It strikes me more and more that the real problem isn't that most parents get bad information and consultation about eating disorders.

It is that even when we have the best information we don't have the authority to assert it.

I can point parents to good information, stuff I KNOW is correct, but if their pediatrician, coach, ex-wife, therapist, sister-in-law, emergency room doctor, teacher, and best friend don't recognize that information as authoritative then it doesn't really matter how right the parent is or how helpful the information could have been.

thank you, ELT, for the lovely graphic of ruminating
I know this in my own life. I deal with a range of doctors and professionals and friends and family who don't find me any more authoritative than any other mother on my street. It doesn't matter how many printouts I bring to a psychiatrist's office, or to our school board office: to them these are matters of opinion and theirs is just as valid.

Getting a kid well from an eating disorder takes a team effort: all the adults need to be on the same page. How many of us, even me, have that team? I don't. I may have an easier time finding clinicians who are clued in, and I certainly know the difference between them, but even with all that I couldn't form an ED team right now without having elements that pull away from what I know are best policies.

So, my question for today is: how fair is it to inform parents about the science and the most progressive treatment if they can't access it? If they have to form their own treatment plan and fight the other adults and professionals who know less?

Would it be better to save parents the anger and frustration of "what could be?" Would parents be better off if they complied with "what is" rather than trying to make it better when they can't?

I'm seeing too many parents get torn up and suffering anguish from knowing better than their clinical team, and spouse, but not having the authority to be believed. I know what the answer is in the long run: changing attitudes and better disseminating the science. But in the short term what happens to the family TODAY?

These are the things I ruminate on in the night...


  1. Laura - to answer your question - very, very fair. Even though they weren't the best I was able to find decent help. But I never would have been able to assemble that team w/o the information and education that I received from the very beginning from FEAST and ATDT, etc. I shudder to think what treatment would have been like if we had not been informed about the science of EDs or FBT. Just yesterday I came across my notes of the different therapists I interviews at the very beginning. The notes of one I had crossed out said the following: see EDs as an alternative copign mechanism, wants to explore the family role of the ED, sees EDs as a systemic problem (I'm assuming she meant family). This was the ED expert I was referred to in our area. And I knew not to use her because I had been informed! It was worth traveling 2 1/2 hours to find good help!

  2. So, Mary Jeane, I get that - I'm the same way (though there was no ATDT or FEAST then). So what made you trust the information from FEAST and ATDT more than that recommendation and other competing information?

    What gave you the authority -- that sense of your own ability to make that choice? And how did you keep strong in that while other influences were there to pull against it?

    And how do we give parents that authority?

    1. Already being an "autism mom" and knowing that so-called experts are often lack knowledge helped me a lot. Also, I have a Ph.D. (not in anything related to ED,though) and when I heard about FBT I did data base searches and looked at medical articles and saw that it was good stuff. It also jibed with my own common sense, what I already know from being the parent of a special needs child, that I do know best, that I know my kid best, and that I am in the best position to help my own child. While my child with ED is not my child with autism, my child with autism provided me with good training!

      BTW, when I took Maudsley info to my daughter's school to explain why she needs someone to eat with her (currently it is me, but in the Fall it will be a school paraeducator, if needed), the school nurse was all ears, printed out the information, and was sending packets to the other school nurses in the district. She said, "This is great--it's the best news about eating disorders I've ever hears." So, I do think the little people have some power.

      Also, related to autism, I know that some of my son's providers did learn something from me, the mom-who-did-her-research.

      Thank you for what you do! You and your team of volunteers have saved my 7 year old daughter from falling into the abyss!

  3. Quick answer? I trusted my gut. Long answer will have to wait as I'm running out the door.

  4. Laura, I don't think one can "give" parents authority. This is something that they need to "take" in the same way that I believe one must "take" responsibility, as well.

