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I've seen post in the past about taking less enzymes or none at all while on Kalydeco. Can anyone who's on this shed more light. I know the docs are going totell patients to continuetaking enzymes as directed, but would be nice and a huge quality of life factor if this drug limited or even...

My daughter has cultured MRSA for two almost three years now. Her MRSA is now considered colonized. Our Docs have never treated her for it and always acted like it was no big deal. Until her last CF Clinic when he told us she needed to start Tobi 28 on 28 off. Keep in mind we have never had...

Avery's BMI % has been dropping in the last 6 months, so the CF clinic had me collect her poop for 4 days and at the same time keep a food diary. I turned the poop and diary in to the clinic and they did the calculations. They tested the poop for the fat amount it contained and compared it to...

Avery has a pretty large bump (1 inch atleast) on the back of her head/scalp that is pink/redish in color. She says it is tender to the touch. Since she has cultured MRSA for over a year now, I wonder if the two are related? I should also mention that her papaw (who keeps her every day)...

I recently became a member of a CF Parent Advocacy Group. The group was started through our local childrens hospital. The social worker we see at CF clinic asked me to join, because she thinks my husband and I are great role models for other families...if she only new!<img...

My daughters poop looks like soft serve icecream sitting on the bottom of the toilet. Sometimes she will have normal looking ones that float. Do any of you/your children have poop that looks like this? I am always concerned about her poop at CF clinic but I have a hard time explaining to...

Avery just got her throat culture results back and they were positive for a moderate growth of MRSA and light growth of Haemophilus. MRSA we have had for a year, but the Haemophilus is new. The doc said the haemophilus was not anything to be worried about right now because avery is doing so...

We went to the CF clinc today. And of course for the 20th time or so Avery lungs sounded like a normal child. She was diagnosed at 18 mos. and ever since then she has barely had any respirtatory symptoms. Very little coughing, no mucus ever comes up. She has had 4 bronchs and the docs never...

Ok, I am trying to add a picture to my signature. I tried using image shack so I am going to see if it worked. I did a search of past posts and I followed the steps of one. Lets see if it worked...it didn't show up on my profile page so probably not.<img...

Is anyone else's clinic moving your appointments to every two months now? Ours used to be every 3 mos. but now they are every two. They said they want to keep a closer watch on the patients. I don't really mind but was wondering if anyone else has heard of this. Thanks.

I wanted to share with you a great addition to our equipment collection! I just recently bought a GermGuardian Dry Heat Sterilizer. I love it! I feel so in control of germs! First I soak Avery's neb cups, masks, inhaler and aero-chamber in hot soapy water and then shake off. Next I add all...