February 29, 2008

a really primitive place

Susan Ringwood of b-eat in the UK understands:

“Parents find that eating disorders hit them in a really primitive place. Feeding your children is a fundamental thing and something you've done since they were born, then suddenly you have to watch them struggle so deeply with food.“

All families blame themselves but they have to know that they are not failing - they're being failed by the system.”

February 28, 2008

Plausibility

Dr. Cynthia Bulik was on the bill at yesterday's Congressional Briefing organized by the Eating Disorders Coalition.

Yesterday Bulik gave a 20-minute talk that, I believe, should be required material for everyone involved with the eating disorders world. Some people will cheer. Others will be confused, having never heard any of what is clearly established science. Some, frankly, will be angry; but it is time for a meaningful engagement on all this, and then an end to debate. It is time for consensus among those responsible for the lives of patients.

In the past, Bulik told Congressional staff, eating disorders were wrongly blamed on families, on the individual, or on society. These causes seemed plausible. But "plausibility is just too convenient."

"These are not disorders of choice."

Genetic relatives of eating disorder patients have a 7-12 times greater risk of also having an eating disorder.

"The major contributor is genetics. Not family environment, not choice."

Why does this matter?
  • Because it destigmatizes the illness
  • Because it means we can, and should, mention eating disorders whenever we talk about other mental illness
  • Because it empowers parents and sufferers
  • Because this knowledge improves treatment and insurance coverage
  • Because it underscores the seriousness of the illness
  • Because genetics research needs research dollars.
Bulik has identified enough genetic samples "already in the freezer" for genome-wide eating disorder studies that could revolutionize the way we understand AND TREAT eating disorders.

"We are in the middle of a landmark year in genetics," Bulik says. "Funding is the only obstacle."

February 25, 2008

a letter to my daughter's ex

Did you know that Jenni Schaefer, the author of "Life Without Ed," has a blog?

Jenni recently asked me to: write A Mom’s Letter to Ed

February 24, 2008

Heroic cooking

Before I log off to finish cooking dinner, may I quote Michael Pollan:

"I think we've been sold this bill of goods that cooking is this heroic thing that only happens on special occasions."

(and yes, I do worry that some of what Pollan teaches will be used to feed eating disordered moralism about 'good' and 'bad' foods, but really - what doesn't?)

February 23, 2008

outsourcing

Mimi, a very smart mother on the "Around the Dinner Table" forum, posted an anecdote that is particularly appropriate for parents taking on home-based care for an eating disordered child.

Moving Mountains

February 21, 2008

February 19, 2008

fear of food

A clinician friend emailed me yesterday with concern about the impact of the most recent meat recall on eating disorder patients and their families.

One of the classic early signs of an eating disorder is a false vegetarianism -- where foods are cut out but no compensatory foods are added in. It is often followed by more restriction, always accompanied by ethical concern.

During eating disorder recovery it is very important to return to the normal eating patterns and preferences of life before the illness: to rejoin the culture of the family and society around food. That goal is made harder if the society in which we live is irrational and fear-based about eating.

But we still have the power, as loving family, to create an environment around the dinner table of pleasure, nourishment, and confidence.

February 18, 2008

"I was very upset with them"

The new Miss America has dedicated her year in the spotlight to eating disorder awareness. Naturally, my first question was: what role did her parents play in her recovery?

“I was very upset with them. I was completely in denial and didn’t think I had a problem,” she said. “I thought I was just dieting."

Getting treatment, she says, “wasn’t really my choice,” adding that her parents, two “health professionals,” forced her to see a doctor.

One more reminder that parents must step up and insist on care, the best care they can find, and not wait for the patient to ask - or even agree.

February 17, 2008

Climbing toward recovery


We often use the analogy of climbing a steep mountain for eating disorder recovery. Dr. Lock of Stanford refers to a sand hill.



But did you know there is a literal Anorexia to climb, and then, should you still have the energy, you can scale Nervosa.

February 15, 2008

$2.33 for your child. Don't spend it all in one place

Did you know that the total US government spending on eating disorder research is $21 million? By way of comparison, schizophrenia, which effects about the same number of people, merits $300 million.

Next time you wonder why each clinician you consult gives you a different prescription, remember how little real research there is for them to draw on.

Want to get involved?

The Eating Disorders Coalition is the leader in changing ED legislation and their work has truly had an impact on research, insurance, and public knowledge of these diseases. They do it on a tiny budget and no full-time staff.

