- Patients with healthy parents who intervene earlier and with better clinical support have a better prognosis.
- The above is not a death sentence or meant as a discouragement to those who do not.
- Prognosis is not destiny.
- "Grim" is not hopeless.
- Spreading the word on antibiotics as a first line of defense is not to say that they always work, are always appropriate, may not be too late, or don't have side effects.
- This blog is by one parent for other parents about what some parents can do.
- This blog is not meant to be all things to all people, nor do I aim to be balanced or comprehensive.
- This blog is largely a rebuttal to what is commonly available, and as long as what I say here flies in the face of the norm that's what it is here for. When what I say becomes mainstream or uncontroversial I plan to retire because it will no longer be necessary.
- I speak only for myself here.
- I believe there is ALWAYS hope for full recovery.
- I do not believe there is only one way to recovery.
- Maudsley is not the only way or mode of parent involvement, or of refeeding.
- Maudsley is not appropriate or possible for many situations.
- It should still be the first thing considered and should be widely available - and isn't.
- Parents should be told about Maudsley. They still rarely are.
- I believe there are better ways and worse ways, simpler cases and more complex - and each family has unique strengths and weaknesses.
- Food IS medicine. It is not the ONLY medicine. It is the one medicine that is necessary, however, and any treatment that does not assure full nutrition to full brain health full time is bad medicine.
- I do not believe all families are good.
- Some families suck.
- I believe most families could do a better job and should.
- Most eating disorders first arise in childhood and adolescence, and those are the parents we need to reach (and Dr. O'Toole was addressing). Adult patients have almost always had a longer course of illness and their parents have less agency in their lives. Preventing adult eating disorders is the goal of early intervention.
- My intended audience is the vast majority of parents out there who are loving, competent, and ready to step up but are likely to be getting the message that they can't and shouldn't.
- Those who read this and are not my intended audience may find it annoying, repetitive, pedantic, one-sided, dogmatic, and wrong-headed. I'm sorry.
- Those parents who are getting their needs for support met, are getting evidence based advice, and are having success with their child's treatment are probably not going to find this blog because they aren't on a desperate google search for help.
- Those parents who do find it, and find it helpful, make this worth it.
- Those patients who didn't get the help they need deserve compassion, caring, and more help - not abandonment or defeatism. These are the situations I am trying in my small way to prevent before they happen.
- Those patients who respond to the message that parents need to step us as personal criticism or condemnation need to ask themselves why. Wouldn't it be better to respond by saying "I wish I'd had this support. I should have had it. I hope others will get it. I'm glad parents are being held to account and asked to get involved whenever possible."
- Child abuse, neglect, and mistreatment are unacceptable and change the landscape of treatment. Fortunately, these are rare exceptions.
- If you are currently ill please reach out to someone - if not family then therapist, nutritionist, doctor, friends, co-workers, spiritual counselors, community leaders, social workers, fellow sufferers. Build a family where you can. Let others help build your support system. You need AND DESERVE society's support and encouragement more than anyone.
- If you are currently ill I care, deeply, and do not mean to cause you harm or further your suffering. I cannot help you directly - I'm not a clinician - but I stand willing to help anyone's family or support system to find resources and information and support.
- ** Added after Marcella's comment: YOU ARE RIGHT. The word "essential" was too absolute, although I took it as emphasis and not exclusion. Parents are "of the utmost importance" and not "a foundation without which an entire system or complex whole would collapse." I meant the former and not the latter.
June 30, 2010
June 29, 2010
TIME SENSITIVE Action Alert! Ask Michelle Obama to address eating disorders!:
Stanford University Eating Disorders Program James Lock, MD, Ph.D. & C. Barr Taylor, MD
Stanford University is conducting a research study examining the effectiveness and acceptability of an online parent-training program to help prevent and/or overcome Anorexia Nervosa.Who Can Participate?
