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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


Hi, I don't know if I can be of any help but can raise a few questions and offer my experience. My youngest daughter was borderline too but they were able to match her up against her older sister who was diagnosed at age 3, in fact just one week before my youngest was born. Based on the genetec testing they said they were 99% sure she had CF too. So they started her on enzymes right then. Now my oldest had no symptoms at all until about two or so months before our youngest was born. So, we have one that didn't get enzymes for three years and one that started them at just a few days old. As far as the lungs go, she did not start having any problems for another 5 years, one hospitalization and then not another one for another 3. As for our youngest she started treatment from birth but breathing treatments didn't start regularly until just last year,(she's 12 now). I think it's just the difference in the progression for my two. Here's a question if you haven't asked it already. If your son already has GI and respiratory problems, is he seeing a pulmonologist and/or a GI doc? Does he have malabsorbtion or failure to thrive? If so, can the GI doc. put him on some enzymes? If he is seeing a pulmonologist or I guess even a family practice or pediatician, ask if he might benefit from regular albuterol treatment and if percussion would do any harm while you wait the next couple of weeks. I don't know if you already brought up these questions with your sons doctor but it's a suggestion if you haven't thought of it. A couple of the ways to tell if there is or might be a malabsorbtion problem is fatty or greasy stools, really exceptionally smelly, a bloated or extended belly, perhaps even an aversion to certain fatty foods. Our oldest had the extended tummy (could've been a clue).To this day she has a hard time gaining weight(she's 15 now). Was it due to lack of enzymes for three years? We don't know, put most would probably say "yes". As for my youngest, she was tested three times before the age of 2, all borderline, they/we didn't think to test her again until last year, she's 12 now. I hope I've been of some help, if only thoughts to ask your sons doctor. Much luck

Hi Chacha. Thanks so much for your reply. We go to a new GI specialist this Thursday. After I'm sure they will send us to a pulmonologist. I'm actually terrified because my son has had symptoms since the first month. Does this mean his disease has progressed more? as opposed to someone whose symptoms appeared at age 5? Our son is also adopted and we don't know much about his birthfather. I'm just terribly afraid that his disease has progressed so much that it would be hard to help him.
By the way, his stools have always been greasy and really smelly. Does your daughter have anemia also?
My son has had this for years despite iron treatments.

Look forward to hearing from you.
Susan





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