALL IN.

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
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 SeizureTracker.com 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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