    In order to "take" authority, one must have knowledge. I believe parents have the right to learn and know because otherwise, as has happened in many cases including my own, their daughter's or son's life and hundreds of thousands of dollars might be misdirected (polite term). So, what you are doing is very important.

    I think a tremendous example of how "taking" authority works is the woman who was executive director of NAMI for such a long time. She retired last Spring. Her name is Laurie Flynn and you can read more about her here:
    She is a parent, not a medical person. She has no initials after her name. She openly said that a year ago when she spoke on a panel here (in April) after the tragedy here in Tucson. She continues to be highly respected. She earned that respect just as you are earning it (with aplomb).

    The work you do offers a lifeline to parents who need to know and at the same time who need support. NEDA offers a lifeline, too, as do parents who have "been through the mill."

    Thank you for what you do.

  5. I came to ATDT through desperation when nothing else was working and what I read there and on the FEAST site and the peer to peer made basic sense. What I needed to do was throw off my own prejudices and get rid of all the external messages and (un)helpful, well meaning advice and just be a mum.


  6. I think there are many factors... I'm a health care professional, and so can only speculate about these things, but I'm inclined to think that parents respond to and trust FEAST first and foremost because it offers hope and encourages action - parents want to be able to actively do something to make their child better, and respond to stories from other parents who have successfully refed their children. Secondarily, I think people trust FEAST because there are so many references to data, studies, and informed international experts bolstering the general air of credibility. Most people believe, to some extent, in the validity of science and studies, and also recognize that individual local health care providers can be misinformed, particularly about rare conditions. The people who are more difficult to reach with evidence-based information are those who are blindly adherent to theory and intuition, and those who have immense respect for and difficulty challenging the particular "authorities" they are involved with - I imagine these parents do not tend to respond very well to FEAST. And lastly, there is the aspect of the "ring of truth" - most families have been told things that do not ring true with what they know of their family and their child, and respond positively to something that does ring true.

    I think there is enormous value in families having accurate information even if they do not have the best team in the world - that might not be the case if the child required an advanced surgical procedure that was simply not available, but evidence-based approaches to eating disorders can benefit parents even with limited clinical support, and can empower them to break off treatment that is actively harmful to their family. The trick is that, in the real world, parents need to be able to accept treatment that is helpful even if it is not perfect, so that they don't throw the baby out with the bathwater. Anyways, just some ramblings. ;)

  7. OK, you Tiger Moms and warriors, help me out then.

    The authority we can and perhaps must give ourselves is limited by not having a larger authority to back us up with all the other adults that also play a role.

    What I'm seeing out there in the real world are parents who HAVE the information and want to use it but are stopped by unmovable objects: treatment providers, spouses, insurance adjusters, other professionals on the team, grandmothers... I have this myself: my own family's pediatrician isn't drinking the Kool-Aid on growth charts, for example. And I have no authority to change that except changing doctors (who will, in our area, most likely be worse and we won't know until we've already moved there).

    Without authority coming from the larger treatment world to allow us to say "So and so says," it doesn't matter how much confidence I have.

    What I'm trying to say is that if *I* can't pull that off how can a parent who is alone in this?

  8. My particularly troll defence has been to ask those in authority to "prove" they are right. I want black and white on paper with their signature at the bottom stuff, please nicely.

    If they can't prove they are right, they can't prove you are wrong. Never leave without a signature.


  9. I sit there in multi-disciplinary meetings when doctors (one in particular) describe people with eating disorders and "manipulative", say that they should be put in punitive inpatient regimes because "that'll sort them out", refuse to prescribe nutritional supplements because "there's no reason why they can't eat they just won't" and suggest the prescribing of drugs for which there is little or no evidence because they make people gain weight and are cheap. I have no authority to counteract these views (although I did get back up for a bit of eye rolling on the drugs question from a nice generalist psychiatrist once)and can do little more than take the minutes, creep out and cry in the loo. I do try to counteract with evidence, and with the authority of the leaders in the field, but the field is so small, and such a sink area of the least regarded discipline of medicine, psychiatry, that no generalist has ever heard of the people we think of as ED royalty. Kaye, Lock, LeGrange,Bulik and Johnson all of whom I've tried, can easily be dismissed as "American", Lask, Treasure and Eisler as living in (remote and unimportant) ivory towers.

