Treatment for anorexia and other eating disorders: the essentials for parents

The essentials for a parent who wants immediate answers: what are the main principles of the treatments covered in this book, and how long before you can expect some relief?

Might your child be fine without treatment?

You don’t need to read the next few paragraphs if you already know you want to get treatment for your child. Skip them. Preserve your energy.

This is for those of you who might be wondering if your child’s problems will sort themselves out without intervention. Your personal experience, or that of friends and relations, might be that an eating disorder eventually passes.

So does your child really need treatment, or can you leave her alone? To help with this question, we can look at studies on people with anorexia, from some years back, when few people received effective treatment.[1]

If you do nothing, your child may be among the relatively ‘lucky’ ones: it looks as though approximately 50–70 per cent of individuals with anorexia attain a complete or moderate resolution of the illness by their early- to mid-twenties. We’re talking maybe five to seven years of illness or more. And what if your child is not in the lucky group? We have no way of predicting if, untreated, she would be part of the 30 to 50 per cent for whom anorexia becomes a severely disabling chronic or fatal illness.

Could you adopt a wait-and-see attitude? The problem is that the delay will make your job a lot harder.

So I suggest you intervene promptly and decisively.[2] Treatment is, after all, simply food and love. There are no harmful side effects.[3] If your child doesn’t have an eating disorder, you’re not going to give her one by consulting a specialist and by requiring that she eats. If her eating is chaotic or if she’s denying herself food, you can be certain it is highly distressing for her and that her health is being compromised. You will give her great relief by giving her structure and support until she gets back on her feet.

Nutrition with loving family support

There are only a small number of validated treatment approaches for anorexia, bulimia or binge-eating disorder and they all make the same fundamental requirements. Your child must eat at regular intervals, must stop bingeing, stop purging and stop over-exercising. If she is underweight, she must recover a healthy weight. She must do all this in spite of anxiety or depression or distorted ideas about her body shape. The more you support her, the more she is likely to succeed.

If she has anorexia and is underweight, she is unlikely to succeed unless you take charge, because for a while the illness dulls motivation and rational thought and prevents her from accepting treatment. Even when her motivation returns, the task is usually too hard for her to bear on her own.

Treatment centres all over the world offer different ways of treating children and adolescents with eating disorders. In Chapter 12 I’ll introduce you to the differences in the way anorexia is treated. For other eating disorders I can’t write with any confidence about the finer detail, so if your child has bulimia or binge-eating disorder I recommend that you research the latest recommendations.[4]

For now, here are the main principles I am advocating in this book.

  • The best results are obtained when parents take an active, central role.
  • If your child is underweight, you support her to reach her expected body weight (weight restoration).
  • You support meals, while also preventing over-exercising, bingeing and purging.
  • Once your child is weight-restored – or even earlier – you help her to overcome her fear of foods she used to eat with pleasure, and to get back into normal life.
  • All this is done within a loving, uncritical, supportive family environment.
  • Inpatient treatment provides a vital safety net. You are part of the team and supported to take over after discharge.
  • You do not wait for the child to want to eat or to have motivation to beat the eating disorder and you treat without searching for causes.

These principles worked for us, they worked for families whose stories I have followed, and most importantly we have scientific evidence for their effectiveness, through research conducted on an approach called Family-Based Treatment (FBT), also commonly called the Maudsley Approach.

Institutions in a number of countries support this type of approach for anorexia.[5] For instance, the Canadian Paediatric Society writes:

“The evidence to date indicates that Family-Based Treatment (FBT) is the most effective treatment for children and teenagers with anorexia. A key component of the FBT model is that the parents are given the responsibility to return their child to physical health and ensure full weight restoration.”[6]

Food for weight restoration and stability

The brain needs fuel at least as much as any other organ in the body. Food is medicine for someone with an eating disorder. People who binge or purge need regular meals in order to gain stability: if you’ve gone all day without food you’re more likely to binge in the evening, after which the urge to exercise or purge will be strengthened. And while most of us can lose a couple of kilos without this affecting our well-being, it seems that children who are prone to anorexia will suffer symptoms if they lose weight, especially if they dip below their expected weight – a weight which meets their own individual, genetically programmed needs.

