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This is great Jeanne!!

Just another FYI .... Gentamycin is another antibiotic that can cause hearing loss.

Oh... ok it is a place for people to talk about their mutations....that's brilliant!!!

May I ask what your blog is ... so I can read more so more well informed?

OK color me stupid but I have no clue what that means. I even googled it and still have no idea LOL!! So just in case I'm not the only one out there who is clueless...what is DNA guilds? Thanks :)

Justinsmama you have helped me out greatly!! I have a dear friend right now that is in diagnostic limbo. She is unsure of everything and all doctors. Her son is 20 months old (absolutely precious!!) He has had 3 sinus surgeries and his blood levels have been continually low for no reason...

Abby does that when she is fixing to get sinus issues. Sometimes it goes away on its own and other times we end up on meds for sinus infection. But that's always my indicator that something is fixin to happen.

Thanks for the tip!!!

We use to have the same problem with the smoking. But even before Abby was born...I am highly allergic and would be sick for days after visiting my in laws that live 15 minutes away. They would not care at all. I took it for my husband but when Abby came around I refused to come over and then...

Congrats MELrod2004!! I totally agree nothing better than a great attitude in trust in God!! Best Wishes!!!

I get Vitamax and Pediasure free simply by using Creon as our enzyme through a company called CFCareForward. You can use any pharmacy. Your doctors office should be able to get you more information on it. I have this phone number when I am out of the order form 1-855-227-3493 and I believe it...

Hi zamanka!! I am sorry you are in this position :( First thing did your husband get seen by an a CF center or just a hospital? I would advise you to find out what your husbands mutations are.....him not being diagnosed until he was 32 points to a milder mutation which could greatly benefit...

That is so sad :( And I cannot imagine Abby going that long with out those 2 meds!!! I would be fit to be tied! I would probably be sitting in their office singing loudly until they got me her prescriptions! That is unacceptable. I don't have any suggestions other than find a new adult...

lildenny....I have learned all I know from these wonderful ladies on here who helped me through my crisis :) And no matter what your decision we will back you 100% so please keep us updated. And I'm just so very thankful that it is not me making that decision because I would be a basket case...

This is Abby's mutation and the info that Sandy was sweet enough to explain. Hope it makes since and sheds some light on how it works. It helped me see :) Yes, 2585delT is a frameshift. If it were a stop mutation it would have an x at the end (like W1282X does). It is confusing because the...

I hate to say it but I actually understand it :) Sandy was nice enough to brake it down in dummy terms for me, but yes at first I was the same way....and you just totally caught me off guard and had me rolling!!! I thought there is no way that she just said wth!!! That was a good laugh for...

Also if you want to see more people talking about this second mutation...lots of info comes up under google if you just type in 1154instc and you can see and maybe connect with some of the ones that have that same mutation.

Just keep in mind that every insurance plan is different. For instance we have Humana but I know another that tried to get it off label and they had Humana as well. We (thank you Jesus) were approved and they were declined, so I caution you about doctors not trying because 1 insurance turned...

Oops!! I completely goofed that up!! It was March 1, 2012!! I am still not use to being in 2013 LOL!!! So just one year but super excited about it!!!

I don't know if this is true for everyone but when Abby was that age she would eat 2 to 3 times as much food as I would and drink until I'm surprised she didn't grow gills! Her diapers were very loose and very frequent and there's no way to describe the smell of those diapers! But what upset...