December 31, 2009

Rebooting a tough year

Too many people I know have had a very hard year, so for us all my husband and I are breaking this open tonight:


December 27, 2009

Condiments!

It's a food-themed blog, so a food funny I spotted in Manhattan today:


December 25, 2009

One word: Minnesota

Last night, Christmas Eve, I took a tearful call on the F.E.A.S.T. phone line. The details are familiar: another brave mom still searching the Internet and making calls in search of hope despite a series of hospitalizations and repeated and frightening episodes with an eating disordered loved one.

Sometimes the calls are from parents who have just discovered the illness. These calls are a relief for me and the parent: I know where to point them. Good science, good clinicians, an empowered and well-informed family and EARLY INTERVENTION is the quickest path from terror to effective action.

What frightens ME is how many of these calls are from parents who are not new to the topic of eating disorders but are new to the things I'm telling them. In the past month I've talked with three mothers of patients who have seen a series of eating disorder experts and NEVER HEARD OF THE MINNESOTA STARVATION STUDY. Not ever heard "brain disorder" or "genetics" or "Maudsley." Never been told that the family CAN do anything except drive their suffering child to a doctor's appointment. Despite asking and going to appointments and going to ED sites and reading books these parents have not been provided with a choice to respond in a different way. These parents did not know that a semi-starved brain is being damaged and that damage causes mental symptoms like distorted body image, social disconnection, fixation on food, OCD behaviors, or that for those with an anxious temperament even a low level of malnutrition is a self-medication that becomes nearly impossible to forgo.

I'm angry, angry, angry that these parents are not given the information or the choice to respond in a different way. I'm furious that parents who would have acted early and assertively are robbed of that opportunity because people who are ignorant of newer information - or reject it - don't give these families what they deserve: the knowledge that eating disorders are a TREATABLE ILLNESS and that parents and families have enormous power and unique abilities.

My anger and frustration are continually washed away, however, by two things. One is the bravery of these parents who keep searching and once they hear of better information are willing to do what needs to be done. The other is the growing community of parent activists and clinicians and patients who are changing the face of this illness through talking and writing and blogging and mentoring and treating and volunteering and donating and innovating and holding support groups and bringing information to doctors and schools and bringing this illness into the modern era where it belongs. Lives are being needlessly ruined and lost due to ignorance - not just the illness. To my fellow activists and to the brave lady from last night who said that the information she just got from F.E.A.S.T. is the best Christmas gift she could imagine - my gratitude and my best wishes.

December 23, 2009

The horse knows the way to carry the sleigh....

Amtrak ain't no sleigh.

4am woke up
5am family left for train station
6ish arrived station
8am me and the kids supposed to start our 9 hour train ride to grandma's
8, 9, 10, 11, 12pm all trains at standstill for unknown reasons, not cancelled, no news, every once in a while a train to somewhere is boarded and leaves but ours..... nothing.
12:40pm our train pulls out of the station
5pm conductor announces that train will end service the station right before ours, but busses will be there to take us to our destinations
8:30pm we arrive and unload bags and go out in the cold to busses. All busses are waiting but the one to our destination. They don't want us to wait in the cold, but it is too far to walk to the station, so we are instructed to drag our bags and selves back onto the train to be pulled into the station. We do so, unload, wait in station.
8:45pm train staff leave for the day, assuring the room of 20 travellers that "someone" will come get us when a bus arrives. The silence is deafening.
9:15 a bus arrives
10:15pm we arrive at the station that we should have been to at 4pm.

But ya know what? My husband got us to the station despite the blizzard fallout and got us put up in the lounge all morning and missed work as he hung out to see what would happen, my daughter reported that her brother was "great" throughout and that I was "good" (for the record, she was "GREAT"), the train staff tried, our fellow travellers were patient, my mother took my update calls with good humor, my father was willing to come down to the station to get us no matter what time it was, and we're HOME at grandma's house.

December 17, 2009

F.E.A.S.T. speaks up about mandatory BMI screening at schools

I am against BMI screenings at school. I don't know if I would be as sensitive to this issue if I had not seen how very sensitive it is to children, and how validating it is to the irrational fears of those with an eating disorder or body dysmorphia.

I was so glad to see the Eating Disorder Coalition's publication advising against these screenings, and so pleased that the F.E.A.S.T. Board of Directors has voted to support it:

http://www.feastblog.org/2009/12/feast-board-supports-edc-talking-points.html

December 13, 2009

Eating Disorder Organizations Join Forces

There are several reasons I'm happy to see this joint press release:

 
Eating Disorder Organizations Join Forces To Urge Focus On Health And Lifestyle Rather Than Weight
  • I like seeing different eating disorder organizations collaborating - this is a trend I'd like to see continue.
  • It is important for the eating disorder world to take a stand against the growth of weight prejudice.
  • I'm weary because when I try to talk about eating disorders people want to talk about the unhealthiness of fat.
  • I love this phrase "focus on health and lifestyle rather than weight."
  • I hate that the above draws blank stares from people because they assume fat people behave unhealthily and thin people behave healthily.
  • Blogging is easier when other people say what you are thinking.

December 12, 2009

Maudsley-based chat-support groups for parents, spouses, partners

Networking is my favorite part of my work. I enjoy introducing people to one another and keeping in touch with various work going on out there that can improve options and outcomes for families. I see so many good ideas circulating.

Here's one - and it is available now:

Dear Laura,


I hope you are doing well? Maybe you remember me and my project "Get-Connected" -Caregivers are the experts. You helped me a couple of months ago to find therapists who are interested in supervising and guiding a chat-group. Thank you very much again! That was very helpful.


