The Parent's Guide to Eating Disorders
Supporting Self-Esteem, Healthy Eating, & Positive Body Image at Home
by Marcia Herrin & Nancy Matsumoto
Medical Symptoms and Complications Associated with Anorexia
Excerpt from The Parent's Guide to Eating Disorders
Any child who undereats is at risk for the conditions we will describe. The longer the undereating goes on, the more likely it is that it will turn into full-blown anorexia nervosa. We use the term "anorexic" here, recognizing that bulimics and binge eaters can also experience the same medical complications and symptoms from bouts of undereating.
Anorexia nervosa, in severe cases, can affect almost all the major organ systems. In this section, we will discuss the symptoms of anorexia, which we have organized by different functions and areas of the body.
In children, the effects of anorexia are particularly devastating because the child has not yet finished growing and maturing. Height, for instance, can be compromised in anorexic children. While most children are expected to be as tall or taller than their parents, children whose anorexia has become chronic will likely be shorter than would have been predicted without the illness.
Anorexia can also delay sexual development. Anorexic girls may stop getting their menstrual periods, a change that gives rise to mixed feelings in most girls. At first, they are glad not to have to bother with a monthly cycle. They may have heard that athletic girls are likely not to have periods, so their condition seems even somewhat desirable. On this point, you can inform your child that doctors today believe that loss of menstrual periods among athletes is almost always the result of undereating, not overexercise, although it is true they need to eat more to meet their caloric needs.
Girls may also admire the way anorexia delays the development of hips and breasts, physical features they associate with being fat. Girls whose anorexia predates menarche (the beginning of menstruation), on the other hand, will usually not realize that their starvation has delayed its onset. By substantially delaying puberty and permanently interfering with height and breast development, anorexia at this young age has an even more detrimental effect on health and development than does anorexia in adolescents. One reason that children are thought to be at an increased medical risk from anorexia is that they naturally have smaller fat stores than do adolescents and so lose vital tissues more quickly with weight loss.
Boys and young men with anorexia may also experience delayed sexual development. The primary symptom of this is decreased levels of serum testosterone, a condition that can be determined by blood tests.
Anorexics may experience a variety of gastrointestinal symptoms, all of which are believed to be caused by malnutrition and underuse of the gastrointestinal tract. Chronic undereating actually causes the musculature of the small and large intestine, which churns and digests food, to atrophy. The anorexic may experience stomachaches and bloating as food sits in the stomach longer than usual. The constipation anorexics often suffer from is frequently confused with fullness, a feeling they use to rationalize not eating.
This delayed emptying of the stomach and the bloating that accompanies it can lead to yet another uncomfortable symptom, reflux. Slightly different from the "acid reflux" caused by eating too much spicy food that many overthe- counter medications claim to eliminate, this type of reflux causes food to rise up into the esophagus or sometimes even into the mouth, and can increase the likelihood of developing bulimia.
All of these problems normally reverse relatively quickly with weight gain.
Low Blood Pressure, Dizziness, Hypothermia, and Poor Concentration
Anorexics also often experience dizziness and low blood pressure, which can lead to fainting spells. Although Olivia's coach noticed she was thinner, he didn't suspect a problem until Olivia fainted two weeks in a row at soccer practice. Parents should be alert to complaints by their children of feeling faint; this is not a common occurrence in healthy children, but can be an early symptom of an eating disorder.
Fainting spells can show up even before the child has lost a significant amount of weight, and can be dangerous. Maggie, an accomplished young horsewoman, was lucky she was not seriously hurt when undereating led her to lose consciousness while atop her jumping horse. Maggie had a hard time believing that just skipping breakfast and lunch could result in passing out. She had only lost a few pounds that month and was still technically within a normal weight range.
