understanding feeding aversions/disorders, part 2...

(If you have not read part 1 of understanding feeding disorders/aversions, please CLICK HERE first. If you did get to read it the first time, it may help to go back and read it again to remember the other 6 myths. If you do go read part 1, just click Tlitha Qum at the top to get back here.)  :)

 Myth #7: If there’s such a thing as a feeding disorder, then why have I never heard of it?

Feeding disorders are much like autism was 50 years ago. It was definitely around, but was not as prevalent as it is today. People didn’t know about it or understand it because it wasn’t talked about, there was little awareness, and not many educators or doctors knew how to help children who had it. These days, every 1 out of 150 children have some type of autism spectrum disorder, and almost everyone knows of someone whose child has it. Most likely in 100 years, feeding disorders will be just as “heard of” as other different needs. Today, 6-35% of children have some type of feeding disorder. It is hard to imagine a baby or child not wanting to eat or struggling to eat. But the rising numbers of books, feeding clinics/programs, and research institutions are a testament to the fact that feeding disorders/aversions do exist and are prevailing.

Myth #8: Kids who don’t like to eat are just picky eaters; a feeding disorder is too serious of a title to give a simple problem like that.

A feeding disorder is not the same as a picky eater. Even picky eaters eat what they need to maintain weight and get enough nutrition orally. Picky eaters may not like certain types of foods, but they eat large amounts of what they like to eat, which in turn keeps them healthy. Also, the great majority of picky eaters do not have any other underlying medical issues that make eating difficult, frustrating, or painful.

Myth #9: Your baby doesn’t look like he/she is struggling, so it must be made up. Don’t kids who have problems look like something is wrong with them?

NO! If you walk into any therapy clinic, or a regular classroom, it would be extremely difficult to pick out which children have special needs based on how they look alone. Some special needs are more severe than others. But some medical conditions are not obvious to the outside world. Even adults with some cancers, arthritis, diabetes, fibromyalgia, and other things do not always look unhealthy. Many adults are good at masking their pain or problems; so are children, especially children who have a typical personality and zest for life. In fact, the majority of children who have trouble eating for whatever cause, look like perfectly normal children. Of course, there are children whose special needs do affect their outside appearance, such as muscular dystrophy, cerebral palsy, and Down syndrome. When it comes to feeding, there are varying degrees of these diagnoses as well. I’ve seen children who have only mild Down syndrome who eat perfectly fine, but have trouble doing other things, like jumping rope and learning in school. I’ve seen children who have no mental handicaps, no developmental problems, and are brilliant cognitively, but have oral-motor dysfunction that prevents them from being able to chew, swallow and digest food. Not all children fit into one specific category, nor are all at the same level of disability/difficulty, even in the world of special needs.

The set-back for most people with Stephen is that he has weight on him, and he is always happy. He has gained weight because we weren’t going to let him starve, even if it meant forcing him to drink formula or bottle- feeding him around the clock while he was asleep, which worked until he completely refused and needed a tube. He is happy because we love him, we want his life to be full of joy, and we treat him as though absolutely nothing is wrong.

Now that we’ve gotten past all 9 myths, let’s look at what Kennedy Krieger, which has the #1 Feeding Disorders Clinic/Program/Research Institute in the world, says about feeding disorders:

“A child with a feeding disorder does not consume enough food (or liquid, or a broad enough variety of food) to gain weight and grow normally. General feeding difficulties are relatively common among most children. For example, a child may be a picky eater and consume a limited number of foods, but the foods eaten span all the food groups and provide a well-balanced diet. A child with a feeding disorder, on the other hand, may only eat a few foods, completely avoiding entire food groups, textures or liquids necessary for proper development. As a result, children diagnosed with feeding disorders are at greater risk for compromised physical and cognitive development. Children with feeding disorders may also develop slower, experience behavioral problems and even fail to thrive. Severe feeding disorders can cause families and children to feel socially isolated.…

There are many different types of feeding disorders, and they can take on one or more of the following forms:

• Trouble accepting and swallowing different food textures

• Throwing tantrums at mealtimes

• Refusing to eat certain food groups

• Refusing to eat any solids or liquids

• Choking, gagging or vomiting when eating

• Oral motor and sensory problems

• Gastrostomy (g-tube) or naso-gastric (ng-tube) dependence

Feeding disorders typically develop for several reasons, including medical conditions (food allergies), anatomical or structural abnormalities (e.g., cleft palate), and reinforcement of inappropriate behavior (i.e. force feeding). In most cases, no single factor accounts for a child's feeding difficulties. Rather, several factors interact to produce them. While a wide spectrum of factors can contribute to feeding disorders, certain medical and psychological conditions may accompany them:

• Gastrointestinal motility disorders

• Gastroesophageal Reflux Disease (GERD)

• Palate defects

• Failure to thrive

• Prematurity

• Oral-Motor Dysfunction (dysfunctional swallow, dysphagia, oral-motor dysphagia)

• Esophagitis

• Gastritis

• Duodenitis

• Food allergies

• Delayed exposure to a variety of foods

• Behavior management issues

• Short Gut Syndrome”

Feeding (both eating and drinking) is a complex process. When just one little part of the entire process is out of sync, is difficult, is painful, or is delayed, an infant or child can develop a feeding disorder or aversion. If there are other special needs, underlying medical conditions, or disorders going on with the child, it can make eating that much harder.

