The things people say

>> Sunday, November 15, 2015

Get ready to be insulted, angry and sad. If you aren't, go away and come back when you grow a heart.

First, let's cover the Bugster: Bug is doing well. He is almost having NO seizures during the waking hours still. In the last week we have seen less than 3 total during the day. But the night is back to being the enemy. He is happy, spinning and smiling and jumping. No idea what the jumping is about but I just hope he doesn't break a foot. He IS doing something he hasn't done much of since he was two: climbing.

He will climb on to the table, the desk, the kitchen counter and just sit there. While it's cute, it can also be dangerous should he seize. Tonight, he climbed on the kitchen counter and unscrewed a light bulb. Huh? Not sure why, maybe it was too bright. For whatever reason, he is expanding his repertoire and I like it.

Also tonight, I was getting caught up on a meeting that I couldn't attend. For the last year, the EAU has been meeting with school, state, and government officials to work on the proper seizure protocol that must be implemented statewide in all schools. This is a big deal and critical to the safety of students. Right now, response to ANY seizure by school staff is based on dangerous and reckless policies that have resulted in responses such as: Calling 911 with any seizure and doing nothing while the student seizes.  Or making all the students leave the classroom so they don't have to witness the seizure, because that could be traumatic. Instead they leave the seizing student on the floor, alone.  Or even administering untrained first aid and putting objects into the seizing students mouth. These discriminatory, dismissive and in some cases dangerous responses elicited a committee creation to address the safety issues. So, the Department of Health got the right people to the table to make these decisions and standardize the response to a seizure. Hooray! It seems, however, not all of us are keeping our eye on the health of the student having the seizure. Some of the things they are asking to be put on the form are baffling, unless you take into account that most of the people asking for the changes have never seen ONE seizure, let alone the thousands that the Association members present have seen. So, one would think that the people that are the most qualified are the people that have the most experience caring for children with seizures and would be considered the go-to experts. And who better than parents that live daily with the condition? But no, we are dismissed as, well....parents. We are not treated as part of the solution but people to manage away. They are projecting: let's just manage the people and not actually solve the problem. We have been dancing around bureaucratically for over a year with NOTHING to show for it. When we agree to move forward the next meeting, the bureaucratic approach throws it all out again. Frustration beyond frustration.

What set me off was this statement relayed to me:

You need to think about how the nurses feel. They are afraid, This is real fear about losing their license.

My GUT response: Are you effing kidding me? *WE* need to think about the NURSES? We shouldn't think about the student and the danger to their life? We should think about the people that have blamed others for the breakdown in the process, while they stifle the process? The EAU and the Department of Health have been the ones driving it forward! We should think about the people that haven't been to the last two meetings? The ONLY people we SHOULD be thinking about when we are in that room together are the students with epilepsy. Period. ALL ego and fear should be checked at the door, we should focus on facts and the compassion to help!

In the State of Utah, school Districts have the discretion to refuse, get that...REFUSE to administer any rescue medication (and in some they can refuse daily antiepileptic doctor-prescribed medication) for seizures. They can say: I know your doctor said he/she needs it, but...we disagree so good luck. A District can override a doctor. It appears 'first do no harm' applies to the doctor, not the school. A nurse can also override a doctor, a school principal, with NO medical training whatsoever, can override a doctor. Utah State Office of Risk Management has said: There is no reason why you can not administer or delegate the administration and not feel secure in doing so.

The nurses present said: We don't believe you. Check lawyers off of the 'allowed to override' list.

Our Executive Director left one meeting and said: "Wow, do I feel devalued. As a person with epilepsy, I am sad to know what they REALLY thought of me when I was in school".

It cut me to the core. We have students that have to stay home because they require medications that Districts are scared of. I call bullshit. Why? Because they have NO issue administering the Schedule 2 drug Ritalin (and its cohort of similar medications), while simultaneously saying our schedule 4 drug is scary. After they asked for and got a letter from the Director of Pediatric Neurology for Primary Children's Hospital stating that Versed is safe to administer, they still are telling legislators that it isn't. Where I come from, boys and girls, that's called fibbin'. We are being ignored and dismissed from every angle.  Even other epilepsy groups in Utah are backing the nurse's stance and calling our organization the problem. If you want us to be the problem, you will be waiting a long time. And, if I am, personally, crass or arrogant, then that's what YOU want me to be, because I am advocating for the student with epilepsy. Plain and simple. It's an ADA compliant condition and they have RIGHT to an education.

It's THIS simple: If you have a 504 or Health Care Plan that details the medication that should be delivered to the student, how and when it should be delivered, then do it. Parent's have gone through the Health Care Plan process to ensure their child is safe and according to FEDERAL law, you do NOT have the right to arbitrarily change it. We make accommodations for students with diabetes and allergies but we tell student with seizures they have to stay home.

Does that piss off anyone else or is it just me?


Very aware.

>> Wednesday, November 11, 2015

The title is misleading. Bug is not very aware, although he is doing a lot better with focus and engagement, I mean that I am too aware of epilepsy.

Last night was horrible. 7 seizures before 12:30am. At 11:20 we gave him a clonazepam to see if we could calm it down. He had had 4 by that time and another 3 in the hour it took the meds to kick in and then at 1:00am he slept peacefully. I know this because he slept next to me for the next 8 hours. HE got 5 hours with no seizures and then 4 more before he woke all the way up and got his morning meds.

The daytime seizures are so few now. If he has 3 during the day it's a bad day, he usually has 0-1, it's the nighttime crap that needs to stop.

I called to get him an appointment to see a new Neurologist here, in Chicago, and left a message. Until we get an appointment, Glenn and I have decided to give him the clonazepam nightly to try to get him some relief.

This is a difficult decision for me. It took us so long to wean him from that medication and now to have to put him back on it at night...I know that a lot of people with nocturnal seizures take clonazepam at night. I should be OK with it because it IS helping him sleep without seizing but I'm not. We have to do it, and I know this, I do, but damn it all...

This morning, he is happy. Chirping, spinning and engaging. I can say: Hey! And he will turn and look at me and smile when I smile. That's huge for him. HUGE. We have been so largely ignored for the majority of his life it's really great to be back in his world. OUR world. It's good.


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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