Monday, December 22, 2008

Nutropin for Christmas

I thought for sure this post would be an exciting one.. filled with the joy of finally receiving my daughter's medication. Sorry but that won't be happening today...maybe in a week but I can not say for certain. I received a phone call today from the base pharmacy. You see this past Friday I was to pick up her first dose of Nutropin but FedEx never made their delivery. Instead it looks like it was delivered on Saturday and an Airmen working in the Ambulance Bay signed for the drugs. All in all this would have been great. The Airmen however didn't read and left my daughter's medication out all weekend. Nutropin is not stable when left unrefrigerated. This means the drugs have to be disposed of and reordered. Easy right?! I learned a long time ago that nothing is easy. The medication can not be reordered through normal means and must now be ordered out of the pharmacies budget. The Major in charged seemed a bit annoyed that she must now pay out her funds for my child. Honestly I feel no remorse. The fact that an expensive, important medication was left in the hands of an incompetent individual and now we must wait for even more unknown.... ya, not going to shed a tear for you my dear. So you may think that is as bad as it can get but nope not in our case it just doesn't work that way. The original medication was for the Nutropin Pen. This is a premeasured cartridge in a pen form for ease of administering to a child. The pharmacy is unable to get the pen and have now changed her prescription to the vial. The vial means I have to measure and use a syringe for each dose. Very frustrating!! I really wanted the pen because it took the guessing out of the actual shot giving process. It injects the needle for you with one smooth move. With the vial I will be doing it all on my own. The thought of my poor 2yrd being wrestled to the ground is always in the back of my mind. Will this ever end? Once we found out the cause of Neela's growth problems I thought it would be as simple as identifying the issue and prescribing a solution. Over the past 5 months I have played phone tag, faxed documents, explained her condition about 100 times, wrote appeals, begged for help, and now we have moved on to the waiting game. I am sure once this is all in place the headache of it all will be a distant memory... Somehow I am sure I will ever forget.

Just in case...

Dear Santa,

We sure could use some Nurtopin for Christmas.

Thanks
Amanda

5 comments:

Anonymous said...

Hang in there Amanda! Things will soon be working your way!
Jamie at The MAGIC Foundation :-)

jill@pvtn.net said...

Amanda,

I recently found out from my doctor's office that the pharmacy sets aside two 'start-up' prescription kits that can be used in situations like this. This information was like a 'by-the-way' comment after trying to get my son's prescription renewed at the end of his first year's treatment. Hope this helps! I have found that all the red-tape associated with obtaining hGH is worth it when you see your child grow!

Reformed Anon. Girl in Pain said...

Amanda,
I totally get the waiting game! I hope they get it sorted out for you soon.
My pharmacy has done the exact same thing to me by leaving the Nutropin on the shelf, even with 5 (I kid you not, FIVE!) stickers with "Refridgerate" on it.
And I just wanted to tell you I have been taking GH from age 4-18 and then again as an adult for the past 2 years and as a child we used the syringe and I tried the pen when I first went on again and I found that I prefer the syringe personally. You still have to insert the needle either way but with the syringe you choose how fast or slow the medicine goes in. But a whol elot of people love the pen, I guess I am just "old school"!
Good luck with it and don't worry, I started at 4 and within 2 months it was routine and not an issue at all. I think it will be even easier with a 2 year old. :)
God Bless!
REformed girl

Lori said...

Hang in there! What a frustrating experience, and I feel for you.

bonnielubbers said...

My 5yr old daughter has been on Genotropin for 3 years now. We got notice last month that our insurance is not covering the brand Genotropin anymore and switch us to Saizen. I don't really like it so I am wanting to switch to nutropin since its more simialar to what we are used to. Keep posting how this is working for you.