October 31, 2007

Scary! It's not just us

I often grouse about the haphazard, medically questionable, and even damaging care that families get when seeking eating disorder treatment for their children.

But since in the U.S. children receive "appropriate outpatient medical care" only 47% of the time for routine issues, I guess I need to lower my standards.

And recent "discovery" that child cold medicines have no proof they work and have caused harm reminds me that most treatments for eating disorders are also untested and potentially harmful.

Scary stuff. Scarier, even, than the prospect of Halloween candy for kids in the middle of an eating disorder!

October 28, 2007

He said she said he said she

I've noticed that mothers and fathers often have conflict about how to deal with crisis. And an eating disordered child is certainly a crisis. I know my husband and I didn't react the same way. I confess that sometimes I thought he "should" do what I do, and I suspect the feeling was mutual.

Here's some confirmation of the concept that it isn't "my way" or "your way" but maybe we need both: "Parental Variance Can Help Children" has this interesting sentiment regarding preschoolers (analogous to a teenager during ED recovery, I think):

"When one parent provided little support in response to a child's anger or anxiety and the other parent provided a lot," the child fared better. "In contrast, when both parents provided a lot of support, the child had less insight..."

Note that neither parent being sympathetic isn't an option.

October 26, 2007

Stop treating eating disorders

I have a favor to ask clinicians who treat eating disorders: please stop.

If you aren't reading and studying and training in evidence-based approaches, stop.

If you don't specialize in eating disorders, stop.

If you treat eating disorder patients without being part of a team, stop.

If you "mean well," stop.

If you don't think things have changed in the past 5 years in understanding this illness, stop.

If you often find parents of your patients are overemotional, over involved, in denial, and a nuisance, stop.

If you identify more with the ill child than the well parents, stop.

If none of the parents of your patients are well, stop.

If you don't know your patients' parents well enough to know if they are well, stop.

This is a life threatening, family-destroying, potentially disabling, and complex illness. If you are not sure you are the ideal person to treat our children: don't.

October 25, 2007

race

I am of mixed race. My birth certificate says that my father is "White" and my mother is "Negro," terminology that gives you some idea how old I am.

Naturally, I am interested in research into the demographics of eating disorders.

Many "minority" families don't think of eating disorders as an issue to worry about, and sadly many clinicians buy into that by failing to diagnose eating disorders because people don't meet the profile of the European American middle class female that ends up in most media reports. I know a family whose African American child showed up at an ER after fainting, dehydrated and underweight, unwilling even to take IV fluids for fear of their caloric content but the doc on call never mentioning eating disorders.

I've been pleased to see more attention to research and record-keeping for all people, like this: Prevalence of eating disorders among blacks in the national survey of American life.'

This is everyone's issue.

October 24, 2007

"Will you make me eat?"

The brochure starts with the question:

"Will you make me eat?"

The answer:

"...although one of the program goals is to develop healthy eating habits, food is not forced."

Staggering.

Food, at an eating disorder clinic, is optional.

October 23, 2007

It doesn't work, but it's what we've always done

A wise mother who only recently fell down the rabbit hole of ED world with us and found our online support forum states the case so clearly I just have to share it:

"All of the clinicians we've been involved with have seen ED many times before. But it's like they have this weird recipe for ED treatment:

  • Muck around with the diagnosis for at least one week (longer if necessary).
  • Refer to Nutrionist who will draw up inadequate feeding plan.
  • Refer to Therapist who will apply outdated, ineffective methods to the problem.
  • Watch patient decline.
  • Hospitalize.
  • Repeat steps 2-5 as required.
  • Home refeeding as last resort.

She goes on to say: "I keep reading in the literature that AN treatment takes years. I think it's only because the most ineffective things are done first, and they'll keep doing them ad nauseum!

"Imagine if your doctor said "I'm sorry, your d/s has cancer. First we're going to try this really old chemotherapy for a few months. It doesn't work, but it's what we've always done. Next, we're going to try other treatments that are ineffectual, while the tumor gets larger. Finally, we'll use another new chemotherapy that's really promising. It works best on stage 1 cancers, but we wait until the cancer's a stage 3 or 4 before we use it."

Thank you, IrishUp, for saying it like it is.

October 20, 2007

October 17, 2007

Parents want $150K, I think they need better clinicians

Does this family need to raise $150,000 to send their nine-year old daughter to a residential treatment center?

