question re hyper-sal under 6

[Aboveallislove]

Our son is 3.5 and has been on hyper-sal 7% since 2ish. I love it and think it works wonders. Before he never had even the slightest nasal liquid but when we do hyper-sal his nose runs during treatment and he'll be able to blow his nose after but then it is clear and that's it And he gets a few very productive coughs out. He has no problem tolerating, etc. But we just got a re-order from the mailorder pharmacy which apparently is the first time we filled since the insurance switched and the pharamist called and was quizzing me on it, was his dr a pulmonologist; has he been on it before; were they checking his sodium levels; vomiting, etc. So now I'm wondering if these are really concerns or the "lawyer-like" things. . . before starting I asked re side-effects (I don't read the detailed warnings b/c if you read them they will scare the crap out of anyone and I know it must cover everything, so instead I ask the doctor specifically re sideffects, concerns and things to watch for and let them filter it.) I was told re the rare chance of a bronchial spasm so we started really slowly. But no one mentioned vomitting or sodium issues. He's had his annual blood work done after being on about 9 months or so and no issues there. He has GI issues and so vomits, but always has and not very frequently. Just curious if anyone else using off-label <6 has been told of these concerns and/or experienced them.

 

[Rebjane]

My daughter is almost 10 years old and she has been using Hypersal since she was about 4 years old. She has never had any issues with sodium levels. We always use her albuterol neb prior to her hypersal, so no bronchospasm there. Hypersal has made her vomit a time or two but in a "good way" if there is such a thing. It was when she had a bad respiratory virus and the HTS made her cough so much she coughed up a bunch of mucus and threw up...But I think better out than in her lungs... THere was a recent study that HTS was not all they thought it was for young children, the ISIS study. However, our Cf doc and I agreed in my daughter's case HTS is good for her, helps her and she's staying on it.

It is always good to think about why we do what we do for CF and look at the meds and figure out how they are benefiting us. Reviewing with your child's CF doc the meds and the benefits vs. risk.....

When my daughter first started HTS she was 4 and having a tough time respiratory wise....After starting it she coughed for about a month, gained 5 pounds in a month and needed antibiotics for 2 weeks... After that she had a good 3 years of not needing "hard core antibiotics".....I remember it clearly. COurse since that time she has needed hard core anti's but she remains on the HTS.

Hope that helps!

 

[Printer]

One time, right after I was Dx and before I transfered to a CF Center, I had an Rx for 750 mg Cepro. A pharmacy assistant called my Doctor, spoke to his nurse, told her that the Rx should have been written for 250 mg not 750. The nurse changed it.

Save me from medical people who don't have a clue.

Bill