I apologize for not blogging about this sooner- I've been fighting off some sort of upper respiratory infection since Thursday morning, and my energy has been essentially non-existent. On the upside, I'm feeling tons better, so I suppose that whole "self care" thing does have something going for it.

The conference, "Working Together for Recovery: Families and Professionals as Partners in Eating Disorder Treatment," was this past Monday in Bethesda, MD, and every seat in the ballroom was filled. Many attendees were treatment providers from the greater Washington DC and Baltimore area, but numerous parents also attended. I think this gathering of minds in pursuit of a common goal--better treatment and understanding of eating disorders--should be happening more and more often. I hear a lot about the research/practice divide, which is the difficulties in transitioning research findings into better treatments in a timely manner, and conferences like this are one significant step in the right direction.

Besides getting to see my good friend (and conference organizer) Jane Cawley again, I also finally got to meet Harriet Brown in person, after nearly three years of email correspondence. I also got to meet another mom I had been writing for several months, and it was so wonderful to put names and faces together.

Dr. Walter Kaye spoke first, and a video of his presentation is below. It's just under an hour long, so make some popcorn and enjoy! That's what my parents and I are going to do tomorrow (what can I say? I got my geek tendencies honestly...)

Dr. Daniel Le Grange spoke second, and I would have loved to share his talk in its entirety. However, some of the research results he presented were still under embargo (a research journal's equivalent of a gag order), and if I blogged about it, his paper could be pulled. So, part of his talk will have to wait.

Another study that Dr. Le Grange discussed was published this week in the International Journal of Eating Disorders, titled "Early response to family-based treatment for adolescent anorexia nervosa." In this study, researchers determined that a gain of at least 3 pounds by the fourth session of FBT predicted disease remission by the end of treatment.

One significant difference from previous studies is how the researchers defined remission. Before, remission was defined as the return of regular menstruation and a body weight greater than 85% of ideal. However, there's quite a large gap between "not meeting formal diagnostic criteria for AN" and "recovery." In this paper, however, the researchers defined remission as regular menstruation and a weight greater than 95% of ideal, a much more rigorous definition of recovery and one that I wish more researchers used. Too much ongoing physical and psychiatric damage can occur in that netherworld between no longer officially "anorexic" and not quite recovered.

Le Grange and co. didn't do this study to determine which families to jettison after three weeks--far from it. The goal, says Dr. Le Grange, is to ultimately develop a sort of "FBT Plus," to provide extra support to those families who need it. If, by the end of four sessions, weight isn't increasing, then clinicians know that this family is likely to have more difficulties throughout treatment and should be provided with more clinical and outside support.

Lastly, Harriet Brown spoke of her family's experience using Family-Based Treatment.

You can find copies of all the presenters' slides on the Maudsley Parents conference site above.

Part of my current recovery plan involves drinking an Ensure Plus every day. I hated this idea. I felt guilty that they were so expensive. I felt guilty for drinking them. And I didn't particularly like the taste. The vanilla flavor was cloyingly sweet, my lips puckering with distaste as I drank. However much those animated commercials have tried to normalize the idea of drinking Ensure, every bottle I opened made me feel like a medical patient, that I was freakish and abnormal.

Except that I am a medical patient. I'm at home, but I'm still recovering from an actual illness.

I've learned that the Ensure Plus isn't all that bad. It's not all that good, but it's not bad. I tried different flavors- the strawberry and butter pecan taste much better than the vanilla (which is still gross to me). I worked with my dietitian to shift around my meal plan so that I could have an extra fruit along with my afternoon Ensure Plus, which my mom blends into a smoothie that almost lets me forget I'm having a supplement.

Logically, I know I need the extra calories. I'm having hot flashes from hell (hats off to all you menopausal women out there- you have my sympathy) because my metabolism has started to remember that my body will be fed regularly. I also know that with the amount I need to eat, having a supplement is much easier than eating the equivalent amount of food. It's also more convenient, considering life has been chaotic around here, to put it mildly.

