Inside this issue: Tis the Season to Avoid Holiday Meltdowns 3 What Are Eating Disorders? 4 What Warning Signs Should I Look For in my Child/Adolescent 5 Nutrition 101 6 Parenting Perspectives V O L U M E 2 2 , N O . 1 W I N T E R , Seeking Professional 8 Help for a Child With an Eating Disorder Eating Disorders and Medical Care 12 One Parent’s Perspective: Walking on a Tightrope 14 Caption describing picture or graphic. Myths vs. Facts about Eating Disorders 17 Are You Worried About a Friend? Eating Disorders in Young Children 19 Secondary Story Headline 21 Siblings Need Support, Too! 23 Parenting Perspectives is now online, all the time! 24 1 2 0 1 5 Parenting Perspectives VOLUME 22, NO.1 WINTER, 2015 On the Cover: Three year old Lilly Evanoff is the daughter of Tim and Theresa Evanoff of Morgantown, and the granddaughter of Ken and P.J. Neer, also of Morgantown; Roger and Linda Hedrick of East Daily, WV; and Rebecca Hedrick of Lexington, NC. Parenting online !!! Please let us know if you would like to receive notification when new issues are available by sending your email address to [email protected] ...or go to www.lawv.net to download as many copies as you would like! Like us on Facebook at WV Parenting Perspectives This newsletter is published by the West Virginia Bureau for Behavioral Health and Health Facilities for parents of children and adolescents. All material submitted for publication must be signed. Parenting Perspectives reserves the right to refuse submissions and to edit submissions selected for publication. Editorial Board Dianna Bailey-Miller Bill Albert Deana Bragg Gloria Shaffer Rhonda McCormick Anne Cronin Angela White Parenting Perspectives Susannah Grimm Poe, Ed.D., editor 176 Gilboa Rd. Fairmont, West Virginia 26554 Email [email protected] 2 ‘Tis the Season... Avoiding Holiday Meltdowns! For those kids needing routine and who are easily overstimulated, prepare them before hand as much as possible. “Social Stories” are a great resource. Explain the location you will be visiting, when presents will be opened, what traditions the family will participate in, and who will be there. Give your child a schedule of events for special activities, particularly on days with lots of transitions. Whether it’s a written schedule or one with pictures for younger kids, your child will feel calmer and safer knowing what is coming up. Discuss the schedule regularly and provide info for each event. For example, let your child know which events will take place outside and which will be loud or crowded. Sometimes just knowing what’s next can help children with behavioral and sensory issues feel less anxiety. If possible, teach your child a word or signal to use if he or she feels overwhelmed and needs a break. Assure your child if he or she uses the code word, you will respond right away. Plan quiet areas ahead of time so your child can have a sensory and demand free time out. Don’t forget to stay on a regular schedule. School programs, church services, late dinner can take a toll on temperament. Try to keep the sleeping and eating schedule your child is used to, and make sure they have time to just unwind in each day. (You, too!) Children with significant sensory sensitivities may require a little extra planning to enjoy holiday festivities. For example, you may need to bring along ear plugs or headphones if you will be in a noisy environment, or sensory fidgets if the child is expected to sit still. An iPAD or game toy with the sound turned down might allow a short term escape and allow you to enjoy the festivities. For sensitive kids who need to wear dress clothes for events, bring along some soft clothes for them to change into as soon as possible. If your children have food sensitivities or allergies that prevent them from eating holiday treats, plan ahead to offer alternatives like all-natural candy or a gluten-free treat from home. Prepare your host with an explanation of your child’s eating challenges, and provide food or meal options that will accommodate those needs. For example, some children can join the family with their own food brought from home, others may need to sit a little away from the rest of the crowd in order not to be overstimulated. If your child is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holiday distractions can cause overload. Allow children to help you decorate for the holidays so they are involved in the changes that take place in their comforting environment. 3 What Are Eating Disorders? Eating disorders are a relatively common yet widely misunderstood group of psychological disorders. Eating disorders are characterized by certain eating behaviors and ways of thinking about one’s body that create a great deal of distress and usually interfere with several areas of a person’s life (like school, work, friendships, etc.). Eating disorders can vary greatly in the types of behaviors a child or adolescent may show, as well as the shape and size of the child. In the following chart, we will discuss different types of eating disorders as well as “red flags” for eating disorders in children and adolescents. It is commonly believed that eating disorders only occur in individuals who are clearly underweight or malnourished; in fact, this only represents a small Name Anorexia Nervosa (AN) portion of individuals with eating disorders. Although having a significantly low weight is required for a diagnosis of Anorexia Nervosa, an individual of any weight can have an eating disorder. Also, many believe that only girls are affected by eating disorders. In fact, at least 1 in 10 eating disorder cases are boys and men. A more reliable indicator of an eating disorder than weight is a fear of becoming fat, having a poor body image, and placing a great deal of importance on one’s weight and shape, even if the individual is losing weight. Below is a table outlining the criteria of the different eating disorders based on the criteria set for in the DSM-5: Weight Status Individual has a significant weight loss (or failure to gain weight during a growth spurt) Has a low weight given their height and developmental trajectory Behaviors May restrict food intake OR May eat large amounts of food quickly (binge) and then purge (self -induce vomiting, excessive exercise, abusing laxatives, diuretics, etc.) Bulimia Nervosa (BN) Individual is of normal weight or higher Binges and purges Binge Eating Disorder (BED) Individual is of normal weight or higher Binges without purging Other Specified/ Unspecified Feeding or Eating Disorder (OSFED/ USFED) No specific weight criteria Individual doesn’t fit into any of the above categories Shows significant symptoms of an eating disorder 4 What Warning Signs Should I Look For in My Child/Adolescent? Behavioral Spending excessive amounts of time in front of the mirror Avoiding mirrors and scales Wearing baggy clothing Using scales frequently Dieting and strict food rules (a.k.a., some foods may be considered “bad” or “off limits”) Evidence of bingeing, such as large amount of food going missing, spending large amounts of money on food, etc. Skipping meals Frequently going to the bathroom after meals Spending less time with friends and family Avoiding eating in front of others Psychological Depressed/irritable mood Poor body image Decreased self-esteem Decreased energy Loss of interest in usual activities and hobbies Preoccupation with food, calories, nutritional information, diets, etc. Physical Brittle nails and/or hair Dry skin Major weight fluctuations Weakness/feeling faint Often feels cold, especially in hands and feet Stains on teeth from vomiting Callouses on knuckles from inducing vomiting Abdominal pain/constipation 5 Nutrition 101 By Brandi Sentz, MHA, RD, LD Although we know many of the risk factors, signs, and symptoms of eating disorders, research on prevention of eating disorders has been limited. What we do know is, developing a good relationship with food and