July 4, 2011

Early intervention saves lives

"The outcome of anorexia nervosa is predicted by body mass index (BMI), physical risk, age and illness duration."

In other words the chance of recovery isn't determined by by "cause" or by "treatment modality" or by "motivation to change." It's successful intervention - catching it early, getting them healthy, keeping them in treatment.

We have to stop hiding from the fact that "Recovery from anorexia nervosa becomes much less likely the longer the illness has persisted."

The first three years are your window after which the chances of recovery are small. Really small. NO therapy has good rates of success after the illness has been in place for a while. Older patients do worse in Family-Based Maudsley and ALL treatments because they've been ill longer.

I say this not to depress or deter those who have not been able to intervene early, or whose first attempts at treatment were not successful - but to try to catch as many families as early as possible and beg them to act assertively and not delay. Don't whine, don't flinch, don't watch and wait. And don't settle for snake oil.

Parents new to this diagnosis: your chance of finding appropriate and effective treatment the first place you look is really quite small. The chance that you already know most of what you need to know is nil. When your loved one has an eating disorder your regularly scheduled life is cancelled, or should be, radically and for a long, long time. Anyone who tells you otherwise is not your friend. Will it be forever? No, unless you fail. And yes, parents CAN fail. Fail to act, fail to trust the right people, fail to do our own homework, fail to make the best decisions, fail to maintain the stamina to do what needs to be done.

I hear it all the time. "I wish I'd acted sooner." "I wish I'd known." These are really tragic stories, people. These are the same people who six months or two years earlier thought I was exaggerating and that their child wasn't that sick. They thought their local provider "connected" with their child or that it would "kill" their son or daughter to miss school or "I just can't bear to make her gain weight."

We don't say that about a tumor and we shouldn't say it about an eating disorder. I know that analogy offends people but until I find another one that will work to help people see that the early symptoms of an eating disorder are an OPPORTUNITY to intervene and not a milder form, I'm going to keep using it.

Does this mean give up on patients ill longer than three years? Hell no. These patients deserve even MORE urgency, not hopelessness or palliative care.

12 comments:

  1. You see, this is why I keep pushing on for recovery - posts like this. Stuff being depressing. 20 years I've put up with this crap. And that needs to stop. I need to be able to shout about this problem openly so people can see the reality of not providing support to loved ones when an eating disorder emerges.
    I wish I'd acted sooner too. I wish I'd known. No one's child should be left to suffer.

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  2. Gosh I wish my parents were like you.

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  3. It's worth noting that although the original FBT study (re-examined by Treasure here) showed younger patients doing better than older, in more recent FBT studies (Eisler, 2000;Le Grange, 2004; Lock 2005;Robin 1994) age does NOT appear to predict treatment outcome. Older adolescents do as well a younger. A case series (Chen, 2010) shows promising results for young adults as well.

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  4. Dear Laura, this is what I respect most about you and your commitment. I seem to remember over 16 months ago when you planted that firm but loving foot right up my butt. I needed that and I trusted you. I did do my research and it was a long confusing conflicting road of so called Ed specialists who did not support family based treatment in young adults. If it weren't for your support and wisdom, I don't know if we would be where we are today. A strong healthy young adult daughter living the life she wants and deserves. Nothing makes the hair Stand up on the back of my neck more these days than Ed providers who don't support FBT. This should be the first line of treatment in families who want to do what's best for their loved ones.

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  5. For some, palliative care is better than what they are currently receiving. And I, for one, am not offended by the comparison of eating disorders and cancerous tumors. Both can destroy an able brain quickly.

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  6. "Gosh I wish my parents were like you."

    Me, too.

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  7. Yes, I wished I had done things quite differently. I did have my daughter diagnosed early but spent two years with different talk therapists who were actually harmful before I finally discovered FBT. Why, oh why can't Maudsley be the first line of defense and more widely known . . . because traditional therapists don't want to change sadly - very sadly for our kids!

