F.E.A.S.T's Around The Dinner Table forum

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I'm putting this on the big list just in case there's a parent out there who is planning to attend the conference in Baltimore this weekend.  I have gone to one conference before and found myself really wishing I had someone with me who had been in the trenches. 

Here's a link if you're close enough to come and are interested:

Mom of a younger outpatient
Wish I could, Juno, but it's a bit far away!

Do report back if you go.

D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]

Wish you could've gone too, OneToughMama.  Maybe you can represent on your side of the world.

I am "lucky" in that I have a license that requires me to have continuing ed and so I have an excuse to spend money and time going to stuff like this. I go to hear what is going on in the research and to have more insight into the treatment community.  This conference delivered on both and the outcome was mixed. Below is a summary of what was presented along with lots of my own editorial comments and thoughts. I'd be glad to send more details if any one is looking for them. I'd love to hear what you think too.

Here's a summary of presenters:

1. Carlos Grilo, PhD, Yale University, Binge Eating Disorder: A new era of diagnosis and treatment
Dr. Carlos's work was very driven by research and by a desire to truly understand the experience of persons struggling with BED and how best to help them find healing. He explained that a key criteria of diagnosing BED is that binges that occur at least once weekly.  AN and BN "trump" BED as a diagnosis if patients meet the criteria for both. The nature of the binge, the feeling of "being out of control" and experiencing "marked distress," as well as shame and guilt afterwards, matters more than the amounts consumed.  Some patients present with average weights, though, if untreated, patients are likely to gradually gain weight over time.  He found that patients desired a relief of symptoms much more than weight loss. Co-morbidities include anxiety disorders (65%), mood disorders (46%), impulse control disorders (43%), and substance abuse (23%). The most effective treatment they have found combines CBT and weight loss management (through a dietician). CBT alone led to a 50% success rate but did not assist with weight loss. They tested their approach with a low-income, Spanish speaking population and found that the success rates were the same. Research is being done on using the medication LDX for BED with some success. There is risk, though, as it is a stimulant with addictive qualities.  

2. Nancy Zucker, PhD, Duke University/ Medical Center, The Phenomenology and Management of ARFID
The research they are doing at Duke on ARFID has brought out large numbers of adults who were previously undiagnosed. Their research challenged the notion that people would try new things if they did not have access to their safe foods and found that when people are anxious/ depressed/ stressed, they are more rigid and less exploratory.  They will be more likely to not eat even if they are hungry. She found that ARFID sufferers expressed frustration that others saw their aversions as mere preference when, to them, they felt their aversions were driven by a "disgust" reaction. This is what makes it difficult for them to keep from gagging when trying new foods. Disgust leads to increased anxiety and resists extinction more strongly than a fear or phobia. Validation of their experience and consistent positive reinforcement made a difference. Clinicians validate the usefulness of the role of suspicion in trying new food and encourage participants to support each other while they go on "food adventures" that push their limits one small step at a time. I am not clear on what they offer in terms of inpatient care. They do offer outpatient, a parent intensive and have guided online groups so that participants can continue to support each other.

3. Martin M. Monotony, PhD, Ryerson University, Toronto, Nature and Treatment of Perfectionism
Differentiated perfectionism from ODPD (obsessive compulsive personality disorder). Research in genetics has shown moderate heritability. No research has been done in brain imaging/ neurotransmitters. This left him to mostly describe perfectionism as a "learned behavior" that can come out of a "chaotic home" or one that is too rigid (I guess parents have to be in the "just right" category to avoid being the cause). After these comments, I admit that I had a difficult time listening to the rest of what he had to say.  The gist was that perfectionism is only a "problem" when it interferes with daily functioning and that CBT is the most effective treatment. When cost/ travel are barriers, group treatment and self-help books have also been shown to reduce symptoms. 

4. Allison Kelly, PhD, University of Waterloo, Our Brains need compassion and so do our bodies: An examination of self-compassion's contribution to body image
Dr. Kelly began by basing her work on Paul Gilbert's work on the role of self-compassion in healing. She described three systems within us: the drive system, the soothing system, and the threat system. She also emphasized early life experiences as being the strongest effect on these systems and their ability to function, thus again giving life to the idea that parents are the ones causing their children's dysregulation. Anxious attachment and self-esteem also figured in. The idea of the treatment is to build up the functioning of the soothing system as a way of counteracting the revved-up state of the threat system. Her research was mostly done with college students and ED patients in an inpatient setting. It does seem that self-compassion is a helpful approach to be used as an adjunct therapy.  My concern is that this research is not done with a biological understanding of ED as it's basis.