exercise is important for a healthy life whether you have an eating disorder or not. The following tips may be helpful in establishing a healthy connection between the body and nutrition and lifestyle: you have served them. Take a flexible attitude toward food. For instance, parents may say, “It’s okay to have a piece of cake at the birthday party, but it may leave me feeling sluggish if I eat cake for all three of my meals today”. Model moderation when it comes to food choices and eating. If you start these habits early, it is much easier to get your children on board-- but later is better than never. Just eat! Exercise with your kids. Our bodies like for us to eat something every 4-5 hours we are awake (for younger children this would be more often). Ideally, we would eat, rest from eating, and then eat again. Likewise, the body needs a break to allow digestion to take place, allow fullness and hunger cues to register, and blood sugar levels return to normal. Thus, it’s best not to “graze” or snack constantly. Grab the family and go for a walk. Shoot baskets in the driveway. Your kids will love you are spending time with them, and won’t realize they are even exercising. Most of the time exercise is seen as a punishment, something we have to do to burn calories and lose weight. If you can incorporate these fun activities into your daily routine, the activity becomes the exercise. Start the morning with breakfast. So many times people rush out the door without eating a healthy breakfast. Breakfast continues to be one of the most important meals of the day. It is literally “break”ing your “fast” from the night. It does not have to be an elaborate meal, but you should have a protein-carbohydrate combination. For example, many people like yogurt with fruit in the morning—it’s quick and easy and healthy! By eating breakfast, you will be more clear headed and ready to start the day. Also, studies show that children and teens who eat breakfast are less likely to develop eating disorders. Turn the screens off. No more than 2 hours of screen time per day is recommended for children. Screens include computers, televisions, video games, and phones. Set a limit and stick to it. More than 2 hours of screen time leads to more sedentary activity as well as missed opportunities to be doing something fun outside or even playing a game as a family inside. Television and internet can also be harmful to developing personalities—encourage them to be their own person (not their Facebook profile or their favorite actor on television). Be a good role model. You can’t expect your child to eat her fruits and vegetables if you don’t eat them. Eat with your children and let them see you eating the healthy foods Continued on the next page. 6 Nutrition 101 Have dinner as a family. As children get older, the family dinner becomes more difficult to achieve due to busy sche Have Dinner as a Family. As children get older, the family dinner becomes more difficult to achieve due to busy schedules. Try to make time for this one simple act. Even if you have to eat away from home—try to eat as a family. For many families, it is a time to reflect on the day and decompress. Family dinners are protective against eating disorders as well. Take 30 minutes and enjoy your family! Enjoy all foods in moderation. Go get that ice cream cone after you’ve finished mowing the lawn on a hot day, but don’t do it every day. By showing your children we can include these foods into our diet and enjoy them as treats occasionally, we avoid having negative feelings and guilt over eating them. A healthy relationship with food includes being able to include the not so healthy foods into our routine. Go to McDonald’s and get that Happy Meal, but don’t do it all the time. Avoid “weight” talk. With the multi-billion dollar “diet” industry it is difficult to not talk about weight or size but we want our children to feel comfortable with their bodies. It is important for children to know everyone is made differently and they are their own unique person. By eating healthy and exercising with your children, you are teaching them to respect the body they have. Parenting online !!! Please let us know if you would like to receive notification when new issues are available by sending your email address to [email protected] ...or go to www.lawv.net to download! Like 7 Seeking Professional Help For a Child with an Eating Disorder by Jessica Suisman, MA If an eating disorder is suspected in a child or adolescent, it is imperative to seek professional treatment promptly. Indeed, research suggests that timely treatment predicts a better chance of full recovery from the eating disorder. In this article, we discuss the types of professionals that are likely to be members of a child’s treatment team, how to initiate treatment, and some of the evidencebased psychological interventions for eating disorders. We also discuss some of the treatment settings that a person with an eating disorder may encounter (outpatient treatment, partial hospitalization, and residential treatment), and we recommend some specific resources for identifying eating disorder treatment providers. Physician (often a Pediatrician) – Individuals with eating disorders need frequent monitoring by a physician, given the high risk for deadly medical complications of the eating disorder (see page 12). The physician will monitor weight, vital signs, and other indicators of nutrition and health. If a patient is dangerously malnourished or medical complications are severe, hospitalization may be necessary. The physician will ordinarily work with both the patient and his/her family. Registered Dietitian – The dietitian typically designs meal plans for the person with an eating disorder, provides education about food and nutrition, and helps the patient to achieve a healthy weight. In some treatments, the dietitian may work directly with the patient, and in others, the dietitian may work primarily with the parents to aid them in feeding their child in a way that will help him/her to become healthy. Psychiatrist – For some individuals, psychiatric medications, such as antidepressants, may be beneficial in reducing eating disorder behaviors. The physician on the team may prescribe these medications, but for more specialized medication management, a psychiatrist can be an integral member of the team. Members of an Eating Disorder Treatment Team The members of your child’s treatment team may vary depending upon your child’s specific symptoms and the type of treatment that is being provided. Listed below are the types of professionals that most commonly work with a child and her family. Patient and his/her family – Most importantly, the patient and patient’s family are key members of the treatment team! The hard work of overcoming an eating disorder cannot be accomplished only in the office, and much of the work has to be done by the patient with the help of his/her parents at home. Psychologist or Therapist – This team member will typically help the person with an eating disorder begin to eat normally again, challenge distorted beliefs about food and weight, and work toward improved body image and self-esteem. Ideally, the psychologist or therapist will also work closely with the child’s family in order to help family members support and nurture their child. First Steps in Seeking Treatment If you suspect that your child has an eating disorder, finding a group of providers can feel overContinued on the next page. 8 Seeking Professional Help For a Child with an Eating Disorder whelming. Depending on where you live, there may most effective for eating disorders. When searching be treatment programs available that include all necfor a psychologist/therapist, we recommend that you essary members of a treatment team, ideally with all seek a provider that has training in and uses these providers at the same location. In other cases, you approaches: may