This post was originally published on February 13, 2012.
I (among others) 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… okay… 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 meet 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 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 its 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 other 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 because it’s always been done 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.