Parents of girls aged 11-16 years who have the following warning signs:* Failed to gain expected weight or have stopped growing
* Excessively concerned about body shape and weight
* Family history of an eating disorder
* Diagnosed with an eating disorder within the past six months
The Program: Parents Act Now
* 6-week online program
* Family-Based Treatment approach
* Includes education about eating disorders, coaching on how to take action to address disordered eating and exercise behaviors, and skills training
* Incorporates online quizzes, feedback, and tools to track progress
* Features video clips of eating disorder experts, parents, and teens
How Can I Participate?
June 28, 2010
Why parents and families are essential to eating disorder treatment in children
"It just doesn’t work. Without a supportive adult caretaker, the prognosis for an eating-disordered child or young adult is grim."
June 27, 2010
June 24, 2010
Learn this word, people. Use this word.
It would be a revolution in the field of eating disorders if we could all agree on the role of anosognosia in patient symptoms and we responded to it with the appropriate loving and protective care.
It isn't a "won't" it is a "can't until my brain heals."
Anosognosia is perhaps the most important vocabulary word for us all to share.
June 21, 2010
It's hard, it's not perfect, and we need to keep searching for improvements but:
'To be really honest with families, we should say: 'We only have one treatment. There is a fair amount of evidence, and it's what you should start with,'' Le Grange said. 'If clinicians are not willing to do that, then we have to agree we're just improvising.
Maudsley Approach a little-known but evidence-based treatment for anorexia
It's time to stop calling FBT/Maudsley 'controversial' and start working on improvements, but parents need to know that if they are not being offered Maudsley first then something is wrong.
Using brain scans to understand anorexia
"Heritability is a much more powerful influence than culture. Although culture and society play some role, it's actually relatively minor compared to genetics"
Sweden's Princess Victoria overcomes anorexia, marries fitness trainer
Talk about your childhood dreams, girls!
June 20, 2010
Academy For Eating Disorders Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.
I have been watching this project as it developed and was midwifed through all the necessary channels and processes and I've cheered all the way. I am deeply grateful to the committee who developed it, to the Academy for making it happen, and to all those who will be helping to distribute it. I have been looking forward to this for a long time and enthusiastically throw myself into the efforts to get this document in the hands of physicians and all eating disorder treatment team members: including parents.
This document is a significant and truly effective step forward. This is the 'page' that we all need to be on, together!
A lucky side-benefit of this craziness is that my two fathers snuck into town for the festivities and so I get to say Happy Father's Day in person for the first time in decades.
Happy Father's Day to my own dads and to my dear, wonderful husband and to all the dads out there. What a special role you play, and how I appreciate you.
June 19, 2010
Meanwhile, we need to at least try to think outside the box of just eating disorder lit, like this: Utah scientist makes breakthrough in mental illness research
Thinking outside the box, from my Salzburg PowerPoint:
And what boxes parents might look into if we don't get enough good information from our clinical teams:
*Title from a song I loved when I was a kid in California. Don' t listen if you are prone to earworms or do real estate development!
June 18, 2010
June 17, 2010
- Video blog on eating disorder conference
- The Genetic Connection In Eating Disorders
- Failure to Gain Weight May Indicate Anorexia
- Separating the Eating Disorder From the Patient
- Finding An Eating Disorder Treatment Specialist
- How Far Will I Go For Eating Disorders?
- Ideal Body Weight: What Does it Mean?
- Drug Treatments for Anorexia, Bulimia and Binge Eating Disorder
- I’m A Backstage Mom: Dancers and Eating Disorders
- How the Internet Helps Parents Understand Eating Disorders
- What Does A “Drive for Thinness” Mean With an Eating Disorder?
- “My Daughter Does Not Want to Recover From Her Eating Disorder”
- Anorexia vs. Bulimia vs. Binge Eating Disorder: Why Fight?
- Wanting to Exercise vs.”Needing” to Exercise During Eating Disorder Treatment
- Using a Stand-In to Represent Eating Disorders
- Body Image and Eating Disorders: What’s the Connection?
- What Does Everyone in the Eating Disorder World Have in Common?
- Obesity Prevention and Eating Disorder Prevention
- The Difference Between Family Therapy and Family-Based Therapy for Eating Disorders
- Your Child With an Eating Disorder Has To Gain Weight, But Do You?
- Disordered Eating and Eating Disorder: What’s the Difference?
