I (among other people) have recently been challenged by Laura Collins to get the message out that weight restoration is critical to psychological recovery in anorexia nervosa. Some authority, Laura says, must declare definitively that psychological recovery is tied to weight restoration.
Some authority….ok…but who?
Since the late 1990’s the AAP (American Academy of Pediatrics) has issued guidelines for hospitalization (after all, a serious intervention) based on medical parameters and weight gain. They are a bit dated now, but still extremely useful in our quest to (a) keep children with anorexia nervosa safe and (b) force insurance carriers to cover such inpatient restoration and the induction of re-feeding. The sad thing is that many, many, MANY therapists and doctors ignore these guidelines and continue to treat patients in an outpatient setting with insufficient weight restoration, even though a patient would clearly meets AAP guidelines for hospitalization e.g. orthostatic or bradycardic or less than 75% of their former weight, or (in the case of very young children) not growing along their former trajectory and are being stunted.
What to do about this? AED (Academy for Eating Disorders) has issued their own guidelines for medical restoration, which are helpful in that they have a target readership of more than just pediatricians (the target readership of the AAP guidelines). Kartini Clinic received a grant several years ago to produce and distribute Spotting the Tiger, with it’s strong emphasis on weight restoration, to all pediatricians, pediatric nurse practitioners and family doctors in Oregon, Idaho and Washington. The result: a resounding silence. Not many watched this DVD, as far as I can tell—those physicians and nurse practitioners who have called me for help over the years have never reported opening it or having read it. And although I know that I am not “the authority” Laura seeks, I have written extensively about the critical role of weight restoration in full remission/recovery in my book Give Food A Chance and in my blogs.
So why the heck do people seem so impervious to the message that without weight restoration you get nothing? And I do mean nothing: no physical recovery AND no psychological recovery. Remember: psychological recovery is about the brain. The brain is an organ of the body; like all other organs it needs fuel to replace broken or used-up cells, and for functioning cells to communicate with each other. Starvation is as bad for children and for any other living thing. This takes no great leap of intellect: you can’t become psychologically normal in a state of malnutrition. You don’t (or shouldn't) need access to all “latest science” to know this. What happens when you starve any other mammal? Think about it.
Why the resistance to this simple message?
I postulate that it is yet another leftover from the days when the treatment of anorexia nervosa was the sole purvue of psychiatry. Even today, the adolescent psychiatric unit at our own hospital makes little attempt to re-feed patients who come to them for reasons but who also have an eating disorder. They’re “not set up for it” they tell me, and they “don’t believe that food should be forced” because they are not the “food police” and because they believe in motivational interventions that are precluded when the patient is not “vested in their own recovery”. They often tell us that unless the patient is “motivated” to get well no intervention is going to be meaningful. The excuse offered is that “ideal body weight is controversial” and can’t be determined accurately anyway. In keeping with this (mistaken) belief psychiatrists—and others—chronically underestimate a child’s goal weight.
Folks, it’s just not that hard to set a biologically meaningful goal weight for a child or adolescent; a little complex perhaps - like much of medicine - but certainly not too difficult or impossible.
In this country, as horribly broken as our system of medical care/insurance/access is, we are still largely able to vote with our feet. If your doctor or therapist doesn’t understand how critical complete weight restoration is to your child’s full recovery, find another one who does. My friend Charlotte from the UK tells me that “voting with your feet” is simply not possible in the system they have over there, and I can only believe her. With sorrow.
And you know what? In the US voting with your feet is not the sole purvue of the educated elite. In this country even folks of simpler background are on the Web every day, searching Craigslist, communicating on Facebook, networking socially, shopping for deals, selling on Ebay, and they can also search for care for their children on sites like NEDA, or EDReferral.com. Families from all over can read everything written on approaches to their child’s illness: so get informed, get powerful, and don’t accept “what’s always been done” for no other reason than that it’s always been done that way or because the provider who does it this way happens to be conveniently located near you. Start a discussion thread relevant to your life, and above all read and share discussion groups/resources already out there such F.E.A.S.T., Kartini’s blog, Sarah Ravin’s blog, Carrie Arnold’s blog, Xtra normal’s films by Bushesbre, and many more. Most of these blogs will have a list of recommended sites for further reading.
