Friday, April 17, 2009

Some Random Friday Ramblings

I'm feeling very random today.

Risky Business

In the old days, if you told me that my wife and two kids were leaving Friday night to go visit her sister for the entire weekend, I'd be pulling out my tighty-whities, Ray-Bans and button down shirt and digging around for my Bob Seger CD's.

These days? I'm not the same man. So while I might have before relished the idea of spending a weekend playing X-Box, sorting toys, watching movies where things get blown up, people curse and get naked with each other and eating nothing but pizza for every single meal, now I am feeling only sadness at the thought of being away from my family for 2 days, particularly Bennett.

Weird huh? Well, I have tons of cleaning to do, gonna try and finally come up with a solution to this floor in the kitchen. It's just a horrible tile, we should replace it eventually. We had actually talked about a deck this year finally, but until we know how much the whole Bennett thing is gonna take out of pocket for us this year we have to curb any spending like that. Might need to come up with a plan on the yard work too, we really need to beautify the outside some more, our neighbors are really making us feel like we suck.

Madden as Hell

Well holy crap on a stick. John Madden is retiring.

Sunday Night Football was my favorite to watch lately, because I loved the team-up of Al Michaels and John Madden. But I guess at 73 the guy deserves it. I will say this, I'm happy with the replacement. If I would have picked anybody to put in there with Al it would be Chris Collinsworth. One of the best color men in the NFL.

The Epilepsy Storm

And so many people don’t even really know just how much it affects people worldwide. Sad really. But for those that care, this week's Newsweek magazine has a cover story on Epilepsy. The article here...

Newsweek Cover Story: A Storm in the Brain only part of the story. If you have access to a newsstand I suggest you pick it up. Amazing read. Sadly, no real mention of Infantile Spasms. That pissed me off. But what are ya gonna do? They weren't writing a book and they had to sort of narrow the field a little to generalized epilepsy, and there are HUNDREDS of types.

This statement in the article REALLY hits me where it hurts. I cringe every single time I read it.

"There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight."

A Grand Farewell

Today was the last day of Bennett's ACTH injections. The drug, a first line treatment for children with Infantile Spasms, failed, and he has been on a fast wean off of it for the past couple of weeks. I'm thrilled that he doesn't have to get any more shots. I just wish it had worked.

See this?

That's what a vial looks like. That ONE vial is $25,000 worth of medicine right there. He went through four vials. That's $100,000 dollars against his lifetime insurance maximum that we will NEVER get back. What a crime that a drug like that can be allowed by our government to be so jacked-up in price because the company making it is the only one who DOES make it is truly beyond my comprehension. But at least it's out of our lives now.

And not sticking needles in THIS little guy every day anymore?

I'll call THAT the win for this week that I said I was looking for. How's that for positive thinking?

Have a good weekend.


  1. YAY to the end of ACTH. Questcor is evil!

  2. And that's the irony of IS. Our kids have epilepsy...just not the sexy controllable so therefore talk-about-able kind.

    I know surgery is scary. I KNOW. God do I know. this world of meds with awful side effects that make seizures worse not better. Or diets that consist of starvation & raw butter on a spoon.

    Surgery is actually one of the options that we all deep down hope for. You know...if the meds & crazy diets fail. And I get the insane-ness of such a hope.

    (((((hugs)))))...btw I'm Italian we're huggy like that! *smile*


  3. How about I just "borrowed" (ok I'll admit it... stole) that very magazine from the pediatric opthamologist on tuesday. I haven't looked at it fully yet. Been in a very "stick my middle finger up at IS mood this week". I too was annoyed that there was no mention of IS or even myoclonics in general. Maybe a letter to the editor is in the works? Heck, I guess I just better be pleased they are even discussing epilepsy period.

    So happy the ACTH is done with. Spitting nails about how much it cost. Luckily for us we used it before it got that high. Hubby and I have often discussed it though.."how do you make that decision? your child is just diagnosed with a devastating condition, but for 100 Grand you can give him a treatment that may or may not work". Our insurance didn't cover a penny of it back when it was only 1500 a vial. That would really be a very difficult decision, especially since I know our insurance wouldn't have touched it since it wasn't FDA approved. Real hubby works at the hospital. Let's provide care for everybody that can't pay for it, but give our employees the crappiest insurance in the world. Ok I'll step down from my soap box now.

    Try to get some rest this weekend..sounds like you need it!!

  4. JSmith:
    They are evil and make AIG look like the Will Rogers Institute.

    Love the hugs, no worries. Yeah I hear exactly what you are saying. You hope that maybe surgery is that one answer, that fix amongst all fixes that will result in close to 100% results...but then if you DO get that as an option you get a whole new set of fears.

    Ah, well we all know the roller-coaster of parenthood is already steep enough with kids that have no conditions...add in something like this and you are on something that makes you wanna hurl before the ride has hardly started. :)

    It's got a great article about one of Obama's cabinet members who has a daughter with Epilepsy. Maybe in this super liberal administration we will see some real forward momentum in this disorder.

    I'd actually be happy to write that letter to the editor if you don't.

    ACTH would have been a tough call if our insurance had not covered most of it and NORD agreed to cover the co-pay. I do not know that I would have been able to pull the trigger...I would have moved ACTH to the back of the line and tried Vigabatrin or something else first.

    We actually haven't tried Vigabatrin yet, which gives me some comfort because it is a first line med still on the table. Not entirely sure why it is STILL on the table and the docs haven't kicked it into gear yet, but I am guessing because they are probably more convinced that Bennett will need surgery rather than fix the IS with drugs. I have no evidence of this, but it's what I (kind of sort of)think. Though I may want to try Vig, haven't decided.

  5. Worst case Vigabatrin will cost you $200 a month. You will know within weeks not months if it is going to work for Bennett. We never tried ACTH. They just didn't feel with the cortical dysplasia that any drugs would work. Andvthey were worried it would slow the recovery. I'll let you know how the surgery goes.

  6. Sinead...that is one of the things that REALLY troubles me about the whole thing. Doctors need to start coming up with some meeting of the minds. Why are my docs so hell bent on trying all kinds of meds rather than focusing on the fact that he has the FCD? Maddening.

  7. I had never seem what $25,000 looked like. And now I wish I hadn't. Because all it comes to mind are bad thoughts, not towards Bennett's situation or anything like that, but about a world that let a vial of liquid reach such a price.

    I really need to find another world to live in, this one's not cutting it anymore.


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