Category: ciprofloxacin

Today is kinda of a lazy day.  I have the girls home this morning and they are playing.  Olivia spent an hour setting up a tea party while Julia was getting her longer than usual treatment, and Julia couldn’t wait to go and play.  We all sat down together, sipping our imaginary tea, nibbling on our plastic food.  Olivia had set out a salt shaker, especially for Julia.  She told Julia that is was for her because she needed it.  “I don’t need it and Mom doesn’t need it, but you need it because you have ‘sickstick fibrosis,’” she said.  I couldn’t help but smile.  Olivia is going to grow up to be such a great mother someday.  She’s always taking care of Julia, looking out for her, and looking after her.  I always know when Julia is up to no good, because Olivia is sure to inform me of it.

Julia is good at fooling everyone.  She appears to be just an average, healthy two-year-old.  She still has a nasty bacteria residing in her lungs-pseudomonas.  She started her second round of TOBI this week, but in addition to the TOBI, she also started an oral antibiotic-Cipro.  After reading all of the literature on Cipro, I’m under the impression that this is one powerful antibiotic.  It was almost scary reading the possible side effects and the “don’t use if’s.”

The Cipro is a 14 day run and Julia has developed some nasty diarrhea as a result.  It just pours out of her like water.  I feel very lucky to have made it through yesterday without a yucky mess, because, she is now diaper free, so the potential for a disaster is very likely.  We stopped to poop at just about every toilet.  She pooped several times at home…she pooped at Gymboree…she pooped at Einstein’s Bagels…and I had to pull out of the preschool pick-up line and rush into the school to let her poop yet again.  I am fully anticipating another round of C. diff. after this, but we’ll just have to wait and see.

I sure hope that this time we kick this one.  Treatments are very long, and it’s a lot to ask of a two-year-old.  Julia is amazing and I really don’t know how we get through it, but we do.

Julia’s final culture results came in yesterday, and she is still testing positive for pseudomonas.  That means we get to start another 28 day run of TOBI next week.  They are also putting Julia on an oral antibiotic, ciprofloxacin, for two weeks in addition to the TOBI.  It always concerns me when we do antibiotics because of Julia’s past issues with c. diff.  We’ll just to have to see how it goes.  I feel really discouraged.  We worked so hard with her first TOBI run.  It feels like it was all for nothing.

I was trying to get her TOBI filled before the first of the year because we are already maxed out on our out-of-pocket for prescription medications.  Our insurance won’t let us fill it until January 5th, the exact day we need to start her on it.  That means that we will be responsible for 20 percent of the cost, which is right around $900.  The Patient Access Network has been helping us out with the co-pay for Pulmozyme this year, so I had to put a call into them to see if they could help out with TOBI.  It was very good news to hear that they could help us cover the costs, all they needed was a doctor’s order for the medicine.

We are very thankful for such wonderful programs out there to help people like us with this expensive burden.  For instance, in January, our family would be paying a minimum of $1300 for Julia’s medicine, and that’s in addition to the $700 we have to pay for the monthly premium.  That’s a minimum of $2000 in one month for medical.  That’s more than some people make in one month.  Cystic Fibrosis is a very expensive disease.  I worry about Julia when she becomes an adult.  She won’t ever be able to go without insurance.

Wish us luck for the next month.  Hopefully, this time, we’ll be able to beat this one!