Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 >I do believe that R117H might be easier and maybe >better, but I just will NOT rely on it. > >Caroline >with 5 CF and Talau 10 (still not tested) > Hi Caroline, I agree with you one hundred percent on this. We were told to expect lots of things early on in Meagan's diagnosis based on her having R117H 7T, and yet at times her CF was starting to get so " typical " I felt like pulling out tufts of hair (mine, not hers, lol). She's doing great at the moment, but that's after aggressive treatment to deal with sinus disease, pseudomonas, etc. (and of course all the daily stuff like lung clearance, albuterol nebs when necessary, etc.). It's really the TOBI that's been the miracle for her, in terms of getting her really healthy again. Bottom line, CF is still CF, and none of us can take anything for granted. Our clinic has a couple of children with two copies of delta F508 who are pancreatic sufficient, and I've talked to several folks with R117H who are pancreatic insufficient. I know of two severe cases of CF in people with R117H (though also lots of mild and a couple super-mild cases, and a few in between), and on these lists I've talked to several people whose kiddos have mutations with bad reputations yet have been incredibly healthy. Any of us whose kids are doing great today could have a major exacerbation next week, or the folks whose kiddos have been struggling could find a new combination of meds that works great, and they could start doing much better. It's all so unpredictable. How's doing? Is he still having a rough time? Did you get any helpful information from the sputum cultures? I hope he's doing better. bye, , mom of Meagan 6 (cf, asthma) and Kailin 8 (asthma) Quote Link to comment Share on other sites More sharing options...
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