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Increasingly, research is showing otherwise (which comes as no surprise for those of us who have struggled with eating disorders). The median age was mid 20’s for all groups (slightly younger for AN, unsurprising given the diagnostic crossover data in literature).
Crow et al relied on the National Death Index database compiled by the National Center for Health Statistics for their data and classified the causes of death into suicide, substance use-related, traumatic and medical. This would suggest that this SMR value is actually more realistic and reflective of the AN population (although, it is unclear if it is reflective of the non-treatment-seeking sample, that’s naturally very hard to evaluate). As the authors note, it is quite possible that the elevated mortality and SMRs in EDNOS is actually contained in a small subset of the group, given than EDNOS was, literally, everyone with an eating disorder that didn’t fit AN or BN (in other words, a very heterogeneous group). Table 2 further subdivides the deaths by the cause (suicide, substance use-related, traumatic or medical). An important note on exclusion: obese patients with binge eating disorder were not included in the EDNOS category (because they were referred to a different, obesity-focused clinic). The common perception of eating disorder not otherwise  specified as a “less severe” eating disorder thus seems unwarranted. And, context matters: note how different these findings are from the meta-analysis I blogged about in my previous post.
Check here to Subscribe to notifications for new posts Notify me of follow-up comments by email. Are All Anorexia Nervosa Patients Just Afraid Of Being Fat and Can We Blame The Western Media? Tip JarIf you enjoy the content on the blog, please considering supporting the website with a donation. Self-harm or non-suicidal self-injury (SI) are common among adolescents, particularly among adolescents with eating disorders. Effective and standardized provider screening is essential given the high rates of [SI behaviours] among both adolescents and patients with ED who are screened, and the increased risk for suicide in those who self-injure. I have never been BN – Only AN-R, AN-P, and ED-NOS, but I wonder how many have sought self-harm as similar comfort?
Good points, but I do think history of SI should be done regardless of diagnosis and duration of ED.
I think screening for SI and suicidal thoughts should be done automatically on every intake for a mental health issue – maybe it should be done among all young people at least. When I first self harmed I had never been diagnosed yet with the ED, although I was very close to being so, I had never been in a mental health facility, or had contact with other people with mental illness (that I knew of).
Pediatricians, who most often have the first interaction with young patients showing symptoms of eating disorders, have an important role to play in the identification and management of disordered eating behaviors and the associated medical complications. Binge-eating disorder describes a condition in which patients binge but do not use inappropriate compensatory behaviors.
Although it is not listed as among the DSM-5 criteria for an eating disorder, the female athlete triad refers to a condition characterized by reduced energy availability, menstrual dysfunction, and reduced bone mineral density (BMD) in women athletes.
Typical presentations to the pediatrician are primarily related to weight-control behaviors (including food restriction, binging, purging, laxative abuse, and excessive exercise) and the effects of malnutrition (Tables 1, 2). The physical examination should include measurement of height and weight obtained with the patient dressed in a hospital gown, post voiding. Energy imbalance is considered to be the leading factor disrupting the hypothalamic-pituitary-gonadal axis.
Eating disorders are associated with reduced BMD and increased fracture risk.16 Adolescence is an important time for bone mass acquisition and malnutrition can interrupt that process. Hypokalemia is the most common electrolyte abnormality in AN.20 Metabolic alkalosis occurs in patients who vomit or abuse diuretics. Refeeding syndrome describes a potentially lethal shift in electrolytes due to an increased secretion of insulin during refeeding.
The pediatrician can be the physician member of the team or can refer the patient to a team of eating disorders specialists. A dual-energy x-ray absorptiometry scan should be considered for all patients with AN or EDNOS and for women who have been amenorrheic for longer than 6 months to assess for low BMD.
Children, adolescents, and young adults with eating disorders can present to the pediatrician with a variety of symptoms including weight loss, vomiting, growth retardation, pubertal delay, and amenorrhea.
In girls and young women, weight restoration is accompanied by resumption of spontaneous menses, and in boys and young men, it results in the normalization of testosterone levels.
Dr Martin is a clinical fellow in the Division of Adolescent Medicine, Department of Pediatrics, Lucile Packard Children's Hospital, Palo Alto, California, and Stanford University School of Medicine, California.