I doubt I'll continue drinking the supplements even after I'm finished with weight restoration, largely because there are far tastier things I can think of to eat. But they're not that bad. And I know they're necessary. I can deal with that. It won't last forever and soon I will move on to bigger and better (tasting) things.

There's no easy way to write this, no way to make it less awkward and embarrassing (and yes, even shameful) for me, so I'm going to plunge on ahead and get it over with.

I've relapsed.
Big time.

My parents are coming on Friday to move me back to that mitten state in the Midwest, though I probably won't leave DC until Monday.

This relapse struck hard and fast and caught me completely off guard. Things really just started deteriorating in the past 6 weeks--just when I got the boot off and didn't have my handy (or footy) excuse for eating properly and staying off my feet--and by the time I realized the waters of anorexia were reaching up to grab me, it was too late. I was already soaked.

Events would have eventually come to light. The weight loss is blatantly obvious- to others, of course, not to me. I see the same scrubby redhead that I usually see. But during my therapy session last night, I got overwhelmed with guilt and grief and confusing and 'fessed up. I am profoundly grateful I have the best therapist in the world (no exaggeration), that my parents are willing to feed me again, after I ruined things, again. I am grateful I have so many people cheering for me, like Laura and others who read my blog.

But right now, I'm only feeling this gratitude in my head. My heart is full of shame and anger and resentment at Life, The Universe, and Everything and also, you know, me. I do understand that my eating disorder isn't my fault, but I also feel I should have known better. I was not so arrogant as to think that I could never relapse, that this couldn't happen to me. I knew. I knew, perhaps, too well. In the end, though, that's neither here nor there. I can't go back in time. I can't wave a magic wand and make this relapse go away as if it had never happened. Nor should I. I'm pretty much the opposite of a fatalist- I don't usually believe that "things happen for a reason." But I am an advocate of learning as much as you can from your life experiences.

I'm not going to waste energy that I don't have right now trying to understand what went wrong. I get the basics for now, and that's enough. I got really depressed and I let my defenses down. I became too depressed and too defeated-feeling to push myself to eat what I needed to, and so the passive restricting started. I wasn't seeking to lose weight. I wasn't trying to fuck myself and my life over one more time for old times' sake. Something threw my brain into anorexic mode, full steam ahead, and that was the end of that.

So I'm going home, back to the magic plate and refeeding and all of the crap I thought I had washed my hands of. I will wash my hands of them again. It will take time, lots of time, and patience and food and love. I have to believe that, however improbable it may seem to my malnourished brain at the moment.

But my blog isn't going anywhere. It's been my sanity lifeline.

...but the byline was better.

Check it, kids: the Washington Post actually let me write for them. I convinced them to run a special article for Eating Disorders Awareness Week, on using Maudsley Family-Based Treatment.

Extreme Measures: A Girl's Suffering Drove Her Parents to Explore New Treatment

A special thank you to all those who let me interview them and shared their stories.

A very important new study just came out of work done in Sweden on Family-Based (Maudsley) Treatment of anorexia in adolescent girls, titled "A Pilot Study of a Family-Based Treatment for Adolescent Anorexia Nervosa: 18- and 36-Month Follow-ups."

After 36 months, over 75% of the patients were in FULL REMISSION. And almost as importantly, "they experienced a less distant and chaotic atmosphere in their families." This, to me, points to the fact that a baffling, life-threatening illness can wreck havoc upon even the most loving of families. The restored health of the sick child greatly improved family functioning.

This study should be a must-read for treatment providers.

I think I've expressed my opinions frequently about the role of food in eating disorder recovery. You need to eat first. Before anything else. Before everything else. Because life isn't all that fun when you're starving. You can't solve problems very well with a malnourished brain.

Food is medicine.

One of my classmates had strep throat a month or two ago, did her week-long course of antibiotics, and recovered just fine. Penicillin was her medicine. But her immune system also had a role in this- gobbling up the dead bacteria, modulating all of the chemical signals that might otherwise have sent her into shock, keeping her cells in balance.