need to identify each member of the team separately, and they may be located in separate offices. Family-Based Therapy: If you think your child has an eating disorder, it is imFamily-based therapy (also sometimes referred to perative to seek an assessment by an expert as soon as as the “Maudsley Approach”), is the most effective possible (see the end of this treatment for children and adolesarticle for information on cents with anorexia nervosa, finding eating disorder with growing evidence for treatment providers). bulimia nervosa. This is “Family-based therapy (also This may mean a family therapy where traveling away parents are tasked with sometimes referred to as the from home for an ensuring that the child “Maudsley Approach”), is the appointment, espereceives adequate nucially in West Virtrition and does not most effective treatment for ginia, where findengage in binge eating ing a physician or or purging behaviors. children and adolescents with psychologist This is an intensive trained in eating distreatment that may inanorexia nervosa” orders can be difficult. volve monitoring of the Prior to your appointchild 24-hours a day, parment with an expert, it may ticularly in the early phases of also be useful to make an appointtreatment. Later in treatment, control of ment with your family physician or pediatrician for an eating is handed back to the adolescent in a gradual initial medical evaluation. As emphasized on page 12 fashion. Although research on this type of treatment of this issue, the medical complications of an eating initially focused on children and adolescents, redisorder can be deadly, and your child needs prompt search is now being conducted on the use of familymedical attention. Your physician will evaluate your based therapy with young adults (i.e., individuals child for an eating disorder and may be able to refer ages 18+). Family-based therapy typically lasts about you to a treatment team. 1-year, although it may be longer or shorter dependWhen identifying a treatment team, it is important ing on your child’s progress. to note that research strongly supports the involvement of family members in helping a child or adolesCognitive-Behavioral Therapy: cent to overcome an eating disorder. Ask your potenCognitive-behavioral therapy focuses on cognitial treatment providers if they plan to incorporate the tions (thoughts) and behaviors (things a person family into the treatment process. does). A cognitive-behavioral therapist will work with a patient and the family to help the patient Evidence-Based Psychological Interventions for change his/her behaviors (e.g., binge-eating, dieting) and thoughts about food, body, and weight. This Eating Disorders There are many types of psychological intervenform of therapy generally lasts for about 20-40 Continued on the next page. tions that practitioners may use. Here, we focus on two types of therapy that research has shown to be 9 Seeking Professional Help For a Child with an Eating Disorder sessions. Research studies suggest that cognitive-behavioral therapy works particularly well for bulimia nervosa and binge eating disorder. the physician and registered dietitian weekly, with the frequency of these appointments decreasing as the patient achieves a more stable medical and nutritional status. Treatment Settings and Locating a Treatment Team Intensive Outpatient Program: Individuals with eating disorders may receive An intensive outpatient program (IOP) is a kind treatment in several different settings, depending on of treatment that is more intensive than traditional the severity of the eating disorder and outpatient treatment, but less intensive medical complications. After than the residential or partial your initial evaluation, day services described beyour physician or menlow. Often IOP protal health provider is grams include about likely to recom10-12 hours of ser“Treatment was very helpful. You mend one of the vices a week (in below treatthe mornings or learn what things trigger you and how ment settings evenings), so to handle it. Recovery doesn’t come that the indifor your vidual may child. Before all at once; it’s a gradual thing. You still be able to starting any participate in treatment, slip up several times, but it becomes other daily you may activities such need to further and further apart. Eventually as school. check with you don’t have to think about your your insurPartial Hospiance provider eating disorder as much, and you can talization: to ensure they Partial provide coverage just live your life.” DECC patient now in recovery hospitalization profor the treatment grams are designed you are seeking. Unfor patients that need a fortunately, many of the higher level of monitoring treatment options below are and care than outpatient treatment not covered by some insurance can provide, but may not need residential (i.e., 24 providers (e.g., many insurance providers will not hours/day) treatment. Partial hospitalization procover residential treatment). grams typically involve programming daily, but the patient returns home on his/her own in the evenings. Outpatient Treatment: There are no partial hospitalization programs excluOutpatient treatment is used when the person sively for eating disorders in West Virginia, so pawith an eating disorder is medically and psychologitients may need to travel out of state for this type of cally stable enough to be treated without daily monicare. toring by medical or psychological staff. Typically, patients in outpatient treatment will meet with a psychologist or therapist one or two times Continued on the next page per week. Early in treatment, they may also meet with 10 Seeking Professional Help For a Child with an Eating Disorder Residential Treatment: Residential treatment is recommended for patients who are severely malnourished, suffering from other medical complications that require close monitoring, or when patients previously in outpatient or partial hospitalization treatment are not improving. There are no residential treatment centers for eating disorders in West Virginia, so patients needing this level of care need to travel out of state. Residential treatment is 24-hours a day, and patients live at the residential treatment center from a few weeks to a few months. Patients receive daily therapy, medical treatment, and medication management. Often, patients who complete residential treatment programs may be referred to a partial hospitalization program before returning home. Other resources: National Eating Disorders Association: Provides information on treatment for eating disorders: http://www.nationaleatingdisorders.org/treatment Academy for Eating Disorders: Search for an eating disorder professional in your area: http:// www.aedweb.org/web/index.php Families Empowered and Supporting Treatment of Eating Disorders (FEAST): An organization of and for parents and caregivers to help loved ones recover from eating disorders by providing information and mutual support, promoting evidence-based treatment, and advocating for research and education to reduce the suffering associated with eating disorders. http://www.feast-ed.org/ Inpatient Treatment: Although sometimes the terms “inpatient treatment” and “residential treatment” are used interchangeably, they are actually different forms of treatment. Inpatient treatment is similar to residential treatment in that it is a 24-hour a day treatment, but it is short term (average stays are about 1 week) and typically focuses on patient stabilization and medication management. These facilities are often general psychiatric facilities, rather than specifically designed for eating disorder treatment. Common reasons for admission to an inpatient unit in patients with eating disorders include acute suicidal ideation or other selfharm behaviors. Locating Eating Disorder Treatment Providers and other Resources: West Virginia University Disordered Eating Center of Charleston: Outpatient treatment providers located at the Charleston Area Medical Center hospitals in Charleston, WV. Treatment team includes a psychologist, registered dietician, pediatrician, and psychiatrist. For more information, visit http:// charleston.hsc.wvu.edu/DECC/Home To set up an appointment, call 304-388-1000. 