As a medicine for anorexia, food really sucks. It’s the one thing sufferers fear the most in the world, and they need to swallow the pill not once, but five or six times a day, day after day. Sadly, medical science hasn’t yet come up with anything that is easier for patients or their families.

If you’re wondering how anyone can possibly get a child with anorexia to eat, well, this is very much what this book’s about. I will list general principles, offer some dos and don’ts, then you can be a fly on the wall and witness an entire mealtime session. And I will give you emotional tools to help you support your child meal after meal.

Train the brain: no more fears

Food is fuel, but there is an additional reason why it is medicine: it seems the brain needs to relearn how not to fear food. Sufferers need to shed eating-disordered habits by engaging in new behaviours. Their brains need nutrition, exposure, and time, in order to form new, healthy pathways.[7]

Unconditional love

Apart from food and an end to bingeing or purging, what your child needs the most for recovery are your uncritical acceptance, your unconditional love and support. This is not empty sentimentality; it’s a key principle that’s been validated in scientific trials.[8] We parents hold essential ingredients of the treatment, because families are all about love.

Your love helps your child to trust you so that together, you can tackle seemingly impossible challenges. Additionally, it seems to me that everything that has any kind of importance in life comes down to love. If you yourself are presently suffering, you may already have noticed how healing and empowering it is when someone hears you, understands you, accepts you.

Love is hard to put into practice in the middle of our daily storms. This is why this book offers emotional tools as well as practical ones. Feel free to jump to Chapter 13 if you feel this is what you need the most right now.

When does psychotherapy have a role?

How about psychological interventions? If your child has anorexia there is strong evidence that these will be ineffective if they aim to unroot possible causes or unconscious motivations or to explore the past. When the brain is starving, it doesn’t do logic and doesn’t engage with counselling or reason.

Individual therapy is more successful when it focuses on behaviour change. One of these – enhanced cognitive behavioural therapy (CBT-E) – has been validated for the treatment of eating disorders in adults and it may be suitable for some older adolescents. For younger people with anorexia, the greatest successes come with Family-Based Treatment (FBT), which doesn’t use individual psychotherapy sessions.

Don’t expect talking therapies to create the magic that makes your child let go of eating-disordered thoughts and behaviours. Don’t expect them to make your child want to beat anorexia. You will see psychological improvements as he eats, stops bingeing, purging and over-exercising and recovers a healthy weight.

The general rule not to rush into psychotherapy applies to any trauma or event that triggered the eating disorder. You may find, as we have, that as your child frees himself of disorder, the trauma resolves itself and you don’t need to do anything more. Having said that, if your child was bullied or traumatised, say, in school, it makes sense to discuss with those in charge how to prevent it happening again – it would be too easy for him to be re-triggered while he’s still fragile.

Psychotherapy may be appropriate as an adjunct in the later stages of eating-disorder treatment. It may help address specific psychological issues. But bear in mind that as the eating disorder recedes, in many cases the child’s well-being is restored and there may not be a need for individual psychotherapy.

Medication

There are no drugs to cure eating disorders. But medication may assist with your child’s anxiety, depression or delusional thoughts. Dr Julie O’Toole provides a good introduction to the role of medicines like Olanzapine, Prozac or Zoloft.[9]

Disorders that ride on an eating disorder’s coat tails

It’s common for eating disorders to be accompanied by conditions (co-morbid conditions) that your child didn’t suffer from before, such as OCD, anxiety or depression. There are also children who developed an eating disorder after they’d been suffering from other disorders, like anxiety disorders (including OCD), autistic spectrum disorders (particularly Asperger’s syndrome), or attention deficit hyperactivity disorder (ADHD).[10] The general rule is to treat the eating disorder as a priority because:

  • it presents the greatest risk to health
  • as the eating disorder recedes, some of the other problems usually do so as well
  • your child probably can’t engage with psychotherapy while his brain is affected by undernourishment

Sometimes clinicians find it difficult to differentiate an eating disorder from another mental health condition. If a clinician suspects that your child has clinical depression, borderline personality disorder (BPD), bipolar disorder (manic depression), OCD or that he is on the autistic spectrum, don’t panic quite yet. Hold the possibility lightly. I know of cases where a clinician did not have the experience to appreciate the aggression, volatility, depression, suicidality, anxiety or rigidity that an eating disorder can create to varying degrees. Often, once the child’s eating disorder was addressed, the other diagnostic labels were dropped.[11]

The road ahead

This is the rough plan for most people: you help your child reach his expected weight, you support him in becoming desensitised to fear foods, and you allow a few months for time to do its part in healing. Throughout all this, you nurture with love and compassion, and as soon as you can, you make life as normal and rich as possible. If psychological issues persist, you may consider some form of psychotherapy.

