Search results

Hi Everyone... Quick question. I have two daughters with CF (16 and 12)... both Double Delta F508 but both very healthy, relatively speaking of course. I am ashamed to admit it but they have not received their flu shots yet (it has been a rough year with a couple of deaths in the family recently...

I was at the CF Center yesterday for a checkup with my daughters and our CF doc told us that they are going to be starting Phase 2 trials of the VX-809 drug specifically for people with Double Delta F508 this spring. She wants my 14 year old to participate. (the minimum age is 12 so my other...

I was at the CF Center yesterday for a checkup with my daughters and our CF doc told us that they are going to be starting Phase 2 trials of the VX-809 drug specifically for people with Double Delta F508 this spring. She wants my 14 year old to participate. (the minimum age is 12 so my other...

My daughters are on a program specifically for Texas families with children who have chronic health problems who make too much to qualify for Medicaid but not enough to cover all the medical expenses that we have. It is a government program but is completely independent of the parent's income...

A neighbor of mine is a school teacher with 2 sons, Tyler age 18 and Tanner age 14. (I don't know the family personally... just see them in passing really). Anyhow, the boys were visiting their father for Thanksgiving in Dallas (6 hours away) and on the way home their truck slid off the road...

I'm not sure if you all are familiar with the "Kid Kraddick in the Morning Show" or not, but each year they select a few families with chronically ill children to take on an all expenses paid Disneyworld dream vacation. Well, this year they selected my family!!! We are soooo excited...

I remember a post recently about the issue between Fairview Clinics in the Twin Cities and BCBSMN. I can't find the original post so I thought I'd just do a new one. I wanted to let you know that BCBSMN and Fairview reached an agreement today and Fairview will remain in network. Just thought...

After fighting for 2 1/2 years to get my first daughter diagnosed with CF, I lost a great deal of trust in doctors. I've worked for years to try to learn to trust them again... then... Last Friday I brought my younger daughter (with CF) in to the local ER for SEVERE stomach pains. I was...

<a target=_blank class=ftalternatingbarlinklarge href="http://http://lfpress.ca/newsstand/News/Local/2008/07/29/6293586-sun.html">Link to story</a> London scientists working with mice have discovered that by correcting an abnormal gene linked to cystic fibrosis the mouse has a normal two-year...

I just saw this on the news and thought I'd see if anyone else had read this... It's kind of odd but interesting... NEW YORK (Reuters Health) - Inhalation of a sugar called mannitol improves lung function in patients with cystic fibrosis, a serious genetic disorder characterized by abnormally...

I'm wondering if anyone can help me with an odd symptom my daughter is having. To preface, she is 9 years old, DDF508, but very healthy. She has never had a lung infection but has had multiple sinus surgeries. She is a little underweight but not to an extreme. Every once in a while she...

I had a call from the school nurse at the JR High my daughter attends late last week. She wanted to inform me that another child with CF had moved into the district and is going to the same school as Kaitlyn (same grade as well). We discussed the "3 feet rule" and the different bacteria we...

Does anyone know right off the top of your head where I could fine info online that talks about people with CF avoiding contact or staying 3 feet away from each other? I am at work and don't have enough time to go searching but I need to get some info ASAP. Thanks very much!!!

Yesterday a coworker of mine got a call from her daughter's preschool that her daughter was running a 103 degree temp and needed to be picked up from school. This coworker had taken off 3 days of work last week to run around so she decided she couldn't afford another day off so she picked up...

I want to preface by saying that I am usually a very "together" type of person who rarely breaks down, at least in front of anyone... I realize that's not always healthy, but I have a very hard time with emotions so I try really hard to keep them inside. But I am having a bit of a break down...

And how would I know if that applies to my daughters? They are both DDF508...but I have never been told anything about variant alleles... I was just reading some medical journal stuff about CF and came accross that term and wasn't really sure what it meant.... Thanks for any info...

My daughter, Kaitlyn, was complaining last night that she couldn't breath when she was lying down. She's never said that before and I wondered if anyone would have some idea what she was feeling and maybe what was causing it. She hasn't been feeling well for a week now... she's having...

Hi everyone... My daughter, Kacie, was recently approved for her Make A Wish (she's asking for a cruise which we will probably take in January)... She is so excited... Well a couple of weeks ago the Make A Wish Foundation called me and asked if they could use Kacie as the poster child for a...

My 12 year old, Kaitlyn, had her first picc line put in about 3 weeks ago. She just had it taken out last Thursday. The pharmacy had sent us a bunch of supplies (way too many) so apparently the girls decided to play dr today. I found them in the kitchen where Kaitlyn was putting a picc line...

Hi... My 12 year old, Kaitlyn, is going in next week for a tune-up. The plan is to do a PICC Line and keep her in pt for 3-4 days and then go home on IV's. She had 9 years of perfect health but has been hit very, very hard in the last 6 months. She HATES IV's... I don't know how she will...