Do we know what it is about the Noonan’s that causes feeding issues? Is it because of the small stature that they don’t need as much to eat or is it because they don’t eat as much and they’re bad eaters generally speaking and then that’s why they have a short stature?
We did originally start looking at the feeding difficulties and it’s almost like a neuro-muscular in-co-ordination – small children can’t chew and that’s later sometimes in children with Noonans where there’s a delayed maturation. There’s also sometimes a problem with the sensation of food in the mouth and the children will sort of “tongue-thrust” and push the food out. But I think it’s basically a neurological control of the feeding; it’s not because they’re small and eat less, and they tend in most cases to get enough nutrition in but will be cases where you need to tube feed children with Noonan’s to begin with and that group needs quite careful follow up from the nutritional point of view .
Question asked and answered at our family’s day 2016