- DSM: Does It Matter How We Diagnose Eating Disorders?
- Good Books About Eating Disorders That Are Not About Eating Disorders
- Fear of Frying: Why Parents of Anorexia and Bulimia Patients Dread Mealtime
- Was this Classic Children’s Book Written for Parents of Eating Disorder Patients?
Interested in audio posts? Visit the site: www.healthyplace.com/blogs/eatingdisorderrecovery
Please feel free to comment! (as if I could stop you)
June 16, 2010
I mentioned this to someone the other day and I could see a light bulb go off: "Until this moment I never gave it any thought."
Being in good mental health isn't just having no diagnosis. It means to me that someone is in GOOD health mentally: top form. Emotionally stable and able to respond to life's circumstances with a range of positive and negative emotions. Cognitively clear and carrying out life's expected tasks. Mentally resilient, active, and creative.
Mental illness is not just a variation on normal. It is a state of confusion, dysfunction, pain, or distress that makes life so constrained or destructive that it is unsupportable.
Between mental health and mental illness are other states. Poor mental health, short of mental illness, leaves one vulnerable to medical and psychological illness. Poor mental health leads to difficult lives and less productivity. It means children are not as well cared for and society loses the vitality of a life that could be improved.
Getting better from a mental illness should not in my opinion just be about getting rid of the diagnosis but of finding optimum HEALTH. Living fully in cognitive, emotional, and interpersonal aspects of life. Clinicians have the job of aiming for recovery from illness, but as family and caregivers our sights can be on health: robust mental health.
June 15, 2010
I think we've misunderstood the body image troubles of eating disorders as psychological because WE share the same fears and loathings. When you think of it as with one's hands it is harder to do the whole skinny models/wanting to be invisible/objectification of our bodies trope.
When the public can see these problems from different angles it helps us support our kids and deal with clinicians and understand the information we receive. Here's the take-home: our sense of our bodies are not simply based on reality. The brain has all sorts of ways of interpreting reality and we are not machines with mindless sensors gathering data. Many things intervene - including social messages and values and personal experience - and the predispositions of the brain.
We all hear that eating disorder treatment involves a multi-disciplinary team approach. The most common members: psychotherapist, physician, nutritionist, and psychiatrist. But who leads the team? And how many patients actually work with a coordinated team? How effective ARE these teams? In my observation the dream of a coordinated team is a fantasy: very few families encounter one and rarely for long.
I also worry because parents don't know that anyone can call themselves an eating disorder specialist or expert. It is, largely, a self-designation. There is no license, degree, or common training. Professionals are licensed in their field, none of which have a specialty in eating disorders.
Eating disorders occupy a rather unique position: they are considered psychiatric but the medical consequences of the behaviors bring on additional mental and physical symptoms. Physicians struggle to deal with the psychological barriers to compliance. Psychotherapists struggle to cope with the medical aspects. Nutritionists are often treated as secondary or tertiary to the team’s work yet are in charge of perhaps the most eating disorder specific symptom: the food.
One idea would be for a new specialty: a multidisciplinary eating disorder specialist. This would be a specialized field within one of the allied professions treating eating disorders. This would allow for professional licensing standards, specialized training, and accountability.
Another idea would be for specific training and certification to exist in every field involved with ED care. Both these options would take time to create and disseminate.
There’s another option, however, that would be possible much sooner: shared protocols. If protocols for medical, psychiatric, nutritional, and psycho-therapeutic elements of care were created and adopted across fields and countries we could improve treatment and strengthen the impact of all clinicians. This would benefit patients and their caregivers who would also have access to these protocols.
I'm interested in thoughts on this out there.
June 14, 2010
My week in Salzburg left me with many interesting memories and tasks and relationships for the coming months. It was the culmination of many things and exceeded my hopes for F.E.A.S.T. and personally as well.
