September 30, 2010

What if feeling fat could be triggered by being too thin?

I don't usually use the terms 'fat' and 'thin' or 'triggered' as they are so fraught as to have little meaning but I'm using them here to make an unambiguous point.

Gaining weight makes you feel fatter, right? Losing weight makes you feel thinner, right?

Not if you are wired for body dysmorphia when you are undernourished. This is the point that many of us try in vain to explain to people unfamiliar with eating disorders. If you are underweight and you have a certain biological predisposition not only will you feel fatter when you lose weight you will feel more normal when you gain it back.

What?

This isn't just theory. I've seen it and countless families see this when they get their loved one eating normally again and not only reach a "safe" weight but actually find their normally functional body composition and stay there. The sense of being 'too big' abates. The visual distortion in the mirror flickers and fades. Not for everyone, and less so for those who have been marinading in malnourishment for a long time.

The problem is that parents, and often clinicians, can't bear that excruciating middle ground - the extinction burst - the increase in anxiety and distress that attends the normalization of body and brain. The patient is in extreme distress and desperate for relief. The doctors can't claim medical emergency and the world is saying "he looks fine now" and there are no good rules for when normal has arrived. There are no agreed upon biomarkers for weight normalization.

So patients get stuck in the body dysmorphia at its worst point and steep in it, writhing - with the endorsement of their team and with parents cowering in fear and exhaustion.

I didn't really believe it either - that the final bit was necessary and would lead to LESS distress and dysmorphia. But it did. Almost like a spigot was turned to a trickle instead of an open firehose. Not gone, mind you, but the volume reduced greatly. To the level that, frankly, most western women simply live with.
**though of course we should not have to because there shouldn't be all this fat-phobia and moralizing and appearance-consciousness and judging and women-degrading going on at all. but that is a battle for another day and not just for the ED world, frankly.

September 29, 2010

Can't touch this

Wow. My mind is swirling.

Our Supergoogler, Mamame, over at aroundthedinnertable.org brought 'Hypokalemic sensory overstimulation' to a discussion of the power of touch and digging deeper I find all sorts of connections to things families have reported in their eating disordered children: the response to delayed meals, the strange relationship with high carbohydrate foods, the EXTREME aversion to touch, hypersensitivity to sounds, sensory integration problems, autism spectrum issues, ADHD, diabulimia...

There's valuable stuff here.

September 28, 2010

Swallow Up

I've recently finished reading Cheryl Kerrigan's book, Telling ED No! and it strikes me that a new era of eating disorder literature is emerging: an optimistic one. The eating disorder narratives of the past were, in the main, fault-finding, death-defying social commentary validated by excruciating medical details. The villains were dark, the triumph embittered, the recovery sour with recrimination toward self and others.
It cheers me to see more focus on practical skills, more forgiving, and less psychobabble. 

I was particularly struck by this chapter: "Swallow Up," where Kerrigan describes her therapist, Bob, giving advice on how to think of eating: "think of the food going up into my brain. When I eat, my brain is being fed and my mind can function properly."

Learning this concept, she reports "With each bite came clarity, and with clarity comes recovery."

September 27, 2010

Yelling at anxious people

Hey, I bet you don't have one of these at your house!

It's a leg hole trap for small animals. We found it in the woods ages ago. Welcome to rural Virginia.

Coincidentally, if anything is coincidental for a writer, I came upon it again this morning while grumpily taking the house apart for an item my son needed for school. (um... it was in his locker all the time) At the time of course I thought my anger was about his losing the thing, and his not looking hard enough, and his expecting me to find it, and his not caring enough about the consequences, .... But really: I was mad at him for being mad. And really, he was worried and it worried me to see him worried..

I know better. But I felt it anyway. It is a really bad habit and I see it all the time in myself and others. Getting angry at people for being angry, or anxious, or emotional - it's a really common pattern - as is lecturing. I'm chagrined to point to the slapping video clip I posted last week as an example. And, as Dr. Phil would cloyingly ask us: "how's that working for you?" Not well. It NEVER works. Like I said, I know better, but I fall into it anyway. I stalked around looking for this silly thing until I started to laugh at myself, and then I spotted the leghole trap and it got really clear: yelling at someone who is feeling upset is pretty stupid. Anxiety gets worse when we escalate it and, well, not very parental.

How do you get an animal out of the trap? It's hard. How do you deal with an anxious person in a stressful situation? Pretty similar. But anger and lecturing are probably about as useful either way.

September 26, 2010

Don't be so smart!