5. Ivan Eisler, PhD, Maudsley Hospital, London, Family Dynamics in Eating Disorders
Dr. Eisler is a key figure in Maudsley/FBT treatment and was a draw for me to attend the conference. He reviewed the professional field's changing understanding and approach to treating EDs and the process of how we got to the underpinnings of FBT.  He also clarified that there are three manual-based treatment approaches that vary slightly from each other.  They are FBT (Lock and LeGrange), one by Robin & Siegal (I did not get the name) and FT-AN/ FT-BN (Eisler and his colleagues). Eisler's differs in that it allows the first stage to focus on engaging the family and developing the therapeutic alliance. He feels that this step is not addressed fully in FBT and is necessary for improved outcomes. He presented a pie chart that showed the factors that effect treatment outcomes.  In the chart was client differences (40%), therapist qualities (30%), technique/ approach (15%) and hope/confidence (15%). As an example, he noted that hope increases significantly when families believe that they are working with an expert. The overall idea was to show that establishing credibility and maintaining a therapeutic alliance together are even more important than using the best approach. He noted that the costs of treatment were cut in half when a family was immediately referred to a specialized provider rather than be treated by generalist. This was mostly due the increased need for hospitalizations.

I also attended a breakout session with Dr. Eisler. The one part that stood out for me is that he has switched to thinking about family work as empowering the parent to battle the ED to thinking about mobilizing both the parents and the child/teen to battle ED together.  It is a subtle shift that he said has really helped with oppositional adolescents.

During the breakout session, a clinician who practices FBT and trained under LeGrange spoke up to debate with Dr. Eisler.  She felt strongly that a large percentage of adolescents with ED have been mistreated by their families and that, in many cases, AFT (adolescent-focused therapy) is a better approach.  I spoke up but not very effectively.  Dr. Eisler engaged her but was not successful in changing her perspective. I hate that parents could think that they've found help in an FBT-trained practitioner only to find that this very same person is biased towards finding how they could have caused their child's illness.

My thought is that there is the big risk in taking an agnostic approach to the origins of ED.  No one is really put at ease with this agnosticism. Practitioners, families and sufferers all continue search for an understanding of how they got to where they are. Agnosticism aims to neutralize but keeps the door of parent blame wide open.  The best anecdote for this is to underpin treatment with a biological understanding of the disease and push more professional trainings to do the same. Otherwise those myths will just keep perpetuating themselves.

Mom of a younger outpatient
This is really interesting, Juno. It seems to me that there is going to be a battle about this disease and its "origins" for a long time to come.

I would also point out that if you look at websites and comments to newspaper articles on ED, there are always a lot of current/ former ED sufferers who say that their parents were to blame for their illness. Are they wrong? Maybe they had a horrible family life and is it possible that this provided the trigger for their ED or maybe their family perpetuated their ED and made it harder for them to get better. Just as some people who seem sadly to have had a trigger like some kind of abuse. And then on the other hand there are those children who have wonderful supportive parents - like everyone I know on this forum - and often have no obvious trigger for the illness, and their parents are the main reason that they can recover.

And it seems the psychiatrists can't agree amongst themselves as to what is causation and what is correlation. Maybe some of you strongly disagree with this and think that it is impossible for abuse/ trauma to cause an ED. But there is a difference between saying that not all EDs are caused by trauma and saying that trauma cannot cause an ED.

It is no wonder there is so much confusion. What do you think?
I definitely know what you are talking about Hyacinth. I cringe whenever I read those comments. It seems crass to invalidate the point of view of someone who has suffered yet I don't want to agree with them either.

I've just begun reading Decoding Anorexia by Carrie Arnold.  She's a science writer and someone who suffered for at least a decade so she comes from that perspective.  For the record, she also reports having a healthy childhood and no history of trauma. Instead of blaming her parents, she blamed herself for getting sick and not being able to get better. She says "never once in my first seven years of treatment did someone mention biology or genetics. Never once did someone attempt to lift the shroud of blame that had enveloped me and my parents. About sufferers who did blame others she says "If anorexia were biological, they say, it would invalidate all of their years of suffering. That's not my goal. What I'm saying is that, without a biological predisposition, no amount of crappy parenting, horrific abuse, and beauty magazines that only make you feel ugly would cause an eating disorder. "

It is true that the professionals do not agree and that this is what makes it so messy.  If professionals are not seeking out this research, there is plenty out there to reinforce what they've already learned. And many of them are busy training the next gereration. I am sure that some left this weekend's conference, after hearing from experts from the US, Canada and London, with their belief in parent blaming intact. The question, I think, is how can we do more to change this? It seems so wrong for parents to have to deal with this at the same time that they have a very sick child.  And it interferes with treatment in all sorts of ways.
Mom of a younger outpatient
Dear Juno,

For those who blame parents I would love to examine their own families a blame them for every flaw in their child including all & any genetically inherited diseases/illnesses.

