A lot of people, myself included, have a really hard time understanding Owen’s feeding issues. Just before sitting down to write this post, I was catching up on Pinterest and salivating at all the delicious pictures a friend was posting. It’s hard for me to fathom that seeing food does not trigger a hunger response in Owen. Not only does the image of food not do it for him, neither do hours and hours of an empty stomach. If hunger registers in Owen’s brain, I’ve not seen him express it through a behavior change.
There are often two responses that people have regarding Owen’s eating.
- When he’s hungry enough, he’ll eat OR
- He’s just picky (or stubborn)
In fact, those two statements describe picky eaters. Picky eaters will eat take in adequate nutrition and continue to thrive while being selective with their food choices. In general, picky eaters will not tire of their favorite food choices and can learn to broaden their selections.
What Owen has is a feeding disorder. Feeding disorders, not to be confused with an eating disorder (anorexia or bulimia), is a term used to describe children who have difficulty consuming adequate nutrition by mouth. Feeding disorders can be very severe leading to failure to thrive, chronic illness and, in the most severe cases, death. Even when hungry, Children with feeding disorders may not consume enough to thrive.
According to this, often sited, 2000 paper for Journal of Clinical Gastroenterology, by Manikam, Ramasamy Ph.D.; Perman, Jay A. M.D., feeding disorders are, in fact, very prevalent As many as 25% of children have some degree of a feeding disorder. When you just count those who are developmentally delayed the number jumps to 80%!
Feeding disorders are multifaceted and often include medical, behavioral, psychological and environmental aspects. They can be found in healthy children, but the healthy cases are more likely to be temporary and environmental in nature. More frequently, and often more severely, feeding disorders are found in children with digestive disorders or those with special needs.
I really like the way this Journal of Pediatric Psychology article from 2007 breaks eating disorders into three, easy to understand categories; tube dependent, liquid dependent and food selective. Clearly as a parent who makes a conscious effort to not be stressed about Owen’s eating (or lack of), I was interested to see that, according to this study, intensive (extended in-patient, multidisciplinary treatment) has the best outcomes and the least stress for parents.
Honestly, Owen’s feeding disorder, is one of my biggest forms of stress in his care. While, I wouldn’t wish any type of disorder on him, physical and cognitive disabilities are easier for the rest of the world to accept. Eating and enjoying food is often the backbone of culture. I want for my son to be able to participate in his environment with food, and I do believe he can and will. However, getting there is really frustrating – especially when you add in his wheat, egg and peanut allergies. I basically am throwing darts blind folded looking for foods he will eat and then when we find one, he eats only that for a while and then gets sick of it, or starts teething or has some other disruption and then we start all over. It is costly and is very, very time-consuming and in reality, all the work may just be a band-aid to get us to the point when he’s ready for an inpatient program.
So, please, when you look at Owen, don’t think he’s being picky or stubborn. While not a perfect comparison, nobody would ever say Owen is still on oxygen because he’s too stubborn to breathe without support. We all understand that his multiple lung and airway disorders are working together making it difficult for him to fully wean from oxygen. His eating is similar, this is a medical disorder that involves many facets of his development. Just like he will one day be off oxygen, I know he’ll one day be done with his feeding tube. But it does take time. Sometimes seemingly excruciating amounts of time.
In the meantime, we keep working on it. Here he is checking out a strawberry, with a little apprehension.