Anyone who says differently is selling something.

So here’s what I’ve been up to for the past two weeks.

Questcor Finds Profits, at $28,000 a Vial (from 2012)

Nice sum up, NYT:

The most important use of Acthar has been to treat infantile spasms, also known as West syndrome, a rare, sometimes fatal epileptic disorder that generally strikes before the age of 1.

Baby E’s infantile spasms/West Syndrome is caused by his PVL. We’re waiting to see how the ACTH does with him. We started it this week. Currently, we’re giving him 2 injections per day, about 12 hours apart. We’re in Children’s Hospital in Denver, due to some serious misdirective bullshit and unavailability from our local docs. That’s the fun price of living in the sticks, I guess. I’m REALLY looking forward to the forthcoming insurance battle.

It’s painful to write about this here, or anywhere. Mostly I want to do so because when I search for this stuff, I find some blogs, but not a ton. Am thinking about creating a separate blog devoted to Baby E that I can link to here. But not sure if that won’t be too much of a pain, and also a weird way to compartmentalize something that is going to be part of my daily life. After all, I write about my ulcerative colitis here, and yet this is definitely not a UC-only blog. So, I’m not sure yet what I”m going to do. Kind of like with Baby E, and with myself.


2 thoughts on “Anyone who says differently is selling something.

  1. Oh, I’m so sorry to hear this. I think about you and Baby E all the time; it is so unfair that you’ve had to struggle so much. I wish I could do something to help.

    Definitely write about it, here or elsewhere, public or private. For me, I’ve found that writing really helps to clarify my thoughts and dull the panic and woe. If you’ll be writing online, I’d vote for just one blog for everything; life is messy and topics overlap, and when I’ve kept different blogs it was tough to keep each post “on topic” or to decide which blog to post it to.


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