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My son was on Bactrim propholactically???, for the first 4 years of his life. It wasn't for lung issues though, it was to prevent cholangitis, he has biliary atresia as well as CF. It was a lower maintenance dose. My other son was on Keflex for long term to prevent urinary tract infections...

Rebecca, I would definately get genetic testing done on your family. It can't hurt and why not find out everything you can. I have three kids and a husband with CF. My husband and one of my kids sweat test always come back borderline. But the genetic testing has confirmed their CF...

I am so sorry you had a bad CF visit. That really stinks. I hate going to clinic. They always seem to find something to bring you down. Hang in there.

Welcome to the site. I am sure that right now you are completely overwhelmed. It is so scary when that news first comes. Once you've digested this devastating news, I'm sure you will have many questions, and this is the perfect place to find your answers. I am new here, but I wish I would...

Congratulations, from one nurse to another.

Hi, I am sorry to hear about your recent diagnosis. It is a lot of new information to take in all at once. As the others said your local CFF chapter is a good place to start. I have three 8 year olds with CF so we have a few things in common. We also deal with various other special needs...

Hi, I have three with CF. One fo mine had the classic goul smelling stools from early on. His stools were also very greasy, his bottom often looked like you had sprayed pam on it. He too had severe reflux, we had to give him mediaction and feed him in 5ml sessions, burping in between, he...

BLOGS? I just realized this last week, when I googled my name for the heck of it. I was shocked, I'm not very computer savvy, and didn't think of not using my last name. How can I change my username???

I just got our annual lab results. One of my sons had a pretty low zinc. They put him on daily zinc. I've heard of them having low vitamin A, D, E, K, all of which have always been normal. Anyone else had low zinc? He is also pancreatic sufficient so far, no problems with malabsorbing.

A few days in the hospital, turned into 9 days for us. It took them awhile to get his Tobra levels to a therapeutic level. We then did another 2 weeks with the PICC line at home. It all went smoothly. My biggest recommendation would be: if he is on more than one IV drug have them time them...

Ours was 6 miles, the same as yours. They had people available if someone needed to be picked up, or had any problems. Good luck at your walk. Ours was May 6th and was great.

Renee, I am so sorry to hear about your bad clinic visit. Hopefully the girls were just a little tired and didn't put as much effort into their PFT"S. Hopefully their cultures will come back OK. I will keep my fingers crossed for you. I hate to go to the clinic. I hold my breath every...

Welcome Mark, always nice to have new people join in, and get their feedback. Good luck with your competition, hope you do great.

We had a similar situation in a preschool setting. There is another child that lives in our city with CF. We did different days. She t/th and us m/w/f. She sent her child to a private school for elementary school, so it is no longer an issue. I think that no matter what are children are...

We take the vest with us when we travel. Like Amy we always carry on, I would hate for it to get lost. Ours came with a duffel bag for the hoses, etc., and the machine has a carrier with wheels. It's great.

Hi Carrie, I know that pseudo can seem scary. My son just cultured positive this year for pseudo. We did 9 days of Cipro/ Tobra IV in hospital and the 2 weeks of Ceftaz and Tobra Iv at home. His last culture came back negative, yeah! I think the biggest key to eradication is early...

Glendora, California, about 20 miles east of Pasadena.

We have Rx coverage, but spend abou $350-$400 a month just on our stupid co pays. With three the copays can really add up. We just changed providers and instaed of a $50 copay, now its $30, which really helps over time.

Our clinic is about 50 minutes with no traffic. With traffic can take about two hours. And in Southern California there is almost always traffic.

Great Easter break, poor guy. I feel for you, up and down on this endless roller coater is no fun. Wishing him well. Let us know how he is doing.