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  8. The Treasure and Russell paper is awesome. However, I must have been in pessimistic mode when I first read it because my initial thought was "without early intervention the sufferer is doomed". That was not the focus of the paper, but I guess that as a former long term sufferer I couldn't help but feel VERY frustrated with how the medical profession allowed me to go 20 yrs without treatment/help/support. I was treated by re-feeding in my teens, with professional guidance, but I never achieved a weight at which I menstruated and I relapsed in my 20s, to reach a critical state in my mid-late 30s.

    So sometimes I feel angry/frustrated/sad :(

    It is said that 'hindsight is a wonderful thing' (which it is...), but regretting what could have been is somewhat futile. I have more-or-less recovered from AN (recovery IS possible later in life...), though I'm left with 'scars' from the illness and some degree of emptiness in my life. I cannot help but wish I'd had the support I needed earlier; which was not only help with re-feeding, but helpwith the co-morbid difficulties that pre-dated my AN.

    *SIGH*

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  9. Cathy, I'm so sorry that professional field fails and continues to fail so many. This observation of the study is an understandable result but it is not a declaration of doom. While it seems logically that the longer the illness is allowed to linger,The harder, more resistant it is to effective treatment, taking the most effective course of treatment with the understanding that it might take longer and need tweaking is the important message for you and others who have suffered in poor inadequate even destructive care must take.
    We as people who have experienced this illness first hand can and need to take the message that early aggressive effective intervention dramatically changes the outcome of treatment.
    What I find most difficult is finding a way to communicate this to the Ed treatment providers who see me as trying to tell or teach them something they believe they have more education and background to understand, treat and evaluate. I want them to hear, I want them tounderstand aim not playing doctor but educated advocate which is in everyone's best interest if the focus is the patient bad not the ego.

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  10. For those of you who wish your parents were more like Laura, well, yes she is special, but I do want to let you know that parents are frequently affected, not only by the eating disorder, but the well meaning professionals who assume that all parents are toxic and they gave their child an eating disorder. These professionals do not give parents a way to help, they do not teach them how to care and guide them through their mistakes (and we all make them!). Many professionals seem to shame and blame parents into thinking they are inadequate to help their child. I know this from first hand experience. But fortunately, I wanted to try one more thing before I gave up and that was FBT. Totally turned our lives around. My daughter's and mine and OUR life. Her first therapists thought her dad was so toxic she should never see him, but the FBT allowed them to put their relationship back together and their relationship is very good.

    Don't let ed get you discouraged about yourself or your parents. I understand that everyone has a different situation but I always wonder what would have happened to my daughter if I listened to those first toxic therapists.....

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  11. Laura,
    At Kartini Clinic our experience (clinical experience based on over 1600 young patients aged 6-24) has been that outcome in patients under about 17 depends on two things: 1. severity of illness and 2. family unity with team. Even very ill kids get a great result if team and family are aligned together against the disease on behalf of the child. However, once a child crosses over into the 18 range, we think we observe that even parental unity with team can be trumped by severity of illness.

    Take away message: ACT EARLY to get adequate treatment for your child or young adult.

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  12. Julie, what's with the magic number of 18? This really burns me because as a parent of a young adult who was diagnosed at 18, there was nothing more frustrating and dividing than the perception that young adults don't benefit from family based treatment. I believe that if we had that support when my daughter became ill, her recovery could have been much sooner and a lot less costly. Today she is 21 years old and mentally and physically strong and healthy enjoying full recovery. 18 is not a magic number and so many of these young adults who have committed loving parents and healthy relationships before Ed, do suffer from some developmental immaturity related to the characteristics of Ed. Regardless, when the young adult is financially dependent on their parents, the intervention can be primarily the same . Evidenced based support and education for caregivers is crucial along with regular professional support for the family seems to me to be the first line of treatment. I wish this was practiced more..I bet we would see better recovery rates among youg adults and expanding on that, if adults who have languished longer had long term support by caregivers, I believe their recovery rate would improve too!

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