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I just realized I should probably post a new thread :) Abby's second sweat test results are in .... 88!!!! These last 3 were over 100!! When she was 2 it was 109! I am so excited and beyond happy!!!! God is so good!!! Prayers were for sure answered today!! Party at the our house tonight!!!

I've quit hearing of anyone trying Kalydeco off label. Is there anyone out there that is taking it or plans on trying it off label? I'm just so curious! And it seems to have kinda died down all of a sudden. Anyone out there trying but hitting a wall?

Has anyone heard anything further on the PTC124?

I have seen so many post today that I so badly wanted to hit a "like" button too! You know when you really don't have anything to add to the conversation but just love what someone else has posted!!! Just a thought :)

Hey yall we need some prayers today! Lezly Hodge for those of you who don't know this amazing young lady is 22 years old and has a heart of gold. She was recently placed in ICU on a ventilator following having a feeding tube placed. Recent update from Lezly's family states, "Lezly coded but...

I was told this is a very rare mutation and just wondering if anyone else on this forum has this mutation. :)

Well very sad news! Her sweats are still above 100 :( we are so sad and confused! He also gave us her 2nd mutation, it is a class I stop mutation called 2585 delT or R785X. Our dr said that all of our wonderful results are just a coincident and says that Kalydeco is not working for her. I'm...

So..I called Texas Children's to get Abby's sweat test numbers mailed to me so I would have something to compare to and was HUGELY disappointed in what they told me!!! August of 2007 at Seaton Hospital they measured her sweat and got an 89. Then in Dec of 2007 TX Childrens did another sweat test...

Hi guys, I just watched 65 Red Roses and was wondering what you all thought of it or took away from it. My husband did not want to watch it which I totally understand, I however crave knowledge!! Yes, I cried the whole way through it but I feel like I came out understanding so much more about...

I am wondering if any of you out there taking Kalydeco that do not have G551D had before and after sweat chloride checked. And if so would you mind sharing your experience with me? Abby will be getting her post Kalydeco sweat test done the latter part of July and was just kind of wondering what...

She started taking Kalydeco on thursday. And so far we haven't noticed anything other than she is running 100 fever, which could be normal for her since she was starting to run a slight fever before we started. She has no cough, no sinus drainage, no nothing. I keep asking her if anything feels...

I am beside myself!! God is so Good!!! Abby gets to try Kalydeco!! We go in for sweat test on Tuesday and then we will start taking it on Thursday!!!! Praise God!! And many thanks to all who helped me!!!! Without all of your wonderful posts and information we would not be trying this miracle...

We went Friday for a regular clinic appt and to discuss getting a trial prescription of Kalydeco. Abby just finished a round of Clindamycin on Wednesday which apparently helped because she had the best PFT's she's ever had!!! So very excited about that!! Her normal range FEV1 stays around 1.25...

I purchased a spirometer about a month ago from a company called Allergy Be Gone on Amazon in the hopes that I could keep up with Abby's lungs. I have only had it about a week because it shipped from over seas. Today I got an email from cystic fibrosis.com to both of my email addresses that I...

<span style="font-family: 'Times New Roman', serif; font-size: small;"><span><span style="color: #1f497d; font-family: Calibri, sans-serif; font-size: x-small;"><span>So frustrated...here I thought that Abby's testing had starterd possibly 30 days ago. We go on the 15th to a clinic where we are...

Sorry I don't mean to pry. I am just so very interested on how some of you taking it off label are doing. Whether good or bad. I know that some of you have been on it for a while now and just wondering how you are feeling. We still have not got to find out Abby's second mutation. I'm on pins and...

When you google this company, their are a lot of bad things about this company.  The guy that came out showed us lots of positive things, and said that they have been in business for a long time.  Please, if you are insured with them would you mind telling me your experience with them just so I...

We are super excited this morning we are meeting with Combined Insurance this afternoon to get an insurance quote to help us pay for the surgeries, hospital stays, and ER visits!  I will have to let you all know if they are still letting people with CF in the door.  Just curious has anyone...

I am just curious because it is bothering me.  How old were some of you when you found out that CF meant a shorter life expectancy?  How did you find out and did it affect your personality?  My little one is only 6 right now and is the brightest little ray of sunshine you will ever meet, even...