The judge who says that intelligent parents turn divorce nasty makes an interesting observation. I wonder if my parents should feel insulted for not being smart enough?  I'm not sure I agree, as miserable divorces seem to be so common and don't seem to discriminate.

But this part is true and is one reason I so admire my parents for their (intelligent) and mature ability to divorce and remarry with minimum pain to my brothers and I: that parental discord makes the children into "both the battlefield and the ammunition."

I don't know if it is a matter of intelligence but I sure hate it when parents bash their children's parents. It's like trying to saw off your own arm.

September 25, 2010

Dysmorphia and the DSM-V

Muscle dysmorphia and the DSM-V conundrum brings up interesting issues.

I have been arguing for a while that the name and way we diagnose "eating" disorders is barking up the wrong tree. The name implies that it is about eating and the diagnosis implies that its severity can be measured by the effects of eating behaviors.

I've also argued that dysmorphia can be seen as a common symptom of an eating disorder but isn't the same thing as an eating disorder: it can exist without ED compulsions or behaviors and the symptoms of dysmorphia can sometimes be a symptom of malnourishment alone - resolving with normalized nutrition. Not all eating disorder patients experience dysmorphia, either.

Hey, I know how to parse all this very efficiently!

What if we saw both eating disorders and dysmorphia as part of the OCD spectrum? Get rid of the category of eating disorders and make it a subset of the OCD diagnosis. What if we were diagnosing these MENTAL illnesses by the thoughts and behaviors instead of by the effects OF the thoughts and behaviors. What if we saw the obsessive thoughts and compulsive behaviors of an eating disorder as OCD, and the same for muscle dysmorphia and body dysmorphia?

I know, we'd still need to parse out what symptoms were being set in place by malnourishment.

We'd have to throw out most of the eating disorder research literature because both diagnosis and definition of recovery have been based on the medical state - and a minimum one at that.

But really, is the way we're doing it working now? Could we be treating eating disorders and dysmorphia better if we considered them an obsessive compulsive disorder?

September 23, 2010

Maudsley for young adults

We need better eating disorder treatment for young adults. What fascinates me about the reflexive critique of Family-Based Maudsley is that the same people who resist using evidence-based treatment like to cite the very same study for why it is only for kids. But: they're reading the studies selectively and without comparison. There ARE no good studies on what works for young adults - not for Maudsley and not for anything else. The truth is there is just a lot we don't know.

So, to review:
  • Yes, Maudsley can work for young adults. This is happening all over the place, and often successfully and often after years of unsuccessful treatment.
  • The studies that showed better results for adolescents were talking about patients 18 and under, not under 16 as I keep reading out there.
  • The drop-out rates for adult treatment are so high there just aren't good data.
  • Longer illness lowers success rates. Period. So: older patients struggle more. This is not to say that older patients cannot recover but that they need MORE help from everyone, including family, not less.
We need more data. We need to know how to personalize and refine treatment for older patients, for bulimia, for BED, for patients without healthy families, for diabulimia, for everyone. The only way to do that is through well-designed research, and that is in its infancy.

Good news - some of the best out there ARE doing that research:
The University of Chicago Medical Center Family Based Treatment for Young Adults, recruiting NOW.

September 22, 2010

What's next? Boils and a rain of frogs?

I know there are more important things to worry about but ...I'm under siege here.

How well would you sleep in a room with dozens and dozens of THESE dive bombing you and scrabbling about:
 

I thought not.

Well I got rid of them one by one by one - a stinky and messy business, I assure you - and I think I've blocked their entrance but look: they want in!


video
Sigh. I just checked. They're still coming in. Gah!

September 21, 2010

Wanting to 'set the record straight'

Since I published the post Confronting viewing" indeed a few days ago I have been having a lively correspondence with some of the people involved in the story, including the family. As should be expected, not everyone agrees on the value and quality of the piece. Accordingly, now the critique of the critique begins.

The psychologist shown in the 60 Minutes piece asked me to 'set the record straight' by sharing her perspective. Here it is:


Dear Laura,
Thank you so much for making contact with me. You are absolutely correct in your assumption that 60 Minutes presented a very oversimplified view of the treatment that Amy has received to date. As you suggested, Amy has had several admissions to inpatient anorexia specialist facilities for weight restoration both throughout Australia and internationally, in addition to the ongoing services she has received from me, her psychiatrist, other psychologists, psychotherapists, GPs and dieticians.

