Ok so here is our update! I switched her to the doc where my other kids go. She was not overly concerned about her weight because she showed about 10th% and a fairly steady curve. She did order a chest x-ray (came back negative), CBC, TSH, CMB & urinalysis. She was not concerned about CF due to the fact of only 2 respiratory illnesses in her 6 months. I do know from you wonderful people that she as well is not up to date on CF info thinking the newborn screen would cover it.
I kept a journal of feedings & bm's for a week, she had 17 stools and feeds every 3 hours= 8x/day. I am going to get the fecal fat test done to check for malabsorbtion. From weighing her after a feed she takes about 6oz-8oz/feed = 48-64oz in 24hours plus solids 2x/day.
The nurse called back today & all of her labs were normal except an elevated liver enzyme. Have any of you ever dealt with that before? We have an u/s on Tues. but I doubt that shows anything because my other daughter had the same thing for a year & after specialists & numerous tests never found a cause.
Do I need a referral to get her into a CF center or can I just schedule that on my own?
Thanks for helping me sort all of this out.