Search results

I saw a similar post in the Adults section, so I thought it would be fun to see what weird combinations our children with CF like to eat. Emma is 6 months old and teething, so everything she sees ends up in her mouth. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

I hope this is not a dumb question. Since my daughter was diagnosed with CF it has made me look closer at my health issues. I have had digestive issues for at least 12 years. Loose, watery, smelly, explosive stool and occassionally floating stools (I know TMI!). I was diagnosed with Crohns...

Is there any correlation between CF and Pancreatic Cancer? My husband's Grandmother and Aunt both died of Pancreatic Cancer. I am just wondering if anyone knows if the 2 (CF and Pancreatic Cancer) are related at all.

Starting on May 3rd through June 15th, Minnesota Bakers Square resturants will donate 10% of your entire bill when you present the Flyer and Barcode to your server!! 10%!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> All you need to do is bring the Flyer to ANY Minnesota...

Emma was having alot of diarrhea. I knew it was not CF related because she was not having the usual signs (it was not smelly, her tummy was not bothering her, etc.) I called the dietician at the CF clinic and we both thought it might be due to teething. The diarrhea seemed to be getting...

Hi. My daughter Emma had an Infant Pulmonary Function Test on Monday. I posted her results in the Family section but no one responded. Can you look at them and tell me what you think of them? ------------------------------- The test went fine. They had a little trouble keeping her asleep...

The test went fine. They had a little trouble keeping her asleep, but they were able to complete the testing. The doctor said her numbers look good. I have the results in front of me, but I forget which numbers he said were the ones they are interested in. There are 2 numbers. One is...

Emma was diagnosed at 7 days old through newborn screening. I am thankful that our state added CF to the newborn screening 18 months ago. Our Family doctor asked us at Emma's last appointment if we thought we would have known that Emma had CF without the screening test. I said no, I would not...

I have noticed a couple of people say that their child does CPT and then does a Neb. Shouldn't it be the other way around? I thought the neb softened things up and then the CPT was better able to dislodge the mucus.

Do you use sponges to clean your dishes? If no, what do you use instead? I have heard that sponges can harbor alot of bacteria and I worry about them because of the fact that they stay wet for so long. If you do use sponges... How often do you throw them out? Do you microwave them to kill...

Just wondering how many of us there are on here. It would be nice to 'talk' with eat of you and sort of compare notes. What is your child's name? Boy or Girl? How old is your child? How is your child doing? What medications is your child on? What therapies is your child doing? Has your child...

What would you do differently if your child did not have CF? Would your parenting style change? Would you clean less? There must be something...

Are you hopeful that there will be a cure (or a treatment that manages CF) within your child's lifetime? I think in the next 5 years huge strides will be made in managing/curing CF. Drugs like PTC124 and VX-770 make me very hopeful for my little girl. I am just wondering how others feel.

I am curious how your relationship has changed since your child was diagnosed with CF. Was it better before CF or after? How has it changed? What (if anything) do you do to keep your relationship strong? I have to admit that I have been concerned that CF would kill our marriage. Since the...

The CF Clinic called me last night and they scheduled Emma to do a PFT at her next monthly appointment. I was told they do this to get a baseline to compare to her future testing. Emma is 4 months old. Does anyone have any experience having had a PFT done on an infant?

Before my daughter was diagnosed with CF I did not know much about it and no one in my family ever mentioned a thing about it. Once Emma was diagnosed my aunt mentioned that one of my Uncles had CF? WHAT?!?! I called my mom. This is her deceased brother (lets call him Tim) and she had...

Has anyone seen any recent news regarding PTC124? I would love to see any articles you have come across.

Emma cultured Staphylococcus aureus. She was started on an antibiotic (bactrim?) A couple days later she got a cold (snotty nose, cough). She is done with the antibiotics now but the cold has not gone away. Looking at the calendar and it has been 2 1/2 weeks since she has had the cold. It...

I am thinking about having Emma's picture taken for Easter. Probably at a JCPenney Portrait Studio. Is there anything I should be concerned about. Germs? Any precautions I should take?

My daughter is 3 1/2 months old now. She is beautiful and a complete joy to have in my life. My question is... How do you handle the fears you have about what could happen to your child? The what ifs? The things none of us have any control over? I try not to think too far ahead, to just...