That great leveler, the Web, is on your side.
Why Weight Restoration in Eating Disorder Treatment Must Come First
posted by Julie O'Toole on February 13, 2012 at 9:46am17 Comments
on 02/13/12
Amen, sister! Sing it from the rooftops. :)
I didn’t start to get better until my therapist insisted I gain weight and my parents closed the gaps the AN had been sneaking through for years. I hated them at the time and for quite a while after, but I get it now.
on 02/13/12
Thanks for this post… I absolutely agree that psychological recovery, as well as physical recovery from AN cannot be achieved with adequate weight gain and sustained good nutrition. As someone who developed AN as an 11-12 year old in the 1970s, and had a very protracted course of illness, I sincerely wish that I had been helped to gain to a BMI > 18 in my teens, and followed up longer term. Instead I relapsed through my 20s and 30s until I became critically ill physically, as well as totally stuck in anorexic behaviours.
However, what I will add is that I do think that patients with AN, especially ‘longstanding’ (I refuse to call them ‘chronic’...) patients should be promised help with adjusting to life and dealing with any co-morbidities, as well as maintaining gained weight and good nutrition AFTER re-feeding. A big problem is that these patients are sometimes rapidly re-fed
and then left to try to cope in a very anxious state, feeling utterly ‘lost’ in
the world.
One of the things that helped me enormously after having been stuck in AN for many years was the promise that I would be helped AFTER I had gained weight. I clearly recall my
psychiatrist telling me that we would ‘talk around in circles’ until I had
gained sufficient weight to think logically. He said that I had to press on with
the weight gain and he would help me with difficulties that arose during
re-feeding (e.g. horrendous anxiety) and help me to cope AFTER
re-feeding. I had anxiety disorders, including OCD from a very early age and therapy has been necessary in helping me to manage these brain quirks. Without such therapy I would have relapsed quite rapidly, because for me (at least), anorexic behaviours are anxiolytic.
Without long term support I would never have maintained the weight I have gained over the last 6 years, or improved psychologically. This is the bit that the NHS and insurers may consider ‘too expensive’. AN can be a difficult illness to treat and some
patients may need quite long-term follow-up and support.
on 02/13/12
Bravo! I posted a link to this on my Facebook page and have also printed it out to take into the hospital where my daughter currently is to indicate to them just how important weight restoration is (although I must say that they are working hard on this point).
on 02/14/12
My wife has struggled with AN since childhood. She is 47 now in a nursing home with a broken back caused by a simple fall with severe osteoporosis. Sadly, she is in denial. She only eats about 800 calories daily and her weight is falling (now 82 at 5’0”). I’ve wondered if I should attempt some form of forced care (guardianship etc.) and also wondered whether treatment should focus on weight restoration first or a psychiatric focus with particular focus on psychotropic medication - or both treatment modalities simultaneously.
But if she denies she has anorexia and states she doesn’t need treatment, then what? I’ve generally felt that forced care, especially for someone her age, wasn’t appropriate especially for addictive behavior illnesses.
I am at a loss.
on 02/14/12
Dear Struggling,
Re guardianship: absolutely!
Re: “denial she needs treatment or has anorexia”, this is properly called anosognosia and is a fixed feature of the illness, just as fever is of malaria, and must be dealt with as such, not used as a reason by the doctors that she can’t be treated.
In my opinion, with long standing AN she will likely need Olanzapine (Zyprexa) to begin to accept re-feeding, and must first be re-fed and then engage in mental health restoration/analysis—- but loving support from family and teatment team throughout.
on 02/14/12
Thanks for your reply Dr. O’Toole,
I understand now that refeeding for weight restoration is the priority and although BMI isn’t a stand alone metric, 20 appears to be an appropriate target.
Are you suggesting that it may be necessary for her to be treated with Zyprexa first to make her more open to refeeding? That is to say, she would take Zyprexa for a period of time prior to starting the refeeding OR would this occur in parallel?