Of the 1 hr 15 minute interview I did with 60 Minutes, only approximately 2 minutes of footage was actually shown. Amy and her family have both acknowledged the facilitatory role they have played with anorexia, and although I have worked with the family to help them with limit setting around food and Amy's illness, Amy's extreme violence at home has made this very difficult for them (they also received treatment under the Maudsley Method prior to Amy being referred to me). Amy has also experienced significant periods of remission where she has been of healthy weight, worked, attended University and lived independently in the past four years, but none of the footage of myself or Amy acknowledging this was presented in the story.

Amy has also been refusing any admission to an inpatient facility for refeeding for the past 12 months, and as she is an adult (i.e. her parents don't retain legal guardianship of her), no medical professional could admit her until she was so medically compromised as to be admitted under an ITO.

The footage that 60 Minutes didn't show was that they actually provided financial assistance for Amy to receive overseas specialist treatment straight after the story went to air, which Amy was unresponsive to. She is now in a more medically and emotionally fragile state than before she accessed the overseas treatment, although she is currently in hospital under a refeeding program. I trust you understand that due to patient confidentiality, I am not in a position  to disclose any other details about Amy's struggle with anorexia, but I share your concerns about the oversimplistic portrayal of Amy's story (and the support she has received).

 Kind regards,.
Renae

Renae Beaumont BSc (Hons) PhD MAPS
Honorary Research Fellow
The University of Queensland, Australia

Just because

My friend, Kathleen McDonald, came to visit my town last week and brought me a smile.

No, literally, she brought me a smile:

And since I know she's absolutely buried in preparation for the Eating Disorders Coalition Lobby Day next week, I'm tickled she had one to spare!

Good luck at Lobby Day, everyone. Go FREED Act.

May your heels be low, the weather fine, and the Congresspeople smiling!

September 19, 2010

Being liked is overrated, too

I hear a lot of complaining about eating disorder clinicians. I do a fair bit of complaining myself. But at least some of the time I remind myself that being disliked for doing your job isn't always a sign of doing it wrong: it is often a sign of good practice.

A doctor I admire wrote something on an ED message board this week: "You do not need to be the patient's friend, or confidant, and you shouldn't be someone she wants to bring home for dinner right now, as anyone that is doing their job with her will be working against the ED behaviors, and that is bound to make her angry"

Too true - and it goes for parents as well. We are so used to being liked for what we're doing well, to have our kids want to feel better, and at the least to understand we're doing things for their own good. With an eating disorder the patient has to pass through some pretty rough flying before they get to safe ground and as their escort to unhappyville we're like perky bright-faced flight attendants: in charge but not friends. As parents we can usually take that in stride. OK, sometimes.

When I hear complaining about treatment providers it is important to remember that patients and their parents don't always want to hear what the providers are saying - even when they're right. In fact, what providers have to do and say is rarely welcome and never easy. These doctors, therapists, nutritionists, and other providers are humans, too, and although being criticized is part of their job it is also not fun for them. And they can't fight back.

I admire them for taking on this illness and our kids. I am in awe of those who do it well and keep optimistic and keep learning. We're all on the same team - family, patient, clinicians. The other team is ED.

September 17, 2010

"Confronting viewing" indeed

Why is it that I see this scene in my head so often when I see eating disorder literature and news coverage?



I'm not "confronted" by Amy’s Story at all. What she is doing and saying is completely understandable and harrowing - and not her fault. What is "confronting," and where the slap above needs to land, is on those who are failing this young woman. This beloved daughter has a horrible mental illness that requires treatment, and not the treatment she's getting. Her parents have been given wrong information. Her therapist is sadly mistaken. The journalist is, it seems, willing road kill in this narrative of "control" and tragedy.

That news story is everything that needs to be re-examined and sharply rebuked about eating disorders: that patients are choosing their symptoms and should be followed along helplessly as they do so, that these symptoms have some sort of deeper meaning that we as a society need to change, that anorexia is a fear of being a "fat cow," and that anorexia is only notable of public attention when it has depleted a human being of all visible flesh.

What should have, and could have, been an expose of a failed treatment model is instead a piece that will further confuse and frighten families seeking help. I call on all those reading this to contact that channel to calmly and firmly protest this piece and ask for a retraction and follow up. I am.

Insight and eating disorders: overrated?

I really think this is the best mainstream article on the Family-Based Maudsley approach to date:

Eating-Disorder Treatment: A Family Affair

It includes a quote from Daniel le Grange that will upset and challenge the majority of eating disorder clinicians - and it is time for them to face and discuss it: "There's no evidence that understanding what causes an eating disorder helps the adolescent recover"

We need to be discussing this. If this is true, then most of the treatment out there for ALL patients needs to be re-thought. It seems so logical that patients need to understand in order to move forward toward recovery. I don't think they do - I think that is our job UNTIL THEY CAN. And if full nutritional restoration for months at a time is necessary to get there, then that needs to be our goal as family, friends, clinicians, and society.