But news on the last day of a fellow advocate’s daughter dying of her eating disorder frames everything quite differently. I am deeply sad today and my only comfort in this distress is that so many of us who know the family were together hearing the news. It is not shock I felt – one cannot be shocked by this wicked illness and what it can and does inflict on patients and their families. Not shock: profound sadness and empathy and, yes, rage. Rage at the waste of this dear and loved person, the ruin of year upon year of trying, of failed interventions, at laws that don’t work and ideas that don’t either. At parents scrambling for help, for any hope, for clarity, for coherence. Rage – outrage at the illness. Rage at this horrible, horrible illness.
But it isn’t about me, or my anger. It is about this family who are now grieving. It is about this young woman’s life stolen for many years and now for good. It is about all of us doing a better damn job to honor this woman and her family – now and for a long time.
I am glad I was given this news by a mutual friend – herself deeply affected. I was glad we were with two people who because of their circumstances understood this pain and the release from pain at a level I cannot presume to know. I am glad we had the sky of Salzburg to cry under, many colleagues who had also been touched by this family, and a common cause to focus on. I’m even glad that we had work to do – right then – to prove the path we share on this.
I’m glad of the human ability to weep and laugh, at the same time, of June’s pocketbook, Amanda’s sock, red dresses, a cuppa in crisis, of the candle I lit before knowing who for, and I’m glad of J – celebrate E – and the second fork.
June 13, 2010
Whether or not sports are healthy for most, I can certainly say that we have underestimated the invisible damage to some young athletes. We know now that concussions are a far greater risk than formerly understood.
Of course we have to worry about overexercise and undernourishment triggering or exacerbating eating disorders, but here is another concern: the dangers of delaying puberty through "inadequate energy balance."
body composition and the delay in puberty
June 12, 2010
Student Dies Unexpectedly
"The ... community is mourning the loss of one of its own. 16-year-old (K) died suddenly Sunday, after collapsing near her home following a short run. She was life-flighted to ... where doctors could not revive her. ... said in a statement Monday - (K) died of complications from severe anorexia. Her death comes just two days after she placed 6th at the state track meet in (her sport). The sophomore was a two-time state qualifier in track who also participated in volleyball and cheerleading. Doctors say anorexia is an under-recognized disease that can be treated.
...Two days before she collapsed while running, she had been healthy and competing at the state track meet ...in front of dozens of fans."
For those of us who know a lot about eating disorders we read a great deal between the lines here that the public does not see.
The ability, in fact the insistence, to remain physically active despite enormously compromised organs is a common symptom of this mental illness.
We must do a better job of recognizing the signs of compulsive exercise, stop waiting for people to "look" unhealthy, and compassionately stop eating disorder patients from carrying out their compulsions.
Regardless of her appearance this young woman was not "healthy" two days before - anorexia doesn't happen in two days. Coaches, parents, and sports fans need to do our best to prevent these tragedies by making sure athletic is not confused with health and that mental health be part of the picture of fitness.
June 11, 2010
When I say "dieting is unhealthy" people respond with "but fat is bad! and irresponsible! and unhealthy!"
The opposite of dieting is not obesity. The opposite of dieting is eating what works for your health. There are alternatives to restrictive punitive eating that are not donuts on the couch. Why is this so shocking?
If you stop dieting you will not automatically begin gaining weight until you are immobile, unless something is very wrong with your metabolism or mental health. If there is something wrong with your metabolism or mental health then dieting isn't a solution - it is a ANOTHER problem.
Humans aren't meant to spend their lives counting fat grams and being terrified of food. We are meant to prepare and eat meals communally and with gratitude. We are meant to eat according to our needs and not a clothing size.
Will we all be size 8s if we stop dieting? No. Why is that a problem?
Other thoughts to consider:
"We treat those who lose massive amounts of weight like rock stars"
How Childhood-Obesity Fight Damages Self-Esteem
If Carrying an Extra 10 Pounds Might Not Hurt then why are we still using the word "extra?"
June 10, 2010
We tend to assume that the pain and anxiety and distress is about gaining weight, but I really wonder how much that is true and how much of it is what we from the outside assume and even sympathize about.
Re-feeding has several effects and weight gain is only one of them. Eating after malnourishment brings on medical issues of its own: the stomach empties slowly, food passes slowly through the system, metabolism is slow and then speeds up to unnatural rates, gas, constipation, bloating... not fun. But necessary.
