My son just re-started EEN less than a week ago. It is his 3rd time using this to reduce his inflammation; he is now 5 years old. One thing I wish is that people could advise on the management of tube feeding at school; nobody seems to know about how this is managed in mainstream school. I also wish they understood the need for speed! Equipment deliveries, training for schools, pumps rather than gravity feeds….
I also wish all care givers understood how beneficial this can be as not everyone recognizes the positive effect EEN can have.
[Editor’s note: We asked our community to share their stories of Exclusive Enteral Nutrition (EEN) and what they wished people understood about it. We received three stories; this is one of them.]