Search results

My 7 year old daughter didn't take her enzymes at school lunch yesterday. It was pretty fatty and high in protein. She has had a horrible night with stomach pain and continues this morning. She is in so much discomfort she won't go to school. She wants to go very badly because there is a big...

<br>We had to go to the ER last night for a chest xray. Our daughter is almost 4 years old and our peds asked for us to get a chest xray so she could rule out pneumonia. We have limited experience with ER's with our daughter and were shocked by what we found. Our dr called ahead and told the ER...

I am a guest speaker at my friends house (they homeschool). The kids are 3 to 5 years old. They are focusing on the lungs right now and would like me to talk with them about CF. Does anyone have some fun ways to explain CF? I was thinking of maybe a blown up balloon with something sticky...

I have a three year old with CF. She is an active, happy girl. I am very involved with the CF Foundation and make speeches. I also am fundraising constantly on the phone and in person. My daughter is with me on all of these outings. I am starting to get worried she is hearing too much about...

My daughter will be 3 in January. She has cultured pseudomonas 2 times and had a 10 day hospital stay to try and eradicate it. Her results just came back that she cultured again. So they consider her colonized. Did we just take a wrong turn in our CF battle? I feel like this is really bad...

So my daughter is in the hospital for a tune up. She has been in for 4 days. My husband are at each others throats. We are so annoyed with each other. I am here by myself all day and he comes after work and then drives home (which is 1hr away). Is this pretty typical for parents to be while...

My daughter is almost three. She has cultured psuedomonas three times. They are not all in a row. But she cultured it on October 12th again. She got a cold on October 24th. We of course are on TOBI/Cipro for the psuedo and did a five day stint on steroids. So we are looking at 15 days of...

So at dinner tonight my husband said, "Oh, my old college buddy has a connection with CF. He was going to marry this girl with CF, but she died before they could get married." I just dropped my head and was apphauled at how brutal he was in saying this. We have a 2 1/2 year old with CF and I...

My daughter is 2 1/2 years old. She is getting to the age were she is more alert to her surrounding and more talkative. So far CF is all she knows. She does her treatments in front of other kids as well as her feedings through her tube. At what age do they realize they are a little...

I need some help here! I have been looking to find a couple of costs associated with Cystic Fibrosis. I need the following and let me know if you know where I can find the information: Yearly average medical costs associated with Cystic Fibrosis Average cost of a lung transplant Thanks for...

I am going to put together a letter and information packet for the grievance board for my insurance company. We have a max of $1OK to cover our IVF and it is not enough to cover IVF and PGD. We are going to fight to have it covered under the arguement it would be cheaper for them to cover our...

We are having a brainstorming session for next year's Great Strides Walk. We want to make it bigger and better than this year. What do you like about your Great Strides Walk? What would you like to see at your Walk?

My daughter has cultured psuedomonas twice. We go in June 8th for a throat culture. It was my understanding we would go into the hospital if she cultures again. My dr says there is no proof that IV treatment would get rid of it. I feel like he is telling us not to do the hospital and just be...

I hope I can communicate this right. Here goes... My daughter has cultured psuedomonas twice. These are her first bad cultures. She is almost 2 1/2. We are finishing up TOBI and cipro now. We go into clinic in next Tuesday for a throat culture. We go on vacation on Friday morning for a...

So very random here: My daughters g-tube was loose yesterday morning. I checked the water level and it was fine. We went about our day and then it came out that evening. Here is the weird part, the end of it was black (the part of the g-tube that usually is inside). I called the dr, but...

A woman in my neighborhood has ruined my daughter's 2 year birthday party!! Her daughter was diagnosed with RSV on MONDAY of this week. She then thought it would be okay to send her to mother's day out on WEDNESDAY with all of the kids that were invited to my daughters birthday!!!! She also...

I am hitting a wall with my kiddo! She is almost 22 months old and will NOT try anything new. Here is the issue, she doesn't have to eat anything she doesn't want to b/c she knows she will be pumped afterwards through her gtube. Any suggestions????

Any recommendations for IVF/PGD doctors in the Dallas area?

Most of the time coming to this website I am really uplifted and given hope. But sometimes as a mom with a little cfer I get overwhelmed. I look at her and don't know the future. I want to think about her in high school, prom, college, married, with kids, etc, but I try not to go there. I...

I am having a very hard time giving my 1 1/2 yr old her enzymes. She is either refusing the enzymes or spitting them back out. What else have you used to mix with enzymes? Do you think it might just be an age/behavoiral thing?