11 Jessica Suisman is a predoctoral Psychology Intern at the WVU School of Medicine, Charleston Division; Charleston Area Medical Center Parenting online !!! Please let us know if you would like to receive notification when new issues are available by sending your email address to [email protected] ...or go to www.lawv.net to download as many copies as you would like! Eating Disorders and Medical Care by Dr. Stephen Sondike As the medical consultant for the Disordered Eating Center of Charleston (DECC), my primary job is to keep our patients safe while in treatment with the psychologist and dietician. It is true that most individuals with eating disorders eventually do well and recover. However this process often takes time, often years, and during this process close monitoring is needed to minimize negative effects on both short and long term well-being. Statistics suggest that up to 15 percent of those suffering from eating disorders eventually die from their disease. The precise mortality due to anorexia nervosa, bulimia nervosa and other eating disorders is hard to know because these diseases take a toll on every organ system in the body, and the effects may either be apparent immediately, or take their toll over time. Therefore, an individual who has been struggling with anorexia nervosa over a long period of time may die of heart failure, and the death may be reported as “cardiac failure” rather than “anorexia nervosa.” As those with eating disorders work towards recovery, my main role is to anticipate, manage, and help prevent some of these negative consequences and promote a lifetime of good health. Some of the most profound effects that malnutrition has on the body affect the heart. The most common cardiac disturbance seen in anorexia nervosa is a low heart rate (less than 60 beats per minute). The medical term for this condition is bradycardia. Bradycardia is due to both lowered metabolic rates as the body tries to slow itself down to compensate for lowered calorie intake, a weakened heart wall, and disintegration (atrophy) of the heart cells themselves. People with bradycardia feel tired, weak and become easily fatigued. Often bradycardia due to nutritional deficit is mistakenly attributed to the low heart rates seen in elite athletes. Whereas an “athletic heart” is stronger and better functioning, an anorexic heart is weaker. Athletes with low heart rates do not feel tired 12 and weak; people with eating disorders typically tell me their athletic performance has worsened since their heart rate went down. Since a low heart rate indicates a weakened, susceptible heart, the person is more susceptible to cardiac failure and death due to arrhythmias and infection. It also makes a person susceptible to increased heart rate and lowered blood pressure when standing (othostasis), as the heart rate tries to speed up to get blood to the brain when standing. Symptoms include dizziness on standing and passing out. The one arrhythmia which is most devastating, and more common in eating disorders, is known as a “prolonged QT interval”. Prolonged QT can be diagnosed by an electrocardiogram. As the heart slows and weakens, certain electrical functions of the heart are disturbed. A prolonged QT is associated with sudden cardiac death. Everybody with an eating disorder should have an EKG, and a finding of prolonged QT requires immediate hospitalization in a telemetry ward or intensive care unit. Other common heart conditions seen in eating disorders are mitral valve prolapse, as decreased volume to the heart causes the mitral valve to get pulled inward, and pericardial effusion (fluid around the heart). The endocrine system is also strongly affected by malnutrition, and the most concerning hormonal disturbance is the loss of menstrual cycles due to the shutting down of pituitary hormones responsible for normal menstrual functioning. The body does not produce estrogen, and this has profound effect on bone. Estrogen is required to keep bones from breaking down. Unfortunately, the peak age of bone deposition is also the peak age for development of eating disorders- late teens and early 20s. Virtually no new bone is formed after 25 years old, so this bone loss is likely never recovered, and the development of osteoporosis at an early age follows. It used to be thought that the estrogen in birth control pills would prevent bone loss. Unfortunately, research has shown this not to be the case. Those with eating dis- Eating Disorders and Medical Care orders who get regular periods due to birth control pills are still at risk for osteoporosis. Low thyroid hormone is also common in eating disorders and many with anorexia develop symptoms of hypothyroidism, including fatigue, cold intolerance and constipation. Males with eating disorders have also been shown to have low bone density, decreased muscle mass and lowered libido, likely due to decreased testosterone levels. Hair changes include losing hair in some places and gaining in others. Hair is lost from the top of the head, due to hormonal problems, dehydration, and stress. Fine downy hairs then develop on the arms, back and cheeks, as well as other sites, known as “lanugo.” Lanugo develops to preserve warmth— it is seen in newborns then goes away. Another thing seen in newborns which returns during episodes of malnutrition is acrocyanosis, bluish discolorations of the hands and feet as the blood supply is inadequate to warm the extremities. Other skin changes include dry, cracked, and yellowish skin. Those who self- induce vomiting regularly may develop a “Russell’s sign”calluses on the back of the knuckles from repeatedly hitting the teeth. Those who vomit regularly develop dental erosion, as the teeth are constantly bathed in the extremely acidic stomach juices. Brushing the teeth after vomiting is a bad idea-that will only strip the enamel further. Using mouthwash is a better idea. Vomiting can also harm the esophagus, leading to inflammation, throwing up blood, rupture, and esophageal cancer. The cheeks may swell up due to enlargement of the parotid glands. And those who vomit large amounts of blood may have a MalloryWeiss tear, which are lesions in the stomach from vomiting that bleed profusely. Like previously stated, any organ in the body can be affected, and liver and kidney failure also occur. Kidney failure, in particular, may be caused by chronic laxative abuse. Those with severe kidney damage may require dialysis. Electrolyte disturbance may be a cause of sudden death, particularly potassium, phosphorus and magnesium. Those who vomit or abuse laxatives are at a high risk for low potassium. Low phosphorus can be caused by the refeeding syndrome, which occurs when a chronically undernour13 ished individual increases intake too quickly, so treatment should be supervised by a medical provider to watch for this. You may have noticed that I always say malnourished- never underweight or too thin. Though many people with these symptoms are underweight, you do not need to be underweight to be malnourished. In fact, I have seen all of the above in people at “normal” weights. At DECC, we do not believe in the concept of an ideal weight. If your child is restricting calories, and/or performing unhealthy behavior to control weight, and has some of the symptoms above, your child is malnourished, regardless of the number on the scale. The ideal weight is whatever your child’s weight is when eating regularly and enough, not excessively exercising or purging, and feeling well. My goal as a physician specializing in eating disorders is to help you help your child get there and stay