Maybe they need to get a second opinion from a clinician who doesn't say "you can't just make them eat."

Zero to 60. This family seems only to have been given two speeds: let her starve at home because she has a "coping" problem, or separate her from her family for months to be magically cured.

Watch this video, then decide: are you going to send them a check or send them to a Family-Based Maudsley therapist or treatment center. This family is surely going to think I'm a quack, but if they are contacted by enough people they may be able to rise above the Sales Department at the treatment center and seek evidence-based care. It is worth a try.

Vocabulary words for parents

These are my favorite vocabulary words for parents with eating disordered children:
  • Alexithymia: an inability to describe or understand one's own emotions
  • Anosognosic: unaware of and lacking insight into one's own illness
  • Egosyntonic: symptoms of the illness are in harmony with or acceptable to the ill person
One of the hardest lessons for parents when a child becomes eating disordered is learning that they simply experience the world differently during the illness. They can't describe their own feelings, no matter how many times you ask "how do you feel." They think they are not ill, or not as ill as we know they are. And even the symptoms they have, they are not distressed by. They are not being silly, immature, recalcitrant, or stubborn: they really do feel - and not feel - this way.

Until they are well - and that takes nutrition, love, and time - we have to do the thinking for them.

October 16, 2007

NBC news story showing a family doing Maudsley

I really like this news video of a family participating in Family-Based Maudsley treatment at the University of Chicago:

http: / / video.nbc5.com/ player/ ? id= 165309

Normal, loving family + a skilled clinician using evidence-based practices = a safe landing from a awful disease.

Fly, drive, walk, or crawl to get this kind of support. Run from clinicians who cannot or will not support your whole family to restore your child's health and well-being.

October 14, 2007

PANDAS are cute. But not when they trigger an eating disorder

Although a few years ago people would have looked at you as if you were a large Asian herbivore if you suggested it, it is increasingly accepted that some cases of anorexia nervosa are triggered by a strep infection: pediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS).

This is well-established in Obsessive Compulsive Disorder, but only recently has it been much discussed in eating disorder circles.

And although I have met parents who have pursued treatment based on this, none but the most savvy or lucky parents will be able to even get the kind of specific testing necessary to rule PANDAS out. One mother I know, married to a doctor and well-connected, talked her skeptical pediatrician into testing her daughter only after lots of pressure. The result was positive and antibiotic treatment successful. (No short cut through the difficult refeeding period, however. Starved bodies are starved bodies.)

October 13, 2007

Starving for information

If, as I do, you believe eating disorders are brain disorders that rob a patient of rational thought regarding food and eating, then this article will break your heart in ways the writer did not intend.

"Lancashire mum dies of anorexia."

This mother of three did not die of anorexia. It sounds as if she died of ignorance around her about the illness. If the article's reporting is to be believed, the family lost a "loving, kind and selfless mum" without being given even basic knowledge of the disease.

"I never found out the reason why Maxine was anorexic and I don't think the people who were looking after her in Bury could get to the bottom of it."

The persistent belief that a patient must find some reason behind the eating disorder in order to recover is a relic, and a dangerous one. Families need education in the dynamics of eating disorders and malnutrition. Patients need recently-trained clinicians who will relieve them of decisions they are biologically unable to make. This woman did not fail; the world failed her.

October 12, 2007

Birth control pills in anorexia treatment

In a good example of new scientific knowledge not making it to the people who need it, many physicians are still prescribing birth control pills to anorexics to "jump start" their menstrual cycles.

This is not a good idea. At best, hormone pills mask health status. At worst, it damages bone further.

Having a period is not, sadly, a guarantee of medical recovery either. Many bulimics and a good proportion of seriously ill anorexics have regular menstrual cycles.

Real recovery means full nutrition. There are no short cuts through that basic fact.

October 11, 2007

After NEDA

In an odd twist, after the National Eating Disorders Association conference in San Diego last week I drove up to Los Angeles to help out with my grandmother. She is - after decades of happily living alone, living in in a convalescent home.

She's there because she had a cold and got disorganized and didn't eat for a few days. Her neighbor found this fiesty, independent, 92 year old widow disoriented and unwell.

At the convalescent home, my grandma is getting huge lovely meals with whole milk and potato chips and dessert and good corn bread. And she eats it all. Does my heart good.

