July 8, 2011

Oh, we don't do that any more, do we?

I have been set a challenge by a friend in the eating disorders field. I'd like your help. This friend contends that my views on eating disorders (brain disorder, parents don't cause, patients don't choose, normalized nutrition first intervention) are not controversial and in fact are the standard of care for modern eating disorder specialists.

Help me gather examples of recent statements by ED specialists that contradict those ideas.

14 comments:

  1. This seems to fit under the heading below--Soft squishy science. Nonetheless, here's my take. The sample is biased if you are looking at ED MD specialists. They seem to be consistent in their approach, supporting your description. MDs without ED experience are all over the board. MH counselors tend to not follow the renourish first mode, but expect to change behaviors or make an impact often without accountability to concrete measurable changes. They tend to keep holding on to hope that change will come.

    As for us RDs, I'll speak for myself. I generally allow a couple of sessions to explore potential for change in our usual outpatient setting. If progress is not happening, I recommend a change in approach. I am not trained in FBT (and from what I've read RDs seem not to be much valued in their role here). But in a functional family I will support a shift of responsibility to the parents for meal management, often with success. Many family clearly are not candidates for this approach. And short of setting consequences such as a visit to the ER for tube feed, it remains unclear how to manage with the child who simply won't eat, even with the appropriate support. Consequences are great--if they care about anything outside of their eating disorder.
    That's my sense of things, based on 25 years in an outpatient setting.

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  2. Love the challenge, my blog post last month was in response to one such example (in my opinion). http://coachbeckyhenry.blogspot.com/ See the June post: "My Turn." I'll email some to you. You want names too?

    Becky

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  3. Yes, Becky - names and quotes!

    Hiker, I suspect you are right that discipline matters here. The differences between orientation to the illness can be stark!

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  4. Laura, I think more pervasive than parents cause ed's is the notion From Ed treatment professionals is that the sufferer has to 1) want recovery and 2) be responsible for that recovery. I have been fed, by treatment providers, the accepted belief that parents don't cause Ed but our responses and concerns about taking over the responsibility of re feeding is unhealthy and not effective. This was one of the most frustrating aspects for me. These notions by Ed professions allowed them to actually circumvent the accepted belief that parents don't cause ed's and then blame us for our children's struggle and mental state. I think it's is even clearly the other way around when treatment professionals do not support caregiver role in long term recovery.

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  5. Head Nurse, Bayswater CAMHS unit, "She needs to choose what to eat to get better. "; ED specialist nurse, same place, "Why do you love anorexia more than your mother?"; family therapist, same location, "Doesn't your family talk about things?" ; paediatric dr on children's ward at Poole Hospital, "Does your mum hurt you? Your dad? Shall we tell mum to leave?"; Child Protection Officer, "Don't stop her hurting herself, she needs to sort herself out.

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  6. Registered Dietician, "mom, maybe you need to work on your cooking."

    Registered Dietician, "Mom, can you stop pushing her? You need to back off."

    Registered Dietician, "Today we are going to make food out of Sculpy!" (Sculpy is a colored modelling clay - she spent the whole hour doing this)

    Psychiatrist, "It really is all about control. Once she feels she has it she will get better."

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  7. Lisa, I've never heard it put more clearly and I'm going to remember that.

    Red, I'm adding that to my list.

    Erica, any chance of getting more specific? I won't make it public, but this friend doesn't believe this stuff comes from real ED specialists.

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  8. There are examples cropping up on the FEAST forum all the time. I recall a post by emilysh recording a meeting with the head of a UK ED unit who was quite clear that parents cause, it is all about control, patients have to choose recovery... the lot.

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  9. Laura,
    The RD promotes herself as treating eating disorders and was recommended by both our d's therapist and psychiatrist. She has a published paper in Eating Disorders Review. I can email you her name privately...she lives in my community, a mere 5 minutes from my house. I have had contact with another local family who had the exact same interaction with her. Luckily I gave them your book and Lock/LeGrange and now they are refeeding at home.

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  10. • Send him the Joanna Poppink columns from empowher.

    • Also, the inpatient setting my child went to says this on their site:

    "Because eating disorders are not about food or weight, the real issues must be alleviated."

    "...committed to a eclectic approach which concurrently addresses physical and mental health problems. Staff members consistently guide and support patients in developing a healthy relationship with food, body, self and others, based on empowerment, self-responsibility and personal safety... The psychological treatment goal is to enable patients to work through the conflicts and issues underlying their eating disorders so that the actual causes of their symptoms can be identified, addressed and relieved."

    My note: they did re-feed her a total of 8 lbs in 9 weekS, but I wasn't to be involved once she came home...she had choose for herself. And she was still underweight by about 15 lbs. She was 14 years old, fyi. Family therapy meant calling twice a week to talk about "issues" which, from my perspective prior to her illness, there hadn't been any atypical to her age and stage of life. Certainly nothing on the order of magnitude to cause a life threatening, mind-distorting illness of the magnitude that occurred. They'd probably say that was denial on my part.