there. Dr. Stephen Sondike is a professor at the WVU School of Medicine – Charleston Division Department of Pediatrics; Parenting online !!! Please let us know if you would like to receive notification when new issues are available by sending your email address to [email protected] ...or go to www.lawv.net to download as many copies as you would like! One Parent’s Perspective Walking on a Tightrope From the last issue of Parenting Perspectives… Megan’s parents know something is terribly Megan is 16, an aspiring artist, active in her wrong but they aren’t sure what to do. Off their rachurch, an honors student in school, and learning to dar screen is the possibility that Megan has develdrive. Her parents have the normal worries of anyone oped an eating disorder. It just doesn’t seem possitrying to parent a teenager—how to help her navigate ble—isn’t that a problem faced by dysfunctional drugs, alcohol, peer pressure and new and more com- families, Hollywood stars, and runway models—not plex relationships. a highly motivated well-adjusted teenager from a Megan has developed a new interest in running good home with loving, involved parents? and expressed an interest in eating more healthy foods. Megan has anorexia nervosa and her proAt first her parents are delighted, helping her sign up gression into the disorder and resulting consefor the cross country team and reinforcing her efforts quences are eerily similar to others with the same to eat better. Megan puts her full effort into running disease regardless of race, culture, socioeconomic and eliminates desserts and “junk” food from her diet. factors or family issues. Highly heritable and affectHer running times improve and much to her ing approximately 0.5 to 1 percent of the population, delight, she loses a little weight. Over time, Megan anorexia nervosa is deadly, killing up to 20 percent adds more mileage to her already intense workouts on of individuals with the disease, more than any other the team by lifting weights and running before she psychiatric disorder. goes to school. She’s so dedicated she runs regardless of the weather, how fatigued she is, and even pushes How does Megan’s Story End? through a hamstring injury. Her parents are thrilled— That depends… she seems so dedicated; her coach has commented on It depends on how quickly her parents and physician recognize her symptoms and how quickly how well she’s doing on the team. they intervene. It depends on access to professionals As Megan increases her workouts and starts who use research-based treatment in their practice. It eliminating even more food from her diet, her weight depends on how persistent her parents are in advostarts to plummet. cating for her care and on how involved they become Her parents express concern but Megan says in her treatment. The disheartening truth is that she’s fine and when they sit down to dinner each eveMegan’s access to care and potential for lasting rening she seems to have a ready excuse as to why she’s covery may be based on where she lives and how not eating—“I’m full,” “I already ate,” “I’m going to cooperative her insurance company is in paying for treatment. eat later.” Ideally, if Megan has a knowledgeable physiHer parents’ concern grows as they notice cian who understands the symptoms and medical their normally cheerful daughter seems more withcomplications of eating disorders, she and her family will quickly be referred to a specialist, who will prodrawn and sullen; her collar bones, ribs and cheekvide them with information about their daughter’s bones seem more prominent; her hair is falling out and eating disorder. If Megan is medically stable, her her eyes are sunken. She’s not longer menstruating, is parents will be encouraged to begin the process of recold all the time, and isn’t sleeping well. feeding their daughter at home using Family-Based Continued on the next page 14 Walking on a Tightrope Therapy (FBT) or Maudsley, an evidence-based approach considered to be the gold standard in the treatment of eating disorders in adolescents and young adults. The process won’t be easy—there will be pitfalls and bumps along the road, and Megan and her family will need a tremendous amount of support. With continued care and support from her parents and treatment team, Megan’s symptoms will improve with normalized nutrition, giving her a good chance of making a full recovery. Unfortunately, many do not live near specialist services and sometimes don’t have a knowledgeable physician or other supports in their area. In addition, many parents or loved ones will be encouraged by well-meaning professionals to take a back seat in their child’s treatment rather than being fully involved. While fictitious, Megan could easily be my daughter. Change the name and alter some of the details, and you have our story—seven years ago our family was completely blindsided when our daughter developed an eating disorder. Similar to Megan’s parents we knew something was wrong but didn’t know what to do. We were scared, and didn’t want to make the situation worse. We visited the pediatrician several times which resulted in temporary relief—we were told it was a “diet gone bad,” not an eating disorder. We were told that things would get better on their own, but as we continued to wait, our daughter became more ill. When we were finally told our daughter had an eating disorder, we were given nutritional information but no practical advice on what to do at home. Not ones to stand back and watch our daughter’s eating disorder spiral out of control, my husband and I began scouring the internet for information on treatment, coming across research on FBT and a small group of parents who had created an informational support forum. Encouraged by initial research showing the success of FBT and by other parent stories, we began searching for effective treatment. Despite numerous calls to various local psychologists, we found no one who had information or experience with FBT; however, we did find a local dietician with extensive ex15 perience in treating eating disorders in an inpatient setting who was willing to support us as much as she could. Finding that services were limited in WV and following the advice of other parents, we called some of the major eating disorder treatment centers across the country who used FBT as a treatment approach. Realizing our daughter was only getting worse—the eating disorder was progressing faster than we could assemble a treatment team- we decided to begin the intervention process at home despite the lack of resources. We felt very alone in our daughter’s treatment as her anxiety and fear of eating and gaining weight was debilitating. However, we felt empowered; we were changing the course of the illness. Within a few weeks of better nutrition, our real daughter, who had been so engulfed by the eating disorder, started to emerge– a little smile here, a laugh there- things she hadn’t done for several months. It took some time but we finally found a treatment center which had just started a parent training program on FBT for out of state families. Our whole family, including our younger daughter, traveled across the country, spending a full week immersed in training to help solidify our attempts of supporting our daughter in her recovery. Once we were home staff continued to provide phone support in order to help us successfully implement the skills we had acquired. Since that point, our daughter has hit bumps in the road but we are confident in our skills to help her. I often imagine our daughter walking on a tight rope. Sometimes she manages very well but sometimes she slips. We are standing by, cheering her on and holding the safety net to catch her and help her back on her feet. With each slip, she becomes stronger and more determined to achieve recovery, and while we’ll never let go of the safety net, we know she’ll make it to the other side on her own. Postscript… I’ll