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I am also very interested! A close friend with significant digestive issues (non CFer) including IBS, bleeding, weight loss, etc, adopted this diet and has seen significant, compelling and lasting results. She asked me if I had ever heard of this diet and thought it might help my kids with CF. I...

Listen to Bill ... sound and sage advice.

All great suggestions from everyone! I too did not know about the med stuff not counting toward the carry on limit. My add-on advice is to find a small lunch size cooler with the foil lining, as it keeps items cold waaaaaay longer than the traditional insulated/plastic liner ones. Have a...

CFSD, forgot to recommend sinus rinses if you are thinking the PA is hanging out in the upper resp. Sinuses can harbor infections and then they end up in the lungs. The NeilMed sinus rinse bottles are awesome and a 7yo should have no problem doing them. Best!

CFSD, It's good that you are treating the PA aggressively and I hope that the oral antibiotics will do the trick. Great comments from the community about the success of IVs. If the PA is still culturing after the course of antibiotics, I strongly encourage you to push for IV treatment, and one...

Hey I just looked at Foundation Care's site and they say they are a "full service pharmacy serving patients in all 50 states." They are based in MO.

Foundation Care has been excellent for our specialty meds, including compounded drugs (e.g., coilstin). They work with the cf clinic and insurance companies for authorizations, ship fast, and place reminder calls for refills. I highly recommend them. www.foundcare.com

My dd was on that drug I think when she was around 10 (in addition to having a gtube). She did gain weight, but she ended up with early puberty at 11. She was tiny and when we looked into ways to help her grow, it was too late to try growth hormone etc. because she had already started her period...

Idevoti, What is a sterilizer bag? Intrigued! Would be great for travel.

Yes check with your cf specialist (not regular dr as they can overreact to the cf dx and hesitate on important issues). The flu shot is not a live virus so you *cannot* get sick from the shot. In general, the risk of getting the flu for someone with cf (and the very young, and the very old, and...

Obviously you will be working with your cf specialist on any decisions .... My teenage DD has exercise induced asthma (w her cf) and benefits greatly from an albuterol or xoponex neb immediately prior to exercise/sports. An inhaler never works for her (even w/ spacer). Someone here suggested...

Good news, bluewriter. You are making progress. Don't want to pile on as you have so much on your plate, but pleeeeeeeeeeeease get your daughter (and you) to counseling. Regardless of the dx, you are dealing with chronic disease and need professional support, including addressing the assault...

Amazing job advocating for your, son, Sarah! You are running down the legal issues, but outside of those, can you work with your son to learn to swallow pills? I think what the preschool is doing is horrible and ridiculous (and they are 100% wrong). I'm only considering a way to make it a little...

My daughter has clubbing as well, her O2 is generally in the high 90s, and her PFTs are excellent.

Why submit your daughter to another CT when they haven't even done a sputum culture? This is really messed up. To have such a young girl with such dramatic symptoms is alarming. Clubbing indicates chronic pulmonary and possibly cardiac disease. Please go to your patient advocate asap with the...

I'm sorry to hear of your son's recent diagnosis. You didn't say how old he is, but I hope you are catching it early and he's doing well overall. Definitely follow up with your doctor with any questions (and you will also get a lot of good feedback from this forum). I hope you are seeing a...

Oh and I do run my drying racks thru the dishwasher periodically to sterilize those.

Shannon, You should b fine with your approach!!! We rinse the neb parts in tap water at the end of each day (so the meds don't dry and crystallize on them). Because I have 2 with cf and want to limit unnecessary germ sharing (and I frankly don't want to keep track of whose pieces/parts r...

I agree with the others that say your son does indeed have cf. It took many years to find out the 2nd mutation my kids have, but we never doubted they had cf. So glad you are working with a CF Care Center. (If it's not a certified care center by the CF Foundation, I recommend you find one.)...

SJO, I can't help but to weigh in on this topic because I strongly relate to your concerns for your son. I have two daughters with CF (now 19 and 13 years old). For years, one or both get colds/respiratory viruses every Fall from school (or the store ... or friends ... or whatever), and those...