Not just small adults: eating disorders in young children

More and more researchers and clinicians are becoming aware of the presence of eating disorders in young children (defined here and in most of the research literature as ED onset at less than 13 years). I have known five-year-olds with full-blown anorexia nervosa. Whether this awareness is due to people developing EDs at an earlier age (a study by Favaro et al., 2009 seems to indicate a small but significant decrease in age at diagnosis), a greater number of parents and physicians on the lookout for ED signs and symptoms, or some combination thereof is still unclear. This doesn’t stop clinicians and newspapers from blaming skinny models, however.

Regardless, when the diagnostic criteria for eating disorders was developed, scientists really only thought about eating disorders as occurring in late adolescence and early adulthood. When they were looking to define the characteristic signs and symptoms of an eating disorder, this is the population they looked at. These same criteria are applied to everyone who might have an eating disorder, regardless of whether they were 5 or 95. An eating disorder is an eating disorder is an eating disorder. Or so the thinking went.

The problem is that no one had actually looked to see whether these criteria were actually useful in pediatric cases. Do children with eating disorders have the same symptoms as adolescents and adults? Despite the growing awareness of pediatric EDs and the slew of media articles on the subject, there have really only been two studies published comparing pediatric EDs with adolescent EDs. The first was published in 2006 by Rebecka Peebles and colleagues. The other was just published in the International Journal of Eating Disorders (Walker et al., 2014)

Children vs. adolescents 

Researchers at the Eating Disorders Program, Princess Margaret Hospital for Children in Perth, Australia compared various measures of eating disorders on young children (<13 years) and adolescents (13-17 years). They collected the data over nearly two decades on 656 individuals, including 104 young children (the youngest was 8 years old) and 552 adolescents. All individuals were diagnosed with DSM-5 eating disorders.

I created the table below to outline and summarize what the researchers found.

children eds table

The highlights of what’s in the table:

  • Adolescents are significantly more likely to have bulimia or bulimia-spectrum disorders, as well as binge/purge behaviors
  • Children are more likely to be male
  • Adolescents had lost a higher percentage of their body weight at presentation than children
  • Children and adolescents had a similar rate of weight loss
  • Children and adolescents had similar rates of medical problems arising from malnutrition

Interestingly, some of this data was different from what was discovered in the 2006 study by Peebles et al. In that first study, the researchers found that children lost a higher percentage of their body weight more rapidly than adolescents, and were more likely to experience medical issues relating to their eating disorder. Although the current study did find that children tended to lose weight more rapidly, they didn’t find that children presented at a lower body weight or had more medical problems.

One reason for the finding of less weight loss in children was that it didn’t appear (as far as I could tell) that the researchers accounted for growth potential. In growing children, a stagnant weight is equivalent to lost weight in adults. So while children may look like they’ve lost less weight, when you look at where there weight currently is vs where it should be had they not developed an ED, you can often see big discrepancies that wouldn’t be accounted for if you just measured the % body weight lost.

What they didn’t consider

One of the things that I found interesting was that how the researchers looked for symptoms were still largely constrained by our ideas of “typical” adolescent eating disorders. For instance, they assessed “strenuous exercise to control weight and shape” rather than something like motor restlessness, as described by pediatric eating disorder expert Julie O’Toole of the Kartini Clinic. This isn’t to say that children’t can’t exercise to control weight and shape, just that it might not be what’s motivating them, nor is it necessarily stereotypical “exercise.” It could be constant movement, leg jiggling, etc.

Nor did the researchers look at potential co-occurring disorders or the presence of body dysmorphia. Again, there have been some clinical reports that many young children with EDs have anxiety and OCD, as well as less expression that they’re “feeling fat” or afraid of becoming so. From what I’ve seen in that age group, I see more of a fixation on “healthy eating” or more of a food phobia situation, where the child can’t quite articulate why they are afraid of eating.

Write the authors:

Worth considering is the idea that professionals and adults in general have applied a weight- and shape-centric model to the explanation of EDs, whereas presentations such as avoidant/restrictive food intake disorder or those undocumented may genuinely be free of or involve limited shape- and weight-related disturbance. Alternative explanations that may account for lower scores on eating pathology measures among children are stronger need for social approval, children’s tendency toward more positive self-appraisals, more egosyntonic presentations among children with EDs, and lower desire for help as younger people are often compelled to treatment by their parents.

Other things to think about

I’m curious if there’s a difference down the line in outcome or later ED symptoms based on age of onset. Take two 20-year-olds with an eating disorder, one of whom had symptoms begin at age 10, one of whom had symptoms begin at 18. Obviously, there’s the duration-of-the-ED effect (since Person A has had an ED for 10 years, whereas Person B had an ED for 2), but there’s also the age of onset effect. Do people whose EDs begin as young children have less body dysmorphia down the line? Are they more or less likely to become chronic cases? Are they more likely to have co-morbid anxiety disorders? Do they have different motivators for their eating disorder? These are things we just don’t know.

What we also haven’t assessed is EDs in older adults. This is another population in whom there has been a growing awareness and interest in by both ED professionals and the media. What do the symptoms and medical sequelae here look like?