On February 27, the EDC will hold a Congressional Briefing and sponsor a talk at NIH entitled "Fighting Stigma with Science." Speakers include Aimee Liu, Cynthia Bulik, and Ron George. I am attending both events and recommend anyone who can be there to come on out. If you want Congress and the NIH to know eating disorders matter, and you want EDC to know you support the work they are doing for all of us: come on out!

February 14, 2008

super skinny me

At the risk of sounding like a groupie for FBT/Maudsley clinicians, I point you to the link below to a snippet of NPR's Talk of the Nation. Dr. Lock of Stanford does play a supporting role. The other reason is that the journalist being interviewed about her starvation experiment does a great job of articulating the starvation experience and how it intersects with her social and personal life. She's done us the public service of updating the Minnesota Starvation Study for females in 2008.

For the record, I am violently against what she did - and how it could be approved as entertainment. I wonder if the cameras would have rolled if what she was doing was smoking crack or being waterboarded?

February 13, 2008

Health at every size

Sooner or later, most of the parents I know whose children have had an eating disorder end up having to face the question of their own body.

"What about my weight? What about overeating? Should I diet? What about the obesity epidemic?"

My suggestion is to listen to this radio interview by Doris Smeltzer, who lost her daughter to bulimia, of Dr. Deb Burgard.

February 12, 2008

But... she really wants to go to college

Eating disorders, among their other cruel tricks, love to arrive just in time for SATs. But ED is looking forward to college even more than your child. An environment that expects independence, a lack of adults, no accountability, erratic routines, alcohol, sleeplessness, and STRESS. ED loves college.

We think our child will be the one with the quick recovery, our child's motivation to be at school will keep them well, that we'll be able to keep tabs from a distance. Maybe. But we also have to consider other scenarios.

Despite the very sincere Orientation seminars about mental health supports - I've yet to hear of a school that will really look out for a student who is not seeking help. And eating disorder patients are usually reluctant - even adamantly against - seeking help. Even Cornell's recently publicized program, innovative as it is, falls short of what most parents of recently symptomatic ED patients would like to see.

Colleges do not, and can not, be responsible for monitoring or protecting students with eating disorders. In fact, my experience is that schools actively enable ED behaviors and actively discourage family support.

If you have any doubts, ask yourself why you believe it is worth the risk. Ask yourself why a semester or a year more at home is a bad thing.

My excuses were: She won't be able to handle the disappointment. She'll hate us. She's worked so hard and deserves it. I'm probably just overprotective. What would we tell people. Her friends will be ahead of her. She'll hate us. I don't want her to think we don't have faith in her...

I was wrong. She could have used more time, and her school was awful at working with her - and especially us - on support or monitoring. At one point she was rooming with an actively anorexic student and the school thought the solution was for my daughter to move if this upset her.

If you have any doubts, resist the pressure - from your child and from others and especially from your own optimism - to continue with college plans. Life must be around recovery, and not the other way around. ED loves deadlines, cut-off dates, deposits, prior commitments, and "life long dreams."

(p.s. Our daughter is now a happy, fully healthy college student. Taking time off after the first year was a lifesaver. Delaying would have been better.)

February 11, 2008

"medically stable does not necessarily mean an individual is not malnourished"

I asked Carolyn Hodges, director of the Sol Stone Center, her thoughts on hair analysis to diagnose and monitor eating disorders, and specifically on this article about the research:

Researchers discover new way to diagnose anorexia, bulimia

Hodges found the paper left her "frustrated as a clinician."

"The body compensates in so many different ways. There is still so little we know about why some patients wind up severely malnourished and others with little effect despite the same behaviors."

In response to the newspaper article, Hodges counters that there are already are tools that could be used to track nutrition.

"Metabolic testing combined with substrate utilization can show how a body responds to the underfed state. It is understood that when a body is underfed, it often becomes hypometabolic, but how does that body compensate and what body stores does it use to meet its needs? Bodies that use a significant amount of their protein stores are at higher risk for malnutrition. Bodies that use more fat stores will become much thinner, but not as compromised physically."

Hodges does see a value in hair analysis.

"Hair is one of the finest measures of nutritional status...Too often physicians have only the patient's weight and bloodwork to determine if a patient is medically stable. Medically stable does not necessarily mean an individual isn't malnourished. The body compensates in many ways and blood work changes often only occur in the severely malnourished."

