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Yes, VBS is Vacation Bible School, and now that I've spent some time with him this morning, it does make sense that he had a stomach virus then followed that up with a cold. Friends are posting on Facebook about having colds in my region right now. His last bronchoscopy was in June and there...

Hey, I'm sorry for not knowing, but I thought Nasonex was a nasal steroid. Ratatosk and Jenny, what type of nasal steroids do Abby and Max use? Maybe a simple change like that will be the solution. Thanks again.

Yes, we do HTS 7% two times a day. He is using Nasonex 1 spray 1 time per day. Ratatosk, what antibiotic does Max stay on permanently? Sam was on Zithromax, Monday, Wednesday, Friday for a couple of years and then the doctors discovered new research that said this was not a good thing to do...

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...

And oh, yeah, the bottles were disposable, so we just threw them away after each administration.

Hi, Sarah, My little boy just had a PICC line, and it was really amazing the new technology that someone put out there. His meds came in a bottle, inside the bottle was a balloon filled with meds. The balloon deflated as the IV infused. My son is 3 years old, he could carry the bottle from...

Hey, I just wanted to update on this. Before we went, we played doctor with the stuff animals. We used large Lego blocks as picc lines and taped them onto the animal arms. I let Sam choose which animals were culturing bacteria and which ones were not. Then, I let him use an old Tylenol...

My 3 year old just watched this and said, "I want to be like him." He now wants to watch it again. rosesixtyfive, mother of Sam, ddf508, 3 years old

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

Thanks, Pat. We want to do everything right. I know we will make mistakes, but we're trying.

Wow! My family will be like Sarah. My son is in preschool and takes his enzymes. He knows to respond openly if kids ask him. So, no, it is not a secret. I want everyone in the world to know how much he struggles...but not on Facebook. And Aggie, there is a huge difference in being on this...

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...

Sam has done this and it turned out to be sinus problems. They can be helped with sinus rinses and surgery. Hopefully the sinus rinses will help him not to have to have too many surgeries in the future. His nose always runs clear - like a cold - because the green gunk is stuck in his head...

I'm sure there are others who can tell you more than I can, but, I heard it is working for ddf508 patients. It is in a stage III clinical trial which is the last trial before going on the market, and that it should be out by 2015. Did I get it right everyone? Thanks, rosesixtyfive, mother of...

Thanks Rebjane. We are scheduling the people who he loves the most to spend time with him each day. I don't quite understand how long it took you to administer the medicine. Do you remember about how long each day your child had to sit still and let the medicine infuse? Do you mean 6 hours a...

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...