How long does treatment take and what are our chances of success?

At the beginning, every parent wants an idea, a rough idea, of how long this journey is going to take. Most of us receive vague replies, because … ‘It depends.’

We hardly dare ask what the chances are of our child making a full recovery. In the early days of my daughter’s anorexia, I was horrified by the figures that jumped up at me from books and websites. Having dug around some more, my view is that statistics from epidemiological studies give us a picture that has little to do with our own situation. The figures vary enormously across studies, years, and countries. They depend on how eating disorders are detected and categorised, and most often, they relate to patients who were treated before the best, current approaches were even dreamed of. Finally, as I’ll show in Chapter 10, recovery (or remission) means different things to different people.

Let me try and give you some indicators so you can form realistic expectations for your own situation if your child is suffering from anorexia.

If your child is underweight, you will all face some level of challenge for at least as long as it takes to get him weight-restored. Clinicians tend to aim for an average of 0.5 kg – 1 kg of weight gain per week. So if you know your child needs to gain at least 5 kg, for example, expect a minimum of ten weeks before he gets close to something you might call recovery.

Some of you may grimly note you’ve been at this for quite a bit longer already. There are many variables and uncertainties. Your stories will be very different if your child received prompt, skilled professional care or if she’s been in and out of (unsatisfactory) treatment for years.

The parents who’ve been on this journey for a while say they wish they’d been told, from the very beginning, that they’d be in this for many years, and that their life would never return to what it was before the eating disorder struck. They believe this would have made them more patient, more resilient. But this may not be true for you, and it wasn’t true for us. If your child has recently been diagnosed and you feel that life has become a nightmare, it would be wrong to imagine the next few years are going to be endless repeats of today’s hell. You’re on a journey, not an ever-repeating loop.

If you’re relatively new to this, here are factors that usually support faster improvement and better outcomes in the case of anorexia:[12]

  • Your child is treated according to the principles I outlined earlier in this chapter (food, no purging, family support).
  • Treatment starts as early as possible. Your child gains weight soon and at a fast rate.[13]
  • Recovery may proceed quicker if your child didn’t have other mental health disorders prior to the onset of the eating disorder.
  • It may seem particularly tragic when the illness hits a very young child, but this makes treatment easier and increases the chances of a swift recovery.[14]
  • If time is on your side (i.e. if there’s no pressure for your child to leave home), you have a better chance of future-proofing your child against relapses.

Even if all the factors are not on your side, some families have started breathing more freely in just a few weeks. Family-Based Treatment (FBT) produces good results on adolescents, assuming treatment starts within three years of onset of illness. Presently it takes 10 to 20 sessions over 6 to 12 months. One therapist using FBT reports that of the anorexia patients who completed treatment with her, all reached full remission (a cautious way of saying ‘totally recovered’) and this took between two months and 48 months.[15] No wonder it’s hard to get an answer to how long treatment takes.

You may wonder how you can possibly stand the mayhem in your life for another two, six or even 48 months. But your child need not remain in the most extreme stages of the disorder for long. On the whole, with every meal you feed, every kilo your child gains, they get better physically and mentally. There can be day-to-day or week-to-week fluctuations, so if you have bad times, step back and see where you are in the overall picture.

How quickly can you expect some relief? Consider the data from trials using FBT: within the first 10 weeks or so, parents become confident about assisting their ill child to eat. The child has steadily gained weight and is close to target, and she can eat without too much cajoling. In other words, the crisis is over.

So if you hope to blast your child’s illness in a couple of weeks, you may be over-optimistic, but if you think this will go on for years, or if you fear there is no hope, you may be wrong. How right or wrong you are depends on all these factors I’ve listed, and there are still many unknowns.