With your help we are now forming a team of 14 therapists (8 from the US, 2 from Australia, 3 from the Czech Republic and me from Germany) around the world who are now offering Maudsley-based chat-support groups for primary caregivers (parents, spouses partners) and have now started the recruitment for our chat-groups.

If you want to have a look on the website, please click here:
http://www.e-mental-health.eu/anorexia

Best wishes, Annette

Dipl.Psych. Annette Mehl
Psychiatrick√° klinika 1 LFUK a VFN
Ke Karlova 11
12 000 Praha 2
Czech Republic
mobile:00420775196135
email:annettemehl@yahoo.de

December 10, 2009

A factor of starvation

Years ago I spent time in an airport waiting area with a mom and her young son with autism. The silent young man, she said with both chagrin and bravado, lives on a diet of fresh MacDonald's french fries, milk shakes, and megavitamins. At the time I appreciated both her honesty and her predicament, though I think I probably had some smug disapproval going at the same time. These were his boundaries, and this mom was not catering to whims, she was loving him and taking care of him from where he was. I did not know that some day I would understand this mom's nurturing in a very personal way, and that I would continue to wish that I could go back and really hear her and make sure she felt supported and understood, if only from a stranger.

When you spend time in the ED world you cannot help but notice how often you see certain traits in patients, many former patients, and often in family members. Things like difficulty with 'set shifting,' a blinding focus on detail, and difficulties with correctly interpreting the emotions of others. There is a lot of talk now about a connection between autism and anorexia. My first question, of course, was whether these autistic traits were present before anorexia struck, and whether these traits offered new directions for psychological interventions, and whether these traits were affected by malnourishment.

So if these results, Emotional Theory of Mind and Emotional Awareness, stand the test of further research and many of the autistic traits that predispose and maintain the disorder turn out to be "a factor of starvation" this begs the question: will this open a new avenue to understanding autism itself? Could autism - often associated with food aversions and sensory issues - be better treated nutritionally? That is certainly something many parents believe, and they are the ones living both alongside and observing their children.

The paper mentioned above also adds to what should be by now sufficient evidence that "food is medicine" and needs to be the first-line, non-optional, and urgent first step in eating disorder treatment. It pains me to know that it is still 'controversial' to say that ED symptoms are driven by malnourishment, and that most parents are not told this at first diagnosis.

Again, I think we will learn a great deal about eating disorders by looking at other fields, and the reverse.

December 9, 2009

Re-member to be a Member!

Are you a F.E.A.S.T. member? If you are, check your email.

If you're not, you didn't get to read the recent newsletter with a podcast interview with the author of a recent book that describes a family discovering their daughter's anorexia, and the family's discovery of the Maudsley approach. It's not too late...

Membership in F.E.A.S.T. is free of charge, as are all of our services, but we do need financial support to do our work. Although we are all volunteers and all our indirect costs are donated, there are website, insurance, travel, and administrative costs to cover every month.
We need your help! In the month of December we are asking our supporters to become Supporting Members or Founding Members of our organization.

www.feast-ed.org/feast/joinfeast.html if you are not yet a member
http://www.feast-ed.org/upgrademembership.html to upgrade your membership

Being a member at any level lets us know who we serve, and lets the world know that parents are joining together to press for improved treatment and family involvement in treatment. Join us at whatever level you can!

December 8, 2009

December 6, 2009

Teaching nutrition

Having an eating disorder in the house made food a difficult topic for a long time. Seeing the extremes of thinking made thinking about food difficult. In the years since, I've wondered how parents can be positive and nurturing providers of meals, and how to talk about food. Although in the eating disorder world we learn not to use the words "good food" and "bad food" and "healthy" we often wonder how the heck we CAN talk about food.

My friend, Katja**, has a great column on this:
Talking to Your Kids About Food:

"We teach nutrition best by serving and eating the foods we want our children to eat."

**For more on Dr. Rowell and her practice in Minnesota: www.familyfeedingdynamics.com and her blog at: http://www.familyfeedingdynamics.blogspot.com/

December 3, 2009

"often with positive attributes"

My search for a published, authoritative, unified theory of eating disorder causation, perpetuation, and resolution has ended:

The American Journal of Psychiatry Childhood personality and temperament traits, which tend to be relatively mild, appear to contribute to a vulnerability to development of an eating disorder . Such traits may become intensified during adolescence as a consequence of the effects of multiple factors, such as puberty and gonadal steroids, development, stress, and cultural influences. For anorexia nervosa, there is a dysphoria-reducing character to dietary restraint. In contrast, for bulimia nervosa, overeating is thought to relieve negative mood states. But chronic pathological eating leads to neurobiological changes that increase denial, rigidity, depression, anxiety, and other core traits, so that patients often enter a vicious circle. This results in a out-of-control downward spiral whereby a significant proportion of patients develop a chronic illness or die. Fortunately, a substantial portion of those with anorexia nervosa and bulimia nervosa recover by their early to mid-20s, although mild to moderate degrees of temperament and personality traits persist, often with positive attributes."

All else, as a great philospher said, "is commentary." The above paragraph is all we need to know, really, to re-orient ourselves and steel ourselves to the task and be OPTIMISTIC. Well, some of us also need it translated into English, but that's what good clinicians and advocacy organizations are for.

This elegant diagram paints the picture:





I don't know if they give a Nobel for this sort of thing, but from where I'm sitting I think we should start a new prize called the "Kaye Award" and give it to Dr. Walter Kaye first.