Another frequently-seen symptom, loss of too much of the body's essential fat stores, causes hypothermia, or low body temperature, which in turn will cause the anorexic child to feel cold when everyone else is comfortable, and require layers and layers of clothing to feel warm. The anorexic's surprisinglycold hands are another tip-off to a developing eating disorder. Other common symptoms are lethargy, apathy, and poor concentration. For reasons that are not well understood, most anorexics are able to concentrate on academic schoolwork, but may have difficulty following a simple conversation.
Natalie's parents were falsely reassured about some of the symptoms they were seeing because Natalie continued to get straight A's even as she struggled to remember what plans she had made for after-school transportation or to engage in a casual chat. Although she had clearly become more absentminded, it was hard for her parents to point to any clear sign of illness since all the changes were so gradual and subtle.
Adaptations to Starvation: Hair, Nails, Skin, and Muscle Changes
The anorexic's body adapts to starvation by focusing on maintaining the most essential major organ functions, while withholding nourishment from more superficial parts of the body, such as hair and nails. Brittle nails and extreme dryness of the skin caused by lack of protein and fat in the diet are common signs of anorexia, as well as loss of scalp, body, and even pubic hair.
Sarah's response to the realization that the thinning of her beautiful, flaxen hair was due to her weight loss was to break down into wrenching sobs. As superficial as it may seem, the loss of hair is often the only symptom anorexics worry about. I have seen a number of patients who were motivated to change their eating-disordered behavior solely for the sake of saving or restoring their hair. Because anorexics will often worry more about such minor symptoms than the more life-threatening aspects of the disorder, I often tell parents to explore what it is about the disorder that scares their child most, and to help them understand that improving their eating will help solve that problem.
With more extreme weight loss, patients may develop lanugo, a fine, downy body hair on their back, arms, and legs (and sometimes faces and necks) that is characteristic of the human fetus while it is still in the womb. On the bodies of anorexics, lanugo is thought to be a primitive attempt by the body to maintain body temperature, as this type of hair takes fewer calories to produce than normal hair. Anorexics may also experience bone pain when exercising, and despite the fact that they are exercising, muscle wasting. Muscle loss is particularly noticeable in the arms and legs, a change that at first thrills many anorexics.
Although the following information may be frightening to you as parents, it is important to remember that the body is capable of making a remarkable recovery once food intake is improved and eating-disordered behaviors are discontinued. Because cardiac symptoms are among the most serious complications associated with eating disorders, however, it is important to be able to recognize them if and when they occur in your child. Early signs that anorexia may be affecting the heart are fatigue, light-headedness (feeling dizzy upon standing or sitting up from a sitting or prone position), or cold, bluish, splotchy hands and feet. More serious symptoms, which warrant calling your doctor immediately, include slowed or irregular heartbeat, shortness of breath, chest pain, leg pain, and rapid breathing.
Heart palpitations (the subjective awareness of one's own irregular heartbeat) and chest pains are often experienced at night in bed, causing anorexics to fear they may be dying. Often these symptoms go hand-in-hand with bradycardia (slow heart rate indicated by a slow pulse) and low blood pressure. Although bradycardia is quickly resolved by adequate nutrition, unless it is rectified it can, in the most serious cases, put the anorexic at risk for congestive heart failure. An electrocardiogram (EKG) can confirm slowed heart rate and/or arrhythmias. Because the malnutrition of anorexia can reduce the size of the heart to a dangerous degree, chest X-rays are used to detect changes in heart size.
Some patients, keenly aware of their slow heart rate, become obsessed with measuring it. Heather was sure, as she counted heartbeats per minute as she lay in bed at night, that her heart had stopped between beats. Amy, noticing the same phenomenon, became hysterical and had her parents call an ambulance to take her to the emergency room.
Victoria told me that as scary as some of these physical signs are, she found them oddly reassuring. In her case, constantly feeling cold, having a slowed heart rate, and even brittle nails and hair all meant she could not be eating too much.