Penicillin was her medicine. Food was mine. But penicillin wasn't enough for her. And food wasn't enough for me.

Yet another tale. I met a woman (S) shortly after I was first diagnosed with anorexia back in 2001. We were in the same support group and quickly became good friends. Although she was in her mid-30s at the time, this wasn't her first bout with an eating disorder. When she was in high school, she also suffered from AN, somewhat briefly. Long enough and bad enough to meet the official diagnosis, but eating disorders weren't on people's radar screens back in the mid-80s the way they are now. She had siblings with mental health issues of their own, as well. But soon she was home sick from school for an extended period of time, and her mom, she said, made her eat.

And her eating disorder did go away. For a time. Yet 15 years later, the old behaviors came creeping back.

Some who criticize the Maudsley Approach, which treats food as medicine, might say that this means eating disorders really aren't about food. If they were, my friend S should have been cured.

Right?

My guess is this (I haven't asked S about it, so I can't say for sure): S quelled the AN voice by promising that this eating, this indulgence, this gluttony, was only temporary. Soon enough, she might have said, I will be back with you.

It's what I said every time I was in treatment. Obviously, I knew I had to eat in the hospital. I didn't like it (especially because the food sucked), but I did it. Part of it was the grim inevitability of it all: eat or be tubed. Yet it was easier than doing it at home, and not just because of the support. It was easier because I knew it was temporary. I'll use the damn butter, drink the whole milk, eat the pizza but only while I'm here. When I got home, I knew I would go back to my old habits.

When I began eating at home, it was harder mentally because I knew there was no getting out of it. I would have to start making peace with butter, because it wasn't going anywhere.

Part of the difference between S and I was that I had a diagnosis. I had support. She did not. S didn't know the cruel voice was anorexia, and she didn't know how to fight it. She didn't learn how to nourish her body properly, even when her brain was telling her to starve. And she didn't have to face the inevitability of butter.

That might be, in part, why bringing my recovery home was so important: I learned to survive the peaks of anxiety. I rode the waves and survived. The butter itself was more important than just a source of much needed fat. It was the knowledge that I could eat it and life would go on.

I still feel guilty about all of the needless suffering my parents went through in the 6.5 years between my diagnosis and the start of effective treatment. I do know it wasn't my fault- I'm getting a teensy bit better at that.

But a diagnosis of an eating disorder in a child is often confusing and (when you start reading) kind of depressing. Don't get me wrong- an eating disorder is a life threatening illness. But there is also hope, and that's what we all need to cling to as the world gets tipped upside down and shaken like a snow globe.

Laura Collins says it best (from her forum Around the Dinner Table). It's what I wish someone would have told MY parents when I was first diagnosed:

It is not her fault. She is not choosing to do this, to feel this way, to think the way she is. It is a disease - a brain disorder.

It is not your fault. You did not cause it and probably could not have predicted it (unless you were an eating disorder specialist). It was a genetic predisposition that got set off by something (probably malnutrition or energy imbalance due to exercise).

It is fully treatable. With quick and assertive intervention, full nutrition, a lot of emotional and practical support, and time (many months) your daughter can not only recover her health she can be protected from eating disorder in future.

You will get a wide variety of clinical advice. Much of it will be mutually-exclusive. Some of it will be absolutely wrong. The world of eating disorder treatment is undergoing a massive change and that means you have to seek and secure the best care possible. Do not depend on clinicians to tell you what other clinicians offer.

The best evidence for effective treatment of adolescents living at home is "Family-Based" or "Maudsley" treatment. It is not widely available. Some old-school clinicians even advise against it. Research this approach, as others have said, and make up your own mind. It is worth travelling further to get the right treatment for your family than staying close to home and getting inadequate care.

You will be okay. Your daughter and your family can beat this. Do not believe anyone who tells you this is hopeless or that you should sit back and wait or watch - they are wrong.