Geriatric anorexia is actually a serious problem out there. A bout of not eating can trigger a cascade of troubles that leads to death. Does this sound familiar?

If you've met me, you know that I always wear a gold fork to symbolize the rule of full nutrition in recovery and to refute the silly notion that "it's not about the food" when you are malnourished. My friend Stephanie Millstein took this shot of me at NEDA wearing my usual lapel pin but also my Gold Fork Necklace made by the wonderful Carrie Arnold:


For my grandmother: the power of the fork!

October 10, 2007

A blog that thinks

It takes a real shift in thinking to question the orthodox notions in our society about "overweight" and "obesity" and the "epidemics" that are assumed to be going on.

MedJournal Watch is a terrific place to watch that shift both happen and be documented.

Bravo, MJW!

October 6, 2007

National Eating Disorders Assoc. Conference

Good morning.
Just getting my stuff together for another day of the conference:

Last night at dinner, Bridget Whitlow from UCSD's Eating Disorders Program asked me what keeps me from the burnout so common in parents after their child's recovery.

You see, at these eating disorder events the parents who attend are far more likely to be either at the ends of their ropes or the battle has been lost. There are very few parents out there telling success stories or offering hopeful stories and support.

Bridget's question resonated in my head the rest of the evening. Why am I doing this? Why do I spend my time and money and energy on a cause that isn't for my personal benefit - and how do I avoid burnout.

My answer to Bridget was that my parents are political activists and so it has always seemed like both a responsibility and a right to go back and help others over the rough spots you've gotten over. I can also thank my mother's amazing optimistic spirit. I also want to honor my daughter's amazing work at recovery and living well.

But I think when I sit here like this I'm really speaking to the parent I know has just realized his or her child has an eating disorder and you are on the verge of tears all day. You don't know what has happened to the life you thought you were living, and you are scared. You are looking for clues to how to survive this and how to find safety and peace again for your child. I was that mom, and I want you not to feel alone.

Sending hope. I need more coffee. Time to go downstairs!

October 3, 2007

Yes, some parents suck.

I get the feeling, often, that people think I'm overly starry-eyed about parents. That in my eyes all parents are wonderful, can't do wrong, and are always ready fight a pack of wolves to save their babies.

My message of "it's not your fault" is seen as letting parents "off the hook."

(Let's leave aside that this wouldn't even be a question if we were talking about childhood leukemia.)

But let me say this publicly and loudly: some parents really do suck. No question. I'm not naive, nor am I simply philosophizing:

I was a foster parent. I've taken care of an 18 month old with a cast from hip to toe due to a spiral fracture he didn't give himself. I've shuttled a baby in and out of the back door of social services for parental visits with parents who had been raising the child in a motel crack house.

Some parents are neglectful, abusive, incompetent, or carrying on a family inheritance of mindlessness. And some of those people are raising kids with eating disorders.

But if you ask almost any child in the toughest part of recovery whether his or her parents are abusive, neglectful, over-critical - or any of the other sins of the week in ED theory - they'll tell you "yes." But that doesn't make it true.

Ask an Alzheimer's patient whether her daughter is stealing her good silver if you think it is.

A recent comment on this blog suggested that for those families unready or unwilling to step up it would be a great idea to have Maudsley Foster Families. I agree. But let's start with the benefit of the doubt for all parents.

October 2, 2007

The monkey on your back does not carry donuts

The pieces are coming together. Rapid advances in neuroimaging, DNA analysis, and other research are finally finding better hypotheses for the cause and maintenance of eating disorders than the tired old "she's so vain" and "I told you not to make her finish her plate!"

Two friends alerted me to this interesting research: Anorexia shares addictive pathway with ecstasy

And if you have not read about this, you'll enjoy it: "Sense of Taste Different in Women with Anorexia Nervosa: Imaging Study Finds Brain Changes Associated with the Regulation of Appetite."

Walter Kaye, the head of UCSD's ED program, says people with anorexia may "have difficulty recognizing taste, or responding to the pleasure associated with food. Because this region of the brain also contributes to emotional regulation, it may be that food is aversive, rather than rewarding. "

"This lack of interoceptive awareness may contribute to other symptoms of anorexia nervosa such as distorted body image, lack of recognition of the symptoms of malnutrition and diminished motivation to change"

If you come to the NEDA conference this Friday you can ask Dr. Kaye about this - I plan to!