admit it. When asked to write this article and participate in developing this edition of the newsletter, I was nervous. I wasn’t sure I wanted to use my real name. It would be easier to hide behind a pseudonym. Ironically, I’ve been in Continued on the next page Walking on a Tightrope volved in advocating for families of children with eating disorders for several years on a national level and I’ve always used my real name. But this was so much closer to home. When our daughter was diagnosed, we were incredibly and, perhaps naively, open about her struggle with anorexia; however, we quickly learned we couldn’t predict the other person’s response and sometimes, but not always, it was less than ideal – it was as if we had grown horns and were spreading the plague. Usually in these situations, the other person becomes silent and acts as though they are ready to end the conversation quickly and run as far away as possible –surely we as parents must have done something terribly wrong to cause our daughter to develop anorexia and they wanted no part of that. Although it makes me feel terrible, I know their response is based on misinformation and misunderstanding. And, then there are the other responses which led me to finally decide to use my real name for this article. Sometimes, we are caught off guard when we reveal our situation and find the other person on the verge of tears as they tell us about their daughter, their brother, their wife, their cousin. There’s real pain and desperation in their story. The terrible heartbreak in watching a loved one – a loved one who is incredibly talented and intelligent- struggle with a terrible disease for which there is no cure and there is woefully little know about causes and effective treatment. There’s real pain and desperation in their story. The terrible heartbreak in watching a loved one – a loved one who is incredibly talented and intelligent—struggle with a terrible disease for which there is no cure and there is woefully little known about causes and effective treatment I’m speaking up for all of those individuals afraid to speak up because of the stigma associated with an eating disorder but mostly I’m speaking up for my daughter. I want her to stand proud of who she is and live the life she is fully capable of having in spite of her eating disorder. How can families help their child recover from an eating disorder? Read. Obtain as much knowledge about your child’s eating disorder and treatment as possible. Read respected resources and information based on science rather than opinion or a sales pitch. Act quickly. If caught and treated early, people with eating disorders can recover and lead full, productive lives. If left untreated, eating disorders often become chronic and disabling. It’s important to seek specialist care as quickly as possible. Be involved. Research indicates parents and caregivers are the most important resource for the treatment of their child’s eating disorder and should be involved in all aspects of treatment. Initially, the person with an eating disorder may not have the capacity or ability to make treatment decisions so loved ones may need to do that for them until they are able to better manage decisions. Seek quality treatment. Treatment providers should be up-to-date on the latest research on treatment approaches. Seek the best available care for your child even if it requires traveling some distance from home. Don’t be afraid to ask questions and advocate for yourself and your child. If treatment is not working, bring this to the attention of treatment providers and be involved in problem solving efforts. In some cases, it may be necessary to change treatment providers and/or the treatment approach. Have hope. Have hope for a positive outcome. You may need to continue to have hope even if your child loses faith in their ability to recover. Hold hope in your hands until they can do so… Jennifer Whisman is an Assistant Professor at Marshall University, Board Certified Behavior Analyst and a volunteer parent advocate for the Disordered Eating Clinic of Charleston. She lives in the Huntington area with her husband, 3 dogs, 2 cats and assorted stray creatures which seem to show up in their backyard. Her daughters are both grown and she enjoys their frequent visits. If you have questions about eating disorders or would like more information, you can reach her at [email protected]. 16 Myths vs. Facts About Eating Disorders About 50 percent of all people in the U.S. either know someone with an eating disorder or have been personally affected by one. Despite that, major misconceptions about eating disorders are widespread. These myths can lead to stigma, making it difficult for some individuals to seek treatment and often making it less likely that medical professionals will identify or diagnose eating disorders when they occur outside of the stereotypes. Below are some of the most common myths about eating disorders and the facts to counter them. It’s important that we continue to provide education and increase awareness about eating disorders to help dispel these myths. centage of them actually develop eating disorders. Eating Disorders are serious illnesses that have biological, genetic and psychological underpinnings. Sociocultural messages about weight and beauty (including photoshopped images) can certainly impact a person’s body image and stimulate pressures to look a certain way, but they cannot cause an eating disorder. Myth: Men don’t get eating disorders. Fact: At least 1 out of every 10 people with an eating disorder is male. In fact, within certain diagnostic categories like Binge Eating Disorder, men represent as many as 40 percent of those affected. In a recently released report from the American Academy of Pediatrics, boys and men were cited as one of the “...boys and men groups seeing the fastest rise in eating over the past 10 years along were cited as one of disorders with 8-12 year olds and ethnic minorities. It’s equally important to screen the groups seeing for eating disorders among females and males. the fastest rise in Myth: You can tell if someone has an eating disorder simply by looking at them. Fact: Individuals with eating disorders come in all shapes and sizes. Many times, the media and other public discussions about eating disorders focus solely on individueating disorders als with a diagnosis of anoMyth: Only people of high socioecorexia who are severely emacinomic status get eating disorders. over the past 10 ated. In reality, many indiFact: People in all socioeconomic viduals with anorexia may not have eating disorders. The disyears, along with 8- levels ever appear so drastically unorders have been identified across all derweight. Furthermore, socioeconomic groups, age groups, 12 year olds and many individuals with severe both sexes, and in many countries in ethnic minorities.” disorders including bulimia, Europe, Asia, Africa, and North and binge eating, and OSFED/ South America. (source: NEDA) USFED can be underweight, normal weight, overweight or Myth: Eating Disorders are a lifeobese and often fluctuate in weight. Even athletes style choice; someone can choose to stop having an who appear to be incredibly fit might be struggling eating disorder. with an eating disorder. The bottom line is that you Fact: Eating disorders are serious illnesses with cannot define someone’s health by how much they mental and physical consequences that often involve weigh and you cannot determine whether they have a great deal of suffering. Someone can make the an eating disorder just by looking at them. choice to pursue recovery, but the act of recovery itself is a lot of hard work and involves more than simply deciding to not act on symptoms. Sometimes, Myth: Eating Disorders are caused by Photothe eating disorder has become a person’s primary shopped images in the media. Fact: Many people are exposed to the media and way of coping with intense