All comments must follow the ModernMedicine Network community rules and terms of use, and will be moderated. Emilyprogramfoundation.org Kitty Westin and Keri Clifton Understanding Eating Disorders, Treatment and Recovery.
Eating Disorders: Understanding Treatment, Improving Relationships with Food, and Promoting Positive Body Image Janelle Fuchs, RD CD Registered Dietitian.
The experiences of siblings of individuals with eating disorders has received relatively little space in the academic literature to date. However, few studies have explored experiences of male siblings, older siblings, or siblings of adolescents with eating disorder not otherwise specified (EDNOS). The authors used Corbin & Strauss’s (1990) grounded theory for qualitative analysis and checked their results with some of the siblings. The quantitative data revealed relatively little; keep in mind that 20 is a very small sample size for a quantitative study, and allows for only weak and tentative conclusions.
Siblings were not always given information about their sibling’s eating disorder and reported feelings of confusion, anger, and frustration.
Yeah it’s like, when people are saying ‘what is wrong with those people; why don’t they just control it’, you feel kind of defensive but you’re thinking the same thing. Among the changes in siblings’ lives was the development of a greater awareness of eating attitudes and behaviours surrounding them.
I never lend her any of my clothes any more because she’ll say, ‘I couldn’t wear the clothes because it was too big for me, it was just too big for me’. Interestingly, and related to the first theme, siblings struggled most to understand behaviours that were not related to food. Family conflicts, both between parents, and between the AED and various members of the family, were noted to have increased, according to siblings.
Worry and concern for the AED were common among siblings; many feared for their sibling’s life and long-term health.
It’s so easy for people to say ‘[you should] try not to think about it, but you can’t not think about it. Despite their compassionate outlook, siblings also described losses, such as loss of personal identity, closeness with the AED, and a “normal childhood.” This was sometimes articulated in terms of appearing (or fearing that they might appear) to be just the sibling of a person with an eating disorder. Sometimes I blurt something out by accident, not knowing what it means, without thinking it straight, and then she gets the wrong idea. Again, the issue of mixed loyalty resurfaced, as siblings were unsure whether to report to their parents when they saw the AED engaging in eating disordered behaviours.
The eating disorder impacted siblings’ lives in a number of different ways, and in different areas of their lives. Overall, this study highlights how eating disorders can come to have huge impacts on siblings, as well as families in general.
Searching for the anecdotal, I’m curious: Have any readers talked to their siblings about their experiences? Andrea is a PhD candidate focusing on individual, familial, and health care definitions and experiences of eating disorder recovery. I definitely think that it would be interesting to look more deeply at impacts on siblings, including physiological changes, as you suggest. Thanks for the info, Tetyana- I find the idea of epigenetics interesting but don’t know much about them and the mechanisms through which they work.
There are a few, including DNA methylation and histone modification, which seem to be the most studied. I do plan on tackling these issues of self-blame…punishing myself for being a NOT perfect Mom (although I SO wanted to be)in hospital when I return home post-vacation. The inherent assumption in the word sub-threshold is that the patient is not as sick. Symptom frequency and behaviours are not that bad.

Perhaps this is because the sample of BN and EDNOS patients is quite large (906 and 802, respectively), and perhaps therefore, more reflective on these populations. This is something that will be very important to evaluate in future studies, especially to strengthen the empirical validity of the upcoming DSM-V diagnostic criteria. While this is interesting, the absence of SMRs makes it difficult to evaluate with respect to the non-ED population at large. It will be important to combine datasets from many areas around the country (and in other countries), particularly to evaluate any differences in mortality between different racial groups (ie, to conduct a multi-site study). I guess the assumption is that this bias in underreporting is similar for both the observed and expected groups? Incidence, Prevalence and… by Tetyana October 10, 2012 Six month of blogging and I have yet to do a proper post on the prevalence of eating disorders. Previous studies have shown that SI seems to be associated with sexual trauma, mood disorders, and substance abuse.
Rebecka Peebles and colleagues looked retrospectively at intake evaluations of 1,432 patients between the ages of 10-21 (mean age 15). Further prospective study is warranted to determine the true prevalence in ED adolescents, as these results could be biased by such selective screening.
Based on my completely unscientific and totally not-random sample of people on tumblr that I follow, there seem to be a lot of individuals with just AN or AN-P who self-harm. I never engaged in self harm, like cutting on myself, but at the age of 21 I did have have a suicide attempt.
