Scientific research has established that consistent full nutrition and weight restoration are the essential first steps in recovery from Anorexia Nervosa (AN). A recent study by Accurso and colleagues – the subject of my previous blog post – demonstrated that weight gain is a catalyst for broader recovery in Anorexia Nervosa (AN). The necessity of normalizing eating patterns and restoring weight applies to all patients with AN: male and female, young and old, chronic and acute, inpatient and outpatient, mild and severe. While the task of supporting weight restoration in a patient with AN is daunting and exhausting, it is very straightforward.
After weight restoration, the next steps in recovery are less certain, more varied, and highly dependent on individual differences. The best way forward is often ambiguous for someone who is well-nourished but deeply entrenched in the illness. For some people with AN, weight restoration alone is sufficient to bring about full remission. But for others, weight restoration is merely the first step in a long journey towards wellness. Unfortunately, there is little scientific research to guide us in terms of how to help people with AN who are weight-restored but still suffering mentally.
Parents are often quite adept at determining what their child needs in order to move forward. For this reason, parents continue to be essential participants on their loved one’s treatment team even after her weight is restored. Although their role on the treatment team may change a bit, and their degree of involvement may be modified, they continue to be their loved one’s greatest resource in recovery.
After weight restoration, I collaborate with the patient and her family to figure out how we can work together to support her towards full recovery. This typically involves a written treatment plan that we all agree upon. I find it incredibly helpful to have a written treatment plan, as this eliminates confusion and keeps everyone on the same page, working towards common goals.
It is not always clear what the patient needs next, so treatment after weight-restoration is very often a process of trial and error. We create a plan, implement it, and see how the patient does. If she moves forward in recovery, fantastic! If she remains stuck or regresses, we reassess her situation and modify her plan based on lessons learned from her struggles.
My next few blog posts will examine various aspects of treatment and recovery for weight-restored patients with AN. Please feel free to leave a comment if there are any particular issues you’d like me to cover on this topic in my next series of posts.
After weight-restoration, isn’t the next step re-establishment of normal patterns of eating behavior?
Chris,
The answer to your question is complicated, as individual differences become more pronounced after weight-restoration. The re-establishment of normal patterns of eating behavior begins at the start of treatment when parents take charge of their child’s nutrition. Normalization of eating patterns is necessary to some extent in order to interrupt the child’s restrictive eating behaviors and restore weight. Families move through this process at different speeds and using different strategies. Some kids have already re-established normal patterns of eating behavior by the time they reach weight restoration. In these cases, the next steps would be gradually returning control of eating to the adolescent in an age-appropriate way and supporting him/her in returning to a normal teenage life. In other cases, recovering kids require an extremely high number of calories for many months after weight restoration in order to maintain a healthy weight and continue growing. These kids will often require a high level parental support and supervision for many months after weight-restoration. And because they have such high caloric requirements, they may not be able to eat “normally” for quite a while. This is just one example of how treatment after weight restoration varies greatly from person to person. It is very important, in my opinion, to tailor treatment to the individual patient and family. So, while re-establishment of normal eating patterns is an essential component of AN treatment, the timing will differ based on the needs of each patient.
Really glad to read this and am looking forward to further posts.
My daughter is four years post weight restoration (and I’ll say three years post getting past fear foods and other major issues, and we raised her target weight and met it during that time too) and doing well in so many ways. She looks healthy, she’s relatively happy, she’s rational, and her perfectionism is gone. Fear foods are long gone. She actually really enjoys food and is usually just as happy to have a rich meal as any other. She gets her own snacks (sometimes even without being reminded). She’ll occasionally have a small something outside of meals if she’s with other people. Exercising has never been much of an issue for her. In many ways she’s a typical teenage girl.
But she is still rigid about food. For example, she won’t take seconds unless we tell her to, and then she takes them dutifully, but will never do it on her own. If she is responsible for filling her plate, she often errs on the side of too little. If she’s out without us and the food situation is complicated, she will still occasionally just not eat rather than come up with an alternative that works for her. She also can’t talk about illness. She doesn’t deny it like she used to, but she refuses to talk about it. She also still has anxiety, especially social anxiety, and she has a need to fill up her time and her mind with activity (often things like movies or crafts).
She’s entering her senior year of high school, and we are worried about college and wondering what we can do to prepare her and us. We know to expect a relapse, and we’ve decided she can only go to a school within an easy driving distance (where I can actually bring her meals if it comes down to that), and we’ll take out tuition insurance. She hasn’t fought us on the location at all. That’s about all we’ve figured out. We never had great experiences with her with therapy, and I’m worried bringing her to a therapist (if we can find the right one in our rural area) would actually set her back.
I don’t have specific questions, but any insight into where to go from here would be much appreciated.
Gobsmacked,
It sounds as though you have done a wondeful job of helping your daughter restore her health and resume a full teenage life. I agree with you that therapy is not necessary at this point, and probably wouldn’t benefit her anyway.