February 10, 2008

Dieting: gateway drug to madness

Possibly the most important fact for parents to know when coping with a child's eating disorder:

"symptoms once thought to be primary features of anorexia nervosa are actually symptoms of starvation"

"dramatic increase in food preoccupations...declines in interest in sex and activity...dawdle for almost two hours after a meal which previously they would have consumed in a matter of minutes...Cookbooks, menus, and information bulletins on food production became intensely interesting ...hoarding even extended to non-food-related items...caught between conflicting desires to gulp their food down ravenously and consume it slowly...weird and distasteful concoctions...planning as to how they would handle their day's allotment of food...consumption of coffee and tea increased...gum chewing became excessive ...binge eating followed by self-reproach...self-deprecatory, expressing disgust and self-criticism...increased hunger immediately following a large meal...Depression...Mood swings ...Irritability and frequent outbursts of anger...anxiety ..."

Think this is only for people living on 500 calories a day? No. All it takes is a diet: "precisely the level of caloric deficit used to define "conservative" treatments for obesity "

February 9, 2008

Long-held, obvious-seeming assumptions

Why, despite the evidence, are patients still being held responsible for causing - and stopping - their own illness? Why, despite the research, are loved ones still automatically on probation? Why, despite clear evidence of the dangers, are patients still receiving treatment that does not put nutritional rehabilitation first?

Why?

"In any community of scientists, Kuhn states, there are some individuals who are bolder than most. These scientists, judging that a crisis exists, embark on what Thomas Kuhn calls revolutionary science, exploring alternatives to long-held, obvious-seeming assumptions. Occasionally this generates a rival to the established framework of thought. The new candidate paradigm will appear to be accompanied by numerous anomalies, partly because it is still so new and incomplete. The majority of the scientific community will oppose any conceptual change, and, Kuhn emphasizes, so they should."

I believe we are in the midst of a revolutionary change in thought where the general assumptions about eating disorders will shift dramatically. But what depresses me is that we appear to be only in the earliest phase:

"in which there is no consensus on any particular theory, though the research being carried out can be considered scientific in nature. This phase is characterized by several incompatible and incomplete theories."

February 8, 2008

no radio, no red things, and a cold shower

Colonoscopy prep. I expected hunger, and weakness, and headache. And got them.

And, granted, I'm watching myself rather closely today as I close in on 36 hours without eating.

I didn't expect this: as I reached for the radio this morning I flinched. I love radio, I drive everyone crazy by leaving it on in every room of the house. I have XM and FM and listen online and buy antique radios. But after a day of resisting the constant urge to eat something it generalized to the radio.

"Can't have that." my brain said.

It generalized to red things. Because even though I was permitted drinks yesterday, not red drinks. So the color red bothered me. I kept having this anxiety that I'd slipped somehow and eaten or drank something red and the colonoscopy would be cancelled and I'd have to start over.

Then the shower. It was too mild and I reached to turn the heat up, and flinched. I wanted it, so it made me anxious.

How subtle the way anxiety becomes attached to pleasures. Deny hunger, and it generalizes to types of hunger, to other sensations, even to sound.

In 90 minutes I'll be in twilight sleep while my colon is stared at. It's routine, and something healthy people do.

But when I wake up, I want a burger, a red drink, a hot shower, and the radio on, LOUD.

P.S. I'm home, had a cheeseburger and cranberry juice (and a $4 coffee), and all is well with the world...

February 7, 2008

Pre Traumatic Stress Disorder

Today I will not eat. Because tomorrow I will have my first colonoscopy.

I do not remember, in 46 years, having skipped a meal. I have never fasted. And since my daughter's anorexia diagnosis in 2002, I have been a pretty firm supporter of three squares and two snacks.

For the past week I have had odd rules about eating imposed on me: for 7 days eat no X, stop eating Y for 5 days prior, skip Z 3 days before. And today it is drinking only, and only certain colors.

Yes, it is ironic. I am going through the motions of anorexia. And how do I feel?

Really scared. Panicked, almost. My associations, emotionally, with restricting food and rule-based eating are traumatic and aversive. I actually almost bailed on the whole thing last night in a moment of fear.

But in bizarre Maudsley style, I've got my team. Hubby is doling out the love and my son is prepared with the kisses. One day. And tomorrow, you'll be interested to hear, my recovered daughter is coming home from college for the weekend -- to help re-feed me.