In rare cases, anorexics experience edema, or fluid retention, in their abdomen or legs, especially when they have entered a period of weight gain after sudden refeeding or have stopped abusing laxatives or diuretics. Edema is an early sign that the heart is not functioning well enough to handle the increases in fluid that naturally result when weight is gained or laxatives and diuretics are discontinued. If your child does experience such edema, close monitoring by your doctor can ensure that your child is not in acute danger. Again, while this symptom and others we describe are potentially dangerous, good, close medical supervision and a wholehearted effort to reverse the disorder is the approach that will get your child out of medical danger most quickly and safely.
As the anorexic body wastes away, so does the heart. Some researchers have noted that even a week or two of severe dieting can lead to substantial loss of heart muscle.
One example of a rare cardiac complication associated with severe anorexia is mitral valve prolapse. This type of heart-valve prolapse occurs because although the malnourished heart muscle shrinks, the valves inside the heart chamber do not. The result is a set of misshapen valves that do not close properly. The faulty valves cause blood to leak back into the heart chamber, which in turn causes palpitations and chest pain. Although mitral valve prolapse is a potentially fatal condition, it appears to be reversible with weight gain.
In the most extreme cases of anorexia, the cumulative effects of long-term starvation (an irregular heartbeat, edema, bradycardia, to name a few possible contributing factors) can cause sudden heart failure. Malnutrition has caused the heart to shrink, resulting in decreased cardiac output and low blood pressure. Finally, the heart simply gives out.
Most often, this type of sudden death occurs while the anorexic is asleep. Such is the insidious nature of anorexia; a disease in which slow starvation can coexist with such a surprising degree of functional well-being that sometimes an autopsy will show no obvious heart problems. The thought of chronic anorexia leading to sudden death is an extremely frightening one; but this tragedy does occasionally happen. Those most at risk are severe anorexics who have suffered a long period of extreme emaciation. By intervening early, you can be assured that you are protecting your child from this, the most devastating consequence of an eating disorder.
Osteopenia (reduced bone density) and later, osteoporosis (extremely serious bone loss), are among the most common and serious medical complications of anorexia. Osteopenia occurs early in anorexia and makes it unlikely that an adolescent will be able to accumulate normal amounts of bone mass. As the anorexic girl or boy matures, the risk that the low bone mass of osteopenia will progress to osteoporosis increases.
Anorexic women as young as in their late teens have been diagnosed with osteoporosis. Their bone loss is the direct result of both hormonal changes and malnutrition. Extreme weight loss renders the anorexic's emaciated body unable to produce the female hormone estrogen, which normally keeps the body's bones strong and healthy. A sure sign of dangerously low estrogen is the loss of menses. Nutritionally, extreme weight loss diets are usually low in protein and calcium, among other nutrients. As a rule, these deficiencies also contribute to bone loss, although some anorexics manage to consume adequate amounts of protein and calcium and still have serious bone loss. Another crucial nutrient is dietary fat. Too little fat affects the body's ability to make estrogen and absorb vitamin D, without both of which calcium absorption is seriously compromised. The result of these anorexia-driven changes is brittle bones that can fracture or break easily.
Unremitting weight loss is associated with continued decreases in bone density. The good news is that once an adolescent anorexic reaches a healthy weight, bone density improves, and the body builds even more bone with the return of menses. Yet most patients never fully restore their bone mass and are more likely than the average person to face bone problems in the future.
It is important to remember that simply getting periods back is not always enough to begin rebuilding bone; full weight restoration must occur before that happens. We stress this point because some medical doctors still mistakenly believe that getting periods back is enough to protect bones. It is not uncommon for some girls to resume menses at a lower-than-healthy weight. (For older teens healthy weight is defined as having a BMI of 20; for younger girls a BMI that is on a normal growth curve is considered to be healthy.) These anorexics may continue losing bone until they reach a healthy weight. Recent research, in fact, points to body weight as the most important determinant of bone density.
