. . .Lost. . .

Our daughter (21 months) has been having issues from day one. She is cognetively well pass her peers, and functioning at 2 1/2 years. However, she's always had feeding and thriving issues. She's been hospitalized four times from not eating, mild edema (hands & feet), febrile seizures (at 99.9 degrees), and hypothermia (94.7 degrees for no apparent reason). She's been diagnosed with a hole in her heart (ASD with RVD), duodenal ulcers, esphagus erosion, hiatal hernia, febrile seizures, high grades fevers (105) with no apparent reasoning, and failure to thrive. She's had a biopsy of her upper GI track. They found no helio-bacteria, they found a small number of esonophils, and nuetrophils.

The feeding tube dilemma has been on the table for almost a year now, however, they decided to try giving her periactin increase her appetite. It's been working wonderfully!! Yet, her new GI has tried taking her off of it and she stop eating/drinking all together. It's sad to think that she needs a medication to eat/drink.

Without her pepcid, her bowels literally burn her skin upon contact.

Without her prevacid she is absolutely miserable - won't eat, sleep, and when she is sleeping she doesn't want to get up, and she non-stop cries.

She also, on VSL #3 (probiotic) without it her stools are looser than normal, and VERY foul smelling.

They just don't know where to go with this anymore, and were being told to look into genetics. Any ideas would be helpful!!

Thank You!