Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I am a little annoyed right now about the whole fact of this study. Lily had a seizure this morning before she got on the school bus and it made her tired and spacey. She didn’t have those until we weaned her from the Vigabitrine and I don’t think her being on Topamax only is a good drug therapy for her. It really upsets me.
This is my reason for being pissed. Her Dr. really swayed us in the direction towards this study, swearing this med will help Lily. No mentions of a placebo option until we were already balls deep in paperwork and a commitment had been made. The Dr. is the head of the study so really this is for him. We could have easily gotten the drug from Canada as we got the Vigabitrine, and tried it and seen if it worked. But he said we would all be helping each other out if we did the study. The drug would be free, which honestly is a big draw, meds out of the country, not covered by insurance, obviously. And we would be getting a drug kids need FDA approved AND Lily would get better. But no one said, well if she gets the placebo, you are wasting your freaking time. And that is bull to me.
Now I am having to go to Phoenix every other Monday or Tuesday, Lily has to sit on a toilet for hours to get some pee out of her, it leaves her bum red and sore and me annoyed. She has to have her blood drawn every two weeks. She is off a med that helped her and now suffering from new seizures. It all seems wrong. I get placebo in adults, but freaking non verbal kids who are as I am told severely mentally retarded. Like Lily can pretend to not have a seizure or pretend to have one b/c her mind thinks she is on a med or not. Bull.
This is all bull and I am getting more pissed as time goes on. Time wasted.
Plus the contract I signed said we will be paid $35 a visit for our “time” more like for the ridiculous amount of gas I am wasting. But whatever. Monday will be our 9th visit with out one dollar to show for it.
I am calling bull and you better believe I will make my feelings known this coming Monday. You better believe it.
I love it when they say, is she better, same or worse. Worse biotch… this study sucks. And they look at me and say, tell me how you really feel.
Sigh…. just so annoying. I think we need to do a count down for this damn thing.

2 thoughts on “Annoyance

  1. Mete says:

    Glad to see you’ve moved the journal – it makes commenting so much easier!I’m amazed by how bad this study is going for you. We backed out of study for our son recently because of similar concerns. He had to wean off a med (clonazepam) to be in it, but by once he was off he was miserable. Muscle spasms, irritability, and some new seizure activity. We decided to back out before the study started and go back on his usual dose, but the doctors really tried to convince us to stay in anyway. They weren’t very concerned about his withdrawal symptoms and just suggested we try other meds for tone. I like our doctors, but they must have some incentive ($$$) to push the studies as hard as they do.And the pity stares? HATE them myself. They don’t realize how lucky I am to be Ethan’s mom!!Best of luck that this is over soon and Lily is back to fewer seizures. She’s a cutie!

  2. Tiffany says:

    Yeah! I am so happy that I get to comment!! That stinks for Lily that the study isn’t going well. How unfair to her. That is so frustrating. I will have to say at the end of that post I was laughing so hard. The biotch part was so funny. Maybe it’s because I know you and I can imagine you being so mad at those people! I would be freaking out!!!!!! I would of quit already! Tell them to give you your money!

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