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So Marty has another appointment on Monday at the CF center. I find myself getting so nervous for every stinkin appointment. Everytime we go there is always something going on. It is soooo annoying. The night before the appointment I can't even sleep!! I feel pretty comfortable there and Marty...

Marty has been on Tobi for a while now month on/ month off. Did anyone or your child ever develop a cough while on Tobi? Marty had a tune up last month and is doing his tobi month now. We thought we finally beat the cough with this round of Tobi but now it is coming back. He was also put on oral...

Oh I am having a terrible day. Today was not a typical CF clinic visit but we went to clinic today. We had to see GI and endocrine. My baby is taking such a high dose of enzymes that the doctor is concerned. They want to increase the prevacid even more and they can't increase his enzyme dose...

Hi everyone! I just wanted to wish everyone a happy and healthy Thanksgiving. You are all in my thoughts and prayers. Thank you for all the support you always give. CF has been rearing its ugly face in my little boy's body lately, but he is home now on IVs and I am so thankful for that. I hope...

Ok so they keep increasing his dose becuase his peak levels are not high enough. Is this something I should be worried about? The nurse told me that the pharmacist thought that his peak levels should be much higher but they weren't. I don't get it...they should be higher because they told me he...

Marty is in the hospital for a tune up. His lung function has been down and his cultures were icky. How have you guys killed the time and what procedures have they done? They put an IV in for now but they mentioned putting in a PICC line. Is this typical? He has been hospitalized many times...

Hi everyone!! I just have a question. There always seems to be something to be going on with my little one. His nose is always stopped up. THE POOR KID!!! I looked inside his nose with a pen light and the left nostril is all inflammed and you can even tell from the outside of his nose! He has...

Hi everyone! How are you all doing? You guys are always so helpful. My son was recently diagnosed with CF and he seems to be having one problem after the other. He is severly panceatic insufficient and at the last clinic appointment the nutritionist sent us home with a meter to test his blood...

HI EVERYONE! I just want to let everyone know that through the quest screening they found my son's mutations. It took forever to find out but at least now our "not knowing what is wrong with our baby" has come to an end. I am just really glad that I kept pushing for everything. I have another...

Today I picked my son up from daycare. It was super hot today and I saw this white stuff all on the back of his neck, on his hairline, and on his scalp!! It freaked me out so much that I cried when I got home with him. I just don't understand. My son has had a borderline sweat test (at a...

Hi everyone! I am just wondering who you guys call when something goes wrong. We are new to CF and to the doctor. My son has a really strange cough that seems really tight! We have done extra vest treatments and have not missed any of the regular stuff. Just can seem to loosen it up. I left a...

Hi all! My little guy is on Ultrase and they have not recieved FDA approval. Anyone have any idea of what's going on? Our CF doc gave us a bunch of samples to help get us through until Ultrase and the FDA worked it out. We really don't want to have to switch because he is doing SO WELL!! I only...

Hi Everyone!! I am new to this site and I could really use some advice. My son is 4 years old. When he was an infant he always had digestive issues and never had a formed stool. About a year ago, his digestive problems got really bad and the doctors found him to be pancreatic insufficient. I was...