Insight is, in my opinion, a sign of recovery - not a requirement to access care. Let's stop asking patients to understand and change; we need to change how we respond.

September 16, 2010

B's thoughts

B made a comment on my post last night that makes a beautiful post of its own - thank you, B!


The effects of this disease are so amazingly complex but I was not surprised when I read the abstract.

I'm about 10 pounds above my anorexic weight and (now) I can see that I did all of these things:

Magical thinking, anosognosia, social withdraw & isolation, obsession with food, black and white thinking, personification of Eds, lack of concentration, fear of making mistakes, need to please people, (this list does not even include all the physical effects).

Slowly, with weight restoration, the effects have lessened but I still can't gauge my size. (I am a terrible driver.)


There was one time, when I was 90 (**I think she means in the 90s), I turned too quickly and got a glimpse of myself in the mirror. The indents and hollows, freaked me out but I couldn't hold on to the image.

I guess that's part of the reason that I didn't stop. We don't body check to be vain, we honestly just Can't See It.

(I was not surprised when I read the older research that said that people with anorexia don't feel reward when they taste water with sugar.)

Not only could I not gauge my size, but food still doesn't really have a taste.

I wonder if it ever gets better?


BTW, parents or caregivers using reason or logic to try to get us to gauge our size does not work.

It just made me feel paranoid and DUMB because my brain couldn't grasp the concept.

I overcompensated by trying to be smart with calorie planning and being the best at starving myself.

**

Why does it take scientist so long to put out this research?

I use to sing along to Silverchair's lyrics (Distorted eyes when everything is clearly dying) since the 90's. But even then, I knew that this wasn't and couldn't just be the effects of a psychological problem.

I can pretty much guess the outcome to that Bulimia study below.

B.

London service for families who lost loved ones to eating disorders

Beat, the biggest eating disorder nonprofit in the world, is holding a service for those lost to death by eating disorders. It is an issue that we cannot flinch from, and MUST motivate us to do better.

"The risk of death for someone with anorexia is three times higher than someone with depression, schizophrenia or alcoholism and 12 times higher than in the general population."

Service for families who lost loved ones to eating disorders

The service is the 28th of September. I cannot be there but friends will, including members of F.E.A.S.T.'s new UK Task Force. I will be thinking of you, and those you are honoring that day and their families.

Thank you, Beat, and Susan Ringwood, for holding this important event.

For more information, visit the Beat site.

September 15, 2010

Good reading for mid-week

A busy week but taking time to catch up on reading:

Role of the evolutionarily conserved starvation response Another example of innovative thinking on why eating disorders may have developed in humans.

Anticipation of body-scaled action is modified   An interesting exploration of Body Dysmorphia, something we truly need to understand as a field and as a society. This is not a matter of over-valuing thinness or being brainwashed into fearing fat. This is a real, brain-based, harrowing experience where your body schema is altered.

7 Common Myths Something I've long hoped for: including eating disorders as a matter of course when discussing child and adolescent mental health instead of sectioning it off as a weird social phenomenon and metaphor for societal ills.

D.C. clinics offer 'red carpet' treatment to people who may be infected with HIV One of my job hazards is that I'm constantly looking for solutions to the current systems of seeking and accessing eating disorder care. Imagine if the illness here was eating disorders! Instant appointment, coordinated care, single contact as liaison, and looking at the whole thing as a less expensive and more effective approach that benefits the rest of society!

September 13, 2010

Could it be that simple? It was with ulcers

Could eating disorders be as simple as a brain disorder set off by malnourishment in those with certain genes? An infection? Something very obvious that we've imbued with all sorts of meanings mostly based on the way we've made it worse by not knowing?

I don't know.

But I do know it has happened before: The Wrong Stuff. Ulcers were largely misunderstood and poorly treated until suddenly they were pretty easily treated. Why didn't the simpler idea turn up earlier? Lots of people had a lot of ideas (and some had a lot of money) invested in other ideas, larger ideas.

I do suspect that the ultimate judgment on eating disorders will be pretty simple and straightforward. I think a lot of people are going to resist these ideas no matter what data they get. (See Semmelweis Reflex) And I think that a certain percentage - just as with ulcers - of these problems will turn out to be more complex and intractable.

But I look forward to the day when we treat eating disorders early and effectively and leave our energies for the minority with more difficult problems.

