rejecting gastronomy feeding

[benji99]

My nine year old grandson has started pulling his mic key feeding tube out, he was having 6 x 200mls enrich plus, now he is down to two. He has had 5 open heart operations, at two weeks old he had no oxygen for 9 minutes after a pump malfunctioned after first open heart surgery.  Is there any help available to help Ben to eat, he has had x rays and his gullet is clear. There is no reason why he cant eat, we think it is behavioural. He has speech and communication problems but, is able to tell us that he doesnt want his "button" and keeps pulling it out with the result the contents of his stomach run out.  This has only happened in the last two weeks. Help!

[Renee Radenberg]

His weight is just between the 3rd and 5th percentile and his height is just under the 50th percentile for his age. His height is normal and due to the low weight he most appears very thin. I do not know his total medical issues, except his low weight and cardiac surgery from what you stated. Quite often when a child is on tube feeds during the day they are not 'hungry' to eat (the feeding formula fills them up) so they do not eat at meals. If he is allowed to eat regular foods, suggest having him be tube feed at night (hopefully he will not pull it out) and try food during the day. Maybe he will start to eat some foods because he will not feel full from the tube feeds.

[Renee Radenberg]

You do not want to starve a child for any length of time regardless if it is under medical supervision or not. Some children do forget how to eat when they have been on tube feeding for a very long time of their lives and need physical therapy to teach them how to eat. I do not know if this is the case with your grandson because you did not state how long he has been on tube feed. Night time feeding and behavior modifications helps the most to increase eating during the day.

[benji99]

I thought there may be some medical place that could starve him under medical supervision for a few weeks to try to get him to want to eat. We have been told there is none.  I find this hard to take in , surely our grandson is not the only child who does not eat.  There must be some help out there?  We are truly desperate.