    General society and my wider family hold a variety of myths about the subject and promote a wide range of unhelpful attitudes and behaviours from the blaming of families to the celebration of dieting. Trying to correct these without appearing to be a mad harpie with only one interest in life can be challenging and time consuming.

    Compared to that, the hard pressed, well meaning local specialist eating disorder service are perfection, but I can't get anyone around me to see them as anything but inadequate, under-resourced, under-qualified and associated with our family's worst fears and failures - all of which they ARE!

    All of this tempts me to wish that I wasn't interested in research, had never read a peer reviewed paper and maybe had never got a computer - but that's silly. What I REALLY wish was that I'd never had CAUSE to research eating disorders, that people in general and members of my family in particular didn't have them but I do and they do. Given the reality, I can either be an ostrich or use my brain and resources and learn as much as I can and make as much effort as possible to put it into practice. It's painful, but I'm claustrophobic and it beats the idea of living with my head in the sand.

  10. Think I'd better go and lie down now!

  11. To answer the question: in my opinion it is fair and reasonable to inform parents about the science and the most progressive, evidence-based treatments, even if they "can't access it." In the case of anorexia nervosa, the best available scientific and research knowledge shows that the best kind of treatment is for parents to refeed the sufferer and help her restore normal eating patterns. Parents have a right to know this, because it helps them evaluate professionals and decide how, if at all, they want professionals involved. In a market-based health care system, like the U.S. parents can vote with their dollars. In a nationalized health care system, like the U.K.'s, they can still go outside the system, and they can also use knowledge to exert political pressure. In short, I don't see any justification for not informing parents of the scientific knowledge and evidence-base that is available.

  12. No, Laura, parents would not be better off.

    Even if things AREN'T perfect out there and ARE frustrating. It is better for parents to know how things could be and should be. Because if they don't know, then what will happen to them is what happened to my family back in 2003.

    Confusion and panic
    Being blaming and self-blaming
    Parent / child prolonged separation
    Seeing the illness as a choice
    Seeing our family as a cause and something to be fixed

    I didn't know all this was going to happen until after my daughter was very ill and hospitalized many states away from us. I really didn't have a good sense of that. I trusted my local provider, that she knew the "best" place to send us. I knew that it didn't feel right from early on, that we weren't these things and that we were a healthy family. I just didn't have a good alternative place to take her or know how else to treat the illness. I'd been struggling on my own at home for 6 months prior to her being admitted. I didn't understand the illness and there was so much contradictory information (and just plain misinformation) out there.

    Frankly, if I had to go through this again, I'd take my child to wherever I needed to go to get the kind of treatment I thought best. And I can only know best if I'm informed. I know who I'd go to and where I'd go. I have a list in my head and I've given it out when asked. The list is small, but the only reason I have that list at all is my own extensive reading--and FEAST.

    So, yes, being informed is better even if much of the world hasn't yet caught up.