On Air and On Error

I'm a radio nut. I buy antique radios that don't even have dials. The only working part of a car I care about is the radio. AM, FM, satellite, whatever. I get voice crushes, and my crush on Ira Glass only got worse when I learned that he was the same way and never wanted to see any of his radio idols or their pictures - oh, Ira, I'm with you (and don't take this the wrong way but I don't need to see you).

Fun fact: I had my own radio show when I was in junior high. They gave me an hour on Saturdays down at a local college station and as I sit here thinking about it I now know that this was surely the least listened to hour of the week as most of the students were sleeping off hangovers. But my mom listened!

Love, love this interview of Glass for at least a dozen reasons, not least of which is that being wrong has been a theme of MY week's thoughts: Love The Wrong Stuff : On Air and On Error

September 11, 2010

ED doesn't do Maudsley

It may be coincidence, and it may be the inherent difference between the perspective of patients and parents, but I think we may be getting closer to a mutual understanding on my last post. Whatever the reason, we are clearly not all talking about the same things.

When I ask "who is in control" I am asking whether ED is in control.

When some others - notably, people who have lived with ED themselves - hear me asking that question they thought I was talking about whether parents or professionals were in control.

Apples and oranges here. Of course professionals should be offering and the patient should be following treatment recommendations. The question is who is in charge of making that happen: the patient or the parents or the professionals. So amending what I originally said to "accountable" rather than "in charge" would be clearer.

I believe the patient can't be made accountable. That just doesn't work. It is cruel, too. The eating disorder symptoms make that almost impossible and certainly super-human: anosognosia, overwhelming anxiety, cognitive distortions, and the gruesome trajectory of distress as one gets closer to well. When patients are in charge of their own accountability they generally spend long periods of time in states of brain damage, lose their relationships, and stunt their development - not to mention suffer lifelong medical difficulties.

So to me the question is WHO should then be accountable for making sure a patient is fully fed, kept from bingeing and purging, living in a safe and supportive atmosphere, and engaged in psychotherapy and skills building for full remission and rejoining life?

Clinicians can't do this on an outpatient basis. This leaves the patient's eating disorder in charge. We know this. Hospitals can't do this: they release patients as soon as they are medically stable which is nowhere near well or independently able to manage. This also leaves the eating disorder in charge. Residential treatment may offer a longer period of safety from ED, but still isn't long enough and adds an additional element of having removed the person from their family and real life so that there is even LESS safety at home on release.

I keep hearing - here and elsewhere - that giving the accountability to parents is only for this or that population and "what about" the rare cases of abuse or lack of family members. I hear you. That's tragic when there isn't a loving and stable and well-coached family to take over. But if the home and family are not a safe place to take over accountability then the question is: who? Sending a patient home to be accountable for their own recovery is sending them home to ED.

I need the critics to stop with the "anything but parents!" stuff and answer this: if not parents, then who? ED?

September 10, 2010

Live near Maryland? Research studies on bulimia.

Bulimia research at Johns Hopkins

Baltimore, MD: Bulimia Research Study. The Johns Hopkins Eating Disorders Program is seeking women 18-40 years old with bulimia nervosa interested in a research study funded by the Klarman Family Foundation. The study includes a health assessment, blood testing and pictures of the brain taken using a medical scanner. Eligible women will be paid up to $400 for their participation and will be offered 6 weeks of outpatient treatment. Call 410-955-3863 for more information (*for Baltimore Residents only).

Research Volunteers Needed with Bulimia Nervosa. We are seeking female subjects (18 yrs old and older) with bulimia nervosa to participate in an outpatient research study. This study requires you to drink a chocolate shake, place your hand in an ice bath, and have your blood drawn. Participation involves an initial 30 min screening and two (approx. 3.5 hours each) morning sessions. You will be paid up to $120 for your participation. For more information call Dr Margaret Seide (410)-955-8003 or email at mseide2@jhmi.edu .  Angela Guarda M.D. IRB

Critical moments

Yesterday was a very talkative day. I met with F.E.A.S.T.'s web developer first thing in the morning and then got home to buckle down to a Powerpoint I'm writing (does one write, design, arrange, draw up, or throw together a PP?). It was to be a solitary, silent day.

I ended up on the phone most of the day instead. Two seemingly opposite critical moments of care:

A mother at the beginning of supporting a child with an ED, and a mother who fears she could be at the end.

Both mothers were feeling desperate, frustrated, and confused. Both were also bravely focused on positive action.

