Search results

Every year our CF Clinic does chest x rays. That certainly seems prudent and necessary given the obvious nature of CF as predominantly a lung disease. But. I never hear the results or see them. Except when I ask I'm told "no change." Now I assume that's the goal, rather than seeing changes...

Interesting article on the benefits of exercise for CFers. It contains links to recent research comparing moderate exercise to the effects of albuteral. One of the things I found most interesting though was the researchers recommendations for moderate exercise compared to light exercise or...

I have no experience with this organization but thought some might find it helpful....if you apply for a Recreation Grant, or have done so before, let us know your experience! If your application is approved, the grant is up to $500. It is based on the premise that activity is especially...

My 9 year old has joined the cub scouts. He has wanted to for three years and he is thrilled to be there. But after only a couple of months, they are planning a 5km hike and an overnight camping trip. My initial reaction was no, no. No hiking. But I know it will be good for him . . . .if we...

Well here's the latest that I've found . . . As I stand here waiting for my boiling nebi soup to finish! This is the portion on nebulizers copied and pasted from "updated" infection prevention control guidelines published onwww.cff.org, and the link to those guidelines from the cff.org site...

Every clinic visit for my 9 year old starts with a visit to the lab for PfTs. They print out a copy of the report with all parameters and graphs. They won't let me see it or give it to me, but they then hand carry it to the doc. The doc then shows it to me briefly if I ask for it and he does...

Ugh. I am so confused. My 9 year old had his third surgery to remove polyps two weeks ago. The ENT has put in a propel implant in each sinus to try to hold the polyps from coming back so quickly. They are like little cages that have a steroid in them. They dissolve after 6-8 weeks. At...

You know, I always struggle with this. We have an upcoming outpatient sinus surgery. At least it's hopefully outpatient. My little guy hates PICC lines and IVs to the point of hysteria at times, but hopefully there won't be much of that this time since its outpatient. I don't want him...

Well my 9 year old is about to undergo his third sinus surgery for nasal polyps in 3 years. They have always come back within a couple of months of surgery, but the ENT always waits as long as possible - until they cause problems. This time the ENT wants to insert a Propel Implant with the...

My son had surgery when he was first born and spent weeks in NICU. Ever since he was a baby, I have noticed instances where he seemed to "lose" track of time, although brief. And I have seen other things that seem to indicate he has some short term memory issues, or issues transferring...

I'm just wondering. If Kalydeco goes a long way toward normalizing lung function, have users found they are finally able to rid themselves of pseudemonas or other colonized bacteria?

I cannot believe the my doll baby has acquired MRSA during his last hospital stay. I am devastated. Tell me what to think about this. . . .

My CFer has been on TOBI twice now. The prescription for the nebulizer was written at one point when we first used TOBI. But the nebulizer delivered was not a PARI LC PLUS®/PulmoAide. In recent research, I've found repeated statements, including from the makers of TOBI, that the PARI LC...

DS (7) has been complaining of stomach pain - general ache, not sharp - for over a week now. I discovered he hadn't had a BM in three days, but did after I started heavy hydration with Gatorade and water, broth etc. It appeared he wasn't getting enough fluids at school and his desire for...

Okay. If I have trouble figuring out how to introduce this topic, I can't blame my 7 year old for handling it inappropriately! Lately our CFer has been very gassy and belching rather loudly. It's s frequent problem which I have discussed with his CF doc. Frankly I think we need a visit with...

Help. My 5 year old used to take Ultrase MT12 (4 capsules with meals) As a result of FDA problems, he has been switched to Creon DR 24,000 (2 capsules with meals and snacks). He's only been on them one day. This evening, about an hour after he had his inhalers (Xopenex and QVar) as well as...

(Sorry for the double post - not sure where to put this one)Hi. I have searched the forums for an answer, but I still don't see one. My 4 yr old has come home telling me that eating french fries is "junk" according to his gym teacher. His preschool class is about to embark on a week of learning...

My husband and I are the grandparents and legal guardians of a 4 year old with CF. He and his sister (non-CF) have lived with us for almost 3 years. Whenever he has asked why he takes enzymes, or does CPT, etc, I have always given him an accurate "science" answer (his belly needs extra enzymes...