I am really puzzled about this because she simply will not eat more or even other types of food currently. I feel desperate and I feel I must take action now or she isn’t going to pull out of this - this time. She has had a feeding tube a few years ago and would violently oppose today (even if I had guardianship) - but is a feeding tube or similar technique warranted? How would someone her age be convinced to eat? Zyprexa? Because simply saying she must, isn’t going to work.
Thanks.
on 02/22/12
Struggling,
First identify a good team and set up her admission to their care (once you are convinced you and they are on the same page about saving her life), then get guardianship, then be there to support her through thick and thin and let the experienced team (which MUST include a physician on site) handle her refeeding and medication. If they have no experience with zyprexa, find another team.
The tube is not extreme. Death, now that’s extreme.
on 02/14/12
Charlotte is right (of course!), here in the UK, if you can’t afford to pay many many thousands for private care, the only way to vote with your feet is by leaving the system, going it alone and hoping you don’t get accused of harming your child. Difficult and dangerous.
on 02/14/12
Bravo Dr. O"Toole. So let me tell you how I save my 10 year old daughter’s life this year…....through the power of annectdotal information you discribed FEAST. She lost 30 pounds and was in dire straits. How to save her life???? I had clues, bits of empirical data. Her Individual growth charts going back to age 1. It was all very clear. She always tracked in the 85% for weight. So parents advised return her there. I stood up to the insurance co. who wanted to declare her weight restored at the hospital a full 20 pounds under where her growth charts said she should be. I stood up to the ED clinician as an outpatient who wanted to hold her 10 pounds under where her growth charts said she should be. THEN the ED clinician LISTENED to me, she upped the range. I saved my daughter’s life this year, 30 pounds weight restored in 8 weeks and I have my beautiful daughter back in so many ways. We still work toward complete recovery and toward keeping this in full remission, but thanks to what I learned on FEAST from other parents who had gone before me I found the courage, I found the clues and she is doing fabulous!!!!! Keep educating, keep writing….....“Give Food A Chance was my seminal go to book when she was in the hospital. Thank you Thank you Dr. O"toole
on 02/14/12
As a parent of a young adult suffering anorexia, it never ceases to amaze me how so many professional treatment providers , doctors nurse psychiatrists nutritionist therapists can lose site of the most important most acutely eminently danger in the moment. A young sufferer who s unable to maintain basic human need for survival. The first and foremost first need in the care of an eating disorder. Restoration physical homeostasis. they look at the elephant in the room, a clearly starving young person, whose fear of food and eating us so great that they can actually ignore the body’s most primal basic need next to breathing. They dont see the science of starving, the prolonged low heart rate low body temperature the depressed and anxious irrational mnd. They see seemimgly normal lab values and tests, sometimes even guidline normal weight ranges despite an actal plummet in weight. In it’s place they see dysfunction , family dynamics ( god help us if anyone could evaluate a crisis situation in a family setting and not see some dysfunction). They see mental illness and interpersonal struggle. I don’t know about you but I’m not at my best under the severe distress of a life threatening life altering illness of a loved one especially my child who by all instincts is my most mportant job to keep safe. But I do see clearly that first and foremost, is a individual be it child, teen or adult who is incapable of seeing their illness and dangers of their distortions. They are asked to sit down with dietitians and plot a meal pan strategy to do something they are incapable of doing, yet this is the norm in the treatment community of Ed today. They sit in these wonderful treatment groups and asked to talk about their feelings. Attempts at real therapeutic tool building is wasted on the malnourished distorted often obsessive compulsive behaviors and thoughts. What is really required is a strong behavioral solution that seems in most to need a tremendous amount of long term support that can only be achieved by the presence and participation of a committed loved one, usually parents. Do parents know how to do this intuitively? No, not really. We need an environment of support, education. Non judgmental of our sometimes well intentioned mistakes. It should be a crime in this day and age that Ed programs are still telling sufferers and their families that without the desire and commitment to recover, they are untreatable and discharged. I have seen it over ad over again with others I have met. It breaks my heart. I am my daughters advocate and I will not accept anything less than the set pan of care or her and I will be right there by her side or as long as it takes. I wouldnt wan anything less for myself.
on 02/14/12
By the way, I made a typo in my comment above. I meant to write:
“I absolutely agree that psychological recovery, as well as physical recovery from AN cannot be achieved WITHOUT adequate weight gain and sustained good nutrition.”
on 02/14/12
Accurate and full weight restoration is a topic near and dear to my heart. My young adult daughter suffered needlessly for over a decade due to many top clinicians in our area setting her target weight range too low. I could never understand why she didn’t recover.