For the majority of the first seven years I spent in therapy for anorexia, I was told to look at "why."

• Why had I gotten sick?
• Why was I still restricting?
• Why did I have "enmeshment" issues?
• Why couldn't I move on?
• Why was I obsessed with my body?
• Why was I obsessed with obsessing?
• Why wasn't I choosing to get better?

I was told I was out of control, that I wanted to be IN control, that my mother loved me too much, that I was afraid of growing up (or my boobs or guys or school or...). I was afraid of failure, that was true. But I didn't restrict as some sort of self-sabotage. I found that a load of BS. And I found it odd that a parent could love their child too much. Could they be overprotective? Yeah. Yet the therapists were "experts" so I went about convincing myself that my mom and I were too close and we needed some "space."

Ed loved this. The questions, the analysis. He totally ate it up (pun intended). It was a perfect way to keep him near me. I would ponder the questions and talk and try to feel...and still I would restrict what I ate, purge, overexercise.

I wasn't choosing recovery. I wasn't trying hard enough. It was my fault. No, it was my parents' fault. If they hadn't loved me so much. If they had emoted more freely. If they hadn't been so controlling.

Now, I've come to stop asking why.

IrishUp, a mom using the Maudsley Approach, posted this on Laura Collins' blog:

Let's change the paradigm and look at it: You have a 60yo white male, who wakes up one snowy morning, digs out his car, and in that process BANG - heart attack.

Now, when he gets to the EW, and starts being evaluated, is anyone saying or even thinking that it was the snow shovelling that CAUSED the heart attack? NO, they're thinking that coronary-artery disease (CAD) CAUSED the heart attack. They know perfectly well that that snow-shovelling was the activity that started a cascade of physiological changes, which a healthy person would have easily accomodated, but in this case resulted in a disease event.

Now it's true that a variety of things contributed to developing the CAD in the first place: Genetics, age, metabolic function, lifestyle choices, life stressors, etc. But nobody waits to tease out the relative contributions of each BEFORE treating the guy. The medical team is acting immediately to restore as normal function as possible using every best medicine available. They know the longer the right therapy is delayed, the worse the long-term outcome is. Now, sorting out better lifestyle choices, etc, might be incredibly useful at some point, but medical intervention doesn't hinge on it. Effective treatment isn't withheld until the patient or family has insight as what they may done to contribute to that heart attack. Or until the patient declares "I'm going to choose to minimize my CAD".

And on the flip side - how effective can you imagine medical treatment would be if the snow-shovelling WERE taken as the problem? He'd get worked up for all the wrong things, and advice like "don't shovel, don't be active" might actually make the underlying disease worse. The poor guy would almost certainly be doomed to have another heart attack, because while his symptoms were being addressed, the CAD would be going untreated.

The trigger of a disease event is a different thing altogether from the disease process. It's a "necessary" for disease to manifest or develop, but it's not sufficient to cause disease. The meaning we find in our lives for who we are and what happens to us is surely related to those experiences, but they are not the same thing as each other. How we understand the world is subjective, and shouldn't be confused with the information we use to come to that understanding.

So Laura beat me to the summary of our day together by a long shot. This is not to say (I hope) that my mom and I enjoyed it any less than Laura.

I got to meet the whole Collins clan: Laura's husband (Samuel), her son (Elijah), and their two (enthusiastic) dogs. And, I even got to see the famous dinner table, around which Laura hosts her internet forum for parents.

I think the table at the Collins' house is quite the metaphor. It's an old wood table, worn but sturdy. It's like a lot of families: not perfect, not necessarily a work of art, but capable of bringing people together. The table at my parents house when I grew up, they got as kind of a cast off, either at an auction or it was dumped by the side of the road*. My dad painted it yellow to hide all of the dings and scratches. The chairs were all slightly different heights. Not a perfect table, and certainly not a perfect family.

But that's the beauty of it, and the beauty of the Maudsley Approach, which gave me my life back.

Thank you, Laura and family, for helping with that. And your bread is fantastic!

