Search results

Hello! We are planning a trip to Disney next summer. I know it is very early, but I wanted to get any tips/advice on places you have stayed with your CFer. I have heard something that Disney allows people with CF to not wait in line- is this true for their whole group?! Any hotels that are...

<P>Hello!  </P> <P>My daughter just turned 6 and at her last clinic they said since she is 6 we can consider adding Pulmozyme to her daily routine.  (Which right now is the vest twice a day, enzymes, and prilosec).  They said it can help with breathing, but Kate doesn't really struggle with that...

<P>Hello!  I have a new kindergartner (yikes!) this year.  The school nurse is great and we just met this summer to do a health plan for my daughter (we also have an IEP).  I just found out at kindergarten orientation tonight that they will go out to recess first for about 20 min. then straight...

<P>Hello,</P> <P> </P> <P>I have been getting more and more annoyed over the past year with CF services.  Overall I think they are great and very easy to deal with.  My one big problem is that my daughter's enzymes are left on our door despite the temps.  We live in Missouri so we have very hot...

I just spilled an entire vile of TOBI!  I am furious with myself because from what I can tell each vile is at least 100$ and I am freaking out it will mess up my daughter's treatment.  We are supposed to do 28 days, now I've messed that up.  Has this happened to anyone else and what did the dr...

Hello- My daughter takes Creon for her enzmes and when she started as a baby we were in the Wee Care program and received free enzymes.  Then we moved to the Solvay Cares where they pay your copay and you get a case of free drinks a month.  Now CF Services tells me they are no longer paying our...

Feeling so sad... My five year old daughter just cultured pseudomonas in a throat culture at clinic last week.  We were prescribed 2 weeks of Cipro and then 28 days TOBI.  Walgreens can't even get the TOBI until tomorrow so I am anxious that we are missing time!   Is the at home method what most...

Hello, I am having some bloodwork done for my daughter... Not CF related, but she is on the autism spectrum as well and it is for this. My question is, they could not get enough blood today. Needed about 7 or 8 vials, and only got 1 and a half so we have to go back tomorrow. We've never had...

Hello, We are taking a family vacation to the Lake of the Ozarks tomorrow with our extended family. I was curious if any of you allow your children to swim in lake water? We will have access to a pool which is where we will normally swim, but we are getting a boat one day so I am worried...

Hello, I am having quite a bit of trouble with my daughter and her stools! They have suddenly become very loose. If she has a pull up on they are orange around the outside and I even see yellow fat in them- terrible I know! She was just on augmentin for 14 days and I know that can cause bad...

Hi all, OK, my daughter is 4 and we are still potty training! Not fun at all, but she has a speech/lang. delay which has made this a long process. I think we are almost there, but everytime we do the vest she is having a bowel movement and can't make it to the bathroom! Of course it is...

Hello, I posted a couple weeks back and got awesome responses on going gluten free. I haven't made the switch yet, but my daughter is on the autism spectrum and I keep reading positive reviews on this diet. The tough part for us is going to be losing dairy. Kate is a HORRIBLE eater! I'm...

Hi all, This summer my entire family (grandparents, aunts, uncles, cousins, etc.) are taking a trip to a local lake. Should be fun and my dad is footing the bill for everyone (even more fun!) We've haven't been anywhere with the girls in the past year and a half since Kate has had her vest...

Hello, I am so stressed about my daughter's cough it is making me insane!! My daughter (who is 4 with CF) has been coughing since September. We have tried a Z-Pac from the reg. pediatrician- no change. Then we did about 10 days Bactrim- slight improvement. Then they did a chest x-ray and...

OK, I need a little help here because I am getting conflicting answers from the doctors office and pharmacists. My daughter takes Prilosec each day. Now she is taking augmentin for about the next month. Should I be spacing the two out? Just curious what you all do and have been told to do...

Hello, My daughter has had a cough on and off for a couple months. Antibiotics are not really helping, and her chest sounds clear and looks clear on the x-ray. At clinic yesterday the doctor thought she was wheezing, and her cough sounded like someone with ashthma. We are trying for five days...

Hi all, My daughter Kate is almost four and has been very healthy so far. I have a one year old that does not have CF and on her first day in daycare brought home a lovely green snot and cough. Kate ended up getting it almost a week later. Well, we are coming up on FOUR weeks now. Took her...

Hi all, I have a question for those of you that give your child Prilosec. We just switched to the capsules this week (I have to open them in applesauce but still better than having the pharm. make the dreaded compound) but I'm not sure when to give. With the liquid I just gave it to Kate at...

Has anyone heard anything else about the nonsense mutation drug PTC 124? It sounded so promising, but I didn't see it listed in the drug pipeline anymore. That has me worried. Just wondering if anyone has heard anything. Thanks! Zoe mom to Kate wCF

Hi all, Maybe I missed something here, but last I had heard the drug PTC 124 was really promising for those with mutations that are nonsense (I think that means they end in a X.) I was looking on the drug pipeline of the foundations website and I didn't see it mentioned at all! Is it renamed...