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I was diagnosed because of my children's testing. They were each found to be CF carriers each having a different mutation. They have the same mom and dad. My doctor and I discussed it and I had genetic testing followed by sweat test. I am now diagnosed with and treated for CF. My daughter...

My scratch are positive for a large number of allergies, but my bloodwork shows my IGE level is very low. My daughter has the same allergy and blood test results. My sinus CT scan shows lots of mucus from allergies too. So does anyone else have this? I have been reading about non-iGE...

The nutritionist at my CF clinic recommended a gluten free diet because I had bloating. If I am completely consistent for 3 days I have no bloating. If I eat 1 meal in a day with gluten I bloat, but my stomach is back down by morning. If I have 2 items with glutin in a day it takes another 3...

Thank you all for posting. How do you all boil the water for daly use. Can I boil a bunch and then fill a pitcher for a week or would bacteria grow again? I had the metal thing to boil water way back in college and that seems easy to transport. What do you pack to boil the water in and how...

I travel frequently and have a good system for my vest, neb meds etc. What I struggle with is how to travel and do sinus rinses. I use the neilmed sinus rinse bottle hypertonic saline and I put an antibiotic in the sinus rinse, so I really shouldn't miss a day. I know you are supposed to...

I know any anesthesia is scary as a mom, but know many of our kids including mine have had bronchoscope. My daughter did very well. She had upper GI bronchoscope and sinus surgery all together and came home that day. My daughter took versaid which is a liquid Tylenol and something else that...

I didn't leave a message. Good to know.

Have you googled CFTR 2 or tried John Hopkins genetics to ask about interpreting your child's genetics? My clinic would diagnose your child CRMS and I would ask for preventative treatments for mucus clearance and that your child be followed in the CF clinic. Has your child had a fecal...

Thanks for the advice, yet another great customer service experience from Hill Rom. They are overnighting a new vest machine and hoses and I will send them the dirty machine to be cleaned. FYI the fire restoration team explained not to use anything with an airintake with soot from a fire in it...

Do you mean more respiratory infections? If that is what you mean then the bacteria that most CF lungs are colonized with are not typically found in lungs of non-CF people. However, if your guy is catching many viruses typical colds that are going around and bringing them home to you. I could...

The cloth vest came clean in the washing machine and my daughter used my vest machine motor part. What a mess this clean-up is.

Anyone have a vest machine get a layer of soot from a house fire. We had a small fire and no one was injured, but the vest machine happened to be in the family room attached to the kitchen and has a layer of grey soot on it. The fire clean up team came out that the home insurance company sent...

I started azythromycin a couple of months ago. It took 3 or 4 weeks before I noticed a difference. For me the mucus quantity didn't decrease, but it seems to flow from my sinus easier to get out with a sinus rinse. I was waking up in the mornings with really stuffy sinuses and now the mucus...

I'm preying for a miracle for you. God has answered my prayers in ways I would have never imagined.

I find e-mailing a pen pal I met on this forum helpful. I would be happy to E-mail with you. My situation is quite different in the my daughter has been sick since birth and is now treated for CF, but not officially diagnosed. Due to my daughter my doctor had me tested and I am now officially...

Thanks for your responses. You all made overnight camp seem doable. I will work with the band director and speak directly with the camp nurse to make arrangements. My daughter is so happy with your suggestions. Only on this forum could 3 different people really understand the problem. best...

We go through a Vois about every 6 months. I register them on the Pari website and they send a new one over night. Then they mail a shipping label and I send back the broken machine. Only nice thing is the new one usually comes with a neb or 2.

You might want to specifically ask how many unexcused absences are allowed. I also added to my daughter's 504 plan that doctors notes will be provided by the end of each marking period. Then either her pulmonologist or CF team E-mail me a note for the days missed. I just make sure a nurse...

My daughter, currently in 8th grade, wants to join the band for high school and this will require her to go to overnight band camp. I was not in the band and so I know nothing about the overnight camp. What should I know to be prepared? Did anyone of you or your children take a vest and...

I just want to let you know you are not alone. I am 36 and have been married for nearly 15 years. I only recently was diagnosed with CF and without any hospitalization etc this has taken a toll on my marriage. I am able to work only part time and now spend many of my days off at doctors etc...