There is so much we just don’t know. But as studies are beginning to make clear, we can’t think of children with EDs as just “small adults.” They seem to have a unique presentation of EDs that differentiates them from adolescents and adults.

References:

Favaro A, Caregaro L, Tenconi E, Bosello R, and Santonastaso P. (2009). Time trends in age at onset of anorexia nervosa and bulimia nervosa. Journal of Clinical Psychiatry, 70(12):1715-21. doi: 10.4088/JCP.09m05176blu.

Peebles, R., Wilson, J. L., & Lock, J. D. (2006). How do children with eating disorders differ from adolescents with eating disorders at initial evaluation?.Journal of Adolescent Health39(6), 800-805. DOI: 10.1016/j.jadohealth.2006.05.013

Walker, T., Watson, H. J., Leach, D. J., McCormack, J., Tobias, K., Hamilton, M. J., & Forbes, D. A. (2014). Comparative study of children and adolescents referred for eating disorder treatment at a specialist tertiary setting. International Journal of Eating Disorders47(1), 47-53. DOI: 10.1002/eat.22201

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12 Responses to “Not just small adults: eating disorders in young children”

  1. I’m sure if this was in the study, it would have been mentioned, but I wonder about trauma linkages with those who develop EDs as young children. My first sexual assault occurred when I was 7, and the ED began about six months later. I also did have less body dysmorphia than the other people I was in treatment with, but of course the plural of anecdote is not data! I’d be really interested to see those things looked at in more depth. And, if those whose EDs began at a younger are more likely to be “difficult” cases (because they have been sick longer) AND there’s something different in the underlying mentality and/or symptoms, then shouldn’t we perhaps apply different treatment methods than those we use for men and women diagnosed as adults and teens?

  2. They didn’t appear to assess trauma here, though it would be something interesting to assess. Most of the children I know of with EDs didn’t have a trauma history as far as I knew, though I realize that this doesn’t necessarily mean there wasn’t trauma. These children also aren’t necessarily representative of children with eating disorders as a whole.

    I guess what this means is that there are a lot of variables to sort out! How trauma affects age of onset and course of illness, as well as potential treatment methods.

    In the research studies I’ve read, there don’t appear to be different treatments that are given based on how long you’ve been ill. Generally, people are more likely to have their EDs go into remission with early intervention (within 3 years of onset), but it’s not like, say, CBT works best with recent onset cases and DBT is more effective with longer-term eating disorders.

    But these are all variables we know very little about and really haven’t studied much in depth.

  3. Carrie this is such a significant entry for me personally as the parent of a daughter who developed severe restrictive anorexia at age 9. She had a rapid and harsh decline into the most critical physical complications and psychological presentation. Young children are often like that. They have few reserves and a significant loss of weight caused a rapid descent into acuity normally only seen in recalcitrant adult population. Despite that initial hell, I am forever grateful for the early and aggressive treatment we received (well albeit after a harsh 42 day stay in a children’s psychiatric ward complete with parentectomy – but that might be another blog entry for you for another)….Fortunately we found clinicians who used FBT and Exposure and Response Prevention techniques to get us a bungee jump back toward health…. We are now 3 years post dx, a healthy almost 13 yr old who has gotten her first period and long since returned to activities that give her joy. The severe OCD and dysmorphia that manifested during deep starvation state is long since melted and lifted like a fog.

    Who knows what our eventual outcome will be once she reaches young adulthood. And I am ever cognizant of the very real possibility of relapse. So mindful of this onward she goes and she grows, hopefully toward a later adolescence unfettered by this insidious illness that almost claimed her life at age 9. So thank YOU for this significant entry. xoxox (and many thanks to Dr. Peebles too for her study of this atypical but not so atypical population ) Just sayin’….

  4. ps what I can note after being in contact with other early onset parents are some notable things that pop up (just from what I have observed in discussions with these parents) for this age group
    1. The high rate of hospitalization for medical complications
    2. The lack of pediatric care in the ED medical community (its really a subspecialty)
    3. Many of these early onset kids do have co occurring OCD.
    4. Many early onset kids externalize their illness, give it a name
    5. Many fall into an eating disorder from negative energy intake during critical growth spurts pre puberty.
    6. Many early onset kids fall into negative energy intake due to rigorous sports participation without nutrition to compensate
    7. Many of these kids have no clue about calories but do have both diffuse “fat talk” feelings.

    Thank you again for your time and attention talking about this topic.

  5. My daughter was 7 at diagnosis, and told me she couldn’t eat or drink because a mean voice told her not to. Then, when I tried to feed her she objected “but it will make me fat.” So, she did have concern about getting fat. She did a lot of body checking. Had compulsive exercise. Her ED also presented as a plateau in weight, with no actual weight “loss,” though her weight percentile had plummeted over the months of continued growth. And, the pediatrician thought “no problem” because her weight percentile was still higher than her height percentile. And, she had compulsive exercise also.