Neither were getting clear and consistent guidance from clinicians. Both were being given a wide range of mutually exclusive instructions but almost none that included them. The first mom was realizing that no one was going to figure this out for her, the second was in a fierce fight to be allowed to make decisions.

One was sitting at home trying to make phone calls under the pressure of time and her daughter's deteriorating and angry mental state to find a place to get treatment. One was in a hospital lobby racing her cell phone battery to find help keeping her daughter in the hospital.

Here's the factor that made the two mothers most similar and kept me feeling that it was almost the same situation: ED was in charge. For all the usual reasons - untrained hospital staff, over-confident generalist therapist/staff psychiatrist, the counter-intuitive nature of the illness, distrust of parents, legal issues, lack of consistent ED protocols, a confusion of ED with other mental illness, disbelief in anosognosia, slavish devotion to teen independence, a religious devotion to BMI, and ignorance of eating disorder pathology - both of these mothers are being held back from helping their daughters because ED is being allowed to run the show. In the first case, the teen patient's ED is in charge because the family is getting bad advice and has no way of knowing who to trust. In the second case the mother is forced to be Cassandra: doomed to know the truth but not to be believed.

I am more and more convinced that the push-me-pull-you debate over whether parents should be involved with treatment and charged with feeding and all related issues is really part of a larger question: if not the parents, who?

Who should be in charge?

Because the consistent theme in the reality of most eating disorder patients is that the Eating Disorder is left in charge and it doesn't work. It doesn't work with patients who have just been diagnosed and it doesn't work in older patients. We've lost generations of patients to lifelong damage, disability, and death because we allow ED to be in charge of treatment. ED is very clear on his goals and they're not good. If we are not going to put parents in charge - the people most likely to be able to do so - then tell me: who will be? 

September 9, 2010

Scombroid food poisoning

Scombroid food poisoning is, I believe, the answer to yesterday's question! Or at least that's my theory. It's not an allergy, but a very specific pathogen found in the skin of certain fish that only creates toxins if under-refrigerated. Cooking kills the pathogen but not the toxins. Not everyone responds to it, and it is usually self-limiting. Benedryl (anti-histamine) is often recommended.

That was such fun, I'm going to do another. One that took me two days to find a few years back, but turned out to be true:

Two siblings, both early teens, started to have similar strange "episodes." One was a boy who lived for video games. The older sister had just learned to drive. The boy would come to his mother in terror because he'd felt as if he was frozen and time stopped - then he'd awaken and be exhausted - afterwards he would sleep for hours. The young lady had to pull off the road while driving because she experienced these moments when everything became explosively loud and then inaudible, time would speed up, and then slow down - and she felt very disoriented. There were no other symptoms or problems. The doctors could find nothing. The kids were otherwise healthy. The episodes became more and more frequent. The boy's episodes decreased after his video game time was limited.

Your guesses?

September 8, 2010

Why doesn't House use the Internet?

Let's see if you Googlicious sleuths find the same answer I did for a friend who described the following:

A young woman works at a family-style restaurant in the evenings, and last night took a break for dinner. Had a tuna steak salad with vinaigrette dressing - something she's had numerous times before with all the same ingredients from the same kitchen. Went back to waitressing. All of the sudden her face flushes and feels as is it is on fire. Spreads to chest and arms. She's visibly red to everyone. Heart racing like she's just run around the block. Pounding headache. Next day she's fine, but wondering what hit her.

I believe I found it, totally by chance, wandering from diagnosis and medical sites and PubMed to online symptom checkers to trolling message boards. Any guesses?

I'll post my hypothesis tomorrow.

Passing strange

Among the advantages of being educated in an era that eschewed the classics in favor of lots of forgettable, but doggedly relevant, literature is that I haven't been force-fed lots of old books worth reading. So as a break from the present, I try to collate old must-reads into my never-fading book pile. These days I am helped by the fact that I'm too cheap to buy books for my new Kindle so I download the free stuff with great glee.

So I finally read Uncle Tom's Cabin this summer. Talk about low expectations. I was sure I'd get a few pages in and "delete." I was wrong.

Frankly, as clumsy and silly as it often can be, Cabin is amazingly provocative about human relations - and race. Not that anything about slavery shocked me - I went to "Black School" on Saturdays just like Jewish kids went to religious school and boy scouts to their meetings. But the observations on how slavery and differentiating people by race mangled everyone involved is actually quite fresh and, sadly, relevant. The scenes to watch for are not the long sermons or the stereotyped auction scenes - watch for the private interactions between people and some insights that even in 2010 people aren't willing to admit to.

