I'm really concerned about a doctor who says "doesn't look like CF" because that just isn't accurate -- obviously she has not seen many kids with CF. Many doctors who lack experience with CF make stupid comments.
But I understand your reasons for wanting to stick it out with her, and it is fine to let her rule out other things - but it sounds like she might also be putting off sweat testing because she knows there isn't anyone qualified to do it close to you. Getting a sweat test isn't that big of a deal, but you do want to make sure it is done at an accredited site, otherwise you are just asking for more inconsistencies and false numbers - sorry to say, you might just have to make the trip to the accredited center.
I doubt if she would be very open to trying this, but you could ask if she would be willing to let you try giving your daughter some enzymes - they will not hurt her even if she doesn't have CF and she might just start gaining weight. She could also order some fecal testing which would also help to rule out CF - that will show if your daughter is pancreatic insufficient or not. If she is, this would point to CF and explain why she is having trouble gaining weight.
Does she seem to eat more than other kids her age? Does she have diarrhea and/or oily greasy orangeish color really really smelly poo? These would also sound like CF symptoms from pancreatic insufficancy.
Best wishes !
But I understand your reasons for wanting to stick it out with her, and it is fine to let her rule out other things - but it sounds like she might also be putting off sweat testing because she knows there isn't anyone qualified to do it close to you. Getting a sweat test isn't that big of a deal, but you do want to make sure it is done at an accredited site, otherwise you are just asking for more inconsistencies and false numbers - sorry to say, you might just have to make the trip to the accredited center.
I doubt if she would be very open to trying this, but you could ask if she would be willing to let you try giving your daughter some enzymes - they will not hurt her even if she doesn't have CF and she might just start gaining weight. She could also order some fecal testing which would also help to rule out CF - that will show if your daughter is pancreatic insufficient or not. If she is, this would point to CF and explain why she is having trouble gaining weight.
Does she seem to eat more than other kids her age? Does she have diarrhea and/or oily greasy orangeish color really really smelly poo? These would also sound like CF symptoms from pancreatic insufficancy.
Best wishes !