My son is 7 years old and has Downs Syndrome. He is the joy of my life, but over the years we have had many challenges several of which are ongoing. My question has to do with his eating: he has had difficulty with feeding issues since birth but over the last few weeks a new behavior has developed. He tends to pocket food in his cheeks, especially meats, until he can no longer chew or swallow. The new behavior is that he completely shuts down at this point and refuses to attempt to swallow the food, even when offered soft foods (like yogurts) or a beverage, both of which helped in the past. He just stares into space and literally drools, refusing to attempt any more chewing or swallowing. As he is still delayed with his speech I am unable to ascertain from him if there is a problem but he does not seem to be in any pain or have any gagging or choking. He often will sit like this as long as I will allow until finally he spits the food out and refuses to eat any more of the meal. This has been happening more often, several times a week and often for every meal in a given day. No amount of positive reinforcement, fussing, or patient offering of favorite rewards have helped. I am very frustrated and don't know how to proceed. Is this a physiological issue involving structural problems with his tongue, throat, or soft pallate ( he has not been sick and I see no signs of inflammation in his throat) or is this a new behavioral issue? After finally spitting out the food he otherwise is back to himself, behavior wise. In the past he has seen gastrointerologists and had swallowing tests with no conclusive feedback or recommendations given. If anyone has any recommendations or advise I would appreciate it as I am not sure how to procede with this new issue.
I am sorry to hear that you are facing these problems. After reading your post it appears more like a behavioral issue than a real swallowing problem. Maybe he is bored with what he eats. Involving him in choosing his food, maybe in cooking, etc may help him become interested in eating. He may also enjoy company of other children and eat when they are around. If these steps fail then maybe you can discuss this with his doctor and counseling may help. Take care!
I have a 4yr old who is been fed via a mickey button, she chokes on any food that isn't completely pureed. I voiced concerns 2yrs ago and asked Drs at 2 different hospitals if they would investigate as I was sure it was a physical problem not just an aversion as they would have me believe. Finally, I've found someone to take my concerns seriously, and they have indeed found excess tissue under her larynx which could be the reason. I know you said your son had his swallow checked and it could be just a behavioral or a psychological problem, but i think it wouldn't do any harm to check it out again. It might that he has eaten something that hasn't been chewed properly and it scratched the back of his throat, so now he's scared it'll happen again? It's so difficult when communication is a problem, I know I always feel guilty if I don't know what's bothering my daughter, because as their mother's we feel we should be able to fix everything! I hope you get it sorted soon.
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