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May is CF awareness month and I am on a mission to get as many people to "like" my website <a href="http://www.connections4life.com/">http://www.connections4life.com/</a> and "like" my Facebook page <a...

May is CF awareness month and I am on a mission to get as many people to "like" my website <a href="http://www.connections4life.com/">http://www.connections4life.com/</a> and "like" my Facebook page <a...

I need as much help as I can get on this topic. I need to formulate a list of questions about atypical cf. Please take a minute to post some questions you have about atypical cf that you believe would be helpful to have answered to educate anyone interested in this topic. Thanks in advance for...

It has been two years since three of my kids were diagnosed with Atypical CF and (knock on wood) they are doing great. We still have our issues of course but now we know how to treat them. Our road has been long and scary but we have survived. I have decided to turn anger and self pity into...

We are back in with my daughter for another round of IV's and now a Gtube. Last trip was beginning of Feb. She is better lung wise but just doesn't eat well and can't totally shake the cough. I am hopeful that the extra nutrition does the trick..

I recently posted about discovering my children have bronchiectasis. My daughter's is more advanced than my son. Quick info.. My son who was malnourished as of a year ago has put on 20lbs since starting enzymes. He didn't require IV antibiotics for his bronchiectasis and had responded well to...

Just found out two out of three of my kids have this (# 3 hasen't had a CT yet). Very upsetting considering we are "Atypical CF".. My 7 year old(daughter) has it worse than my 11 yr old. I am concerned her nutrition is playing a roll. Does anyone have experience??

We put my daughter in today to figure out why she can't get rid of her cough and to try to get her belly/digestion issues under control. She is such a trooper! Really excited they finally have internet access here!

I haven't posted in forever but still read everyday. My three kids were dx last spring with atypical cf. This was our 1st fall in 11 years hospital free. YEA!! They are all better but not great. All three have had sinus infections, we still struggle with belly issues and two out of three had...

We finished a three week round of Tobi and bactrim for all three kids. They were all good on the meds. As soon as the antibiotics stopped (still on tobi) the low grade fevers and congestion are back. The Dr. has decided to admit all three for "tune ups" and do the sinus surgery and broncs. He...

Just wondering if vomiting is common in CF. My 10 year old vomits regularly 1-2x's per week.(Not including when he vomits his mucus up in the am) He starts complaining of a stomach ach,vomits, then he is fine. He does have GERD and is on 40mg of nexium. He recently started enzymes. He does snack...

While my son is doing his tobi and after he gets a funny feeling in his chest. It is always in the same place his lower left side. He describes it as a flapping or fluttering. Has anyone ever experienced this?

It's me again...I am going (without kids) on Tues to meet the CF team. I will be meeting a handful of people from what I understand. They told me I would be there for a while. Any advice on what to expect or questions I should ask?

The fungus my daughter cultured in her lungs is acrenonium/cephalosporium. Has anyone herd of it or cultured it?

My daughter had a sinus ct and her sinuses are blocked. She is also growing some gram negative bacteria (more results pending) and some sort of fungus. The pulmanologist is consulting with his partners on how to proceed with my 3 kids. The two options are do outpatient broncs and set up home...

My 10 year old has been complaining on and off for about a month that it burns when he pees. Sometimes he will go a few days without complaining and then some days he will complaine a few times. I had him checked for a UTI and it was negative. Everytime I think no more... he complaines. Anyone...

The Dr. ordered sputum cultures on my 3 kids ages 3,6 and 10. For the younger ones he said throat cultures or sputum we did the cultures b/c they didn't know how to give a sample. They want my 10 yr. old to give a sample but he doesn't know how either. He just seems to get stuff from his sinus...

My friends son has had several of the same issues as my children. Constipation, asthma, frequent pnemonia, lingering cough and random wierd infections. She knows her brother is a cf carrier but no other known family hx. She was screened during her pregnancy and was neg. (I am assuming for the...

I tried this question before but still looking for help. At what fecal elastase number were you or your child put on enzymes? I have read that healthy people are >500. If you have been tested what were your #'s? Thanks! Amy

My sons genetic testing came back with two copies of the same mutation (a very rare one I was told). The Dr. has already been treating him as if it is cf b/c he has several symptoms. He wants us to go to Hopkins B/C he has never seen two of these copies together before. I was also told on...