-Robbie puked from 2 months old-a few weeks ago, 20+ times a day (not spit-up, vomit, bad).
-He's been in the 14 pound range for 6 weeks now and has stayed the same weight for 3 weeks.
-I've tried medication, bottles, formula, feeding times, flavoring, EVERYTHING
-When anything food related touches his mouth he freaks out
-He hates drinking formula but he loves drinking water, and ice. Take away his ice, and he loses his mind
-He wakes up after 12 hours and could take or leave his bottle. He has no interest and no appetite.
-Despite all of this he is extraordinarily pleasant
My mom is visiting and she started researching appetite enhancers (specfically the medication, Megace, which you give to anorexic patients, cancer patients or any other patient who is not inclined to eat). Upon researching this we have stumbled upon Zinc deficiency and other vitamin and mineral deficiencies causing appetite suppression. Zinc, specifically, can cause appetite suppression and cause things to taste bitter. Iron deficiencies can cause a condition called PICA where the patient will crave non-nutritive things and often have perpetual craving to eat ice. Vitamin D deficiencies cause malabsorption and poor growth. Patients with renal issues are typically deficient in these areas. I also had a friend who spoke with a pediatrician who explained how common these issues are and how he was surprised that none of these ideas had been explored previously.
We've started with blood work to test for these deficiencies and hope that what we will find is that it is in fact the cause for his issues. The solution is simple, and would include supplementing these vitamins and minerals daily.
To be frank, it seems pretty lame that nobody has come up with this before (any of his 3 doctors) when it seems to be such a common side effect with children in his condition. Regardless, we are hoping for the best and that we have hit on something promising. Fingers crossed.
Also, on his free time he enjoys chopping and gathering firewood.