Recent content by Jenk9998

We go back to the doctor's in two weeks. I will know more then.

Thank you for the replies. We are going to talk to the doctor.

Thank you for all this information! Yes, they tested for the common 32. She has also had a whole xemone sequencing. Thanks, Jenn

Brief history: My daughter is four. She has been diagnosed with failure to thrive and short stature (despite good eating habits and her height is much smaller than they would estimate based on family history). She is below 0% for weight on the growth charts and below 3% for height. She has had...

Gibson75- I have been told my daughter falls in "grey area" by more than one doctor, too.

The doctor did say this could happen. She said it was very rare for a child with a "healthy immune system" to get. However, she also has other respiratory symptoms. We see lots of different doctors (GI, Endo, genetics, etc)

Thank you for responding. She did have the fecal fat test in June 2016 and it was fine. As of now, she is being treated as if it's CF because they are trying to get rid of the pseudomonas. I just think there are too many factors to ignore (poor weight gain despite eating a lot, intermittent...

I am looking for answers...story of my life! My daughter (age 4) has a pseudomonas aeruginosa infection in her lungs and is taking inhaled antibiotics morning and night (Tobi). Before this lung infection, we have seen several doctors looking for answers for other issues. It all started because...

Thank you for all your responses. I got a call today from the doctors office. My daughter's genetic test came back "good" so they are ruling out CF. They said this is good news but there are a lot of questions now. She still has the symptoms. She still has the pseudomonas infection and is on...

Thank you for your response. I used the link you provided, and I was happy to know the hospital we attend and the specific doctor my daughter sees was the first place/person to pop up under my search. There are not other places in proximity. I think waiting is the hardest part. I know genetics...

Thank you for your responses. Bree did have a sweat test at a certified center. Her sweat test number was 33. They said this is on the higher side of what they consider “normal.” She said kids that present more than one symptom (poor growth despite a healthy appetite, repeated lung infections...

Hi Everyone. A brief history. About two years ago, doctors started to realize that my daughter was "small" for her age. (She is now four). This led us to Endo and GI doctors. They ran tests and never came up with anything concrete. Then about four months ago, she started producing mucus. She...