Friday, May 22, 2009

Bennett's Story Part 5: Acthar the Terrible

It was suggested to me recently that I try to organize as much of Bennett's story as I can, try to put the last 3 months into some kind of perspective. I am going to post this here now and add to it as there is time. I will link up on the side of the blog main page so that people can access it who want to and I will get it finished as quickly as I can for anyone needing or wanting to see the chronology of Bennett's condition.

Bennett's Story Part 1: Ahead of His Time

Bennett's Story Part 2: The Calm Before

Bennett's Story Part 3: Shit? Meet the Fan

Bennett's Story Part 4: The Truth is IN There

Bennett's Story Part 5: Acthar the Terrible

Bennett's Story Part 6: Road to Nowhere?


After decompressing for a few days, and talking things over with the insurance company, each other, family and doing as much research as we could, Jennifer and I made the decision to re-admit Bennett to the hospital to begin treatment for his Infantile Spasms using ACTH.

Why go back to the hospital? Well, they have to give him the first couple of shots, and teach you how to give the shots. ACTH is administered via needle. I've written a lot about ACTH and the process of getting Bennett this treatment before, so why re-write what I already have written?

Get the LOST flash-back/flash-forward music queues ready!

From March 10th, 2 Days Prior to this Hospital Visit
Anyway, the ACTH...dangerous and super duper expensive. To the tune of 100 grand for the dose cycle. So some insurance things had to be investigated while we are home from the hospital. The Prednisone was a random hope in hell...probably not likely to help but it can in some cases, so we were trying to get it sorted out with the insurance company even from the moment we came home just in case he needed to try to take the heavier stuff.

See the drug is SO fuckin' scarce because the condition is SO rare that a) the inhuman freaks that own the drug company that create it can actually live with themselves by charging 100K for it and b) if you don't have insurance approval or a check I guess, they will not ship the medicine to the hospital that requests it. Nice, huh?

Anyway, our insurance company is going to cover it...almost. Not all of it, there will be a co-pay of about 4500-5000 dollars, but another company, a group known as NORD, or the National Organization for Rare Disorders, has promised the drug company that they will cover the 5000 dollars on our behalf (assuming we meet with their criteria which I think we do). That letter of intent and the letter from our insurance company was enough for the drug company to release the medication. It is being shipped overnight to the Children's Hospital here in Columbus. Should arrive tomorrow by 10 AM.

I think Thursday we will have to re-admit Bennett to the hospital for a couple of days. The ACTH is injection-based, so they have to be sure we know how to administer the injections. There are serious, SERIOUS health risks to Bennett that we have to be trained to look for and we have to be trained to regularly check his vital signs and so on and so on. And they have to keep a close eye on him in the beginning of all this as well.

And the real kicker? This may not even work.

Queue LOST-flashback style music...of course it didn't work, but I have some thoughts on that later...but I wrote more about this second hospital visit when we got back.

From March 14th, the Day After We Came Home...
Jen, Bennett and I went to Children's Hospital at around 10AM on Thursday to get everything set up to begin the next phase in trying to fix what ails him. Unfortunately, we found out around 12 that he would have to undergo another long term EEG. He hates getting hooked up to the leads, and who wouldn't, but to also keep them on for 14+ hours? Crap.

So he had that done, and then on Thursday night they gave him the first injection of the ACTH. Well, actually Jen gave him the injection while I held him down. She did great. For a woman that has been out of nursing with actual patients in a hospital for at least 5 years she handled the needle like a crack addict. He took the shot as he always does...with strength. The kid has that in spades.

2 more injections on Friday, and we came home from the hospital Friday night. It was super weird driving with $50,000.00 worth of medication in the trunk. Unreal is a better word than weird I think.

Now it's Saturday, another two injections today. He took them well, Jen delivers them great. His vital signs are OK, no spikes in blood pressure but definitely an increase. We have monitors here at the house to check him throughout the day. We check his urine for glucose, save a daily stool sample for analysis though I am not exactly sure what that one is for.

His appetite is high, as we expected, he is more agitated, more difficult to console. We expected that. He hasn't started to swell much like they say he might from the steroids. We're wondering when that will start.

And as for the seizures? No real changes.

We don't really know and neither do the doctors a time frame as to when we might see them stop. I mean, there are certainly protocols for how long he stays on the meds if they are working and how soon to take him off if they do not work for him, but we are talking about a window of a couple of weeks minimum as far as determining whether they might work for him.

It isn't like the movies, where the medicine goes in, the patient opens his or her eyes, blinks at everybody in the room and smiles and everyone breathes a sigh of relief. Like I said before, life just doesn't work like that. I just wish it did.

OK, no more flashbacks, we're back to present day writing.

Bennett was on ACTH for a while, but not THAT long. He wasn't on it long enough to have any of the serious complications that some kids can have, the blood pressure issues, the enlargement of the heart, weight gain and the rest. He did gain some weight, but he lost it pretty fast too.

Check it...two weeks PRIOR to taking the ACTH...

Then after being on ACTH a couple of weeks...

I didn't write as much about how truly pissed off and stressed out it made me that nobody could actually TELL me how long it is supposed to take, or how do you know the ACTH is working and all that. Truth is, looking back (not that far either) I get it...nobody really knows, it's all just a big crap shoot anyway, this disorder. So why tell me anything when even THEY don't know?

