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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...

Lena Bean, I think it was just saying we didn't need to rush for a PICC line with a sinus infection. If it is pseudomonas growing in his nose, a PICC line would be the only thing that work in that scenario, but there are other bacteria that grow in the nose where an oral antibiotic would be an...

Okay, I talked to the pulmonologist and Tobi and Cayston do not work for sinus infections. The pulmo also said jumping straight to a PICC line was a little too trigger happy at this point. Thanks.

Jenny, Thanks so much for your information. I'm afraid we've waited to long on this one and they can't do the surgery until June 25 because the doctor only does surgery once a month. That kind of makes me mad. So, Sam is uncomfortable and has to suffer for two months because the doctor only...

I am still trying to research to see if the PICC line is absolutely necessary for a sinus infection. we will do what is best for Sam, but I am trying to get him an appointment at Vanderbilt? Anyone have experiences with Vanderbilt CF center or pediatric ENT there? Thanks again so much

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...

Thank you so much for your response. I knew I could count on you. Right now I am feeling like an alien on another planet. People keep telling me, oh, my child had their adenoids removed but I know this is a different ball game. Someone even told me that God was my son's picc line. And while...

What do you usually do when you think bacteria is growing in the nose? Would love to hear other ways people have dealt with this?

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...

Thank you for your responses. I know the post was a little too long maybe. Has anyone ever heard of a picc line for sinus problems? Thank you so much!

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...

Sinus problems are just part of CF. I get that, but what do you to fight it the best you can?

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...

I would never say that I did not want to hear the problems or the sadness of people who are living with this disease or fighting for their children. I can cope with that. Of course, we are the only ones who can understand each other. What bothered me was when a mother who was coping with the...

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...

This is the most ridiculous thing I have ever heard. I would switch doctors, but I would also be sure that someone on the board of administrators of the medical practice hears about her behavior. She should have googled PA before she went into the room if she was that ignorant about what it is...