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Endnotes

[1] Kaye, W. H., Fudge, J. L. and Paulus, M., ‘New insights into symptoms and neurocircuit function of anorexia nervosa’ in Nature Reviews. Neuroscience (August 2009), vol. 10, pp 573–84. http://www.nature.com/nrn/journal/v10/n8/execsumm/nrn2682.html

[2] Therapist Lauren Muhlheim presents two case studies in support of early intervention: ‘Can FBT Strategies be used for early eating disorder intervention and prevention?’ in http://letsfeast.feast-ed.org/2014/08/can-fbt-strategies-be-used-for-early.html

[3] If your child hasn’t been eating for a while, get medical advice on how much to feed in the first few days, and seek medical monitoring to avoid refeeding syndrome.

[4] Here are some sources to get your started in the search for validated treatments for bulimia:

In the US: National Institute for Mental Health (NIMH): ‘Eating Disordershttp://www.nimh.nih.gov/health/topics/eating-disorders/

For a study of 80 adolescents with bulimia, indicating better outcomes with FBT than with psychotherapy, see Le Grange, D., Crosby, R. D., Rathouz, P. J. and Leventhal, B. L., ‘A randomized controlled comparison of family-based treatment and supportive psychotherapy for adolescent bulimia nervosa’ in Arch Gen Psychiatry (September 2007), vol. 64, no. 9, pp.1049–56, http://tinyurl.com/k5ejo95

Hollon, S. D. and Wilson, G. T., ‘Psychoanalysis or Cognitive-Behavioral Therapy for Bulimia Nervosa: the Specificity of Psychological Treatments’ in Am J Psychiatry (2014), vol. 171, pp. 13–16, http://ajp.psychiatryonline.org/article.aspx?articleid=1809634

Fairburn, C. G., Cognitive Behavior Therapy and Eating Disorders http://amzn.to/1s6sFOj).

Useful comments on the use of psychotherapy in bulimia: Dr Sarah Ravin’s treatment results in ‘End of Treatment Outcomes for Patients with Bulimia Nervosa & EDNOS’ http://www.blog.drsarahravin.com/eating-disorders/end-of-treatment-outcomes-for-patients-with-bulimia-nervosa-ednos/

For more on the treatment of all types of eating disorder, consult the F.E.A.S.T site: www.feast-ed.org

[5] Australia/New Zealand:

Royal Australian and New Zealand College of Psychiatrists clinical Practice guidelines for the treatment of eating disorders

Also: Psychotherapy & Counselling Federation of Australia (PACFA). ‘A Resource for Counsellors and Psychotherapists Working with Clients Suffering from Eating Disorders’ Knauss, Schofield (2009), http://pacfa.org.au/wp-content/uploads/2014/05/LiteratureReviewEatingDisordersForPublication.pdf

US:
The National Institute of Mental Health highlights the greater effectiveness of Family-Based Treatment (also named the Maudsley approach) in ‘How are eating disorders treated?’, http://tinyurl.com/83frh8o. They write: ‘In a therapy called the Maudsley approach, parents of adolescents with anorexia nervosa assume responsibility for feeding their child. This approach appears to be very effective in helping people gain weight and improve eating habits and moods. Shown to be effective in case studies and clinical trials … for treating eating disorders in younger, nonchronic patients.’

From the American Academy of Pediatrics:
Rosen, D. S. and the Committee on Adolescence, ‘Identification and Management of Eating Disorders in Children and Adolescents’, Pediatrics, Official Journal of the American Academy of Pediatrics (2010) vol. 126, p. 1240, http://pediatrics.aappublications.org/content/126/6/1240.full.pdf . They write: ‘Family-based interventions, nevertheless, remain an effective and evidence-based treatment strategy for adolescent AN in both open trials and randomized controlled studies … Unfortunately, family-based treatment by experienced providers is not available in all communities. Nevertheless, the essential principles of family-based treatment can still be encouraged by community providers in their work with patients and families.’

