Feeding Disorder versus Picky Eater

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.

  1. When he’s hungry enough, he’ll eat OR
  2. 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.

Click to Pin on Pinterest

Click to Pin on Pinterest

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

12 thoughts on “Feeding Disorder versus Picky Eater

  1. Oh, Tatum! I love you dearly, but there is no doubt in my mind that your red-headed little boy is as stubborn as they come, just not about food. How can he not be? Have you met his momma? I’m sure that both of you will get through this with your normal stubbornness. . . But stubborn in a way that is going to help him over come this. Just like he has stubbornly overcome so many other things!

  2. And not only is this confusing for the public to understand, there is still even debate within the medical community about behavioral vs. hunger based therapy. So we are all getting mixed messages. It’s very confusing and frustrating. For a time, a hunger based approach was not working and in fact, was very dangerous for Jack. At that point he got his g-tube. Then suddenly, hunger clicked for him. The hunger approach worked. But it wasn’t always that way.

    • Great point, Jessi. I definitely didn’t intend to say that hunger cannot be an effective part of therapy. I’m definitely exploring it for Owen, in an in-patient, or highly monitored setting. I was mainly hoping for people to understand that being picky or stubborn is different than the problem Owen is facing.

  3. Great post. I find this to be relative to many parts of preemie/special needs parenting (at least in my short experience and by observation). I find that many people like to casually “blame” a condition on stubbornness, pickiness or even laziness almost in a cute or joking way. I clearly remember a PT blaming my daughters struggles with tummy time and rolling over on being stubborn and unmotivated. In hindsight it is so ridiculous, especially when talking about an infant. She clearly had physical and motor limitations that made it so tough for her at the time.

    I’m guilty of it, our therapists are guilty of it, our family is guilty of it. Is it just a comfort for us or for those who know our children to “blame” any given problem on something so simple?

  4. Thank you for this wonderful explanation of feeding disorders! My daughter is having difficulty with getting enough calories and I have been getting the same comments “JUST give her this.” “JUST let her eat when she wants.” There is no JUST when your 21 month old daughter is the size of a 1 yr old and you can actually see the progression of the feeding disorder. She used to eat anything we put in front of her, now she’ll only eat a few things and they are not very high calorie and she doesn’t eat it consistently. We are just beginning our journey into this, so I will bookmark your blog and read in my spare time. I am looking for any advice.

  5. Ugh, I relate to this a lot! I hear the ‘just give him this… ‘ or ‘just let him do this…’ a lot too. A couple weeks ago I got the ‘babies won’t starve themselves’ from someone who doesn’t even have a baby at all, let alone a former preemie. Even with carnation instant breakfast (in place of Pediasure) to make up for meals that don’t go well (which is somewhere between 65-75%) he isn’t really holding steady on ‘his’ growth curve

  6. Hello, I read your post with interest. As a therapist who works with children with feeding disorders and many other complicated medical histories, your words rang very true today. Many of my families express the same issues, the frustration with different messages from the medical community and still need to live the day to day reality. Keep on trying…fear about food is real, inconsistent responses is common and support is so needed for the entire family. check out http://www.popsicle.org

  7. I just stumbled upon this post from Pinterest somehow searching for info on g tubes. We have just taken my sons g tube out and I was looking for healing information. Anyways, I’ve read some other stuff on your blog about the different formulas you have used and the retching and gagging with the feedings. We went through all of that as well, my son has a Nissum Fundoplication too. It is such a nightmare. We weaned my son from his g tube about a year ago. I am sure you have done a ton of research, but if you are interested in what we did I’d love to share it with you. You know when you have all this useless new information in your head and no one to share it with :). My email is kathleen.riddle@gmail.com if your interested. I wish you luck with your little man. He is precious and most certainly miraculous!

  8. Thanks for this post. My son is a former 25.3 weeker who is now 11 months actual. He has a g-tube and will sometimes take a bottle, but has an aversion to purees. We cannot figure out any pattern for when he will or will not take a bottle–it seems to have to do with the alignment of the stars! He is getting OT for sensory issues but his eating/not eating is a mystery. He has no neurological issues that appear on MRI. I cannot tell you how many times I have heard, “He’ll eat when he’s hungry,” or any number of other comments that suggest that his inability to eat has to do with a strong character. It’s hard to understand until you’ve experienced it. Best of luck with your cute little guy!

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