I was particularly drawn to how little skin color had to do with it - being a white black person myself - and the hysterical descriptions of people passing for whites while escaping slavery while carrying a "dusky" secret or telltale tainted brow... Tragic mulattos, oy! But read George and Mr. Wilson in the tavern and tell me how often you've ever heard a black man and white man talk that way to one another - in reality or fiction.

Well worth the read, or re-read - and discussion. I'd love to get people to talk about race without the usual tiptoeing, preening, intimidation, and defensiveness. Living in both worlds I can tell you that the mutual lack of empathy is staggering and the selective mutism in the presence of "other" people is a shame. It may take massive intermarriage to really get rid of race, but I suggest the shortcut of actual engagement: awkwardly, stumblingly, risking offense and living with it as well. Maybe talking about Uncle Tom's Cabin is a good way to start - with 150 years of distance.

Book clubs: take the Uncle Tom's Cabin challenge. Read this book in a mixed race environment!

September 7, 2010

The last ten pounds

The last ten pounds are the roughest.

Any fool can get re-feeding started: patients and their families and hospitals do it all the time.

But that last ten pounds? Now that's a challenge. The patient has her spirit back and you won't be able to find any expert or quack to agree that it is an emergency if a meal is skipped or a few pounds are lost. The last ten pounds are when feelings come back like nerves on a burned limb. The last ten pounds are when family is 'over it' and the patient is not visibly ill any more and while the thoughts and feelings are enflamed inside the world outside is withdrawing its sympathy and "trusting" the individual to "use your tools."

The last ten pounds is when new clothes need to be purchased and a growth spurt starts and all the insecurities and losses of life take center stage and start screaming - they'd been on forced retirement.

The last ten pounds are when insurance isn't paying for much at all since they've been bumped off the DSM and the ER is just going to discharge you even if mom brings the patient down there.

The last ten pounds are not even necessary: you are out of "medical danger."

They are the ten pounds that tell your loved one's brain the famine is over, tell the hormones that reproduction is safe again, and tell bones to start re-building.

The last ten pounds is when ED is not just whining he's snarling and he knows no one sees him but the patient. He has promises and plans and he sees daylight and he's going for it.

The last ten pounds is when pressing forward gets hard and families repeatedly give up, give in, and argue with one another.

But the last ten pounds, I want parents to know, are perhaps the most important ones. They are the ones that require the most support from us and the time when real psychological recovery begins. They are the pounds that drag your loved one out of the malnourishment - not the first ten. These are the pounds that matter most, not least. This is the time YOU are needed most, not least.

How common IS parentectomy these days?

Pretty common! When an eating disorder patient is away at residential care, or hospitalized and visiting hours are limited or must be earned, that's still a parentectomy to me.

I know it is meant well, and I also know that some clinics do it because they truly think it works. I know there is a practical part to it when there are facility activities going on a schedule to be maintained. I know the policy is not meant to give the message to a child that their parents are optional, marginal, subordinate to the doctors, and a conditional element in their life. It isn't meant to blame parents for the illness or consider their influence toxic or unhelpful.

But here's what happens. When a clinic only allows "visiting hours" for parents for eating disorders it makes eating disorders different than other medical illnesses. That practice is largely gone in most hospitals, where parents routinely live in the hospital with their children and have unlimited visitation.

A parent at Around the Dinner Table put it well: "...if the child were in hospital for cancer and chemo treatment - would the drs use a visit from the parents as a bribe to get the medicine into the child? Sorry, you can't see your mom or dad until you take your medicine? It just doesn't feel right."

When patients lose "privileges" to see parents then parents stop being part of the treatment team and become a pawn. Consequences and rewards imply the patient is choosing their behaviors instead of UNABLE to comply.

When a child can choose when to see and when to send away a parent then the parent child relationship can easily become consciously manipulative. "I hate mom for making me come here and I feel like hurting her." "If dad is mad at me I can keep him away." "I feel guilty for making them stay at the hospital. If I don't eat they'll get to go home."

I believe access to one's parents is a human right, and that access to one's child is a parental responsibility. F.E.A.S.T. made a clear statement on this early in our history.

I'd like to talk all eating disorder facilities into ending this stance on parent visitation. We need your support in having our kids see us as part of the team and as interested in being there as we would if it was a burn injury or an infection. Even without the sad legacy of blaming and marginializing parents during eating disorder care it is bad policy to separate families.

P.S. This includes siblings.

