 grandkids with cf?
My granddaughter is almost 3 yrs old and has been under a gastro specialist since she was 14 months. He has done 3 sweat chloride tests-all borderline. She has been on Creon since the small bowel biopsies were negative for celiac. She is slowly gaining weight, but has not put on any in the last 6+ months. She is hanging at 26 lbs., but has put on 2 1/2 inches in this time. We are now facing a possible feeding tube. The gastro guy won't say it is CF, but every time we see him he wants to know if she has been tested! Now, I have a 9 week old grandson with GERD and they have gone through all the feeding possibilities and ended up on Pregestimil. He was allergic to breastmilk (colic and rash), soy, regular. On Nutramigen, the rash and colic got better, but he wouldn't have any stools for days. On the Pregestimil, he is perfectly happy and no tummy aches. Has anyone had experience with this formula, and does anyone have ideas for feeding the 2yr old? She will only eat chicken when it comes to meat and hates high fat foods! They give her an awful stomach ache even with the Creon 20 at all meals and snacks.
Rosebud's Grammy
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