Having said that in an attempt to try and be understanding of the human element, there were still just things that never quite added up when the Neurology department was handling the bulk of Bennett's care.

By around March 23 the decision is made to add Topamax to Bennett’s medication schedule, and I was getting the feeling that they (the Neurologists) were not thinking that ACTH was going to be what fixed Bennett up. Of course, nobody would SAY or ADMIT that they thought ACTH was a failure yet. He was on a slowly DECREASING dose of the ACTH, and then, on March 26, for a reason we still aren't totally 100% sure on, a decision is made by Dr. Neurologist #2 to take the dose back up. OK, so we make that happen. There is no change in the seizure activity, at least, no significant change.

Never made sense to me...maybe he wasn't getting a high enough dose? Nobody would give me a satisfactory answer on that. I was completely baffled and still am.

But then, on April 3, I get even MORE confused. A new decision is made by Dr. Neurologist #2 to initiate an extremely fast wean off of the ACTH, based on a research article she read. That's what we were told. So instead of the slower weaning, it became an extremely fast wean that ended in around, what...2 or 3 weeks?

God only knows what the reason was...and I mean that. GOD ONLY KNOWS. Because I sure as shit don't know, and the doctors at the hospital who made that decision sure as shit didn't explain it to me, so who knows if THEY even knew for sure?

I only know three things with absolute certainty by this point.

1. The Neurologists at the hospital have communication problems, with each other and with their patients.

2. ACTH cost more than $100,000 and FAILED. That's 100 grand that counts against Bennett's lifetime maximum, that he can never get back, for a drug that did little more than make him eat like a maniac for a month. (Not to mention the bill for $81,000.00 that the hospital sent the insurance company for the ONE NIGHT STAY in the hospital. My theory? They had to buy the vial, at 23 grand, gave Bennett three shots with it and tossed the rest. BUT EIGHTY-ONE THOUSAND DOLLARS FOR A DAY AND A HALF?)

3. The people who run/own Questcor Pharmaceuticals, Inc. (the ONLY drug company who actually makes this type of ACTH) barely even qualify to be called Human. To bail themselves out of a financial jam they caused for themselves, they raised the price from around $1600.00 (US) a vial to over 23 THOUSAND DOLLARS (US) A VIAL. These so-called 'people' should be treated with the same level of contempt as any of the pigs at AIG. Yet if you ask anybody on the street they have never heard of Questcor. That's a real crime. These fuckers make a ton of dough selling false hope to the parents of a lot of sick kids.

Some good reading about the whole situation can be found here...

Questcor Make You Sick Article #1
Questcor Make You Sick Article #2
Questcor Make You Sick Article #3

...and there's lots more, but waddya gonna do? It is a SHIT situation that not enough people know about or care enough about to fix. Certainly not the people who CAN make a difference. And frankly? Us parents who have children with these issues are too busy fighting the Infantile Spasms or the conditions that cause them to fight City Hall, too.

Bottom line? It's wrong and needs to change, like a lot of things in the world that should be changed and never are. Always reminds me of a speech made by Commander Adama in the first episode of the new Battlestar Galactica...

...But we never answered the question, why? Why are we as a people worth saving? We still commit murder because of greed, spite, jealousy. And we still visit all of our sins upon our children. We refuse to accept the responsibility for anything that we've done. Like we did with the Cylons. We decided to play God, create Life. When that life turned against us, we comforted ourselves in the knowledge that it really wasn't our fault. Not really. You cannot play God then wash your hands of the things that you've created. Sooner or later, the day comes when you can't hide from the things that you've done anymore.

I just love that last part. I use it all the time...Sooner or later, the day comes when you can't hide from the things that you've done anymore.


  1. So say we all.

    You are one tough father Ken Lilly! I admire you.

    (Man I miss BG on Friday nights!!)

  2. This page of the story gives me more strength and resilience of why European Health systems are way way way way way way way way better than the american one.

    A) Insurance. No one covers the hospital costs, and if you can't, you're doomed. You can literally die outside a hospital door just because your insurance isn't good enough. That's the lowest form of inhumanity.
    B) $81K for a night at the hospital. My uncle had a severe flu case and stayed for 3 MONTHS and all we paid was the ambulance fee (€20-that's less than $20) and a monthly hospital fee of €11 (yes, less than $10).
    C) Insurance coverage of drug cost. Here, EVERYONE gets the common drugs FOR FREE (like ones for blood pressure, anxiety, diet regulations, migraines/throat sores/body aches) since they pay insurance mmoney. No additional costs whatsoever. For rarer drugs, you cover 20% of the cost and the insurance+hospital covers the rest.
    D) Don't let me even start with hospital procedures costs. And YES, MRI and ERG are €30 each, sometimes less, if you have a medium insurance. With full benefits insurance, those hospital tests ARE FREE.

    The american system is like BEGGING you to not have any kind of health problems or you're into tough luck. No care for the normal human being, let alone one with a rare disorder like your case. Everytime I read about similar cases, I feel sympathy and pity knowing that if you lived in Europe, things would have been so much better and lighter for you.

    Have strength.


You Are a Beautiful Blank Page...Do You Have a Great Pencil?

Christmas is over. That sound you hear is my sigh of relief. The tree is not actually down, as the opening image suggests. That was a t...