I wonder are there any figures about these peoples ages – is self injury more prevalent in any particular age group? The pediatrician, therefore, has an important role to play in the identification and management of eating disorders in children, adolescents, and young adults.
Athletes, diabetics, and obese adolescents are particularly vulnerable.5-7 Disturbances of body image and diet are less prevalent in young men than in young women.
The core features of AN are restriction of energy intake leading to a significantly low body weight for developmental stage, body image distortion, preoccupation with shape, and fear of gaining weight. The new diagnostic category ARFID describes patients who restrict their caloric intake but who do not have body image distortion or fear of gaining weight. The energy deficit may be intentional and accompanied by an eating disorder, or it may be unintentional when the athlete underestimates the energy requirements for her sport. A child or adolescent can present with failure to gain expected weight during a period of growth or may even present with frank growth retardation and pubertal delay.
Screening tools are available for the pediatrician, for example the Eating Attitudes Test or the SCOFF (Sick, Control, One stone, Fat, Food) questionnaire (Table 4).11,12 Many practices and clinics employ confidential questionnaires that screen for a variety of risk and resilience behaviors, including questions related to eating disorders. Body mass index (BMI) should be calculated (weight in kg ÷ by height in m2) and plotted on the Centers for Disease Control and Prevention growth charts.
Growth retardation, pubertal delay or arrest, and impaired acquisition of peak bone mass may all occur as well as menstrual irregularities in women and decreased erections in men. Reduced pulse frequency of gonadotropin-releasing hormone results in low LH, FSH, and low estradiol or testosterone levels.
In women, the degree of reduction in BMD is directly related to the duration of amenorrhea and degree of malnutrition. Cellular uptake of phosphorus can lead to hypophosphatemia within 4 days of refeeding and can precipitate sudden cardiac failure and arrhythmias.
In adolescent women, oral estrogen-progestin is not effective in increasing BMD, likely because of the suppressive effects of oral estrogen on insulin-like growth factor 1, and because hormonal contraception is not recommended for treatment of low bone mass.22,23 Hormonal contraception can also mask resumption of menses, which is an important marker for determining recovery. In an adolescent girl who has lost weight, is exercising excessively, or is engaging in unhealthy weight control behaviors, an eating disorder should be suspected.
Hormone replacement therapy is not recommended to treat amenorrhea or low BMD in girls and women because it has not been shown to be effective in increasing bone mass and masks resumption of spontaneous menses. Dr Golden is chief, Division of Adolescent Medicine, and Marron and Mary Elizabeth Kendrick Professor of Pediatrics, Stanford University School of Medicine, California.
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Consequently, to help fill this gap, Areemit, Katzman, Pinhas & Kaufman (2010) conducted a mixed-methods study looking at experiences and quality of life among siblings of adolescents with eating disorders. Additionally, siblings who wanted to continue with the research were invited to participate in a focus group; 10 siblings participated in this group. Nonetheless, the descriptive statistics the authors calculated (the majority of which I described above) makes interpretation of the qualitative results quite interesting. They reported different understandings of eating disorder etiology, sometimes fluctuating between feeling as though the sibling wanted attention and at the same time seeing the eating disorder as something over which the AED had no control.
Though siblings did not see (or admit to) changes in their own eating overall, some reported having “experimented” with the AED’s eating behaviours. They suggested that these fights often centered on negotiation, lies, and secrecy, and they seemed unfair to them. This was also coupled with a desire to safeguard the AED from the judgment of less compassionate others. This led some to isolate and become more private, or to take on the identity of “the undemanding, silent child.” The process of shifting identity was not uniformly negative, however, with some siblings noting positive changes, particularly the development of better self-understanding.
The authors note that older siblings reflected on things they might have done that could have contributed, whereas younger siblings feared doing the “wrong thing” in the future.
I always thought back to all the things that I ever said (snif?ing) ‘am I like a bad sister?’ Which I know I have been a good sister but (crying), I blamed myself for that.
Many felt that they should help in managing their sibling’s ED, for example through supervising mealtime. While I wouldn’t call this a unique finding in the vast eating disorder literature, the particular experiences described by siblings help to shed some light on areas in which interventions or support might be most useful. As the authors note, the sample included in this study all elected to participate and the focus group participants were particularly eager to share their experiences.