Some girls believe they are beginning to rebuild bone after being prescribed replacement hormones (estrogen, progesterone, or oral contraceptives). In fact, however, often they are not. Researchers are still trying to tease out why this is so, but it is likely that to be fully effective, hormones must interact with a constellation of nutrients (calcium and phosphorous are just a few of those).
Unfortunately, the underweight anorexic often cannot supply enough of these nutrients to spark the complex interactions necessary for bone formation. Adolescent anorexia is particularly devastating because adolescence is a time when children should be building bone to last a lifetime, not losing it. Ninety percent of a person's bone mass is accrued by the time he or she turns 20. For this reason, any disruption in hormone levels should be taken seriously.
Researchers have also found that anorexic adolescent patients lose more bone than adults with anorexia. Anorexics of any age are at risk for bone fractures. Usually, fractures will occur as the person ages or engages in high-impact exercises such as running on hard pavement.
Testing Bone Density
A bone density test commonly known as a "DEXA" (dual-energy X-ray absorptiometry) is the state-of-the art method for measuring bone mineral density. For anorexic adolescents whose disorder is a long-standing problem, and includes amenorrhea for six months or more, having your doctor order a DEXA (also known as a densitometry) can sometimes be helpful in breaking through the anorexic's denial that her eating behaviors are having an effect on her health.
After two years of maintaining a below-normal weight, first-year graduate student Selena finally agreed to have a DEXA. Her results came back comparing her bones to those of someone four times her age. "But I feel fine!" was her first response. Over the course of time, she was able to motivate herself to gain some much-needed weight by focusing on doing everything she could to protect her bones from more damage.
As with Selena, bone density tests are compared to a statistical norm, and do not measure actual bone loss unless they are repeated periodically. Only by doing a baseline test and then repeating it six months or a year later will you be able to tell if your child's bone density has improved or deteriorated.
Because it can take six months to a year of amenorrhea and restricted eating before any measurable bone loss occurs, DEXAs are not usually advised unless the anorexic has a long-term eating disorder. Many experts recommend a bone density test on anorexics whose amenorrhea lasts longer than six months.
For anorexics who fit this description, the test can be quite helpful and is offered by most major hospitals at a cost of $250 to $450. The test is relatively safe; the exposure to radiation is one-tenth of that of a chest X-ray.
Recovering Bone Density
Most experts believe that once it is lost, bone density cannot be improved without weight gain. Even with weight gain, only partial recovery of bone density is likely. As we mention on p. 118, supplemental hormones are not particularly effective in helping the anorexic rebuild bone, probably because the anorexic lacks all the nutrients necessary to interact effectively with these hormones. Estrogen supplements, in particular, also pose the problem of including periods in patients. The latest research indicates that supplemental estrogen, which in the past was routinely prescribed for anorexics (usually in the form of birth control pills) to improve bone health, is of little help. Estrogen also induces periods in patients whose self-starvation has caused amenorrhea, making it impossible for doctors to tell whether an eating-disordered patient has gained enough weight to protect her bones. For both these reasons, many physicians no longer prescribe estrogen to anorexics.
Relatively high intakes of calcium and vitamin D are usually recommended for the anorexic, even though research indicates that she cannot make use of these nutrients to build bone until she has returned to a healthy weight and has resumed menses. Standard advice for anorexics is to take 1,500 mg per day of calcium (healthy teens need 1,300 mg per day). Vitamin D is recommended at a dose of 400 IU per day; this is twice the usual recommended intake. There is no benefit to higher doses of calcium and vitamin D, and in fact large doses stress the body and interfere with the absorption of other nutrients.
Osteoporosis medications such as Fosamax show some promise in helping restore bones in anorexic patients. Although these drugs are currently being tested for anorexics, they are not yet routinely prescribed for them. Only weight gain, and the better nutrition it requires, can reliably improve the bone density of eating-disorder sufferers. Your goal as parents of an anorexic child should be to improve nutrition and restore weight as quickly as possible.
