After the anger.

>> Thursday, May 15, 2014

Yesterday's rant needs a follow-up.

And follow-up there was.

Bug had a seizure that threw him into the kitchen counter. The bad part (aside from the seizure itself forcing his head onto the hard counter) is that, in this house, the counters are unfinished. They are not rounded or blunted but rough and when he hits it, it scrapes his head. So this time...big goose egg with patches of scratches.

IT SUCKED. And it stayed large all day. Hoping that it reabsorbs somewhat tonight but not looking good so far.

So that's the seizure follow-up now for the 'other'.

The Department of Health sent us over their rules. Mostly...good. Only ONE issue that we had and we are addressing that. So, no matter how much headache it is to them, they are doing it right and it will be great for anyone else that petitions to expand the program.

Those few Doctors that are saying: Not bad enough...are few indeed but they are also misunderstanding the criteria. The ones that supported us, still support us and even more have come forward. It's very exciting and I need to stress that. We have two new Doctors that have said: I support this and would love to be involved. And they are NOT paid by PCH so that's a great thing.

I need to point out to my families: Stay the course! The rules will be public soon and everyone can provide input, and our Doctors that are suspicious, or that have jumped to conclusions, can see the due diligence that is in place. Yes, even for something more harmless than an aspirin. So even though you are hearing NO now, they are wrong and hopefully, they will realize it in the next few weeks, if they don't, there are Doctors out there that DO understand the law and the benefits of the Oil.

A BIG change is coming not just for Cannabis in Utah but also for epilepsy in general. I say to the medical professionals: Keep up or you will find yourself doing more crossword puzzles and less unlocking the mysteries of my child's seizures. Was that too subtle? Try this:

Read the paperwork or you're fired.

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Your job sucks? Really?

>> Wednesday, May 14, 2014

This morning, Bug slept in. It happens. Not often, but it does happen. We have cameras in his room, Tay's room, the living room, a few places, so we can track him. This time, the movement alert in his room took a long time to route to my email. So I heard the: THUD, before I received the email that he was moving around.

I ran upstairs to find him in full convulsion. Tonic/Clonic, gagging and moaning.

Once I knew he was coming out of it, I began to get really angry.

Lately we have heard that Neurologists are telling their patients that they can't have access to the oil because their condition isn't severe enough. The little girl that isn't 'severe enough' is ONLY 6! She is having Complex Partial seizures multiple times a day, but they aren't showing up on EEG. Doctor's have seen her have them but she 'isn't bad enough'. So...we are supposed to wait until she is? Because she will get there and we all know she will.

I watched my boy slip away from me. I watched him stop dancing, stop playing with his sister, shaking hand with people and stop even LOOKING at people. I watched him struggle to walk, struggle to smile and forget who I am. THAT is how bad she has to be? That lively, happy, energetic little girl has to drool, get 8 sets of stitches in a year, her Mother has to be looked at sideways when she takes her into the ER to get those stitches, she has to lose all that she was, so she can try something more harmless than WATER?

And then we hear how some Doctors and the Utah Department of Health are really struggling with this.

REALLY?

Struggling with WHAT exactly?

Struggling with repressing the fear that when you tuck your child into bed, you will be burying him a few days later? Repressing that feeling so you can just eat breakfast without crying. Struggling with opening his mouth and making him swallow something you just signed a waiver saying it's OK if it makes him blind? Or kills him outright? Struggling with finding a babysitter so you can go out with your husband that you haven't been ALONE WITH in over 5 years only to realize that you don't trust most babysitters to take care of him the way you do, to make sure he is safe? Relying on your family to watch him, your 70 year old parents who would do ANYTHING for him and go to bed, tired and hurting so they can spend what precious time may be left. Struggling with getting punched in the face, nose broken, chin bruised because of myoclonic seizures while he was holding a plastic toy. Struggling with feeling like a failure because you don't give your other children the same amount of time that you do your child with epilepsy? Struggling with your new baby's first word being seizure. Struggling with watching him slowly slip away and die for NO KNOWN REASON?

Until you struggle with those things, I really don't want to hear about how tough YOUR job is, I want you to DO your job so my child doesn't die.

And Doctor, do NOT tell my Mother's and Father's they have to wait until their child is as bad as my child. It's this damn simple, get ready, THIS SIMPLE: If the person is STILL having seizures and they have tried 3 treatments that have not worked sufficiently, sign the damn form and let them try it. DO NOT try to quantify the severity of their condition when just ONE seizure can kill them.

And the next time you have a meeting...invite me. Invite a person WITH EPILEPSY to talk about THEIR treatment options, because until you do THAT, you are not actually serving the population you claim to be protecting. You are playing God. And...we don't play that way.

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How long is 4 minutes?

>> Monday, May 5, 2014

In our world 4 minutes is life-threatening. And Bug, who had been doing so well since we removed the Clonazepam, has been having one or two big T/C's every so often the last few weeks. Last night was the biggest yet.

It sucked.

He was sleeping peacefully next to me after a bath, and I was getting ready to carry him upstairs when he locked up. Hard. He grimaced, he moaned as he was trying to fight it and then, he started convulsing and not making a sound other than gasping.

I haven't seen one like that in a very long time. While I hated it, I have to ask: Is one big one better or worse than 5 smaller ones?

Hope is pretty close to gone at this moment in time, who knows, maybe we will find some later this year, but right now...

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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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