  13. I like to respond on the simplest form. I am not a physician. I am an intelligent human being. I belief that if I ask questions, I can learn enough to make the best decisions for myself and my family. I believe that most physicians can examine a patient, do some routine blood work and testing, probabalt spending at most 15 minutes with their patients. Some realize how valuable the patient interview is and l use their listening skills to ask the questions that will give them the best picture they can of their patients health. But this system is still greatly lacking because 15 minutes is just not enough time to make an accurate evaluation of health especially when someone is sick. People can be poor historians during the stress of illness.
    So here's my point. The best way to learn about a patient is first and foremost a good interview reviewing all systems not just the patients inial complaint. Next is talking to family who may know more about the patient and can give you more insight as a physician. Let's face it, how many of us have been frustrated by knowing our loved ones 24/7 and having someone see them for 15-60 minutes and draw conclusions that lack important facts. It is by a landslide the real team approach, all treating photic and, clinicians, close family members and patients who give the best picture of state, health and need.
    I have seen it in the field of medicine , poor coordination of care by treating physicians, consults and lack of communication with caring family members that leads to missed diagnosis, poor treatment and care.
    It has been my experience that a team that has a plan, reviews and evaluates the effectiveness of the plan on a regular basis , is the absolute best way to treat medical / psychiatric/ social problems and MAINTAIN good health.
    It is the loved ones who have a vested interest. They WILL allot as much time that is needed to ensure this goal. Physicians need and should depend on them for that common goal.

  14. Breathingmom/Lisa R.9:39 AM, May 25, 2012

    Of course parents need the information. My family is a poster child for this situation. We live in rural Tennessee and in our area there is no treatment period. When my daughter was diagnosed with AN last year we traveled to a prestigious university program elsewhere in the state that does NOT practice evidence-based treatment (we didn't know any better). We saw our daughter gain a little weight but not really get better. We knew we did not have the problem solved.

    When I finally found ATDT and FEAST last November, it immediately "clicked." I realized what we needed. We did not have any medical authority backing us up. We now work long distance with an amazing FBT therapist who I learned about through parents on ATDT. She is now our "authority;" we trust her and her treatment because under her care our daughter has improved tremendously -- become fully weight restored and much better in her "state." I will be relocating this summer to another state, and know I have to put together another on-the-ground treatment situation to ensure that my daughter remains firmly in recovery (we we still be guided by our long distance FBT). Again I do not expect the medical authorities there to "get it" but I've already met with a pediatrician and explained FBT and outlined what we need from her as part of our team. Although she's never been asked to do exactly what I'm asking, she signed on and has helped me strategize about all aspects of treatment in our new city.

    I do think empowering parents with knowledge and support can make a huge difference, even when other adults/medical authorities are not all aligned. It has in our case. That said, it shouldn't have to be this way! It shouldn't be down to the parents sweating to figure it out while their sick kids get sicker. That's why your work, Laura and others, is so important!

  15. I've been mulling this over quite a bit in recent days (OK for the last decade but more so in recent days!)

    I find it difficult to be heard on the subject of eating disorders, and sometimes do get frustrated that my knowledge is useless without the power to use it.

    However what's the alternative?

    In the 1950s when my husband was born it was possible, and usual, for doctors to lie to parents. My parents in law were told that their baby who was born with SpinaBiffida would die or become a "cabbage". When, thanks to his own stubbornness and the relatively newly discovered wonders of antibiotics, he didn't they were told that he would grow out of it - without "it" even being given a name. There was no expectation that the parents would research the problem and some genuine fear that if they did and found the prognosis to be poor they would reject the child.

    Even if this wasn't cruel, ineffective and just plain wrong it would be impossible for doctors to do this these days because nearly every parent has access to the Internet and most would immediately use it.

    Medical societies, health services, special interest groups all have to put out information and hope that patients will see their version. Compared with some other fields information on eating disorders is scarce. Health Services and General Health Information sites have limited information and limited interest in providing more - it's a specialist subject and an unpopular one with funding bodies.

    Having exhausted those sites where is a parent to go? One source of information is the for-profit sector, but their sites have to try to do two things at once, inform and sell. Many are just sales, some have very outdated information, but even the best cannot provide rounded information on anything but their own programme which even if it is the best in the world is not going to be available for everyone in the world.

    In such an atmosphere parents NEED organisations like F.E.A.S.T. where they are trusted with the latest information, spoken to as adults and even allowed to debate and disagree.

    THANK YOU Laura for being one of the prime movers in the empowerment of parents via the Internet. Knowledge is power and we have every right to have that power and every duty to use it.


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