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Super Man's Mommy let me know when you hear from the doctor :) Gibson75 I wish I could show you a pic of Abby before we found out....she looked like a little pregnant girl...it looked so painful (but Abby has the highest pain tolerance I've EVER seen!! If she cries or complains you better...

Gibson75...Way to go mom!!!! Sure sounds like you have something to be concerned about! Does his tummy swell at all? You might wait for Aboveallislove to reply cause she is more familiar with the tummy issues and maybe she can help you to ease his pain until you can get your hands on some...

You're right!! Never thought of it that way! I guess I am just thinking of Abby and how her first genetic screening said that she was a carrier...thankfully her sweat test confirmed CF or we might have been in Limbo too :) Thanks!!! Hope all is well on your end!!! March 1st is coming up...

It is an accreditted center which is even more baffling as to why he would only run a 39 panel....I wonder if the nurse misunderstood? Because that is just crazy!! I really hope she misunderstood.

Anyone can be prescribed Kalydeco.....anyone....you just have to get your doctor on board to give you the prescription....then it is up to your insurance company. Those are the only 2 obstacles and you won't know if they are obstacles unless you try :) I'm so very glad we did!!

If you go to the home tab at the top of the page it will direct you to another page ... In the left hand corner will be find a cf center... You can click on that to see if the hospital or your doctor is listed. I know TX Children's is and also Scott and White in Temple... If your doctor is not...

We are extra blessed in that our insurance covers it....in fact we are covered for sure for 2 years so they told me :) We have Humana and our out of pocket is $100. Well worth every tiny cent!!

Hand in there girl...your little one really is super man!!! Please post if you can help shed some light or if you went through something similiar. She has experienced more in 1 week than I have in many years!! The doctors and nurses are really giving her poor baby the blues :(

We have Humana and all that was required was a prior authorization which was a very small questionaire that the dr filled out and faxed in and BOOM we have approved Kalydeco for 2 years!! I feel very blessed. I hope you start feeling better no matter what!!!

Good advice Bill :) I know I would be upset if someone that I love wasn't completely honest with me and not because it would change the way I feel about them just so I can fully travel the road with them :)

Since Abby does not have the right mutation...it is only a helper for her...but a huge helper. She has a lot less mucus but still does all of the same regimens that we did before. She still takes the same amount of enzymes and all of the same breathing treatments that she did before. It is...

WOW!!!! Thank you so much for responding....she is just a wrecked little bundle right now :( You know the stage where you don't care if he has it or not you just want him to get better.

Ok so my friend that has the 20 month old took him for a sweat test yesterday and they had trouble getting enough sweat. What little they did collect came back with a 44. Ok friends recap: He's weight is 80% and falling his height is 45%, he has had 3 sinus surgeries, has a PICC line right...

Doug that is amazing!!! You have a beautiful family!!!

Cgerhardt that is what they use to try to tell me about Abby too.

That is so wonderful!!! Congratulations hardly seems like a big enough word!!! So very happy for you!!!!

I again agree!!! I can't tell you what a difference it made in Abby who does not have the right mutations...I can not imagine going back to the way things were!! All they can do is tell you no. I wrote a detailed summary of how she did on it in CFTR Modulation and Gene Therapy Talk this...

Oh it is all it's cracked up to be!! We just have nothing new to report :) Abby has been on off-label Kalydeco since June 28, 2012. We live in TX and the cold fronts this year have been brutal and not with the cold but with bringing allergens in!! So she has been sick along with everyone...

Kaylinsmom don't forget to tell her doctors of the headaches as it can be due to sinus polyps which if left untreated can be harmful. My daughters only complaint is headaches and it is because her polyps swell when she gets overheated and cause her head to hurt. I'm not saying that is what is...

I agree with Aboveallislove! Pancreatic sufficient sounds like a winner!! Abby is not pancreatic sufficient and it still helped her...not the way that it helped the G551D's but enough so that I can't imagine going back!! :)