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Recently, my niece copied a picture from my Facebook page and put it up on her own page asking people to pray for my child and announcing that he had CF. I very kindly asked her to please take it down as she has 800 friends and some day my little boy will be a teenager and may not want CF...

I will ask the doctors when we go for the bronchoscopy next week, but what kinds of fun things can Sam do with a PICC line in. I know swimming is out, but what about running through a water hose, playing at the playground. How active can he be with a PICC line? I am trying to make a list of...

How can I explain to my child that he is going to the hospital for a bronchoscopy and picc line and then going back in a week for a sinus surgery? How can I help him when he wakes up with a PICC line in? I am afraid he will try to take it out and that it will be a horrific experience. He is...

My Sam is going to have a bronchoscopy, a picc line, and sinus surgery this summer. I hate it for him, but I thought I would share with other parents what I have learned from this experience - teach your kids to do sinus rinses from a very young age. Our CF doctor let us know that there are...

I know this question has been asked a lot before, but when I went to purchase a whole home HEPA filtration system, I was confused by the fact that the IQ Air system only covers about 1200 feet. Our home is 1900 square feet. What do you guys recommend to keep the air clean in a house this size...

I was administering a test today at a high school and one of the girls in the testing group was wearing a profuse amount of perfume. It made me wonder about my little boy and what it might be like for him when he gets in the higher grades. It was making my eyes water, so I wondered, what was...

Hi, Sam's nose swab came back negative for bacteria, but just curious, have you ever asked a doctor if tobi or cayston helps control bacteria in the nose or is it only for the control of infection in the lungs? I have a message out to my doctor and will post back when I find out the answer...

I think my last post was too long. I wanted to post again. Has anyone ever heard of a picc line for sinus issues? The doctor is 99% sure that Sam is culturing something in his nose, but not currently in his lungs. He wants to do sinus surgery and a picc line at the same time. I don't want...

My 3 year old boy has kicked pseudomonas for two years. He just went off of Tobi and Cayston. Now, he has had a clear runny nose since December. He was on 21 days of Bactrim and was good during that time. The day that he went off, his nose started running again. Today, we saw the ENT for the...

My 3 year old boy has kicked pseudomonas for two years. He just went off of Tobi and Cayston. Now, he has had a clear runny nose since December. He was on 21 days of Bactrim and was good during that time. The day that he went off, his nose started running again. Today, we saw the ENT for the...

Hi, my son is 3 and has had a clear runny nose since December. He goes to clinic in a town two hours away every 3 months. His last visit was in March and he had lost weight due to the sinus problems. We didn't know if it was because he had started preschool or what was going on. Recently, he...

Hello, everyone, My 3 year old has had sinus infections since December and recurring ear infections. This is a new development for us. He has had colds before but never lingering infections. He recently had an x-ray and it showed sinusitis. We bought a Neti-pot, but the idea of it terrifies...

Okay, would anyone mind to take a look at this and let me know if you have any suggestions? Dear Parents, Our little boy Samuel will be in your child’s classroom. Samuel suffers from an illness known as cystic fibrosis. Cystic fibrosis is a disease that affects the lung and pancreas of...

Okay, Sam is getting ready to start preschool. I know there are letters here some where on this site to send home with the other kids, explaining what CF is and why is it important to exercise caution with illnesses. Can someone direct me as to where to find them? Thanks, rosesixtyfive

The posts lately have made me feel a little down. There may not be a cure, but might there not be better medicines that make life more like normal for a longer period of time for our children? I thought this forum was full of people whose parents were told they would not live to be two, eight...

Hi, All,We are taking a vacation ina few days, and it is our first time on an airplane with a child with CF, also an albuterol puffer. I want to carry the meds with me in a small lunch bag. Sam takes Tobi, HTS, Pulmozyme and enzymes daily. I don't want the medicine with the other luggage because...

<br>Our lives are very busy, but I won't Sam to eat healthy foods.  We go out to eat a lot.  That is good because the foods are fattening and full of salts, but what restaurant foods (fast and sit-down) have you found to be nutritious, fattening, and full of the right kind of fats - not...

Did I understand this correctly - Denufosol wasn't working and they had to reconfigure, but Bronchitol is still in the running? Anyone have any idea if they will be any more beneficial than HTS? Do you think either drug has the potential to have a great impact? Thanks, rosesixyfive, mother of...

I don't think this has been a very popular thread, but I wanted to know if there are any moms who would like to pray with me? Today, I would like to pray that all of our children have a great Saturday. That the children and their families have a day that is relatively free of CF concerns...

Dear Friends and Family: We need money to support cystic fibrosis research. We are asking everyone who loves Samuel to give us $10 or more for the Great Strides Walk coming up September 26, at Steele Creek Park at 1:00 p.m. We're not going to be shy about asking. As Sam's mommy, I'm...