hollylee11
New member
Hi everyone. My daughter is nearly 2.5 years old and recently I have begun to suspect CF. She eats and eats and eats (a LOT-- often more or the same quantities as me) but gains weight more slowly than I would think her diet would require. Her weight is currently good (70% percentile) but her height has slowed from 90th percentile to 25th in the past 6 months. Her stools are sometimes normal, but sometimes loose and undigested, and sometimes they have a foul smell and/or mucus. Another curious thing is that when she cries, her tears dry in white streaks that almost look like scattered dried salt. She also sweats a lot when she sleeps (but doesn't taste excessively salty to me despite my persistent licking of her forehead... let me tell you, she LOVES that). :/ She also gets a lot of colds and her nasal turbinates are swollen recently (not the same thing as polyps). She currently has a cough from her last cold but beyond that hasn't had any lung problems yet.
But here's the thing: all testing done so far has been negative. She passed two newborn IRT screens (our state requires two), with values of 58 and 19, respectively. I pushed and pushed her pedi for a sweat test (done at an accredited CF center) and the result was very low, at 10. She has also had a fecal fat test done although I have some doubts about it since we were not given good dietary instructions from the doctor. Those results were normal, even low. However she also had a fecal elastase test done that, while above the cut-off level of 200/g, was just barely above, at 210/g. That has me concerned although the doctor said that less than optimal/ low normal numbers can be from residual inflammation in the gut lining which takes months to resolve. She previously had very high levels of inflammation in her gut as noted by a stool test for lysozymes due to food allergies and sensitivities, although these have diminished significantly in recent months.
I should also mention she got tested for celiac too and that was negative, but because she doesn't eat much gluten I am not sure how accurate that was either. I am getting frustrated trying to figure out what is going on, but we have been fobbed off by a recent pediatric GI visit.
I am trying to push for genetic testing but thus far, every doctor I talk to about it is treating me like a neurotic mother, or worse, a complete lunatic. Does this sound like CF to you, or something else? And, if I should keep pushing, any tips for maximum efficacy?
But here's the thing: all testing done so far has been negative. She passed two newborn IRT screens (our state requires two), with values of 58 and 19, respectively. I pushed and pushed her pedi for a sweat test (done at an accredited CF center) and the result was very low, at 10. She has also had a fecal fat test done although I have some doubts about it since we were not given good dietary instructions from the doctor. Those results were normal, even low. However she also had a fecal elastase test done that, while above the cut-off level of 200/g, was just barely above, at 210/g. That has me concerned although the doctor said that less than optimal/ low normal numbers can be from residual inflammation in the gut lining which takes months to resolve. She previously had very high levels of inflammation in her gut as noted by a stool test for lysozymes due to food allergies and sensitivities, although these have diminished significantly in recent months.
I should also mention she got tested for celiac too and that was negative, but because she doesn't eat much gluten I am not sure how accurate that was either. I am getting frustrated trying to figure out what is going on, but we have been fobbed off by a recent pediatric GI visit.
I am trying to push for genetic testing but thus far, every doctor I talk to about it is treating me like a neurotic mother, or worse, a complete lunatic. Does this sound like CF to you, or something else? And, if I should keep pushing, any tips for maximum efficacy?