I wish I could give you similar quotes for my own country, the UK, but the NICE guidelines on eating disorders (http://www.nice.org.uk/guidance/cg9/evidence/full-guideline-243824221) came out at the start of 2004, before some major studies about parents were published, and much-needed work is going on to update them. For anorexia, the Royal College of Psychiatrists writes: ‘The best researched form of family therapy for anorexia is known as the Maudsley Model’ in their ‘Anorexia and Bulimia’ leaflet aimed at patients of any age: http://www.rcpsych.ac.uk/expertadvice/problemsdisorders/anorexiaandbulimia.aspx

[6] Canadian Paediatric Society. Position Statement. ‘Family-based treatment of children and adolescents with anorexia nervosa: Guidelines for the community physician’ (Posted 1 January 2010, reaffirmed 30 January 2013). Findlay, S., Pinzon, J., Taddeo, D., and Katzman, D. K.  (Canadian Paediatric Society, Adolescent Health Committee), Paediatric Child Health (2010) vol. 15, no. 1, pp. 31–5, http://www.cps.ca/documents/position/anorexia-nervosa-family-based-treatment

[7] For instance, Hildebrandt, T., Bacow, T., Markella, M. and Loeb, K.L., ‘Anxiety in anorexia nervosa and its management using family-based treatment’, Eur Eat Disord Rev. (January 2012) vol. 20, no. 1, pp. 1–16, http://www.ncbi.nlm.nih.gov/pubmed/22223393

[8] Family-Based Treatment (FBT), an approach validated in randomised controlled trials, relies heavily on unconditional acceptance from parents.

[9] Let’s Feast Blog (23 May 2014), guest post by Dr Julie O’Toole: Medication.  http://letsfeast.feast-ed.org/2014/05/guest-post-by-dr-julie-otoole.html

and an entire chapter in Dr Julie O’Toole’s Give Food a Chance (http://amzn.to/UCcXL3).

[10] A good starting point to learn more about co-morbid conditions is Carrie Arnold’s book Decoding Anorexia (http://amzn.to/10Y2Una).

[11] Dr Julie O’Toole explains this beautifully in ‘The many disguises of an eating disorder’, http://www.kartiniclinic.com/blog/post/the-many-disguises-of-an-eating-disorder/

[12] For more on this, see Lock, J., ‘Evaluation of family treatment models for eating disorders’, Curr Opin Psychiatry (2011), vol. 24, no. 4, pp. 274–279. http://www.medscape.com/viewarticle/744675

[13] A good predictor of success with FBT is adolescents gaining 3 or 4 lbs by week four. Doyle, P., Le Grange, D., Loeb, K., et al, ‘Early response to family-based treatment for adolescent anorexia nervosa’ in J Eat Disord (2010) vol. 43, pp. 659–62. http://onlinelibrary.wiley.com/doi/10.1002/eat.20764/abstract

Another study found that a shorter duration of illness prior to treatment beginning was a predictor of successful weight gain: Agras, S. W., Lock, J., Brandt, H., Bryson, S. W., Dodge, E., Halmi, K.A., Jo, B., Johnson, C., Kaye, W., Wilfley, D., Woodside, B., ‘Comparison of 2 Family Therapies for Adolescent Anorexia Nervosa. A Randomized Parallel Trial.’ In JAMA Psychiatry (September 24, 2014) http://archpsyc.jamanetwork.com/article.aspx?articleID=1910336

Contrary to the findings of Doyle et al 2010, this study showed there was no difference at end of treatment, and a year on, between those who had gained weight fast with FBT, or more slowly with systemic family therapy. There were fewer hospitalisations with the FBT patients, though.

[14] Ravin, S., ‘Defeating the Monster: Helping Little Girls Overcome Anorexia Nervosa’. http://www.blog.drsarahravin.com/eating-disorders/defeating-the-monster-helping-little-girls-overcome-anorexia-nervosa/

Evidence that being at the younger end of the 12 to 18 range is a predictor of successful weight gain: Agras, S. W., Lock, J., Brandt, H., Bryson, S. W., Dodge, E., Halmi, K.A., Jo, B., Johnson, C., Kaye, W., Wilfley, D., Woodside, B., ‘Comparison of 2 Family Therapies for Adolescent Anorexia Nervosa. A Randomized Parallel Trial.’ In JAMA Psychiatry (September 24, 2014) http://archpsyc.jamanetwork.com/article.aspx?articleID=1910336

[15] Dr Sarah Ravin reports on end of treatment outcomes with her own eating-disorder patients: http://www.blog.drsarahravin.com/eating-disorders/end-of-treatment-outcomes-for-patients-with-anorexia-nervosa/

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