Tuesday, October 27, 2009

31 for 21: Psychological Limbo

"Hey Karyn, do you want to play a game that will be REALLY FUN (for us) and TERRIBLY PAINFUL (for you)? Oh come one, play. What do you say Karyn, you don't want to do this - yeah right, who would? But who cares that you don't really want to play, we are going to make you anyway - just because we can and because we want to. Get this, the game we are going to play is called psychological limbo. We just want to see how low you can go."

The above is what I am going through right now. Our family a pawn in someone else's game. I am really trying to leave the expletives out of this posting - but if you are not opposed to them - you can insert a long list of them right HERE.

Here is my experience - you are going along in your life, minding your own business, no huge problems - then the limbo bar is dropped - you find out that your daughter has Down syndrome. That isn't a biggie. In fact, that helped me. Ha ha - see you didn't get me - I still kept my courage and found meaning in this. You feel triumphant - except it doesn't end there. The bar is now dropped again - "Karyn, your husband got laid off of his job." Ok I can manage that. I will just pick up extra work now and he will stay at-home with Quinn. She will be more healthy that way, get more attention, we can manage that. See we are still triumphant! Woo hoo! Now the big one - the limbo bar drops - "You know these head drops you see, those are infantile spasms and we need to do treatment as soon as possible so they don't increase and she doesn't regress" - wow this is scary. This is a major play in the psychological limbo game; I am not sure I can go that low - but for my daughter, I will. Why did that have to happen, but for Quinn I will get through. Now on to the next round - we are in the hospital last week - another drop of the bar - "Sorry, she has a cold now and we can't do the injection we planned for an hour from now." And now the worst drop of the bar of them all (mainly because of the accumulation effect) - expecting to get this treatment started yesterday and it was not.

My random thoughts on this subject, as I am having such trouble focusing given my anger, sadness, you name it -

#1 We are home. Not in the hospital. Never in my life would I have thought I would be so upset by those two short sentences, but today I am. I have rearranged my schedule like any good parent would for their child to get treatment as soon as possible. That is not an easy task given all I have going on, but I did it because I FOLLOW THROUGH, AM RESPONSIBLE, AM COMPETENT, AND CARE. Unfortunately I can't say that others do that in their respective jobs. What is the hold up, you ask? Well the insurance has pre-approved the hospital stay, but not the ACTH treatment. Why would we need to go to the hospital if it wasn't for the ACTH? Sorry, but we aren't people who just like to hang out in hospitals for vacations. That is the most stupid thing I have ever heard.

#2 I have good insurance. I don't have crappy insurance - so why the heck is this happening? In fact, I am a state employee so I have the benefits that the conservative radio talk show hosts in our area go on and on about. I have heard them on the radio talking about how it is not fair that state employees have these type of benefits because the people in the private sector do not get them. IF MY BENEFITS ARE SO HOTTSIE TOTTSIE (see so far I am doing great not swearing) - then why the heck is this not approved already???!!!!

#3 Last week they went up to an hour before her injection to decide that they weren't going to do it because of Quinn's cough. Gee there wasn't pre-approval then, and they were going to do it. Why now all this hub bub (again avoiding swearing) about pre-approval? I asked that - the response I get - "Oh that is a good question, I don't have an answer." What? You expect me to be a sheep don't you and not ask a single question - you expect me to just go along with what you say and nod my head. Well you aren't going to get that here.

#4 I find out that the paperwork was faxed over for the pre-approval on Friday. Why Friday? You sent us home on Wednesday - remember I was the one with tears in my eyes who you assured that everything would be ok and set up for Monday? Recap - you told me on WEDNESDAY that it will be ALL SET UP for MONDAY (gee that day already passed because now it is Tuesday). Why wasn't this paperwork faxed on Wednesday? You know what, let's back up, why wasn't it faxed on MONDAY, OCTOBER 19 when you knew that this was the treatment we were going to do and planned to do up to an hour before it was planned to start.