February 6, 2008

I Need Some Heroes

I believe parent activism is the best hope for improvement of eating disorder treatment. I believe parent voices have the potential to change the treatment world, the media, the insurance industry, research direction, and public policy. I also believe it is time for a movement by parents, for parents, to let no mother or father feel alone.

But the truth is, there is no parent movement. There are very few parent activists. This is understandable -- after all, until recently we were told it was not only not our business, we thought we caused eating disorders!

For the years since my daughter became ill, I've put my time and money and reputation toward bringing families together and speaking up for parents. But alone, my voice is weak. Individuals don't have the authority of groups.

I recently took an informal poll of readers of the "Around The Dinner Table" Forum. Over a dozen people said they were fired up and willing to get involved at a leadership level. Most of the rest offered to help. The poll revealed a great desire for more ways to connect with other parents, and for ways to educate the public and clinicians.

I also recently asked for donations to support the Forum. I received enough to pay for the past three years of website fees, and one check that was so generous I sent it back -- promising to do what I'm doing now: create something worth that kind of parent support.

Parents want more help, and want to offer more help. We need a way to connect parents to each other, and to resources.

I am ready to devote myself full-time to this, but I need a team of Directors with an interest in guiding and monitoring the group.

I'm looking for directors with administrative, legal, and financial knowledge and creativity. I'm looking for parents who are beyond the intense caregiving and ready to reach back to families earlier in the process.

Later on, we'll be looking for volunteers to carry out the mission of the group.

To get involved, write to me at Laura@eatingwithyouranorexic.com so I can send you further information. Let me know what you want to offer.

February 4, 2008

Get help by DVD

I haven't participated in this research (although I believe Marcella has?) but I'm interested to hear what parents think about this:

DVD training package for carers

Are books and other media a supplement to professional aid, or could they stand alone?

February 3, 2008

"a little annoying but finished very strong"

"I just finished Eating with your Anorexic.
It was a little annoying but finished very strong."

Makes a smashing epitaph, really.

February 2, 2008

It's worth it

A parent on the "Around the Dinner Table" online forum writes: It's worth it.

For the parents who are in the thick of the fight, and think you can't last another day of being on constant guard, in a constant struggle of doing the harder right over the easier wrong. I have been where you are now and it does get better, and it is worth every sleepless night, every night I slept on the couch so d could sleep in the room with w, and I could monitor d if she got up
in the middle of the night for any reason, every argument over food, every meal that was gulped, every cut of the eyes, every "I hate You". They are all worth the struggle to save your child or loved one!

Remember you are fighting the disease not your child or loved one."

February 1, 2008

MySpace, Facebook Pages and Insurance

My level of disgust at this really can't be described:

MySpace, Facebook Pages Called Key to Dispute Over Insurance Coverage for Eating Disorders

This is an cynical and reprehensible attempt to distract from the real issues and to intimidate the plaintiffs.

This is analogous to insurance companies not treating heart attacks as biological illness if they can prove that a patient had a fight with his or her spouse right before the attack. Like saying Alzheimer's patients are not paranoid because some caregivers really do steal silverware.

It doesn't matter what is in these online accounts. No big dark secrets of these families will offer insight into the cause of eating disorders. It is a brain disease, not a choice, not a reaction - regardless of what happened in the patient's life. Patients don't necessarily know what causes their illness.

Ask scientists. Go to PubMed. Don't poke around in MySpace seeking answers.

We desperately need clarity in the eating disorder world about cause. We need everyone in the eating disorder community to stand together for full insurance parity for eating disorders. People die for lack of treatment. People's lives are destroyed for lack of treatment. THIS MATTERS.

"Don't you miss pneumonia?"

I have been an admirer of the Kartini Clinic in Portland, Oregon, for some time. Kartini takes a no-nonsense, full nutrition, Freud-free attitude toward eating disorder treatment.

Unsparing toward the medical ravages of EDs, Kartini doesn't just invite families -- they REQUIRE families to be part of the treatment.

Dr. Julie O'Toole, founder and director of Kartini's multidisciplinary team, comes at the issue as an adolescent medicine doctor - and has taken some heat for her view of EDs as brain illness. Years before it became acceptable to say so, O'Toole was speaking up to say this disease is noone's fault and noone's choice.

O'Toole now has a blog, and in the first three entries she covers a lot of ground, including an answer to the question of "Why we do research at Kartini Clinic, which includes something a fellow physician asked her: "Don’t you miss pneumonia?"