>> Wednesday, May 14, 2014
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.
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.