Researchers have still not determined to what extent a bout of anorexia during childhood or adolescence will have on future fertility. Although ample research has shown that adult anorexia, if not reversed, is likely to lead to infertility, there are numerous reports of severely low-weight, even chronic, anorexics becoming pregnant.
Because of these contradictory data, little is gained by telling young anorexics (who often worry that they might not be able to have children) that they will face infertility as adults. Instead, they should be assured that if their disorder is treated and resolved, they can expect to bear children if they want to.
My patient Nellie was not assured of this, but instead was told by a school nurse that she was ruining her chance of ever having a family, thanks to her eating disorder. In response, Nellie's eating became even more selfdestructive. When we discussed the issue, she told me, "If I can't have kids, I might as well be really thin."
Handled sensitively, however, the question of an eating disorder's effect on future fertility can sometimes be used as motivation to turn around the disorder.
Angela has suffered from anorexia for all of her teenage years, and as a result, has never had a period. Now, as a senior in high school, she is acutely aware that she eventually wants children, but she worries that her disorder may affect her chances of doing so. She and I are focusing on the natural desire that someday she will have healthy children to help her get motivated to increase her weight.
Another fact that can be used as motivation to end a course of anorexia before a teenager reaches adulthood is that there is evidence of higher rates of premature and low-birth weight births among babies born to mothers with a long history of anorexia.
It is important to guard against giving a sexually-active anorexic teen the impression that her present condition, including lack of periods, is a guarantee that she will not get pregnant. Even amenorrheic girls with anorexia can become pregnant if they do not practice birth control. Despite the lack of periods, the bodies of these girls will occasionally and unpredictably create a hormonal environment that allows pregnancy.
The most common blood work findings are leukopenia (low white blood cell count) and mild anemia (low iron count), and, in rare cases, thrombocytopenia (low platelet count).
Usually, when lab tests reveal these abnormal blood values, the anorexic feels no symptoms. Yet almost immediately upon resumption of adequate food intake, and even before she necessarily begins gaining weight, she feels noticeably warmer, much more energetic, and exhibits improved skin color. Tonya was thrilled to have me feel how warm her hands had become since she started improving her diet. Warm hands are a good sign your child is moving in the right direction.
As an anorexic's condition worsens, her daily life is more likely to be affected by these hematologic changes and the cardiac symptoms we have described. She will most likely notice fatigue, weakness, dizziness, and the inability to exercise at former levels. Jill was a dancer who also liked to jog and play tennis. As her anorexia worsened, she increased her exercise in an attempt to burn off more and more calories and fat. She recognized how serious her problem was when eventually she didn't want to go to dance class, turned down offers to play Frisbee, and had to walk instead of run her usual jogging route.
I notice regularly the difficulty my anorexic patients have with even mild exercise. My former Dartmouth College office was on the third floor of a turn-of-the-century building. Though my anorexic patients usually declined to use the elevator, those formerly athletic girls were exhausted and out-of-breath after climbing three flights of stairs.
I remember my patient Jill who was delighted when her nutrition and weight recovery allowed her to climb those stairs with ease. Soon she was back to a fairly rigorous, but not excessive, exercise schedule of no more than an hour a day.
As in Jill's case, the changes in blood values and cardiac function that we have described are secondary to malnutrition, and improve almost immediately with better nutrition and weight gain.
Parents should also be aware, however, that even in severe cases of anorexia, blood values can be normal and cannot, therefore, be used as a proof of adequate nutrition. Sometimes lab values improve before your child has reached a safe, healthy weight. This is often confusing to parents whose eating-disordered child may point to improved lab findings as proof that they need not continue to gain weight. I remind parents that though their child looks and reports feeling energetic, if she remains too thin, she is still not cured and remains at risk for anorexia-related health problems. This can be a difficult juncture for some parents because their child seems to have regained her health while remaining "fashionably" thin. Your child's pediatrician or your family doctor can help you assess whether your child is at a truly healthy weight.