    • "characterized by an aggressive group therapy schedule, intense individual and family work, focused nutrition correction and prompt and complete discharge planning."
    • after d/c, she called her long distance nutritionist for support (not me). I never once had any contact in any form with the dietician or physician. I was not considered an important player at all. I found this extremely bizarre as my child had, up to that point in her life, not been much interested in doing her her own meal prep. Nor did my 2 other kids make and serve themselves their own meals on a regular basis (although they were certainly capable of cooking a snack or meal).

    • "Each patient has three individual psychotherapy sessions and two family therapy sessions per week. If the family resides outside of the area, which is typically the case, most of the family sessions are conducted by way of conference calls on speaker phones."
    -- Pretty awful when you can't see the people you are talking to, or they won't talk because they are so angry they are there in the first place or you aren't sure what the therapy is suppose to be about to 'get her better' because you're a bit surprise to learn that something you did got her sick in the first place. AND WE WEREN'T ALLOWED TO SEE HER FOR 5 WEEKS - WHAT MORE HORRIBLE THING IS THERE THAN THIS FOR A PARENT? HOW CAN YOU NOT FEEL YOU'VE DONE SOMETHING TERRIBLE OR LIKE YOU'VE ABANDONING YOU'RE CHILD AT THEIR TIME OF GREAT NEED? This, more than anything, says to me they believe in parental guilt.

    This is certainly not Maudsley. We were told to back off, to stop babying her, etc. None of which I felt we'd been doing prior. Had I 'backed off' she well could have died. I was NOT supported for my courage in acting and what was an extremely long haul illness. No wonder I cried myself to sleep for months afterwards and probably had PTSD. No wonder I'm still here at ATDT. The medical world failed ME is how I feel. My daughter did eventually get mostly better (she is still quirky about eating meat and her body image despite years of therapy) And a certain percentage of kids get better with NO intervention--my sister did and she was very sick at one point--not that I recommend that approach believe me). My point is the whole "blame the family" mentality, subtle or not, is so destructive. Even though we were treated a number of years ago, I TOOK THIS FROM THEIR SITE TODAY. I don't think much has changed there.

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  11. "Eating disorders are serious health- and life-threatening physical disorders that usually stem from some underlying emotional cause."

    http://renfrewcenter.com/for-you/index.asp

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  12. Sorry. Should have included this in my first post:

    And lots more here:
    http://renfrewcenter.com/services/residential.asp

    "Each resident is encouraged to openly discuss her symptoms, struggles, and successes in community meetings, therapeutic groups and informal social interactions. As a result, women develop new relationships based on mutual sharing and support. The Renfrew community decreases the shame, secrecy, and isolation that so often perpetuate symptoms and aims to inspire a renewed sense of strength and determination in our residents.

    Residential treatment at Renfrew takes place seven days a week and provides an intensive and comprehensive program of individual, group, and family therapy. Each woman is helped to understand her physical and psychological needs in order to facilitate her active participation in the recovery process. Psychotherapy groups focus on topics such as assertiveness, family patterns, sexuality, symptom management, and relaxation to help participants develop insights and enhance their adaptive coping skills. Through creative and experiential groups, residents are able to express their thoughts and feelings and confront underlying issues. Family therapy is also an integral part of residential treatment."

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  13. Where do I start... Our daughter ONLY became weight restored after we left all of the ED "Specialist" MD's, therapists, nutritionists, psychologists and social workers and moved to the Maudsley Method--after we began listening to a friend who had found success for her daughter with the Maudsley Method, this blog and FEAST.

    We returned to a trusted, sane family therapist who was an MD in a previous life and he was open and avaialable to Maudsley, reading all that I sent him and supporting us in our successful efforts to re-feed our daughter.

    It was NOT an easy road, as you all know, but it worked and all of the torture our daughter suffered in a lock-down facility (from which she still suffers PTSD), 40+ visits to ER's for IV replenishment, a court case attempting to remove her from our custody (thanks to reporting by her life long pediatrician of 16 years) and on and on and on.

    And only when we took matters into our own hands did we start to see some modicum of success and now she has not been to a doctor except for a minor urinary tract infection nor entered a hospital except to visit another friend in over 15 months....

    She has taken her GED and awaiting the results and has just beenm offered a paid internship in a local organization---Miraculous changes for which we are ever grateful to Laura, Maudsley, FEAST and all of you who comment here.

    So---Beware the "ED Specialists" who Blame in any way or who are not open to, let alone versed in, Maudsley.

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  14. Center For Change (sub-tabs)

    (Philosophy):
    "Eating disorders are learned behaviors and therefore can be unlearned."

    (Friends-Family-You):
    "Most researchers agree that eating disorders are an expression for unresolved psychological conflict. The psychological conflict an individual is experiencing may be a result of traumatic life experiences such as physical or sexual abuse or any other life experiences that leave the individual feeling flawed and defective."
    http://www.centerforchange.com/friends-family-you

    There is a lot more:
    http://www.centerforchange.com

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