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My son has been on Orkambi all of January and all of February. He got sick with a sinus infection at the end of January and ended up going on antibiotics February 4th. Nothing we have tried has made him better. This is the first time this has ever happened. The green mucus from the sinus...

Please help. We are losing the battle on sinus infections. Sam had his second sinus surgery in October and he has already had two sinus infections. We are in a vicious cycle of three weeks of abx, followed by two weeks of good health, followed by sinus infections, and repeat. We do sinus...

I may be opening up a can of worms, but I wanted to know if there were any Canadians out there and how you feel about your healthcare system? Are you happy? Do you feel your quality of CF care is good? Do you have easy access to hypertonic saline, pulmozyme, Tobi, all the CF drugs? Are you...

Sam showed fatty infiltration of the liver during his last ultrasound. We have never had to do GI consults before, but we will go January 5th. They said they would be looking for scirosis of the liver. Does anyone have any experience with this? What kind of problems could this indicate? We...

Has anyone had a pet diagnosed with pyoderma? We have a rescued schnauzer and I have tried to keep my cool, but I am freaking out. We were told the pet was healthy. He had been in foster care for 9 months with a "loving" foster mom who only asked for the money she had paid in vet bills which...

Sam's preschool usually does a unit on plants where they bring soil in and grow plants in the classroom. At the beginning of the year I asked them not to do this activity because we don't mess around with soil. They respected my wishes but now they are asking to create a dirt-digging area on...

We are having a difficult time transitioning from the mask to a mouth piece where Sam actually has to bite down and breathe in through his mouth. Anyone have advice on helping the transition. Sam says he gets saline in his mouth using the mouthpiece. Thanks, rosesixtyfive, mother of Sam...

I am afraid of pets in the home. I've tried, but CF has made me a germaphobe. I'm afraid of bacterial infections in the ears, pseudomonas brought in from outdoors, PA in water dishes, bacteria on slobbery kisses. Dogs just freak me out. What are some ways that you keep your pets as clean as...

We have a new pet. I just read that shih tzus are prone to ear infections which can be pseudomonas argeunosa. They can also have skin infections which are staph. I just can't do it. I just can't keep this pet in my house. Anyone have any experience or info on this? I am losing my mind.

Okay, now that I just realized we are close to finding out what is going on with phase 3 for ddf508, I just can't wait. I heard some negative news, has anyone heard anything positive? I don't think I can wait until July. rosesixtyfive, mother of Sam, ddf508, 4 years old

Okay, I've run into my first snag with navigating my child through the public education system. DS has been part of a preschool program that has been very flexible with us. He has been going part time and coming late in the morning.... Now he is ready to move on to the next step of the...

Anyone hear of a news story from 2012 about a child who was asked to transfer schools because he had two CF genes and the school was already occupied by a brother and sister with CF? You can Google articles from 2012 if you type in "Student with Cystic Fibrosis Kicked Out of School.' The...

Hello all, Sam has been doing very well since his sinus surgery this summer. Sinus rinses have changed the chemistry of his nose. He has clear mucus and it something he can live with....BUT he stays on antibiotics. We have tried to write it off as, oh, it's just the age. He's in...

I just can't help wondering what Vertex findings might mean for my baby. I am cautiously hopeful. Can you blame me? I read about people experiencing miracles after being on Kalydeco. For them it meant an end to round upon round of antibiotics, IVs, and hospitalizations, and end to sinus...

Has anyone heard recently a predicted date for the release of Vertex for ddf508 or am I jumping ahead to believe it will be this easy for its approval? I have heard as early as 2014, but I'm not sure. rosesixtyfive, mother of Sam, ddf508, 4 years old

Does anyone know if Kalydeco will help improve sinus problems? Anyone have any experience with it? I have been reading that it will more than likely improve pancreatic function. What about sinus issues? rosesixtyfive, mother of Sam, 3 years old, ddf508

Hi, we are on day 4 of a cold and I am trying to help Sam clear it as quickly as possible. Our CF clinic does not really have what I have heard some parents call a "sick plan" so I am trying to make one on my own. Here is what I have been doing since Monday - I have increased the vest from 2...

Sam just recently recovered from having adenoids removed - adenoids that were incredibly swollen. We did neti pots before the surgery but no mucus came out. Now after the surgery, we are still doing neti pots and no mucus really comes out, a little bit of sticky clear stuff every now and then...

Hi, My son has never been tested to see if he is getting the right amount of enzymes. He is doing very well with Creon 6000 six pills with each meal and snack. I have never backed off to see if he needed less. This is the number he landed on at 1 years old...but looking back I think maybe his...

Does anybody use Asheville, NC, as their CF care center? I know someone just posted about NC, but I wanted to know about Asheville, NC specifically. We are considering going for different opinions. Thanks, rosesixtyfive, mother of Sam,3 years old, ddf508