child's weight

My 19-month-old granddaughter was born with Goldenhars Syndrome, a somewhat "mild"  form as the only outward manifestations are eye and ear deformities that will be cosmetically treated later this year. My question has to do with her weight and nutrition. She eats a great deal and seems constantly hungry but is putting on very little weight. She weights 19.5 lbs. and had lost 1.5 lbs at her last exam. She seems otherwise energetic enough and was assessed as developmentally normal. She has had a couple of cases of pneumonia, a great deal of ear infections that resulted in ear tubes and a great deal of pus removed from them that even surprised the ENT. Her day care providers state that she eats everything on her plate, then tries to steal food from the other babies. We don't understand how such a voracious little eater can't gain weight and her GI doc, maxillo-facial specialist, and pediatrican don't seem very pro-active about it at all. In my opinion, a baby that is alway starving and not gaining weight, even losing it, needs some kind of intervention more specialized than drawing labs. She lives in Corpus Christ, TX., which I don't exactly consider a great up-to-date medical mecca. Am I being an overly anxious grandmother that is just second guessing all her specialists? A couple of RNs that I've spoken to have seemed shocked about this and spoken of malabsorption problems in the GI tract. Should I advise my daughter to needle her doctors to be more aggressive or to get new ones altogether?

[Renee Radenberg]

Her weight is below the 5th percentile for her age. I included guidelines for what an 18-24 month old child should eat daily: Dairy 4 feedings a day –Milk or breast milk (4oz), cheese (½ oz), yogurt (½ cup), or cottage cheese (¼ cup). Starch 4 feedings a day – Cereal (¼ cup), pasta (¼ cup), rice (¼ cup), bread (½ slice), or crackers (2). Fruits & Vegetables 4 feedings a day – Fruits (including 100% juice limited to only 4-6ozs) & Vegetables (¼ cup). Protein source 2 feedings a day – Meat or fish (1oz), egg (1), or beans (¼ cup). She should eat 3 meals and have snacks between meals using the foods above to be spread out throughout the day. Suggest giving her Pediasure or milkshakes (milk, ice cream, and frozen fruit blended together) in place of milk for extra calories and protein to help gain weight. If she continues not to gain weight with these changes then have her checked for possible malabsorption. Hoped this helped you.