I suggest you look at what the Academy for Eating Disorders publishes as the 9 Truths http://www.aedweb.org/index.php/10-news/171-9-truths-about-eating-disorders  & Truth 2 states

Truth #2: Families are not to blame, and can be the patients’ and providers’ best allies in treatment.

Having recently had professor Cynthia Bulik here in Western Australia & having the privilege of spending a lot of time talking with her & her husband Pat about what are causes & triggers I find that any clinician that sticks with old school thinking about the causes of eating disorders is one to avoid completely. They have obviously got confused between a cause & a trigger. So these clinicians that perpetuate their opinion that parents cause eating disorders, what double blind randomised clinically supervised  trials have they done to prove their statements? I bet not one!

Would the clinician who debated Ivan Eisler have written any books about fathers & daughters & hunger?
ED Dad
With regards to the ARFID presentation, if anyone here is on the Facebook support group "Eating Disorder Parent Support", a poster there with personal interest in ARFID wrote up a very lengthy  and I thought, informative summary  Dr. Zucker's presentation.   She posted it yesterday.  
Thanks for that Honey_Badger.  My h is on EDPS so I'll ask him about it.

AussieEdFamily--I'm mad at myself for not getting that therapist's name. I'd like to let others know to avoid her.  I have a feeling that she would dismiss many of AED's 9 truths. I did a presentation for school counselors based on the 9 truths, though.  It's a simple powerpoint if anyone wants it. It can't hurt to get the word out when we can.

From what I've read, I think Cynthia Bulik is one of a rare breed that "gets it".  We only need more of those.  I just looked up the fathers, daughters, and hunger book. How awful. I've met so many good dads along this journey.  The last thing you need is more arm chair theories about what you may have done wrong.
Mom of a younger outpatient
Read this yesterday but didn't have time to comment.

It sounds as if Eisler gave much the same talk as he did at the EDIC conference here - which is understandable, can't expect the guy to come up with something new each time and this IS his current "state of the art" resume of his current understanding of the field of adolescent eating disorders.

I was impressed with him and wished that we'd had that kind of approach way back when, but we didn't and he didn't practice as he does now, then, either. I was especially fascinated by the manual by Robin and Siegal which I thought Eisler said was the first manual and was unpublished. If what Eisler was saying was right (or if I heard it right) that was probably the manual our team were using rather than the Lock and LeGrange one which was published after (if only just) our time. Apparently it was more "behavioural" than the others but I don't really know what that meant. Our team combined it (or whatever form of FBT they were using at the time) with more systemic family therapy which I now know does come from the point of view of healing the things that are "wrong" with the family. It was painful and ultimately damaging to our family but others have survived or even thrived on it so I can't dismiss it totally. With hindsight though Eisler's current claim to try to engage both adolescent AND parents and rather to "empower" parents to "battle" with the eating disorder to "encourage" parents to play a part in treating the illness (more biology, possibly less potential for conflict) with the help of a dietician in the sessions should the parents ask for one, sounds very attractive.

As for out and out parent bashing, only one speaker went in for it at EDIC and in order to get an opportunity to challenge him on it (and to eat my lunch) I managed to miss the presentation on the 9 Truths. I would really like to have heard that and it's a pity that they scheduled it at lunch time and so many of us, including Mr anti-parent, missed it.

By the way Mr anti-parent was firmly OUT of either the Eisler or the Lock and LeGrange FBT camp and running straight back to Minuchin and the history of Family Therapy for eating disorders but his followers are working within the UK system in our muddled Maudsley-lite "evidence based" way that can really mean almost anything depending on who is doing it so no-one seems to have the monopoly on parent blaming clinicians. I do agree though that Cynthia Bulik is one of the greatest of those on the other side.
Fiona Marcella UK
Thanks for this perspective Fiona.  I liked Dr. Eisler too. It makes me happy to hear about you taking on the anti-parent. I feel like I need to work on my ability to do this.  I have such an emotional reaction when I hear those ideas spewed out that I become not so eloquent or effective in the moment.

I think the reason that these anti-parent practitioners still feel comfortable expousing their beliefs is that most of the field is staying with Eisler's/ Lock & DeGrange's "agnostic" stance on what causes eating disorders.  This approach may have been a good bridge to change the treatment field towards what works but it leaves a gaping hole in its wake.  It's human nature to want to know the "why" and agnosticism doesn't acknowledge this. Too many practitioners think they know why eating disorders happen (bad parents, trauma) and there's not enough out there to force them to question this "knowledge". Many are still in full practice mode and are providing internships for the new guard. 

