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Abby struggled with this for years. I see that your son is a DDF508. After Abby started taking Kalydeco...her sinus problems completely went away. Have you quizzed your dr about the thought of trying Orkambi off label? Not sure if you are even comfortable with that but I think it is worth...

Sorry guys I've been so busy that I haven't checked back in! We received the final culture results and the only thing that she grew was the H-flu. They treated her with augmentin and prednisone in case of inflammation in the smaller airways and we will go in on the 8th to see how she is doing...

Sorry guys!! I was so busy at work when Jeanne was so sweet enough to upload these for me and then we went on vacation with my inlaws for their 50th wedding anniversary!! Crazy busy!! Anyhow I wanted to share with you guys the amazing results that we have gotten back from Abby's last bronch...

I haven't logged in a while and just saw this. Abby is not ddf508, so does my voice or experience with Abby help? I couldn't post pics on here of her last bronch that we just did but the results were amazing! Blew us away amazing! If I can help I want to! Let me know. :)

If you will PM me your email address I will send you a slide show about protein digestion put on by a couple of doctors who studied this. It is really good.

I couldn't agree more Gammaw! :)

I think I got everyone. Let me know if you didn't get it. :)

Sorry...yes. He suggested that maybe we should provide a high protein snack 2 to 3 hours after meals, and give a few enzymes depending on how you normally take your enzymes for any fat intake that you get with your snack. But of course I would also consult your dietician and get their input on...

Ok I think I have emailed everyone. Let me know if I missed anyone :)

I think I have sent it out to everyone. Let me know if you didn't get it. :)

I don't think this is showing up...so if anyone is interested I will be glad to email it. :)

Just wanted to make sure you saw my response on the other one. :)

Hi ladybird! I don't have any medical journals..but I do have a 9 year old that has been taking Kalydeco for 2 years now with great success. My doctors are not really making calls about it but not sure that they wouldn't answer questions if your doctor was to call and maybe persuade them too...

Hey guys a little while ago we were blessed enough to be invited to a fantastic CF meeting with 2 very incredible Dr's. I wish I had the audio to go with this...but I did get this slide and if you have a minute I highly recommend you take a look at it. It suggest that Creon does not dissolve...

Hi Leah! So glad you are feeling better! It was super crazy and scary! I know that they always did a CT on her and that's how they would let us know that she needed another surgery but not sure what they saw. Guess I should have asked looking back....I was just so panicked over everything...

Leah..I would be worried if you are having problems with your eyes. If it continues I would go see an ENT that is familiar with CF. I don't want to scare you but Abby's polyps were actually pushing on her eyes because they had gotten so bad it broke through the bone which is serious. If it is...

This is fantastic!! I carry around a HUGE binder with all this information. I love the thought of an app like this!!! Unfortunately I haven't updated my phone yet. I would love for you to add a way to keep up with the Fev25-75. I have found that the small airways are just as important...

Oh no!! We can handle it when the vest goes out but not the nebulizer!! Hugs for all the frustration!! Ladies we went to a meeting with 2 A&M Doctors/Scientist that really shed a whole lot of new light on things that I think we should have known as parents from the get go. They video'd the...

Hi Heather!! I pm'd you! :) Excited to meet you!!

I just read that you are in Texas. I wanted to let you know that Texas Children's Hospital is amazing. They have state of the art equipment and caring doctors. And as far as CF goes we have been very pleased with them keeping up with all the latest technology and research. I hope that you...