Fluid and Cholesterol Imbalances
Anorexics are often dehydrated from restricting their fluid intake, undereating, and sometimes misusing diuretics, all of which are reflected in an elevated blood urea nitrogen (BUN) reading.
Although anorexics usually have low cholesterol levels, abnormally high levels are not uncommon. Some researchers suspect these abnormally high cholesterol levels are related to the effects of starvation on the liver. Without adequate nutrition, the liver, which both makes and metabolizes cholesterol, is unable to break down cholesterol properly. High cholesterol levels are also thought to be caused by starvation-induced abnormalities in estrogen, thyroid, and other hormones.
Whatever the cause, high cholesterol is most likely to occur in acute anorexia, and is much more common in children and adolescents with anorexia than in adult patients.
High cholesterol associated with anorexia usually disappears either with weight restoration or over many years of chronic anorexia. Also important to this problem is that anorexics should not be treated for high cholesterol levels with standard low-fat and low-calorie diets, an approach that would only worsen the patient's malnutrition and likely raise her cholesterol levels even higher. Like other findings associated with anorexia, as the patient recovers, abnormally high cholesterol levels, along with the abnormal liver function tests that often accompany them, return to normal.
If your very thin child is found to have high cholesterol, anorexia is a likely cause, particularly if previous tests have found cholesterol to be normal and there is no family history of high cholesterol. You should be careful how this information is passed on to your child since it may trigger even more stringent restrictions. It is helpful to tell your child that the heart problems anorexics face are unlike the kinds of heart problems some adults have; malnutrition can dangerously shrink and weaken her heart, but she is certainly not suffering from the hardening of the arteries some adults develop on long-term, high-fat diets.
Instead of reducing dietary fat to lower cholesterol as an adult might be advised, the anorexic child needs to increase fat intake and actually reduce consumption of fruits and vegetables (which fill their stomachs and make it difficult to eat anything else) to achieve a lower cholesterol level.
One of my patients, Allison, was told by her psychiatrist, "I think you should know that your cholesterol is above normal." Allison, whom I was treating for severe anorexia, immediately removed the little bit of fat that remained in her diet and proceeded to lose more weight, ever more certain that this was the healthy thing to do. I had to inform Allison, her doctor, and her parents about the anorexia and cholesterol connection and reassure them that fat was not only okay, it was necessary to add it to her diet before she could start to make progress. Allison has made a hard-won recovery and is now in graduate school.
Low levels of magnesium, zinc, and phosphate are sometimes found among malnourished anorexics. Low levels of magnesium contribute to osteoporosis and can sometimes lead to cardiac arrhythmias, and low phosphate can contribute to weakness and fatigue. One of the unfortunate consequences of low zinc is a decrease in taste sensitivity. Anorexics often complain that food just does not have any taste to them, which further reinforces their unwillingness to eat. Though the anorexic may be losing calcium from her bones, calcium blood levels are usually normal. The anorexic who purges is at an even higher risk for potassium problems than the bulimics we describe on pp. 128–29 in this chapter.
The elevated serum carotene levels, or hypercarotenemia, found in many anorexics often results in a yellowish cast to the patient's skin. This is thought to be a consequence of the malnourished liver's inability to metabolize vegetable pigments.
Anorexia affects the body's hormonal balance in profound ways. Some hormone levels are lowered while others are elevated. Hormones are necessary for the development of healthy bones, growth, and the onset of puberty and maintaining a healthy energy level and mood. Hormones responsible for adolescent sexual maturation—estrogen in girls, testosterone in boys, and LH (luteinizing hormone) and FSH (follicle-stimulating hormone) in both girls and boys—tend to be lowered in anorexics. These neuroendocrine findings show how hormonally the anorexic adolescent regresses to the level of a prepubescent girl or boy.