My own brother is a closed book and we also lived separately for much of the time I was actively symptomatic so I still have no idea, unfortunately, what it was like for him to have a sister with an eating disorder. As a Transactional Analyst, your brief examples around sibling experiences jump out as being a power struggle within the sibling dynamic with the non- eating disordered siblings being left confused about what is going on.
Having had a sister who struggled with an EDNOS, it is true I think that life was different growing up.
Having been only eleven and a half when I started, it makes me wonder if it could have been due to the stress we all went through at the time.
I think it is interesting that you can relate in particular to the hyper-awareness of image-oriented culture. Your story is fascinating- your shared and different experiences with your twin must make for some very interesting (and as you mention, not always easy) dynamics going on there. Interesting observations about both your relationship with your sister and your fears about your interactions with your daughter. Given that most ED mortality research has focused on anorexia nervosa, Crow et al wanted to compare mortality (from all-causes and suicide specifically) in patients with anorexia nervosa as well as bulimia nervosa and EDNOS. It is also not defined exactly what traumatic and medical mean, which would have been nice – just to know your guess based on the name is correct.
This work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. The present study aimed to find out whether (1) SI is associated with any specific eating disorder symptoms, such as bingeing, or purging, and (2) how often clinicians screen for SI behaviours (and whether particular patients are more likely to be screened than others).
If SI is associated with a higher likelihood of suicide, and suicide rates seem to be similar enough among patients with different ED diagnoses, I think everyone should be screened. This attempt was very specific to the fact that an insurance policy stopped its coverage and I could no longer live with this disorder for the rest of my life. In contrast to DSM-IV, the 85% of expected body weight (EBW) threshold and amenorrhea have both been removed as requirements for the diagnosis of AN. They avoid foods based on texture or color and they can have concerns about aversive consequences of eating, such as choking or vomiting.
In a child or adolescent, the BMI percentile should be determined for age, sex, and height and compared with prior growth charts.
A recent study demonstrated that AN presents a high heritability and that polymorphisms in genes coding the estrogen receptors alpha and beta have been shown to be associated with AN.14 Menstrual dysfunction, however, can occur across all eating disorder subtypes.

Reduced concentrations of free T4 and total T3 and elevated cortisol levels are frequently seen in patients with AN. If the pediatrician elects to be the physician member of the team, management should include monitoring of weight, vital signs, and medical stability on a regular basis, sometimes even weekly if needed. Family-based therapy is an effective form of psychological treatment in children and adolescents with AN. Women with anorexia nervosa should not be treated with estrogen or birth control pills in a bone-sparing effect. Randomized clinical trial comparing family-based treatment with adolescent-focused individual therapy for adolescents with anorexia nervosa. A randomized controlled comparison of family-based treatment and supportive psychotherapy for adolescent bulimia nervosa. The role of the pediatrician in family-based treatment for adolescent eating disorders: opportunities and challenges. The authors have nothing to disclose in regard to affiliations with or financial interests in any organizations that may have an interest in any part of this article. We had to move forward, transform the horror into something positive and offer HOPE to others who are affected by eating disorders.
If you suspect someone is struggling with eating disorder behaviors, ask if it is okay to discuss his or her eating habits. On the other hand, some studies have shown that siblings of patients with chronic illnesses have both positive (personal growth, responsibility, increased empathy) as well as negative (worry, fear, resentment) experiences. The mean age of the siblings was 13.5, with 10 and 16 being the youngest and oldest ages, respectively. They also noted being more sensitized to the social context surrounding food, dieting and fat talk (from the AED or others). In conflict situations, siblings also felt torn between loyalty to parents and to their sibling. I don’t know, I just thought ‘what did I say?’ or ‘what did I do that made her feel she wasn’t good enough?’. Based on the qualitative results, providing siblings with information and support that would help them to navigate the at-times confusing experience of living with an individual could be a helpful approach. Finding a way to include siblings who felt more disengaged would be extremely interesting in terms of reaching the voices that are harder to hear. In her Masters research, she used qualitative and arts-based approaches (digital storytelling) to explore the experiences of young women in recovery from eating disorders. It is said that many factors can play a role, like: biological programming, nutrition, health and a sturdy home life. Some of the subtleties of environmental triggers and obsessions can go unnoticed by those who haven’t experienced disordered eating firsthand, such as through having a sibling with an eating disorder. For example, DNA methylation just means adding a methyl group (to cytosine or adenine nucleotides) which can essentially silence the gene expression. If I recall, there is a small body of literature surrounding parents with eating disorders and the perspectives of their children, but don’t quote me on that- I will look into it; maybe there is an interesting post to be written about that! Furthermore, they were interested in studying a heterogenous sample over an extended period, as opposed to fairly homogenous, short follow-up studies. So the relationship between a particular ED and form of self-harm may reflect a longer or more diverse history of ED.