emotions and difficult Continued on the next page altered images on a daily basis but only a small per17 Myths vs. Facts About Eating Disorders life events. In order to heal from the eating disorder, a person needs appropriate treatment and support regarding medical monitoring, nutritional rehabilitation as well as learning and practicing healthier ways to manage stress. Myth: Anorexia is the only life threatening eating disorder. Fact: Eating Disorders in general have the highest mortality rate of any mental illness. Recent research has expanded our knowledge about the risks associated with each of the specific diagnoses. The research (Crow, S., et al. 2009) showed mortalMyth: Purging is an effective way to lose ity rates for bulimia and OSFED/USFED that were weight. similar to, and higher, than those for anoFact: Purging does not rexia. result in ridding the body “Eating Disorders Bulimia had a 3.9 percent mortality of ingested food. rate and OSFED/USFED had a 5.2 percent At least half of what is in general have the mortality rate while anorexia had a 4.0 perconsumed during a binge cent rate. These numbers were based on a highest mortality typically remains in the study of individuals seeking outpatient serbody even after selfrate of any mental vices. Without treatment, it’s suspected induced vomiting. that as many as 20 percent of individuals It’s important to know illness .“ will die as a result of their illness. Even for that laxatives do not prepatients whose eating disorders don't prove vent the body from abfatal, there are often severe medical complisorbing calories either becations associated with starvation and purging, incause they impact the large intestine and most calories cluding bone disease, cardiac complications, gastroare absorbed in the small intestine. Laxatives may provide an illusion of weight loss because they stimu- intestinal distress, and infertility. late a temporary loss of fluids from the body which can lead to dehydration. Purging does not cause weight loss, nor does it prevent weight gain. In fact, over time, the binge/ purge cycle can actually contribute to increased or accelerated weight gain as it affects the body’s metabolic rate. For these reasons, many people with bulimia are average or above-average weight. Myth: Recovery from eating disorders is rare. Fact: Recovery, though challenging, is absolutely possible. Recovery can take months or years, but with treatment, many people do eventually recover and go on to live a life free from their eating disorder. Myth: Eating Disorders are a result of over controlling parents and dysfunctional families. Fact: In the past, parents were often blamed for an individual’s eating disorder but new research and conventional wisdom have helped to dispel this myth. Families affected by eating disorders are very diverse. We now know that between 50-80% of a person’s risk for developing an eating disorder is due to genetic factors. We also know that parents and families can play an integral role in helping a loved one recover. For this reason family-based therapy is a primary therapeutic modality used for adolescents and is also strongly encouraged for adults. 18 Like us on Facebook at: WV Parenting Perspectives or email [email protected] About Mental Health Are You Worried About a Friend? Here are some guidelines to approaching a friend who may be struggling with a mental health problem. Pick a Setting Talking about your concerns can be uncomfortable for both people. Pick a place where you both feel safe, but emphasize your friend's comfort. It should be a place where they feel on equal footing with you. Privacy is essential. Pick a time with flexibility. The conversation may be short, but just in case, make sure neither of you have anywhere to be immediately. You don't want to have to stop the conversation. You and several other people may be concerned about your friend, but approaching them one-on-one is the best practice. It prevents the friend from feeling overwhelmed and attacked. Don't be afraid to involve a friend's parent (if they're on good terms) or a professional. Your friend may be angry, but sometimes you need back-up. Be prepared Whether it's the first conversation or the fifth, be prepared to give your friend some resources to check out. Always carry the National Suicide Prevention Lifeline number: 1-800-273-TALK (8255). Know how to contact and utilize the counseling center or local mental health services. Once you've had the conversation, your friend may want you to go with them when they call or go to their first appointment. Take care Your friends are lucky to have you looking out for them. But sometimes distress keeps them from appreciating you. Be prepared to be met with anger, denial and/or rejection. Know that you're doing the right thing, and their reaction isn't about you. Have your own support network. Helping a friend through a tough time can be hard on the helpers, too. Make sure you are looking after your own physical and mental health. Still not sure how to approach your friend? Here are some questions you could ask them that might help get you started. These examples can get you thinking about things to say and how to word the 'tough stuff'. I've noticed that you haven't been acting like yourself lately. I'm worried about you, is something going on? What can I do to help? How can I help you? How long have you been feeling this way? Have you spoken with anyone else about all of this? Do you want me to walk with you to the counseling center? Can I help you find someone to see about your concerns? Are you getting the care you need? It makes me afraid to hear you talking about dying; there is hope for feeling better, can we talk to someone about this? Continued on the next page 19 About Mental Health Are You Worried About a Friend? What do you feel like? What are you experiencing? Do you think you might be in immediate danger? Have you been having thoughts about trying to kill yourself? Have you ever had thoughts about hurting yourself? Formulating "I" statements "I" statements are a critical tool when broaching any delicate topic with a friend. These statements help you express your concern without seeming judgmental and encourage conversation and problem-solving. Start with Continue with For example I feel... Emotion I feel concerned When... Situation when you can't get out of bed Because... Why because I care about you. I'm wondering... Suggestion I'm wondering if it would help to talk to a counselor. There are many more detailed resources about how to help a friend. For more information, please see: SAMHSA - Treatment & Resources DBSA - Helping a Friend or Family Member Mayo Clinic - Supporting a Family Member or Friend 20 Eating Disorders in Young Children exhibiting picky eating behavior usually overcome their aversion to other food relatively quickly before any nutritional threat is imminent. Those with selective eating disorder only eat foods from very narrow categories, often those high in simple carbohydrates. Recognizing the symptoms of selective eating and taking steps to mitigate negative nutritional and psychological consequences can stop the child from developing a full-blown disorder that threatens health and well-being. Children with true selective eating disorder have an aversion to certain food textures and smells. They associate the texture, odor, or both with a traumatic incident, which they now associate with food. When coaxed to try the food group associated with the event, they often gag, cough, or choke. This disorder is often associated with an underlying psychological condition involving anxiety or autism. Eating disorders occur most often in young adolescents and teens; however, young children can develop eating disorders as well. Healthcare professionals are seeing a disturbing trend of children as young as age 5 developing eating disorders. While these eating disturbances often seem similar to the