For Stephen, we believe everything began when he was born early, causing sensory issues and lack of a desire to consume what he needed to grow; things worsened when he began to reflux so severely that he would choke/gag, aspirate, turn blue-purple, and ended up needing surgery. He felt pain, therefore would only eat while sound asleep, or if we literally poured it down him so that he would gain weight. This snowballed into more sensory problems, which made him refuse to eat altogether, creating a need for a feeding tube.

Dr. Joel Macht, author of the book Poor Eaters, understands children like Stephen extremely well. In an interview with reflux guru Jan Gambino, he writes the following:

“I doubt it’s possible to prevent the gamut of problems associated with reflux and other feeding issues. Some food aversion can’t be avoided—some children experience physical discomfort from eating before we realize it, and that discomfort sets the stage for them to begin avoiding what produced the unpleasantness—eating. Likewise, some children, by necessity, are fed argumentatively from their earliest days. Satisfaction from hunger, therefore, occurs without their active participation—they feel better but they have no idea why. Requiring these children to quite suddenly consume food by mouth is often met with closed lips, turned heads, and loud screams. (If that weren’t enough, if a child learns that loud screaming causes a parent to terminate a feeding session, the child will log that lesson for future use. That, by the way, is a behavior issue.) It’s essential, therefore, to feed a child only when he’s hungry. Feeding him (forcing him) when he’s not hungry is asking for all sorts of trouble. Further, it’s quite likely that a day-old-child knows pain and has the capacity to begin avoiding it. It’s critical, therefore, to investigate whether swallowing solids or liquids produces physical discomfort. Infants do learn to turn their heads toward food. It’s just as likely they learn (quickly) to turn their heads away from food. So, find a doc who understands how hunger and pain influence a child’s willingness to eat by mouth.

The poor eater I referred to in [my] book refused food not so much because of preferences, but because he had forgotten, or never learned, that eating by mouth was an enjoyable activity that produced pleasant tastes and reduced the discomfort from hunger. Instead, he had learned that swallowing and eating were painful and frightening, and he had learned adaptive ways to avoid eating. In my judgment, had the poor eater not experienced hospitalization or illness that interfered with a natural eating sequence, had he not, by necessity, been fed by tube, had he not experienced persistent reflux or gagging, had he not come to associate eating with fear and discomfort, he would have happily eaten a taco (or a bowl of cereal) of his own design.

A final word, not so much about prevention, but about progress. Eating problems take time to develop. Reversing them takes time as well. Eating and feeding have become activities to avoid. If there is a common characteristic that universally crosses this population of chronically refluxing youngsters, it is that eating is rarely a satisfying experience. And because feeding must occur several times a day, every day of every week, frustration, disappointment and, unfortunately, anger are frequent visitors to the experience. Poor eaters and unhappy parents often follow. It takes a good plan, it takes consistency, and it takes patience. Be prepared for that frustrating two steps forward, one step backwards dance. Dig deep and find your optimism. Wear it boldly so your child can feel it.”


 Thanks so much for reading!!! I hope this helps some of you understand more about Stephen’s condition and answers questions you might have. If you have any other questions, would like more information, or have a child with reflux, a feeding disorder, sensory issues, etc... and need someone to talk to, please contact me through my email address on my profile!

(All factual information and quotes were taken from PAGER.org, infantrefluxdisease.org, the Kennedy-Krieger Institute for Pediatric Feeding Disorders, and the book Just Take a Bite.)


PeeJumpty said...

Thanks for sharing, Sara. I think it's awesome you've found the resources you have and have found a community that can commiserate with you as well as encourage you to not give up. I pray those who need answers and help can be encouraged through your blog.

Sara said...

Thanks Phoebe! :) If it wasn't for all of the resources I've found and others who understand/have been down this road, I don't know what we would have done. It really feels almost surreal to write out all of this information and know that I'm not talking about some other random person, but about my sweet son, who has the disorder. I hope there is someone out there that I'm helping already, or that God will use all of this one day in the future. I am truly thankful for the strength to talk about it and to find a way to use it to bring encouragement to others also. :)