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I found this fascinating. If you've ever had one of those days when you can't shake the blues about CF, this study may shed some light on why. I'm not an expert on reading and analyzing these but it seemed pretty thorough. One of the study's authors has a child with CF. It was done on...

I am looking for tips and stories about if/how you make a blood draw go better for your child from the lab and technician standpoint. It's not preparing and handling my daughter that I have questions about. We have a pretty good system. What I need help with is how to ask/tell the lab techs...

For those of us without a blog, or even if you do have one, share your GS stories here. Our Great Strides was in OKC yesterday. The weather was absolutely beautiful! I MET Stacey (JORDYSMOM) and it was such a joy to visit with her. She is as lovely and caring in real life as she is on these...

Well I've confirmed what I suspected for some time. We switched Katy to a mouthpiece to do Hypertonic Saline, which she calls the "scratchy nose" medicine, and she can't tolerate it very well at all now that she is actually breathing it in. She was clearly cheating it somehow when nebbing it...

Katy did her first PFT yesterday. The results were disappointing to me (FEV1 78%), but the doc and nurse seemed happy and assured me that she would get better at doing the test. I'm bummed out because I've been cruising along in fantasy world that she "doesn't have any lung involvement". Ha...

Before her CF diagnosis, Katy was diagnosed with "seasonal asthma" by her pediatrician based on a cough that wouldn't go away. Her CF doc has not diagnosed her with asthma. The past 5 days or so, she has been doing a rapid breathing off and on. I can't tell if there is something wrong with...

I am so glad to have this finished! I'm finally mentally ready for Great Strides. I hope we all do really well! <a target=_blank class=ftalternatingbarlinklarge href="http://www.onetruemedia.com/shared?p=51061868bc8e9aac114cb1&skin_id=1605&utm_source=otm&utm_medium=text_url...

Has anyone else heard of a connection between teeth grinding at night and sinus drainage? Katy has been grinding her teeth at night lately. Today at her checkup the dentist said he could definitely see signs of wear on her teeth. He asked about allergy/hayfever type sinus drainage. She does...

Okay so I'm an idiot but it has taken me 4 weeks to realize that Katy has been moving away from extreme regularity towards a kind of chronic constipation. She used to have one or two BM episodes a day, and got lots of business done each time. Now we are seeing more frequent trips with just a...

I get the feeling from a recent post in the Adults section that gastric acid blockers of some kind might be a life-long requirement for CF'ers. However, I am concerned about the long term use of Prevacid (or any proton pump inhibitor) based on information I have from a very trusted nutritionist...

Well this is certainly small potatoes compared to what is going on in other people's lives here on the boards, BUT - We just gave Katy her first AquADEK softgel (which she swallowed whole in applesauce, yay Katy my big girl!) but about 15 minutes later she was rolling around on the floor...

I have observed in Katy off and on, even pre-diagnosis, some MAJOR episodes of having to pee frequently. Yesterday I swear she literally peed all day long, non-stop. And her Pull-Up (poor thing we've had to put them back on her at night) weighed about 4 pounds this morning it was so wet. I...

I have recently been reminded by a visit to the family cemetery (in another state) that one of my grandmothers had 5 siblings that died at age 3 or younger. These children were born in the 1890's. I remembered this when Katy was diagnosed, but I've just now been researching the details. One...

CF doc appointment went great, and I kept my head about me and was able to ask the questions that I already know the answers to, but I needed to hear the answers again from the doc. And I need to really, really believe the answers today, because I've got one foot in the hopeful, positive world...

Hi all - we finished our montage. For the others that have done one, was it as emotionally exhausting yet rewarding for you as it was for me? <a target=_blank class=ftalternatingbarlinklarge...

I was doing my usual evening routine and Katy came and found me. She was beaming and had a piece of paper in her hand. "Look mom! I drew a picture of the mucus in my lungs!" She was so excited, and I collected myself enough to smile, and I put my hands on her back and chest and pretended...

If your list of to-do's today included: "Connect to my virtual community to share some understanding and get support" then you are at the right place and I commend you for sheduling your time so well! Otherwise, what are you REALLY supposed to be doing right this minute? Whether it's work...

We were stuck at the cell phone store forEVER while they tried to get a loaner phone for me to work, since my cell phone broke and the warranty involves an exchange by mail and will take a week .........aargh! ANYWAY 30 minutes into this ordeal, Katy gets that look on her face and says "Mommy...

Katy's diagnosis in August came as a complete shock, as we have no known cases in our families (like many of you on this site). Since then we have tried to inform family members about the genetics with various success. We feel very strongly that our nieces and nephews should be tested to see...

On Topic: Having to do Katy's night-time teeth brushing while she is asleep because she conked out doing her evening breathing treatments Finding out that my old pharmacy was filling the script for a $50 copay each time, even though it wasn't a one-month's supply (just now discovered it when a...