*This should answer the question of where I got my Salvation-Army-chic decorating sense.

I love that people are beginning to treat eating disorders as actual illnesses, rather than just portraying sufferers as fashion victims. It's true- I've been a victim of fashion myself, but of the horrific mid-1980s styles of mall bangs and fluorescent sweatsuits. And tight-rolled jeans.

But that had nothing to do with my anorexia. Completely nada. I never read fashion magazines, and I still don't. I will occasionally steal them from my therapist's office because they make great material for collages. But otherwise, no. I'm much more of a Scientific American and Time kind of girl.

So it was with great joy that I read in the news headlines that the US National Institutes of Mental Health has announced the launching of a major study on anorexia throughout the US. A better understanding of the underlying biological causes will create better treatments and a better understanding of what goes on in an anorexic's brain.



Much of the current research on anorexia is being conducted at UCSD by Walter Kaye. While this is really cool stuff, what's better is that he is translating it into concrete treatments for the disorder. Treatments that can be measured and used by people, even those without insurance. I'm speaking specifically of the Maudsley Approach, which treats food as medicine. And while using Maudsley doesn't guarantee your child will recover- nothing really does- I can say that you won't recover if you don't eat.



That's why Walt's my homeboy.

About a year and a half ago, I began a rather short-lived stint as the TB Program Coordinator in my state. I had focused on tuberculosis (TB) as part of my master's thesis, and then took a job in that area. Part of my job was developing programming to "encourage" TB patients to take the full course of their antibiotics. And if they did not go gently into that good night night, then I had the authority to sign a court order to hospitalize them against their will. Which I did, several times.

Many of the people diagnosed with TB (at least in the city where I was) were addicted to drugs, typically crack cocaine. In an addict's eyes, crack is much more fun to take than isoniazid or rifampin, the two major first-line drugs against TB. Also, at a course of treatment of 6 to 9 months, it's hard to obtain compliance from anyone, let alone someone who abuses drugs or alcohol.

However, there is a treatment called Directly Observed Therapy (DOT), where a public health nurse goes to your house (hotel, crack den...they're usually not very picky), meds in tow, gives them to you, and watches you take them. Pat on the back, see ya tomorrow. Often times, incentives are used. Such as, "Meet me at Dunkin' Donuts to take your meds, and I'll buy you a coffee and doughnut." To a homeless guy, that's a treat, and you'd be surprised at the levels of compliance little things like that can bring.

Though DOT does try to educate the patient about the importance of taking antibiotics regularly, it does not need that in order for the program to succeed- that is, for the patient to continue to take their meds, as prescribed, until it is determined that treatment is finished. One of my nurses told me "I'd tell them they were dropping acid if I thought it would get them to take their pills." This is also the woman who called me "toots" and "babe" on the phone and wore a purple velvet cowboy hat, so go figure.

The similarities to the Maudsley Approach for treating anorexia are almost too similar to ignore. The point with DOT- and with Maudsley- is for the sufferer to take their medicine, whether it's antibiotics or food. They don't have to like it, they don't have to agree with it, they don't even have to think it's necessary, but all measures will be taken to see that they do. Another interesting aspect of DOT is that all responsibility for treatment compliance is on the shoulders of the health department, NOT the patient. It's rather similar in Maudsley- it's up to the parents or carers to see that the sufferer eat, NOT the sufferer to rely on their own devices. And, there are firm backups in place. If you continually refuse your medication (typically by not showing up), we'll put you in the hospital. Ditto for Maudsley.

You have to take your meds. Period. You do not negotiate.

Certainly, the public health nurses will negotiate if they want Dunkin' Donuts, Tim Horton's or Mickey D's coffee, where and when they want to take their meds...but you have to take your meds. Maudsley is the same. You can have fried chicken, hamburgers, french fries, ice cream, and carrot sticks. But you still take your medicine.

Now if only bribing someone with anorexia to a trip to Dunkin' Donuts would work...