    As she has recovered, she likes her new body. It’s great to see. She covers her eyes when she sees fashion magazine or fitness magazine covers, so I know they bother her. Her ED zoomed in on those media images as an “ideal” well as on the morbidly obese as a state she needed to avoid. And, she said she started restricting because of a kindergarten presentation on “The Plate” from the USDA, which has no sweets/dessert. How that connected with fears of fatness, I don’t know.

    The good news is that she is doing great, thanks to the wonderful moms at Around the Dinner Table, FEAST’s online support group for parents/caregivers. We also had good professional help, but the FEAST moms and dads are THE BEST!

    Long term, we are keeping a good eye on her so that we can quickly catch any recurrence, as well as keeping her in treatment for OCD. I want to know if those who get ED as little kids and get well are at higher risk in the future. My feeling is that she is at higher risk, even though she is learning such good self-care skills. Rather than worrying about the future, though, our energies are in continuing to provide her with the support she needs for healthy development, including good mental health.

  6. There is so much we don’t know about this population, and you all raise really good points.

    I think talking to the parents of young children with eating disorders would be a great place to start. Do some qualitative interviews, identify patterns, etc. Then you’ll have a better idea of what you should be looking for and how to frame the questions.

  7. Carrie I wonder about the studies you indicate one observance because that has not been our experience nor that of many parents of younger ones as well : The observance here
    “less expression that they’re “feeling fat” or afraid of becoming so. From what I’ve seen in that age group, I see more of a fixation on “healthy eating” or more of a food phobia situation, where the child can’t quite articulate why they are afraid of eating.”

    In fact we do see a lot of parents frequently report alarming “fat talk” in young, and I mean “really young” children”. Age 7, even younger.

    The eating disorders prompted by choking or food neo phobia, is I think more dominant in this age group but does not in my observance represent the majority of early onset cases. I think of them as a separate subgroup and one that actually responds well to clinical treatment at facilities like Kartini which specialize in food phobia in peds.

    I think that the inability to articulate “why” is lack of cognitive development. They also exhibit odd food rules that make little empirical sense due to lack of cognitive development. My own daughter chose peanut butter sandwiches every meal and every snack during inpatient (meetings with a nutritionist which was a silly holdover from treatment paradigms of adults), not knowing how calorific and beneficial (though rigid) that PB would be in early refeeding in the hospital.

    Its all just very interesting and deserves more study you are right….

  8. My d was early in 10th year at onset and in the year since it happened has not made a single comment indicating she thought she was fat or was afraid of being fat. The restricting resembled, from the outside, a drive to starve herself to death because it seemed to have no other apparent goal. When she had a choice, she’d pick a super low cal or zero cal item even though she showed no sign of concern about weight, so it seemed not only a drive to put little volume in her body, but a drive to put in no calories. Totally bizarre. (She is doing great with treatment) She now articulates that it made her feel better with her anxiety not to eat, so I think the drive for her really was purely that brain disorder that, Carrie, you analyze in your book.

    I too would very very much like to see studies of young kids’ long-term outcome with early refeeding and weight maintenance and treatment. I don’t think looking at a child who suffered from age 10 through age 20 would tell us much about the outcome for a child who was refed in a few months and weight maintained after that. If we can show favorable outcomes it might help us motivate medical land to learn how to spot this in young children. Plus the obvious issue that they get medically at risk very fast. Many of us can attest medical land is not at all good at spotting ed in little kids or knowing the medical risks.

  9. When I was 5 I was having weekly IVs because I couldn’t drink, I was hiding food, restricting etc. While trauma was an issue for me that directly has contributed, the behaviours themselves seem to me to have developed organically – I truly believe they would still have developed had there been no trauma. Weight or health weren’t factors at all.

    I am really intrigued by the prevalence of boys with eating disorders as children, it seems a direct contrast to the occurrence of ED in males as adolescents or adults. I personally believe many more males than are accounted for at older ages struggle, but wonder, do they manifest it differently, perhaps in a more socially ‘acceptable’ way (become athletes for whom constant training is accepted, even expected, turn their focus to body building/bulking, just pass as lean since many adolescent boys do go through a gangly phrase…?) or is the the perceived stigma that prevents many males from ever admitting to having an ED?

    How many adults with ED currently actually had ED as children but were children in a time when EDs were not understood and they might have been thought to be extremely fussy and maybe punished for that or muddled through?

    I also wouldn’t be surprised if the number of older people with ED is much higher than officially known – I have often seen elderly and older people who have seemingly wasted away to nothing, often the explanation given is that older people lose their appetites. Why is an older person losing their appetite just ‘something that happens when you get older’, while in a younger person it might be identified as a danger sign?

    Sorry, as you can probably tell, I was one of those kids who asked questions a lot; as an adult, I still do. ;)

  10. Thank you for this article. I am a holistic wellness activist for youth. I have recently been alarmed by the increase of children suffering from eating disorders. I have organized a team of clinical psychiatrists, celebrities, and fitness models to put on a large fundraising campaign for kids with eating disorders in Los Angeles on June 21st. We will be donating to a major national charity that helps in the awareness, prevention, and intervention. :)

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