But the symptom that we talk about least is the fact that undereating is anxiolytic for some people. It makes anxiety and other emotions go numb. If you are an anxious person - and most eating disorder patients were, before they became ill - undereating is like anti-anxiety medicine. Eating normally again brings back the anxiety - and more. If you had inadequate coping skills before, imagine trying to re-enter a world of feelings including those around the damage your eating disorder has done to your life and your relationships.
Beginning to eat again would seem like a relief, but it is often the hardest part.
June 9, 2010
Important vocabulary words:
Set shifting: the ability to switch from one idea or situation to another.
Central coherence: the ability to see the big picture and let go of distracting details.
Important research on these important words:
June 8, 2010
To me this is like swimming. You are either above the water line or not. It isn't a matter of how close you are to the surface it is about whether you get out enough to breathe.
We have too high a tolerance for low weights. Or, too low a measurement for high weights. Or something. In any case improvement isn't enough: full weight restoration is necessary and since no science has come up with a foolproof method we need to do a better job of getting people all the way out of the pool, dried off, and rested before we even talk about the kiddie pool!
June 7, 2010
My husband is a dog person. He told me something about dogs that helped me understand people: learning is "ridiculously easy." It's the unlearning that is hard.
Why it is hard to teach old dogs new tricks
Training older dogs can take 3-5 times longer than younger dogs and takes different methods. It is not that older dogs are stupid or can’t learn or are less tractable: they often learn more quickly. The problem is the other stuff in their head. Anyone who has had to train an animal knows this, my husband tells me.
He told me a story: "As a bird hunter we train to "heel" on our left, but this guy always hunted with two dogs. He trained one on the left and one on the right. That was fine and the two dogs thought that was the natural order. But imagine he’d gotten the 2nd dog as an adult, trained as usual on the left. He might have learned to take his place on the right but it would never have been completely natural. He would have to be reminded repeatedly."
This resonates with me especially as I've gotten older. I learn new things readily, but only if I didn't know anything about it before!
Of course, this reminds me of the cognitive restructuring of psychotherapy for eating disorders or for anything. Eating is so fraught with rules and habits: just the shopping and the cooking not to mention the choosing of what and where and how much. Having learned them, especially under duress, it must be a great deal of work to unlearn even if you've learned new structures and rules!
June 6, 2010
A wonderful clarification of why genetic research matters and how exciting an era we are experiencing. Change is happening and rapidly - and lives are going to be improved, and soon, I believe.
June 5, 2010
Mothers everywhere are now googling "estradiol" like crazy!
P.S. Despite the Gee-Whiz Shocker headlines this line of research is neither new nor shocking. These researchers and many others have been exploring the role of hormones and the developmental process for a while and making great strides.
It is interesting to me that the headlines and stories always start with the same premise: that eating disorders are a conscious thought process. For years we've had these "contrary to what was formerly believed" lead-ins talking about biology and genetics and nutrition and yet the central paradigm doesn't shift. Some day the headlines will start with different assumptions!
We often confuse "trust" and "independence" when it comes to mental illness. We think it is "mistrust" and "controlling" to be aware and speaking openly about these issues. I look forward to a time when it is as normal and loving to observe signs of mental health as it is to put one's hand to the forehead to check temperature or to notice someone wheezing. No guilt, no blame, no waiting!
Friends, too, need a place in the picture. I was glad to see this - Mental health advocates, patients urge bringing friends on board during care and hope to see more!
One half of those who die from anorexia are from suicide. We cannot hide from this fact and must do a better job of understanding it.
"Two potential routes to suicidal behavior in AN appear to have been identified: one route through repetitive experience with provocative behaviors for ANBP, and a second for exposure to pain through the starvation of restricting in ANR."
June 4, 2010
25% of overweight Americans who have tried to lose weight suffer from binge eating disorder
Whether this means that BED is triggered by dieting (I'm guessing it is, just like anorexia and bulimia), or whether a significant number of people have high weights due to a mental illness driving their behaviors (sound familiar?) is a question to ponder.
Binge eating disorder is a serious condition and not a problem to be solved by weight loss programs or public shame or amateur advice.
