When we saw Ava's GI doctor at Boston Children's Hospital Thursday he was not happy with Ava's lack of weight gain. She was 19lbs 4oz. He did not even tell me where this puts her on the growth chart but I am sure it is close to the 1st percentile, if not off the chart for a child who is 30 months. He said that he feels it is likely that she has Russell Silver Syndrome and that it is important that we get calories into her whether that be by force or her own will. He gave us six weeks to get her to gain some weight and if she does not we are going to have to give her some additional feedings through and NG tube. When he told me this, my stomach dropped. Imagining my baby being forced to have a tube put into her nose and down to her stomach. I do not think she would leave it there and the thought of having to make sure she does breaks my heart. I asked him what he suggested we do in order to help her gain weight and he said suggested putting her on periactin. It is generally used as an antihistimine but its side affects include increased hunger and sleepiness, both of which help weight gain. I hate putting her on another medication, this makes four, but had to pick the lesser of two evils and adding another medication definitely beats out tube feedings. Anyways, we are currently working Ava up to her dose, and are already seeing it making a difference! She is definitely tired and irritable which is not great but her appetite is already definitely increasing! For lunch today she ate 4 1/2 chicken nuggets, 1/3 cup of applesauce with 2 tsps of her high calorie formula mixed in for added nutrition, 2/3 of a cheese stick, and 4oz of carnation instant breakfast made with whole milk. This is definitely the biggest meal she has eaten in her life! I am so proud of her and am crossing my fingers that it continues!!!
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