My son was on EEN for about 5 weeks then switched to about 80% EN, 20% food. This was 4 years ago when he was 11 years old. We live in Los Angeles, and we did not have a lot of support when we started. I hope care teams realize how hard it is in the beginning but it does get easier. Patients and their families need a lot of support from figuring out where to get the supplies, how to work the equipment and most importantly help for the child in placing the NG tube. The best thing would be to have the family connect with another family who is already using EEN.

My son learned how to place the tube himself, and would just put it in every night and get most of his calories at night, with bolus feeds during the day when he would place the tube and take it out after the feed. It only took a few days for him to be able to do it himself with ease, but the first few nights were challenging.

The next challenge, once the tube and all the equipment become easy to use, is the difficulty of not eating within the family. We all felt like we could not eat in front of him so there was a lot of eating in our rooms, or when he was not around or at school. Every social occasion was difficult and often my son would get upset when we were at an event that revolved around food, and most do. I remember it was the super bowl and my son was so upset that we had to leave the party we were at. I think it’s manageable for sure but the social aspects of food, that never really changes. I think it got easier when he could count the days till he could eat again. And even being able to eat one meal a day made a big difference.


[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.]

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