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Cystic Fibrosis Message Board


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Our 18 m/o daughter has been under the care of doctors for “failure to thrive” and have yet been able to come up with a diagnosis.

Her weight has been between 16 and 17 pounds for 10 months. She was a full term baby with a birth weight of 6 lbs. 11 oz. She was breast fed for 1 year with baby cereal being introduced at 4 m/o. She has always had irritability and diarrhea with dairy whether through breast milk or taken directly. She has never been able to handle any formulas whether milk or soy based except recently she has handled Pediatric EO 28. She is supposed to be drinking 24 oz, but doesn’t like it that much and drinks around 8 oz/day. Around 8-10 m/o she refused to eat solids for about 2 months straight. After that and up until now she has an enormous appetite...2 1/2 times the normal calories according to a food recall we did. She was referred to a pediatric GI at Children’s Hospital of Pittsburgh due to a suspicion of Celiac Disease. The two primary blood tests were (-) and the antigliadin IgG and IgA were (+). Upper endoscopy was (-). Celiac genetic compatibility test (-). Sweat test and infant blood screening panel for CF were (-). Food allergy tests (-). Growth hormone tests (-). Parasite tests (-). Liver, kidney, and pancreas function tests (-). She was referred to a cardiologist where an ASD was ruled out (EKG -). She was on a gluten, milk, and soy free diet for about 5 weeks and did not gain significant weight. She had an MRI to r/o diencephalon syndrome/tumor against hypothalamus and it was (-). Her weight dropped a couple of ounces on this day and the GI wanted to admit her to the hospital, but the pediatrician from the Diagnostic Referral Center said that she didn't want to because of the risk of getting RSV or an intestinal flu in the hospital. She wants to wait 2-4 weeks before admitting her for observation. Since the genetic compatibility test for celiac disease came back (-), she is no longer on the gluten free diet. We reintroduced milk and she had an extreme amount of irritability and diarrhea. After this we discontinued using milk. We are now in the process of researching a second opinion since all three doctors that we are dealing stated that they don't know what to do and encourage a second opinion. Does this sound like it could be CF?







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