Cassie was graduating from high school, yet she had never had a period. Her anorexia began just as she was about to go through puberty, and she had only recently sought treatment for it. Because the anorexia had prevented normal maturation, her body looked like that of a young girl's—she was barely five feet tall and showed very little breast development. Her doctors were worried about the health of her bones and her ability to have children.
Thyroid function tests are occasionally abnormal in anorexics, a finding that confirms researchers' observations that starvation sets the body's basal, or resting, metabolism at a lower level to conserve energy. Lowered thyroid hormone levels, like slowed heart rate, cold intolerance, dry skin, and constipation, are part of the body's effort to keep functioning even as it is vastly undernourished.
The malnutrition of anorexia can cause metabolic changes that may be picked up on standard thyroid function tests. These lab findings are sometimes misinterpreted as a condition known as Euthyroid Sick Syndrome, when actually the changes are due to starvation. The thyroid hormone treatment usually prescribed for Euthyroid Sick Syndrome will not correct an anorexic's abnormally functioning thyroid—only weight restoration will. Hormone replacement, in fact, may cause further weight loss because it raises the metabolism. Another reason not to give anorexics thyroid hormones is that they are known to abuse them in an effort to lose even more weight.
Anorexic patients sometimes suffer impairments in their ability to think clearly, known as "cognitive deficits." Examples of these deficits include attention/ concentration difficulties, impaired automatic processing, difficulty problem solving, inflexibility, poor planning, and lack of insight.
These characteristics account in part for the difficulty of treating entrenched anorexia. Erin, 13, had a vacant, spacey look and difficulty carrying on a coherent conversation. She seemed unable to summon the energy even to project her voice, which made her responses to my questions bare whispers. Many of my patients are extremely bright, and Erin was no exception. So it was surprising that she could not remember simple statements made just minutes before in our sessions. Erin seemed immobilized by her eating disorder, unable to make use of any of the strategies that I or her therapist suggested. She remained focused on only one thing: not eating. She refused to let her parents watch her eat and drank so much diet soda that her doctor was worried she was washing critical electrolytes (minerals essential to maintaining the body's water and pH balance) from her body. Erin also had a harder time being honest than most of my patients. After several sessions, she confessed that she had been flushing her meals down the toilet.
The inflexibility of the anorexic is often striking to parents. Their formerly easygoing child now has to have everything just so, and flies into a rage if minor things don't go right.
Kelsey's mother was being run ragged by her increasingly persnickety daughter. Kelsey complained and obsessed about everything from her clothes and the noise level in the house, to, of course, the food that her mother made and served. Kelsey's mom also noticed how her daughter fell apart if plans had to be unexpectedly changed. All of these were things she used to handle with ease before she lost weight. Now Kelsey, who once had time to help her younger siblings in the morning, has trouble just getting herself ready for school.
In severe cases of anorexia, brain changes can place patients in danger of harming themselves, although self-harming behaviors such as cutting or burning are more common among bulimic patients. Sometimes self-harm is unrelated to brain changes, and can even precipitate anorexia or bulimia. Children engaged in these kinds of behaviors should be monitored closely by a physician or psychologist
My patient Elizabeth, at 12 years old, weighed only 60 pounds. During our first session, she staged a tantrum, locked herself in the rest room, and would not come out, despite the pleading of her mother. Finally, we had to call a security guard to get her out of the rest room. Elizabeth's condition had made tantrums like this a common behavior of hers. Her parents had to lock up all toxic cleaning supplies because Elizabeth regularly felt suicidal enough to drink them.
Most experts believe that cognitive impairments such as those of Erin, Kelsey, and Elizabeth are related to metabolic and endocrine abnormalities associated with malnutrition, and that they improve with refeeding and weight gain. These patients may also be suffering from obsessive-compulsive or other psychiatric disorders that the emotional stress of the eating disorder has brought to the fore. If the types of problems we describe in these three cases do not begin to resolve with weight gain, you should see that your child gets a psychological evaluation; your child may benefit from counseling and/or medication.