I don't think it's particularly useful early on to look at the individual's course of illness but it is very helpful to present what we do know about biology, genetics, and co-morbids (Carrie Arnold's book does an amazing job at this). As a parent whose life was put on hold to become a full-time caretaker, finally finding this information was game-changing. It increased my capacity for empathy immensely. Yes, I believed that we needed to get her to eat and to focus on her physical well-being.  But I had no clue why her behaviors during re-feeding were so bizarre and neither did any of the therapists we worked with during that time.  When I described behaviors (running away with no plan, hanging out a second story window, opening a car door on a major highway, out-of-character use of physical force and obscenities), they gave me blank stares.  It simply did not fit into their understanding and they had no idea what to tell us. Personally, I'd like to see the "agnostic" approach go in the dustbin and to raise expectations that practitioners have a current understanding of what we've learned. 
Mom of a younger outpatient
I am with you on the "agnostic approach".

I have a friend who is an Anglican Vicar. When she first read me writing about Anosognosia she misread and thought I was saying "Agnostophobia". I had to put her right and let her know that that wasn't really a thing, but if it was a diagnosis I'd definitely have it when it comes to FBT
Fiona Marcella UK
Thanks for the discussion ladies. I believe the agnostic approach was meant to appease the search for causality and blame so focus could be on the illness and moving forward . BUT.. as you both have expressed(and I agree) , it has left the door open to blame and speculation out the a_ _. It really is a problem. Can't there be a universal approach such as in the " nine truths" by Dr. Bulik , then a vow to decease focus on what may of happened to cause the illness but a declaration to move forward toward nutritional restoration? Once nutritional restoration has begun , biology can be explained in depth . I feel as though our family has been scrutinized and bashed so badly we have no hope of helping our d in our area and can't get our 19 yo anywhere else dur to legalities.
We have also been in the over-scrutinized and bashed camp and my daughter has been so brainwashed from the horrible, no good, very bad "help" that there is no way we could ever reboot with a different approach. The "family systems" therapeutic approach is alive and well, with the underlying message that once the dysfunctional family is all fixed up, and get the overcontrolling mother out of the way, the sufferer will eat and be well. Um. No. I can't believe they are still teaching this crap in modern social work and psychology, but they are.

I often fantasize about what it would have been like had my D gone straight into evidenced based care straight from the hospital, instead of the "gold standard" residential treatment that called me the food police and told me to back out and let my daughter handle her own recovery. The horrid blaming, complete undermining and downright victimization that I have endured from these supposed professionals in the last two years has filled pages of notes. I never would have believed this stuff that they have said about my formerly close and loving family had I not lived through it. Sometimes I still can't believe it and it has made me distrustful of both doctors and therapists in general. I hope I don't get sick!

I wonder when the "professionals" will stop this blaming and the whole anti-parent approach. It does not one any good and just is divisive in a family, which no family with a sick child needs. 

Thanks. I needed that vent. It bottles up sometimes!

Vent away Sadmom.  I have met so many dedicated parents through this journey and I hate that any of us have had to deal with feeling blamed at the same time that they face what can well be the most difficult situation they've ever faced.

The biological information would have also helped to convince me that the people we were working with actually knew what they were talking about.  When my kids had sinus infections, my pediatrician would draw us a diagram. There are lots of studies out there and I think professionals owe it to families to actually read them, keep up one what is going on in their own field and be able to share this information. Actual facts sure beat "blame and speculation out the a__!"
Mom of a younger outpatient
My daughter had feelings very similar to Carrie Arnold.  She was wracked with guilt and shame that she had gotten anorexia and thought that she should have been able to do something before she went too far down the rabbit hole.  Then she too felt tremendous guilt about not responding to treatment.  I didn't model good attitudes about food, exercise or body image, so i too was wracked with guilt. When the biological basis was first really taught to her at veritas a tremendous burden was lifted for her and for me. I agree that the idea of not talking about where the ED came from may have good origins and I don't think it is something that needs to be talked about a lot.  Like we say here, "Your daughter didn't choose to develop an eating dsirder and you didn't cause it." We were taught to think about my d as a genetically loaded gun.  A series of environmental factors (including the desire to lose 5 lbs and "eat healthier")may have unleashed her anorexia.  

If you don't teach the genetic biological basis, I think you confine the sufferer AND the parents to guilt and shame. 
Enjoying my 23 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!