Thursday, September 2, 2010


Lucy started taking a proton pump inhibitor (PPI) for six days now, and the improvement in her poop and stomach symptoms are increasingly getting better!

At the clinic visit last week we discussed what a PPI was, and how it would most likely help the enzymes work more effectively. We had discussed and decided to give her a PPI called Nexium, which is one of the newest PPI out on the market. It took nearly a week to get the prescription filled because both of Lucy's insurance companies didn't want to fill the Nexium.

The primary insurance company claimed that they wouldn't fill the Nexium because there are cheaper PPIs on the Prilosec, Prevacid, etc.

The secondary insurance company that covers most of her "special" CF needs, like the Vest, nebulizer, x-rays, Pulmozyme, etc...didn't want to cover the PPI claiming that it is NOT CF related! Yup, you read that correctly. They don't think that a PPI/antacid is necessary for controlling cystic fibrosis. I fell out of my chair when our nurse practitioner told me!

SO, instead of beginning Nexium last week, Lucy started on 20 milligrams a day of Prilosec. We will begin with Prilosec to see if that works for her (which it is so far), and move up to twice a day if needed.

It's working so far, so I won't complain too much yet...

Lucy's poops have been great! No more anal leakage, no more prolapses, and her poop doesn't even float anymore (meaning that more fat is being absorbed into her little body)!

I can't even begin tell you how much easier and less painful it is for Lucy when grease doesn't leak out of her butt constantly...

She has not been in a diaper for 3 days now!
BIG GIRL UNDIES! I'm so proud of her and her new partner in crime, Prilosec, that I could just cry!


  1. I'm so happy that you guys found something that works!!! Hunter's been taking Prevacid since he was diagnosed (first because he had reflux, then when the reflux went away the dr said keep him on because it helps the enzymes work better). I'm surprised all those taking enzymes aren't on a PPI - You would think the it would just be a part of the normal CF protocol. Get everyone started on it sooner than later. Hmmmm, wonder why it isn't..and if it will be at some point...
    Anyway, YAY for no more leakage and tummy owies!!!!
    ANd CONGRATS on 3 days with no diapers!!! Hunter was 3 before I potty trained him LOL.

  2. So glad you've found something that works and that little miss Lucy is feeling better. I think of you both often. Take care.


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