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I agree with the emailing a friend and using this website. It is so meaningful to talk to someone who understands that you are not defending yourself or reexplaining everything. And I can not imagine the kind of stress you must be under but what a beautiful family you must have...

Wow!! Always figured that there were more than just 2 of us on here with 2585delT....maybe I was wrong unless they just haven't posted their mutation. There are only 12 including my half pint that are in the CF database. Thanks for posting Ennio :)

Reading your post almost broke my heart!! I can not imagine! I don't have an answer to your question...I just wanted to let you know I will keep you and your loved one in my prayers. And I am so sorry for what you are going through! :'(

I have 2 of them. I have the Piko-1, and I loved it until it went fruity on me. It was very accurate until it flipped out...I now have a SpiroPd...and at first was impressed with it but now not so sure. I like that I can download the results however it doesn't pick up when she coughs like it...

Age you totally just made me laugh out loud!! I love the salt lick comment!!!

OK so an update..... he had a repeat sweat test yesterday and the results were 35 & 41. He also got allergy tested and is basically allergic to everything! Poor baby!! The dr is going to meet with her on Tuesday...Please keep them in your thoughts and prayers!

I was always told only do a CT scan if there is something to be looking for and never just because. Abby has had 8 CT scans and she is 7...all of these were necessary to be treated. But I am very cautious with doing them and always make sure that they have to be done. I have turned them down...

Loved it!! You sound very strong and inspiring!!! Your 2 babies are lucky to have you!

Thanks Ennio!! I just updated my profile :)

My little one wouldn't know to complain of the things you just mentioned but I did think of another side effect I wanted to add. Excessive ear wax...weird...but doesn't seem to cause a problem. Hope you get to feeling better!!

We use to do the potty thing before we were diagnosed, and I remember thinking how awful it was. We carried a little kids potty in the back of the suburban because where we live and on the way to dr appt's 3 hours away there is just beautiful country side with NO bathrooms!! And even in town...

Me too!! :)

Hi JustaCFmom!! Thanks so much for responding! Abby does just the regular neli sinus rinse where I squirt the warm saline solution up one side at a time and blow it out. I would be worried that she would have difficulty breathing it out her nose...not sure....just thinking out loud. Does...

This has been a rough year with the unpredictable weather and constant stream of cold fronts changing what allergens we are breathing in...that being said ....When in doubt call. I would go ahead and call..also I would probably ask them if they feel like sinus' rinses would help him. If it is...

No problem :) I am just so sad for my dear friend and wish the dr's would try to get her answers sooner :) It's so hard watching your baby suffer when you are suppose to take care of them and make everything all better, just breaks my heart for her because I've been there done that just like...

I have a general question about it...Abby is 7 and has always had really troublesome sinus' .... she still uses the mask because I feel like the Hypersal helps her sinus' as well, but I'm not sure. Does anyone have any thoughts on switching to the mouth piece only like this device??

Hi Bill, if I'm not mistaken I read an article that tells that he is actually the CF Director at Dell's. I guess he just doesn't see what we all see. :( But he is doing a repeat sweat test and I feel like it will have to come back probably around the same maybe a little higher and then she...

Ok so update: The test results are back for the 39 mutations and of course he was negative for any of those 39...so they are going to do a repeat sweat test because the Dr is convinced that the sweat test was incorrect because he was dehydrated. Ughhh!!!! Poor mom!!!! Any thoughts anyone??

We have an appointment...and if she is culturing something from before (MRSA, Psuedo, ect) we get put right in a room, if not we sit in the non crowded waiting room with a mask for at the most 10 minutes...then we go to do PFT's and then get sat in a room where everyone comes to us. The whole...

TreasureGoddess we are so blessed!! I hope that your doctor will help you do one of the other. If you need help from me I don't mind sharing Abby's story or her sweat test' or her PFT's and BMI's. I am all for everyone trying something that can totally change their lives for the better...