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Thank you so much for your responses. This gives me some direction to take in my discussion with Sam's CF team. He has had two sinus surgeries in his life. He is now 7. During his admission last week, his ENT did not advise sinus surgery. He said he was congested, but there was still plenty...

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...

He also has no lung involvement, but cultured staph and Moraxella with his last sinus surgery in sinus cavities only.

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...

Thank you so much for all of your replies. I knew a child with CF who died at the age of 20 here in the states because she could not get health insurance, and therefore went for several months without the medicine that she needed. I want to pick up the fight where her mother left off, but I'm...

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...

Sorry, I'm tired. I called the CF clinic for the second time for clarification.

Thanks, Rebjane and Ratatosk. I called for further clarification. I will let you know what they say. rosesixtyfive, mother of Sam, ddf508

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...

Thank you Rebjane and Melissa. You are absolutely right. It is not a good time for a pet if you are feeling anxiety about it. We recently tried a puppy and I was very anxious. I told the kids we were just trying, but it was very hard when it didn't work out. We already had a home in place...

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

Hi, roeann, Where do you see an article about vertex not working. I went to thestreet.com and all I saw was an article from June 2nd that said they were going to soon announce results of the Phase III trial and that it could go either way. Thanks

Hey, Politcaljules, It is an optional preschool program, but he can't stay in the program he was in last year for 3-4 year olds (which I paid tuition for and had more flexibility with). He has to go to this next part of the program that is state-funded. People can recommend that we find a...

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...