September 6, 2010

Saving the best for never

I've heard this described in clinical terms, but Carrie offers a moving and spot-on description of a very familiar phenomenon. Carrie describes it beautifully and it clearly hits home with the readers, judging from the comments. This mental trap seems to characterize so many with eating disorders. I also think it exists in many people I know - and I see it in myself in some measure, especially under stress - outside of the issue of eating/activity. 
As usual, she found the perfect title as well: Saving the best for never

September 5, 2010

Espionage is a Risk

Writing about eating disorders can tempt you into, as you can see in my sidebar, pointless barking. It is difficult to write well, and beautifully, about issues that bear so much baggage and about which we so fervently want to change minds.

Amanda Skelton does, though, and in gorgeous and effective brevity:
Espionage is a Risk

Guisinger offers event in Montana

Dr. Shan Guisinger is offering an event of great interest - check it out:

September 24, 2010A Mind-Body Approach to Treating Eating Disorders
Missoula, Montana

Guisinger's "Adapted To Flee Famine" hypothesis had a profound influence on my thoughts about anorexia - I wish everyone was familiar with and would discuss it. A wonderful tool for discussing eating disorders with patients and their families!

September 4, 2010

Our own worst enemies

Once upon a time I thought that if parents just banded together to fight the myths about eating disorders and press for good science that we'd triumph and things would improve. One only needs to look at the autism parent community to be reminded that we are sometimes our own worst enemies.

My fellow blogger Kristina Chew, happens to have science on her side when she says Vaccines Don't Cause Autism, No They Don't but a glance at the comments on her post tells the story of how parents often act as the driver of change AND defenders of self-destructive information.

I wonder if there is any evidence or authority or paradigm change that can eradicate some of these ideas - like vaccines causing autism or parents causing eating disorders. Yes, these ideas started from professionals but live on often by means of parents carrying the banner. Even when the treatment field has moved on they end up fighting parents and advocates end up fighting the very people they wish to assist.

When I face professionals who are stuck in a parent-blaming or parent-marginalizing stance I feel free to face it down. It is harder with fellow parents. Some parents are stuck in self-blame, resentment at other parents, or the crab-bucket mentality. Other parents go off on wild tears in yet newer but no less damaging belief systems. This has to be part of the fight, as it is in the autism world, to face down these ideas no matter the source.

Read these lips.

See if you can watch this just once. I keep watching it, and I have other things to do! It's riveting.

Real time MRI video

September 3, 2010

Hope

Perhaps the most heartrending and miraculous phrase here is "two hours." Imagine those two hours. Imagine how often during those 120 minutes someone tried to get her to let go.

Miracle premature baby declared dead by doctors revived by mother's touch 

Save the drama for your mama

"I'm thinking of a new term which is "ed dramas"--all the little dramas that help ed move the focus to anything but eating and gaining weight--and there are so many to choose from: something is wrong with the scale, they didn't can't work with the doctor, interpersonal relationships are "toxic", the food doesn't taste good, the girl has always been slim, it's important to have normal teenaged activities, --anything else! BUT the main thing and most important thing that is so often sacrificed or put aside for these diversions is EATING. And unfortunately these tangential and diversionary tactics are often so effective, when used by a teen or family members who are not fully on board with the eating and gaining of weight. Losing the forest for the trees!"

September 2, 2010

NIMH · Microbes and Mental Illness

 Fascinating stuff - has the feel of something we'll later think of as "of course, why didn't we realize this before?"

NIMH · Microbes and Mental Illness

Science is not just a tug of war between two opposites, it is also a series of observations that add to what is known. Science is the most interesting story I know.

September 1, 2010

Visitation

I visited another eating disorder hospital unit yesterday. In our conversation about the services and schedule and parent visitation I learned an interesting and important item about insurance in the US. I was chafing at how parents are only allowed visitation for very limited hours (a total of six hours for children and five for adolescents a WEEK). It was pointed out that for insurance to pay for inpatient and partial hospitalization there are a specific set of hours required for each service offered: nutrition, physician, group, individual therapy, family sessions... and that this left few hours for visitation.

I'm curious to hear from parents, and from clinicians, how much insurance rules influence the schedule while in care at different facilities.

It goes without saying, for me, that access to parents and siblings is not only a human right but therapeutic and an opportunity for family education and support. When a child is hospitalized for an injury or non-psychiatric illness they generally - in modern hospitals - have rooming in for parents. Doesn't it strike anyone else as bizarre that psychiatric hospitalization would offer LESS time with family - the very people who most need to understand and support the treatment and the patient?

(A notable exception: Westmead offers rooming in for families on the eating disorder unit. Now this is the model I would like to see everywhere!)