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Way to go Salty!

Do let us know how you do on xylitol, kmh, if you decide to try it out! My little guy just went in for another checkup with his ENT. He's keeping a really close watch on his sinuses - at least once every two months. We are now 7 months post sinus surgery (complete with sinus implants followed...

Let me try a practical approach here. I would ask a CF Center or a gastroenterologist familiar with CF - perhaps a trial with enzymes would also relieve the diarrhea, whether they find a second gene or not! It may be so much simpler than a strict diet. So many new mutations are being found. As...

Why do you want to stop taking them? Are you experimenting? Think you don't "really" need them? Do you think they are causing problems?

Having problems with all your links, jlfoo.

My thoughts - children are not just small people. Their systems function differently. It's like having brain surgery by a General Practitioner. All docs are licensed to perform surgery, but is that who you want cutting into your brain? Not me! But it's your choice.

Thanks Imogene and Thanks to RockyLass and her special Grandparents for giving us all a good name! CFers are a strong determined bunch - you can't help but love 'em!

I've been looking at your material Dr. Grossan. Just a couple of questions about your post initially. When you say you recommend adding xylitol for "your patients" are you specifically talking about that addition specifically for CFers? Chronic sinus sufferers? Everyone? And why would you use...

That makes sense, Jenny! Especially long term. Good to know. I wonder how long it takes on Ibuprofen to shrink them. And then I wonder how long before they come back.....?

Chris, I love the new newsletter format. It's exceptional. It collects so much information about CF related developments that I used to spend hours and hours trying to find and review - and often missed. You have saved me much time and energy and given so much hopeful information. Thanks so...

Wow. Great results from ibuprofen?! It makes you think the polyps are an inflammatory response, which is what I've gathered from other sources. But you would also think the steroids would have helped. I'll have to see how that works here too. Right now our son has minimal polyps even close...

The link above and the guidelines for cleaning nebulizers are the Cystic Fibrosis Foundation's guidelines for Infection Prevention and Control. They were formulated by a CFF committee reviewing all the latest research on infection prevention and control. I don't know how we go about testing...

RockyLass - are you saying that you boil your nebs and THEN rinse them in soapy water before drying? The recommendations are to rinse or wash them in soapy water FIRST, then boil them for 10 minutes, then air dry them. Do not rinse them after you boil them. Just put them out to air dry, and...

Just like the other posters - We see the hard water deposit on our Nebs - it shows up on everything as a white powdery substance. It means it's time for more salt in the water softener. But even when the softener is working, it's effectiveness is not complete. So either way, we put about a...

If you don't hear back from your Clinic, see if your Center has an Education Department - they are the ones at our Center who got the letter from the CF doc. You will likely need this to get a 504 rolling....

Lovely. And it is definitely my style.

A 504 is pretty informal as opposed to an IEP, an Individual Educational Plan. They are based upon different federal laws designed to protect people with exceptional circumstances like your daughter . It can help her get what she needs in the ways that she needs it and wants it. Since we know...

I'm so glad you're on your way to solutions!

Call a disability attorney and file. Now. You want your claim on file sooner rather than later since benefits run from the time you file. Take a look at the SSA's section on CF - http://www.ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm. You should also call your local...

Are you working full time or part time? Does you doc feel you need to slow down or quit work for health reasons? Find a supportive doc in your team of providers and 1. call the CF Legal Hot line for support, info and maybe referral. You may already qualify for SSI so 2. call the local Social...