anorexia nervosa and bulimia, most commonly found in young teen girls, those occurring at a very young age often have other causes. Food Refusal With this disorder, children use food refusal as a means of manipulation. The behavior is often erratic and inconsistent. While this tactic is certainly frustrating for parents, it is sometimes associated with a recent source of stress or sadness and is not usually thought of as a threat to health. Restrictive Eating Food Avoidance Emotional Disorder With restrictive eating, very young children eat a variety of foods, but clearly restrict portions. The underlying causes of this disorder remain unclear and although children exhibiting restrictive eating habits may have low weight or growth for their age, they generally eat a balanced diet, albeit portion restricted, causing medical staff to consider them healthy in most cases. As with most eating disturbances in very young children, restrictive eating seems to have no basis in a preoccupation with body image and weight. Children can exhibit symptoms of food avoidance emotional disorder (FAED) very early in life. With this disorder, children can be as thin or thinner than those with untreated anorexia nervosa. The difference being that these children often feel shame at their thin bodies and know that their eating habits are irrational. Symptoms are closely related to obsessivecompulsive disorder. Many times, children with this disorder do not know exactly why they cannot overcome their eating issues, but desperately want to eat like their peers. They are often plagued with intense worry, sadness, and anxiety. Untreated, atypical eating disorders, such as FAED, can result in profound health and social issues for the child. Selective Eating Selective eating disorder syndrome can begin as early as infancy and can mimic the common for picky eating habits of many infants and toddlers. Children Continued on the next page 21 Eating Disorders in Young Children thought to cause the child difficulty. Both individual and family therapy may benefit the family unit and the child specifically. Causes Eating disorders in very young children can often mirror those of adolescents and teens with anorexia nervosa or bulimia, but generally manifest themselves much differently in the mind of the child patient. Anorexics and bulimics usually have profound body image and self-esteem issues because of their emotional stresses. Very young children with eating disorders do not have body image concerns. They exhibit no fear of becoming overweight. These children often have a first or second degree relative with an eating disorder, which indicates a genetic factor in the disease. Many have anxiety disorders and fear of separation from their primary parent (usually their mother). Other contributing factors include perfectionism, inability to effectively cope with daily stresses, and depression marked by tearfulness. http://www.activeminds.org/ issues-a-resources/ get-help/how-to-help-afriend Parenting online !!! Like us on Facebook at: WV Parenting Perspectives Treatments Eating disorders in pre-pubescent children are new to prominence in the medical community. Consequently, specific treatments have not been established, but possible treatment options can be administered by a pediatric physician or psychiatrist. Concerned parents can stay informed and involved by keeping regular appointments with their child’s pediatrician. Those who strongly suspect the onset of an eating disorder in their prepubescent child should bring the child in for evaluation by a pediatric psychiatrist. The psychiatric physician may prescribe medication to attenuate the underlying anxiety or obsessive-compulsive condition 22 And let us know if you would like to receive notification when new issues are available by sending your email address to [email protected] Siblings Need Support, Too! Siblings of individuals with eating disorders may be greatly affected by their sibling’s illness, yet little research exists on the effects of eating disorders on siblings and approaches to support them. Research on siblings of children with other chronic illnesses suggests that siblings may experience a variety of emotions. Siblings may feel anger or resentment because their ill sibling takes so much of their parents’ time, energy, concern and support. Siblings may experience feelings of loss and loneliness as their typical relationship with an ill sibling changes and may be limited by the eating disorder. Siblings also may experience fear that they will end up with an eating disorder too. On the positive side, siblings may feel empathetic toward their ill sister or brother and may have a desire to help; however, often siblings may not be sure how to help. Following are some suggestions on how to support siblings of individuals with eating disorders: Provide siblings with information about the eating disorder, what is happening within the family and how treatment will proceed. Information should be provided based on the age and maturity of the sibling with the level of detail increasing the older the sibling is. Let siblings know how they can support the ill child. Some siblings provide support to the ill child by engaging in activities with the ill child (e.g., watching movies, completing a puzzle, scrapbooking, etc.) between meals. Others might give encouragement and sympathy to the ill child during meals and still others may be active participants of Family Based Therapy (FBT) sessions. Reassure siblings that you, as caregivers, will do everything you can to help their sister or brother with an eating disorder get better and keep them safe. 23 Try not to put siblings in the role of policing their ill sister or brother by telling parents about purging, binging or restricting. Provide opportunities for siblings to talk with you about their experiences. Because extreme behavior is common, siblings need a plan for what they should do during these times. For example, you might tell siblings they do not need to help during the situation and suggest siblings go to their rooms, listen to music, watch tv, etc. Again, reassure the siblings that the eating disorder causes a lot of anxiety, this is temporary, will get better and you will help the ill sibling stay safe. Help siblings understand that anything the ill child says or does should not be taken personally. These behaviors are not a reflection of the sibling and the ill child does not mean to say or do them. They are responding to their own fear and anxiety. Ask siblings to participate in family meals during most days of the week. This may mean making some compromises on typical activities, at least at first. As much as possible try to carve out time, even if it is briefly, for siblings to spend time with parents alone and engage in fun activities. Ask friends, neighbors and/or family members to help take siblings to their activities and keep the sibling occupied (e.g., by asking the sibling to a sleepover, movie, trip to the mall, church, sports, etc.).To the extent possible, assist siblings in maintaining healthy relationships with peers and other family members. If you find that siblings are really struggling to make sense of the eating disorder and what they have been through, consider individual therapy for them too. *Reprinted and revised with permission from www.feast-ed.org Parenting Perspectives is now online, all the time! We are no longer printing and mailing individual issues. but, we will continue publication in an electronic version… available online, all the time, with new editions focusing on West Virginia families every four months. Please let us know if you would like to receive notification when new issues are available by sending your email address to [email protected] ...or check the following websites to download as many copies as you would like! www.lawv.net and like us on Facebook at: WV Parenting Perspectives 24
© Copyright 2024