Suicide in both anorexia and bulimia is a major cause of death. Chronic eating disorders, obsessive-compulsive disorder symptoms, drug abuse, and major depression all increase the risk for suicide or attempted suicide.
It is also possible, however, that some of these cognitive deficits may be connected to the structural changes in the brains of anorexics that have been detected by researchers in recent years, although there is as yet no clear scientific proof of this link.
The need for swift and aggressive treatment of an eating disorder is underscored by two areas in which the damage may not be completely reversible: bone mass changes and brain abnormalities. Though there is some recovery in these areas with weight gain, recent research casts doubt on any guarantee of a full recovery. Bone loss due to anorexia can occur in as little as six months and even bouts of anorexia as brief as three months have been associated with brain changes. These findings on bone mass changes and brain abnormalities make early recognition and aggressive treatment essential for young people.
The relatively brief but dangerous period when an anorexic first begins to eat or be fed again is known as "refeeding." Before we go further, we want to stress that only severely malnourished and underweight anorexics who are refed rapidly are at risk for the refeeding problems we describe. Our hope is that your child's eating disorders will be turned around well before any of these complications become an issue. We discuss them here largely because they illustrate how dangerous anorexia can become.
Because rapid refeeding is almost impossible to achieve without tube feeding (liquid meals fed through a tube, which runs through the nose and into the stomach) or TPN (total parenteral nutrition; that is, liquid nutrition given directly into a large vein), refeeding complications are generally only seen in the hospital settings where tube feeding or TPN are administered to save a severely emaciated anorexic's life.
Tube feeding, moreover, which was once routinely used to treat anorexia, and TPN (a more medically complicated method of refeeding) are now rarely used for eating-disordered patients, and instead are reserved for life-threatening cases of chronic food refusal. Today, treatment is more focused on getting the anorexic to choose to eat, not simply ensuring she is receiving adequate nutrition.
In the rare instances when refeeding complications do occur, they can lead to severe myocardial dysfunction (heart muscle problems) and sometimes seizures. The severely malnourished heart, weakened and reduced in size, can also have difficulty managing the sudden increase in blood flow caused by refeeding. Although the health of the heart quickly improves with adequate nutrition, if refeeding is done too quickly, the heart can fail.
Refeeding can also result in acute dilation of the stomach, characterized by the sudden onset of abdominal pain, nausea, vomiting, and persistent abdominal distention. Often this phenomenon can be treated by inserting a nasogastric tube, which allows the removal of foods and fluids. In extremely rare cases, surgical intervention is called for to prevent a rupture of the stomach, which is nearly always fatal.
Anorexia in the refeeding stages has also been associated with acute pancreatitis.
Are Your Child's Lab Findings Too Good to Be True?
Often, the need for such aggressive treatment is masked initially by the time it takes for lab findings to reflect serious consequences of anorexia. The lowered metabolic rate of anorexics that we have described is thought to be one reason that laboratory assessments of anorexics, despite the fact that they are starving, often will appear normal in many respects. It is important, however, that you as parents not be lulled into thinking your child is fine because the lab tests are normal. Laboratory values may be okay for quite some time and then suddenly take a dramatic turn for the worse. Children and teens with anorexia should have regular medical monitoring (routine screening blood tests, measures of heart rate and blood pressure) because, as we have said, anorexia can cause physical complications in every organ system in the body.
Medical Monitoring vs. Full Workups
Regular medical monitoring should not be confused with the excessive medical tests that we discouraged at the beginning of this chapter, which aim to find a medical reason to explain the eating-disordered child's symptoms. Ongoing medical monitoring alerts parents and professionals to serious impending problems. It is most important when the anorexic is not making at least slow, steady progress or is gaining too quickly and might be at risk for the refeeding complications we discussed.