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)



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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