Your daughter’s anxiety may be characterological – just a part of her personality – rather than a sign of a disorder that needs to be treated. Perhaps an ongoing challenge in her life will be to live a full, rich, meaningful life even while experiencing anxious thoughts and feelings. This is totally possible – many highly successful and creative people have anxious temperaments. Those who thrive are able to make their nature work for them, rather than against them.
I would recommend using senior year to help your daughter practice skills for independent living, including independent eating. For example, it would be helpful for her to take weekend or week-long trips away from home without you to visit friends or relatives. This would help solidify her ability to feed herself in unfamiliar environments and with less familiar people. The way she handles these experiments will provide you with valuable data.
Before she goes away to college, I would recommend creating a written relapse prevention plan which spells out what measures will be in place to help her maintain her remission, how support will be increased if she struggles, and under what circumstances you will require her to return home to focus on recovery. I wrote an article for the FEAST blog a few months ago on this very topic. I would recommend reading that for more specific suggestions.
Best of luck to you and your daughter!
It’s a relief to read that you think we are on the right track. I’ll be sharing your thoughts with my husband. Thank you so much.
Sarah,
OK, if the kid is both weight-restored and eating normally when in charge of her own eating behavior, then what’s the problem? Why would she need continued professional treatment for an eating disorder?
Chris,
If a kid is both weight restored and eating normally when in charge of her own eating behavior, then she probably does not need continued professional treatment for an eating disorder. See my response to gobsmacked for an example of this. When I write about treatment for AN after weight restoration, I am not necessarily referring to “professional” treatment. I am also referring to loved ones’ ongoing efforts to ensure that their child stays in remission and thrives in life. This aspect of “treatment” happens at home and requires little or no professional involvement. I’ll elaborate more on this in this next series of posts.
Sarah,
Perhaps you could also address a related issue: whether or not parents should involve a professional at all in the treatment of a child or teenager with anorexia nervosa. In the modern era, with Internet access, parents can now easily read every study and treatment guideline that has ever been published on the subject of AN, and therefore become at least as expert as most professionals. Combined with their unique knowledge of their kid, parents can then tailor evidence-based treatment methods to the indvidual circumstances of their kids and their own families, bypassing the eating disorders professional altogether. Most families I know are doing this, and are, significantly, experiencing phenomenal success. They are avoiding the aggravation, inconvenience, and cost of dealing with eating disorder professionals, and the added burden and waste of time involved in interacting with insurance companies.
In the digital age, with parents now able to empower themselves, are eating disorder professionals in danger of becoming obsolete?
Chris,
I love the idea of parents becoming informed, empowered, and piecing together evidence-based interventions tailored to their own kid. In fact, this is the topic of a book I am currently writing.
I don’t think ED professionals will become obsolete. After all, it is ED professionals who conduct clinical trials to determine which treatment methods are more effective. The information in the internet that parents reference is written by ED professionals. I do think that ineffective treatment methods will become obsolete as patients and families become more informed and seek out the most effective treatments. I also believe that the digital age is helping to usher in a new era of true collaboration between families and professionals working together to support patients.
The treatment methods with the strongest evidence base for EDs – FBT for adolescent AN and CBT for adults and teens with BN – involve considerably less contact with professionals and considerably more of the treatment happening at home, via family meals (as in FBT) or patient homework assignments (as in CBT). So, the roles of ED professionals are evolving in a way that makes treatment more efficient and more cost effective. These are all very positive developments in the field!
For anorexia nervosa, as noted, the treatment model with the strongest evidence is Family Based Treatment (FBT). However, in the FBT approach, it’s parents, not professionals, who take the lead, and it’s not clear that the involvement of the professional therapist makes any difference in the outcome one way or the other. Evidence for this conclusion is provided by a study published in 2005 in which 86 adolescents with AN were randomly assigned to either 10 FBT sessions with a professional or 20. After one year, there were no detectable differences in outcome between the two groups.
Lock, A comparison of short- and long-term family therapy for adolescent anorexia nervosa. http://www.ncbi.nlm.nih.gov/pubmed/15968231 If the professionals were having a beneficial effect, on the other hand, one would expect that more involvement by them (20 sessions) would result in better outcome than 10 sessions. As shown by this study, however, that was not the case.
This data leads to the intriguing idea that while 10 sessions are as good as 20, zero sessions with a professional might be as good as 10. This is what I mean when I suggest that eating disorder professionals are potentially becoming obsolete in the treatment of children and teens with anorexia nervosa.
Chris,
This is a reasonable and logical theory. I would love to see a research study testing the hypothesis that 0 sessions with a professional are as good as 10 sessions. The study you reference notes that a certain subgroup of patients (those with severe OCD traits and those with non-intact families) benefit more from 20 sessions than from 10 sessions. This finding suggests that there are individual differences between patients with AN in terms of how much treatment they need in order to recover. I would hypothesize that for a certain subgroup of patients, zero sessions may be as good as 10, or even better than 10. And perhaps for another subgroup of patients, 10 sessions are more beneficial than zero.
