Recent content by briarrose

http://www.rarepatientvoice.com/sign-up/ For those of us who are cf parents or those with cf, you can sign up to take surveys and get a $10 gift card (amazon, Starbucks, or dunkin donuts), just for signing up. Looks legitimate, so I thought I would pass it on. If you put my name down, I can get...

Congratulations on the pregnancy! It is scary. but you're actually in luck with having G551D as one of your mutations. If your child does have CF, once they're a little bit older, they will be able to take Kalydeco, which is a miracle drug. Right now, for CF, that mutations is basically akin...

Marc - I suggested adding weight-lifting to add muscle mass (above), so don't ignore all the advice. :)

First, a lot of appetite stimulants need to be cycled, so you are on for a while, take a couple of weeks off to get it out of your system, go back on for a while, etc. Then, there are ways to eat healthier without loading up on cookies. Roast vegetables in olive oil and drizzle some flavored...

My son has cultured it for a while. (He's 2.5.) Our clinic doesn't treat without symptoms. It is a common bacteria in digestive tracts and they think he cultures it because he vomits so often.

I would definitely increase CPT to 3-4 times a day. (We give our son 2 puffs if albuterol before each treatment.) Also, are you pounding hard enough when you are doing the CPT? I have always pounded really hard on my son and he has stayed mostly clear. (He will be 2 on Sunday.) I know some...

A couple of things: -Is she on an acid suppressor (zantec, etc.) to help make the enzyme work better? -Is she getting her Creon dose based on the fat she consumes or her weight? Once we switched our son (now 22-months-old) to enzymes based on fat consumption per meal, he started gaining a lot...

I have always had horrible sinus issues. (I'm a carrier, not someone with CF.) I had horrible polyps, deviated septum, etc. My doctor recommended surgery when I was about 15 or 16, but I was able to put it off until I was 24. I wouldn't recommend waiting as long as I did, but a couple of months...

We sterilize bubbles after every use. We use the baby bottle sterilizer like we.do for the nebs and spacers. This is what our clinic told us to do so we do it.

Is adoption a possibility for you guys? If you want children but aren't fully committed to pregnancy, maybe it is something your partner would consider. Or surrogacy? You would still have the germ risks, of course, when your child is school age, but you would avoid any risks from the pregnancy...

CFF has said they didn't get the results they needed from the phase 3 trials of ataluren for cf so they are trying to figure out what to do next with it. (Higher doses, pairing it with another drug, etc.) This was discussed at the national volunteer conference earlier this month. Very...

There is an adult with cf living in the UK who is in spectacular physical shape and gives great advice to others with cf. His name is Ben Smudge and you can probably search for him. I bet he would have some great advice for you. Good luck!

We wash everything I'm hot soapy water and put it in the baby bottle sterilizer with distilled water. We use the event 6 bottle sterilizer but our rt said any of them is fine as long as it is not one that goes through the microwave. We used to boil but the baby bottle sterilizer really changed...

Have you tried adding a probiotic to your regimen? They do wonders at preventing yeast infections from zithromax

Has she been tested for celiac disease or milk protein intolerance/allergy? Both of those things can cause the really loose stools.