Reproduced by kind permission of F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) www.feast-ed.org
“EFFECTS OF MALNUTRITION
An eating disorder, along with the cognitive and emotional symptoms, causes nutritional chaos. That chaos of lost nutrients, erratic supply, and the internal damage of purging can all leave the body depleted and damaged. Much of the damage of anorexia is not the obvious loss of body size or fat, but muscle and tissue and organ damage. The heart, largely made of muscle, is weakened and often shrunken. Bulimic behaviors also cause massive internal damage. With both restrictive and purging behaviors the digestive system is damaged in numerous ways: structurally and chemically.
The damage of any eating disorder behavior takes time to heal, and much of that healing is not visible. Because our bodies are very good at compensating during tough times, doctors have observed that blood tests and external measures of illness are inadequate: there are very few indications a body is about to go into crisis until the damage has already been done. Too many families find out only after a life-threatening or fatal episode how close a loved one was to death.
In addition, malnutrition and erratic nutrition have mental symptoms which keep the illness going: body dysmorphia, obsession with food, obsessive eating habits, social withdrawal, irritability, and depression.
It is important to maintain a zero-tolerance policy on malnutrition.
Stabilization and normalizing of eating and behaviors is often called “re-feeding” and present a separate issue from whatever other therapies or treatments are going on. After diagnosis the re-feeding process must be going forward. This is as true for bulimia, despite the fact that most bulimics do not lose significant weight, as it is for anorexia and all variations of EDNOS: the mental symptoms of an eating disorder are driven by the status of nutrition.
IMPORTANT: Preventing Re-Feeding Syndrome
When a full evaluation has set goals for weight restoration, it is time to decide how the re-feeding will be pursued. The location for beginning re-feeding is a medical decision. It depends on the medical condition of the patient, the resources within the home, and the alternatives available. For families in countries with national health systems, there may be no choices. For families paying for their own health care, many options may be financially out of reach.
While the desires of the patient are to be considered, parents must remember that patients are often not able to make rational choices in early recovery. It is often necessary to make decisions on the patient’s behalf that are resisted or vigorously rejected.
Ideally, families should consult a variety of experienced experts for evaluation and advice.
Who is responsible for the structure, content, and boundaries of mealtimes is a critical decision. Most patients will wish to be in charge, but this decision is often best decided between caregivers and clinicians. There is a wide range of clinical approaches to this question, and parents are advised to educate themselves well and consult several clinicians. This decision may be one of the most important ones you make for your child’s future – it is appropriate to ask questions, read widely, and express your preferences. If you are seeking a Maudsley, or “Family-Based” solution, it is important to seek a clinical team who support this option: many are unfamiliar or untrained in this approach.
Anorexia recovery generally requires a much higher level of nutrition than people of similar age. Regaining lost body composition and repairing internal damage takes time and energy. The content of the nutrients matters, too. Low-fat foods will not restore the body, and sufficient protein and vitamins are necessary for brain and body recovery. A doctor or nutritionist with expertise in recovery can be very valuable in helping parents understand caloric needs and nutrient balance.
Parents should be aware of the complications that can occur during physical restoration. “Re-feeding syndrome” describes a range of side-effects as the patient goes from illness to health. These can be as benign as limb swelling, and as dire as heart failure. Close medical monitoring is important in the early stages of recovery.
It is also important to know that when the body begins to recover there is often a re-starting of metabolism which was slowed down during the illness. A period of “hypermetabolism” can occur, where the patient feels anxious and overheated and it is difficult to eat enough calories to gain weight. Again, good medical monitoring and advice can help keep this temporary side-effect from derailing recovery.
During recovery, it is not uncommon for the stomach, intestines, and bowel to have lost normal functioning. Slow emptying of the stomach (gastric paresis) causes real pain and discomfort. This transitional period is difficult but unavoidable. There are ways to lessen the distress, and the doctor may have suggestions.
Depression, anxiety, self-harm, suicidality, and violence can and often do occur as a patient experiences re-feeding. Patients resist – sometimes entirely out of character – being compelled to regain medical health and even minimal control being taken away from the eating disorder. Parents should anticipate and have plans in place for this kind of reaction. A firm, calm environment is appropriate. Parents should not confuse resistance to eating and to attending therapy with these interventions being a mistake. It is extremely hard for patients to understand and cooperate with re-feeding – but it is important that parents are unwavering in commitment to the treatment plan. Uncertainty and excessive sympathy with the sufferer can lead to higher anxiety.
The home must be made a safe place for recovery, for full nutrition, and for support. This often means extraordinary sacrifice from family members, and can be seen as similar to caring for an ill infant or gravely injured person. If the home cannot be made safe, and the re-feeding process cannot be initiated or stalls – other arrangements may be necessary. Among them: quitting work/school, bringing in other adults during mealtimes or to live temporarily, traveling to a clinic that offers intensive treatment with the whole family, brief psychiatric hospitalization, hospitalization for medical monitoring, or residential treatment.
Whether inpatient or at home, restoration of weight and internal health takes time. During this period, the patient experiences immense emotional discomfort, anxiety, and confusion. Parents can play an important role in reassuring their loved one while steadfastly refusing to compromise on the medical recovery. (The Around the Dinner Table forum has thousands of posts and years of experience helping families through this period. Also check the FAQs for specific issues.)
Many of the problems experienced by families during the re-feeding process for anorexia are shared by parents supporting a bulimic patient, but there are important differences.
Bulimia generally first strikes older adolescents or young adults. That and the fact that patients are often more motivated to be free of bulimic symptoms than in anorexia make it possible and more helpful to include the patient in the decision-making and be collaborative in setting treatment goals.
Re-feeding in bulimia requires ensuring balanced meals with sufficient calories at regular intervals, providing support after meals to discourage purging, and avoiding binges. This can mean more monitoring and boundaries than with restrictive anorexia. It can also mean facing issues of shame and deception that challenge parents. Working with clinicians familiar with these issues can help parents negotiate these boundaries and understand the unique dynamics of binging and purging in an eating disorder.
INPATIENT/RESIDENTIAL TREATMENT
Many families need or desire the services of inpatient stabilization or longer-term treatment away from home. Although in some cases the length of treatment is enough to restore healthy weight and end the purging cycle, more often the patient must continue the re-feeding and normalization process at home. It is very important that the family have a plan for the transfer of responsibility for re-feeding after discharge. An organized and well-communicated transition can prevent losing the progress made in treatment. Whatever plan is agreed upon, parents need training and coaching on how to support the patient best as recovery continues.
TIMELINE
It takes time for nutritional recovery to have an effect on the thoughts and behaviors of semi-starvation. Many families report a dramatic improvement in psychological symptoms after reaching normal weight and body composition, and continued shedding of symptoms over the following 6-12 months. The periods of highest anxiety, distress, and body image distortion are often reported to occur at the beginning of refeeding and then again right before reaching healthy weight (which varies by individual). It is important for parents to remain patient and maintain optimism while continuing to assure physical health and all other necessary therapy.”
Courtesy of F.E.A.S.T. and Laura Collins.
CharlotteB
Charlotte Bevan, wife of a farmer, mother of teenagers, breast cancer survivor and parent advocate Secretary F.E.A.S.T. UK, Expert Carer, Echo Project, Institute of Psychiatry, talkhealth and Mumsnet Blogger
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