This is a really useful subject. It’s lovely that you’re asking for issues for your next posts.
I would be interested in your experience of preparing a young person for independence in relation to how much to eat, if they cannot/will not (I guess the distinction matters) trust appetite/satiety cues. Bearing in mind they will eventually fly the nest.
Here’s what I’m pondering:
Calorie information is absolutely everywhere, so a youngster can easily do the sums rather than take a gamble (eating too much or too little).
Or they might rely on occasionally checking their body weight, but how to manage that so it’s not part of the disorder either? And so that they don’t misinterpret normal variations?
Or they might stick to what they know, but that won’t release them from the rigidity of the eating disorder.
So many of my own daughter’s peers engage in disordered eating behaviour – skipping meals, calorie-counting and weighing themselves, and no trust of their appetite, so what can we offer our children for an independent and care-free future?
Hope these questions are relevant to your topic.
(I love how clearly you write. And I love how you know parents at this stage of recovery continue to be a resource, not a problem.)
Eva,
These are very good questions. I address these issues in today’s blog post entitled After Weight Restoration: Envisioning Recovery.
To answer your questions specifically:
If your daughter cannot or will not rely on hunger and satiety cues, then it is very important for her to follow some sort of structured eating plan when she lives independently. That could mean having a general knowledge of the portion sizes she needs, or eating “by the clock” (meals and snacks at certain times of day without regard to hunger/satiety), or even counting calories. The latter would be my least preferred option, but still not necessarily a bad thing. The alternative could be that she will under-eat, lose weight, and trigger a relapse.
I don’t think it is necessarily a problem for your daughter to “stick with what she knows,” so long as she is getting adequate, balanced nutrition, maintaining her weight, and living a full life. Of course we would prefer for her to eat a wider variety of foods, but sticking with her comfortable foods may be what she needs in order to cope with the anxiety of eating. It may not be realistic for her to be an intuitive or adventurous eater, or even a flexible eater. In the end, what is most important is for her to be physically and mentally healthy, and live a full life, even if this means not being totally “normal” around food (whatever “normal” means).
I believe that it is very important for people who have recovered from AN to be weighed regularly by a third party once they are living independently. Sure, it is a pain, but this is part of the reality of having a history of AN. Her ideal weight should be a range of 5 or 6 pounds, not a single number. The third party could be a member of her treatment team (if she has one) such as her physician, her therapist, or her dietitian. In my opinion, the recovered person should not be the only one monitoring her weight, because AN may not allow her to be honest about her weight if it is dropping.
I have had great success with kids going off to college after recovering from AN, getting their weight monitored regularly at the university student health center, and having the health center email or fax the weights to me. This works well for kids who no longer need a treatment team but who still need weight monitoring to prevent relapse. I typically start off the first semester with weekly weigh-ins, which are then reduced to every 2-3 weeks so long as the person remains stable in recovery.
Thank you for taking the time and care to reply in detail.
I get it. There is sense in the weighing being done by a third party while the risk of relapse remains. And I’m guessing ‘how long for’ is not a question anyone can answer.
I am reading your reply while bearing in mind also the pragmatic “doing what works, in this moment” philosophy which you explain in your next post. I would not like to be unambitious. What I’m getting from you is that one can accept a pretty good state while being on the lookout for things that are ripe for improvement.
Eva,
You ask, perhaps rhetorically, “for how long” with regards to regular monitoring of weight. The most basic answer is “for as long as needed.” I would say that pretty much any form of support and monitoring should occur for as long as needed in order for the patient to maintain her wellness.
It is unwise, in my opinion, to quantify a specific length of time for weight monitoring (or for any other form of support or monitoring) because this varies dramatically from person to person and depends entirely on the patient’s progress.
To give you a sense of what is typical in my practice, I will say that the majority of my patients who have recovered from AN are weighed on a weekly basis, by a third party, for their first 12 months of independent living. This could mean for their first year of college, or their first year of graduate school, or their first year living away from their parents and working.
I think one year is a good, solid amount of time to adjust to a new environment, whether that is to college life, or to graduate school, or to living in one’s own apartment and working full-time. Also, there is some evidence that relapse is most likely to occur in the first year after recovery, so it makes sense to keep up the regular monitoring to catch a “slip” before it becomes a relapse. Finally, one year is about the length of time it takes for brain healing, and about the length of time it takes for nutritional needs to normalize.
After the patient has successfully completed his/her first year of independent living without relapsing and without losing weight, it may be appropriate to reduce the frequency of weigh-ins to every 2-3 weeks. Of course, if the patient has great difficulty maintaining his/her weight or struggles with frequent, distressing ED thoughts, it would be wise to continue weekly weigh-ins for a much longer time.