#5 After the delay with ACTH last week, I asked the neurologist about the other option, Vigabitrin. He said that no, he still would rather go with the ACTH because it has better outcome with DS, and besides it would take three to five days to get in the Vigabitrin and we have to get this going as soon as possible. OK is it just me noticing that there is now a stupid delay that takes us out even longer than the three to five days? What about the immediacy of treatment? Was I the only one paying attention when that was said? I prefer to try the ACTH first, but I want my daughter to get some treatment. I think she is noticing the head drops now. She looked at me all concerned after having one last night.

#6 This was supposed to be a good month. This is the month celebrating Quinn's birth. This is the month of Down Syndrome Awareness. I was supposed to have beautiful posts and now it turned into these angry ranting posts. I am so sorry. I wouldn't want to read this blog if it was not happening to me. I would find it so depressing. I would want to hear nice, happy things - not this crap. But I have been thrown into this crappy game that I didn't want to play. I don't want to be right in this position in psychological limbo that I am right now. I don't want to be so low. I just want my beautiful baby girl to get what she needs. I want others to care something about this situation and rectify it. But writing these crazy, ranting postings is the only thing that is keeping me together right now. Maybe someday I can go back to the posts I wanted to do - the ones that are more positive - and maybe you will read them if I don't scare you off with this crap first.

So this morning on the agenda is more angry phone calls - to the insurance company, to the nurse practitioner (who didn't fax the paperwork to the insurance company until Friday and quite personally is not my friend right now because I put a lot of blame on her), to the neurologist to alert him of what his people have done to mess up this situation, and to the pediatrician just hoping she could maybe contact someone and get something to happen.

Because this post is just so negative, here is a clip about Dreams for individuals with Down syndrome. I watch this video with tears in my eyes hoping that Quinn can someday be seizure-free and have these dreams - that is all I want. See the video HERE. See I made it through without one swear word - a big accomplishment for me right now.



  1. Hi Karyn- I linked here through Sophie's blog. I am so sorry to hear that your little one still hasn't gotten ACTH. Questcor sucks, plain and simple. Not that it doesn't work, but the hoops they make you jump through are ridiculous.

    I would ask again about Vig. My understanding is now that it has FDA approval they are getting the medication into people's hands pretty quickly. Also, you usually know quicker if it's going to help.

    Good luck!!!

  2. More cyberhugs coming your way. I don't get the whole insurance company crap. I don't understand pre-approval at all. What, doctors just prescribe these treatments for fun? Sheesh.

  3. My time is short...because my son is in the recovery process from a subtotal hemispherectomy to control his seizure. Yes...that's right...after TWO VERY COSTLY courses of ACTH...my son was FAR from cured. And is now one of the children "blessed" to have the option of removing half of his brain in hopes of gaining that cure. Quite likely...after I tally the bills...for LESS THAN THE COST OF A COURSE OF ACTH! I am so sorry if I'm coming across too strong...or angry. BUT I AM!!!!! Questcor likes to pretend that insurance companies are not denying coverage...and that their drug is a cure. Neither are true. Although I will always advocate that caregivers of children with IS should have access to ACTH until science delivers us better alternatives.

    I'm relieved that you were finally able to start Quinn's course. I'm praying it buys you some seizure free time. For the price tag IS SHOULD!

    Would you mind if I posted your story to my blog as well?

    I think you should share this from the rooftops...especially as Questcor has just submitted their drug to the FDA for approval which if granted would also mean a 7 year exclusivity agreement...preventing any other treatments similiar to ACTH from being used/submitted for approval. Synacthen is the synthetic version of Acthar...and is available for just a fraction of the cost. Questcor is trying to shut down that option.


    I know you're life is crazy right now. And again...I am so sorry that I'm being agressive. But if you're anything like me...after I went through hell getting our insurance (AIG btw) to approve Trevor's first round...let's just say I've never gotten over it. And am passionate about protecting other families...like yours...from having to live that hell.

    Hugs and prayers for you guys...


  4. Please take a moment at your next appointment to educate your neurologist in regards to the time it takes to get Vigabatrin. Reports from parents are that Lundbek is shipping Vigabatrin overnight to patients in need and worrying about payment later....much different than the way Questcor handles Acthar.


  5. Praying that you get the answers needed quickly.

  6. Please ask your neuro to at least start prednisilone NOW! Also, like Mike said, you can get Vigabatrin overnight. I'm sorry you're going through all this at such a stressful time.

    Erin M.