June 3, 2010
The Plate Drive messages are starting to come in, and they are pretty moving, too, like: "Mom and Dad, Thanks for loving me back to health." and "Congrats to our daughter on her Bat Mitzvah and for overcoming ED! We love you!"
Add your plate! Thank a therapist, honor a patient, show appreciation for a school nurse who helped - speak up. Only $1 (US) a word!
June 2, 2010
“Why do professionals ignore clear evidence and cling to old ideas that weren't that effective? Because they are people and people resist change, even in the face of clear evidence to the contrary--and especially when they have invested their life's work in doing things this way.
There are parallels to what we are doing in other areas. Our pastor (Paul Freese) opened a recent sermon with a question: "What causes ulcers?" Congregation: "Stress!" Pastor: "And how do you cure ulcers?" Congregation: "Reduce stress!" "Reduce stomach acid!"
He continued: "It's been 27 years--a generation--since two Australian doctors accidentally discovered that it's actually caused by bacteria," and went on to tell the story of Drs. Barry Marshall and Robin Warren, who first isolated H. pylori (great article). For two years, no one took them seriously. In frustration, Dr. Marshall swallowed a petri dish of H. pylori, got sick, took antibiotics, got well. Finally they got published. These drs had a whole new paradigm for ulcer etiology and treatment--and faced a lot of resistance. Even with proof, no one wanted to change. And this is such a clear-cut, replicable scientific phenomenon!!
While the pharmaceutical industry resisted hugely at first (who doesn't love a lifetime prescription for one of their little moneymakers like Tagamet or Zantac?), they also held the key to the cure. And they have armies of drug reps that talk to all the drs, everywhere. Having a profit motive makes it much easier to change the status quo.
Unfortunately for EDs, we don't have a magic pill. Don't have armies of drug reps fanning out, spreading the word, leaving samples, advertising about their great product, posting warning signs.
The point: A generation! 27 years! And the common wisdom has still not caught up with proven science. At least drs are more clued in about prescribing antibiotics--people are being treated.
I don't mean for this to be discouraging. Just to underline human nature. I think the professionals who cling to Old School ideas are well-meaning, caring people, and to ask them to reconsider ED etiology and their treatment model means also asking them to live with the idea that they have actually done evil--that they have harmed their clients and their clients' families. That would be hard to live with, even if it were unintentional.
We need to focus on educating existing professionals, for sure, but I think we especially need to focus on YOUNG professionals--we need to make sure that the doctors and therapists who are being educated now are getting the right information. What can we do to get this information into the hands of the professionals who are educating the professionals?
Way more than two cents...sorry.”
Go check it out. They have a Facebook page and a growing community. They are also doing some creative funding and looking for public support.
We need more attention to BDD at all levels - artistic and scientific!
I care. Can I help? You are in such despair - could you let someone in your life know? Would you let me talk with someone in your life? I care and so does everyone reading this. You CAN feel better. You can live free of those intense emotions: LIVE. It is worth it. YOU are worth it.
June 1, 2010
Brain volume found to change following weight gain in adults with anorexia
What continues to amaze me is how anyone believes food is optional. People have come to think of food as something you decorate with, or express yourself by, or that you can choose your appetite as a moral measure of worth.
Eating too little - even a little too little - leaves your body gasping. It has to slow down to compensate, it is primed to jump on food the next time it makes itself available, it robs non-essential functions like reproduction and THINKING ABOUT ANYTHING ELSE.
You can't choose how many calories, how much of each vitamin, grams of fat that your brain needs. Your brain is part of the body and it isn't going to be less damaged than your other tissues - in fact, it is damaged more.
Imagine the brain of a growing adolescent being eroded and failing to develop.
Did we really need proof of this? Or is this what it will take to convince families and doctors and therapists to take malnourishment seriously? Not just after weight has been lost, but for every hour spent at less than optimal health. Malnourishment is brain damage.
"well organized, offers a lot of information, and best of all, it's not full of the sugar coated, head ache inducing, rainbows and unicorns fluff that most other ED sites are."
Thank you, thank you! You get it! That is the best review ever!