She felt like a “treatment failure” for over ten years. She had no hope and often thought of ending her life.
Well, at age 22, when yet another clinician was having her “own her recovery” and she was rapidly declining in weight and emotional state, I was not going to let another clinician shut me out as her primary support. I was fortunate to find a family based therapist who sent me to F.E.A.S.T. and Laura Collins. Learning all I could about this biologically based illness, I realized that none of these clinicians set her weight range accurately, and she had NO CHANCE of recovering unless I insisted that we get her where she could begin brain healing. They were wasting their time providing insight oriented therapy with a young woman who was cognitively impaired at this malnourished state.
The weight she needed was a minimum BMI of 21, not the 19 or 20 that all the other clinicians would “settle for”. I have attended so many eating disorder conferences and when I hear that a BMI of 19 is considered recovered, and that there is no consideration of individual differences or looking at their growth charts, it makes me very very angry.
I wonder how many clinicians out there settle for these low weights, out of their own fears and biases. How many care that the most important first step is full accurate weight restoration and gaining physiological health, so the emotional health will catch up.
Thank you Dr. O’Toole for your continued leadership for the sake of our children.
on 02/14/12
I agree with you all - full weight restoration and, in the case of binge-purge disorders, normalisation of eating patterns, is a must at the start of all treatment models. As Cathy has so succinctly put it “psychological recovery, as well as physical recovery from AN cannot be achieved without adequate weight gain and sustained good nutrition”.
It’s also true that there are far too many treatment providers who haven’t a clue about this and risk damaging their patients’ lives forever with their cluelessness.
However, at the risk of defending the un defendable, or at least the unreadable (Charlotte knows what I am talking about but I can’t paste a link to her blog here for some reason) it is more complicated than that.
The guidelines may be clear on when to admit for orthostatic or cardiac problems but what about “risk of suicide” or “failure to progress in outpatient”. Who assesses that? and how? And once it has been done where should the patient be admitted? To a general paediatric ward where the nurses are busy nursing children with pneumonia or meningitis and are kind but have had no training or experience in eating disorders? To the general psych ward where the psychs believe “it is all about control” and the other patients are happy to eat any leftover food during the unsupervised meals?
One answer is obviously to reputable clinics like Kartini, but these are few and far between and a particular problem funding bodies have is that in this tiny field where the money is scarcer than it is in most other fields of medicine, any funds that go into providing inpatient come from the same pot as those that could go into outpatient treatment and fund the treatment of many more people and hopefully avoid the necessity of inpatient for most.
on 02/15/12
Julie, I agree wholeheartedly with this post. Full nutrition and prompt weight restoration are the foundation of successful treatment for AN. Weight restoration is necessary (but not sufficient) for recovery.
on 02/16/12
We know from the Minnesota Starvation Experiment that some people suffer serious psychological changes from even modest exposure to undernutrition, including depression, irritability, interpersonal distress, and self-harming tendencies. http://jn.nutrition.org/content/135/6/1347.full.pdf+html We also know from that experiment that people who are free from eating disorders tend to overshoot their pre-starvation weight once refeeding is underway and after the period of semi-starvation ends, then they eventually tend to settle back to their set point. This indicates that the body needs to compensate for the period of semi-starvation by a temporary increase in fat stores. So I say let’s celebrate weight gain, not be afraid of it!
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on 02/13/12
Julie,
Great minds think alike. I have reblogged your excellent blog and thought I would share with you my blog on the same subject.
http://charlotteschuntering.blogspot.com/2012/02/importance-of-nutrition.html