I went into recovery at the age of 22yr.I always had specific hang ups about food and weight but I maintained a stable weight and went to college to become a nurse. Incidentally, when I was doing outpatient therapy, I would be there from breakfast to dinner most days. Core features for BN include cycles of binge eating with consumption of large amounts of food with loss of control followed by inappropriate compensatory behaviors such as self-induced vomiting, use of laxatives, diuretics, diet pills, or excessive exercise. Although the DSM-5 has expanded the number of diagnostic categories, the number of patients with disordered eating behaviors far exceeds the number of patients with an eating disorder.
Among US high school and collegiate athletes, the prevalence of the triad is low (up to 1.2%). Other medical diagnoses should be considered and excluded, including thyroid disease, inflammatory bowel disease, or celiac disease.
Dietary restriction and excessive exercise are associated with amenorrhea, whereas binge eating, vomiting, and appetite suppressant abuse are associated with oligomenorrhea or normal menses.15 Clinical variables associated with menstrual disturbances include vomiting, low dietary fat intake, and low body weight. Urea and creatinine are generally low, and normal concentrations may mask dehydration or renal dysfunction. Weight restoration and resolution of the cognitive distortions regarding shape and weight are the main goals of treatment. The role of the pediatrician is to serve as a consultant to the family, therapist, and patient and to monitor for medical stability. Skipping meals, purging food, avoiding insulin--the scary world of eating disorders and diabetes. Some larger studies in the quantitative realm might also illuminate potential differences in experience between genders, older and younger siblings, and siblings in different types of households. It is sad that society pushes a certain look to such an extreme that one can get wrapped up in obtaining it! It can be extremely difficult to recover in the society in which we live, when everything you need to do to recover goes against the (at times tacit) social norms that circulate. I, too, hope that there is more research involving the topic, it has really sparked my interest. I guess my point is that I have apparently avoided thinking about any damage I am doing to her, by restricting actively.
For too long, the study of eating disorders focused on blaming the individual, and more complicatedly, in this case, on blaming mothers and families, which is why I think it is extra important to avoid doing this, if possible, because it certainly isn’t your fault! It was another way of me trying to tolerate emotional pain that I just didn’t think I could get through in one piece.
Abnormalities of liver enzymes are predominantly characterized by elevation of aminotransferases, which may occur before or during nutritional rehabilitation. Hypercholesterolemia is a common finding, but its significance in relation to cardiovascular risk is uncertain. A weight gain of 1 to 2 lb weekly as an outpatient in malnourished patients is a reasonable goal. Address the multiple factors that contribute to eating disorders including the media, the fashion industry, the myths and misunderstandings that are prevalent. The majority (70%) of AEDs were diagnosed with anorexia nervosa and the remaining 30% with EDNOS.
However, despite this increased familial conflict, some siblings also talked about the eating disorder having brought the family closer together. Technically, these changes are only epigenetic if they can be passed down through generations, but people seem to refer to these changes as epigenetic regardless of that… probably because it is a trendy buzzword. It would be interesting to see if children’s perspectives would be similar whether a sibling of an AED or the child OF an adult with an ED.
In contrast to DSM-IV, in which the frequency of binging and purging to meet criteria for BN was twice a week for 3 months, in DSM-5 the frequency of those episodes has been reduced to once a week. For those who are amenorrheic, luteinizing hormone (LH), follicle-stimulating hormone (FSH), and estradiol should be obtained.
This thought process about punishment is also probably heavily related to the abuse history. Denial or secrecy is common, and frequently there are discrepancies between the history provided by the patient and that provided by a parent.
We needed to take Action: to get INVOLVED and be Anna’s voice for change – ADVOCACY Death ends a life, not a relationship. In this informal survey, 2 or more "yes" answers strongly indicate the presence of disordered eating.

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