September 3, 2011

The good news on college

All right, so I was a bit depressing in yesterday's post. I even committed the great sin of casting doubt on the long-term prognosis for Family-Based Maudsley. I used broad numbers that are anecdotal, which wasn't fair either. So, if you can bear it, the rest of the story.

I'm weary of parents coming back to the ATDT community and my inbox whispering about something that needs to be discussed more openly: the need to remain involved and vigilant during the transition to independent living. There is an acute sense of "what did I do wrong?" when a loved one starts to relapse that needs to be answered.

It also needs to be said that the rates of relapse for those in traditional treatment are well-known: greater than 2/3. The numbers of people I know who have kept a hands-off this is between you and your therapist and don't you want to finish your salad, dear, approach not only see their loved ones relapse it is considered normal and expected! We can't even call it "relapsing" for most patients because they've never actually gained full health: maintained healthy weight and behaviors and thinking for more than brief periods.

I really see a problem out there where families who HAVE done all they can, and well, and worked with outstanding clinicians, drop it all at 17 or 18 during Freshman Orientation. I may be more sensitive to this because I did it myself, but still, the pattern is really common.

I am calling on all of us to "snap out of it." Let's lose the fiction that the ED predisposition goes away with recovery. It doesn't. It certainly seems to lessen and have less control the more time passes in good health but a big factor in that is the habit and structure of living without ED.

Two, to be a bit stronger against the "normal" drumbeat. It isn't normal for someone who has a history of an eating disorder to go off to the greatest transition of their young lives, the greatest exposure to disordered thinking and eating, the off-the-cliff change from family meals to dining hall, an open spigot of alcohol, new routines, mountains of decisions, social uncertainty, and academic competition - without hearing the Siren call.

Three, there IS more most families could be doing but we're afraid to do it. We feel pressured, unsupported, obnoxious, and disloyal - but it may still be the right thing to do. We wait and wonder and worry. I'm saying that having that family-centered approach to treatment and maintenance can and probably SHOULD extend to the college years and we need to give one another permission to do it.

I'll also confess to this, because I know I'm not alone in it and it may comfort others to hear it: I had a bit of a chip on my shoulder. I wanted people to look favorably on our family's approach and to prove that we were not, in fact, overbearing and enmeshed - that our involvement in her treatment had been temporary and that we - more than other families - were able to let go and watch her fly because we were so wonderful. I confess to wanting to be the good, compliant mother.

Dumb hubris. Dumb hubris made easier because we got so little encouragement from other parents or professionals to be more proactive. I'm just one mom out here but I want to be the fellow parent saying to you that your instincts matter and it is okay, if you see fit, to take a more involved role and even to say no. It is okay to go down to school for a visit and, seeing signs of concern, withdraw your loved one kicking and screaming. It is okay to have a contract in place, to require doctor checks and verifiable therapist visits, to require calls home, visits, meeting with RA - whatever YOU need to feel fully confident.

Here's the good news. I see really great results from families who do take a more active role and put protections in place and those who step in without ado as needed. These are the patients who struggle a bit and then get back on track. These are the families who can remain confident and supportive of and the expected wobbles don't turn into full scale protracted relapse.

9 comments:

  1. Did I read that statistic correctly? Don't you mean that more than 70 percent in traditional treatment relapse?

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  2. Another great blog, Laura. And yes, Wendy, the 70% is the statistic that I have too. The traditional revolving door of inpatient and to expect at least two relapses before my daughter "would want to get better" were the numbers given to me. I was also told that only 35% make a full recovery. Scary.

    I do strongly feel we need to drop the shame and stigma, as parents and carers, talk about it openly, discuss it with not only our friends and family but with teachers, policemen, judges, nurses, doctors, etc. Perhaps then there will be a wider safety net to help catch them before they fall. We did not cause it. They did not choose it. We can ALL help to keep them safe.

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  3. Not only can I "bear" reading the rest of the story, I LOVED reading it. Keep it up, Laura. You are tellin' it like it is.

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  4. Wendy's right, I meant only 30% fully recover. I fixed it, thank you!

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  5. "Let's lose the fiction that the ED predisposition goes away with recovery."

    Thank you for this. I wish more people understood.

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  6. I agree, but I have friends who wouldn't like this post. One friend in particular has been in recovery for several years and feels insulted when anyone suggests that full recovery - without any potential for relapse - isn't possible. That's how she would read this. My view is the same as yours, as far as I can work out: I'm in full remission but I have to be careful if I get sick or stressed out, because if I didn't eat properly for a few weeks my brain would be affected and I'd be very vulnerable to relapsing. I make that prospect far less likely by taking extra care to eat enough when I'm ill/stressed and by keeping one eye on my relapse prevention plan, but I don't believe that predisposition goes away. It can be made dormant, but not destroyed.

    But then, neither myself nor my friend are psychic, we don't know what our situations will be in ten or twenty years time. We might never relapse again - is that full recovery, or is it just the result of good insight, good planning and good follow-through on those plans? In some books I've read people have talked about how they full recovery and gone on to say "but I have bad days" or "but relapse is normal" and I'm like...eh?!

    I'd rather shoot for full remission with added vigilance than put myself at risk of relapse with wishful thinking. I'd better not tell my friend that either though.

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  7. I think that a big part of relapse is the lack of quality longterm support for sufferers. I realty believe these programs have high relapse rates because of costs and insurance and lack of understanding of FBT that teaches the family to care for a nd support the sufferer for the long haul which can for many be 1-2 years. I do think that there will always or often be setbacks as part of he learning and growing process but I don't see them as relapse

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  8. When my daughter was stuck in, as Charlotte put it so well, "the traditional revolving door of inpatient", I clearly heard that it took an AVERAGE of 3 admissions before patients "choose" recovery!

    My daughter is now a sophomore at a small liberal arts school far enough away that she's "away" at college, but close enough that she can be reached easily if needed.

    Before she started her freshman year, we worked hard to get a plan in place. I visited the Health Center to request that they {blind) weigh her weekly and call the number to me (this transitioned to them phoning her nutritionist). The head of the Health Center was impressed that so much care and attention had gone into planning for D's transition. Throughout the year, according to my daughter, the personnel there have been wonderful: helpful, friendly and caring.

    She had a meal plan in mind for the initial adjustment phase and a local therapist to see weekly to continue working with on her anxiety, insecurity, and lack of self-esteem. I wish we'd been able to find someone with Maudsley or FBT experience, but the therapist we found seems to be a good fit for these issues and she was far enough along in her recovery/remission that this focus suited her needs.

    Daughter clearly understood that, if she lost more than X lbs., the "team" (with me as the leader) would have to determine what could be done up to and including taking her out of school.

    After about 2.5 years of "traditional" treatment and almost 2 since we implemented FBT, she still exhibits a number of eating-disordered behaviors that I would love to see "go away".

    Now, however, she is petrified about losing weight! As she puts it, "I don't want to go back there." When one of her teachers mentioned that she seems to have lost weight, I got a frantic phone call. Fortunately, she could think of several actions to take to counter any possible trend, and she did "the next right thing" as the FBT therapist said.

    I am eternally grateful that we found the help we did when we did it. She is thriving at her college and I felt as confident as I could when I took her back a few weeks ago. (Sorry for the long post.)

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  9. We are currently about one month into the college transition with our youngest son. He began to lose weight at the end of the summer before his junior year in high school right when varsitiy soccer pracitice really began going full tilt with the "two a day" practices. He and his older brother always did sports and at the beginnings of the seasons (especially the fall season when it was still very hot outside and practices were crazily intense) the kids always lost some weight .... so it took until a couple of weeks into the school year for alarm bells to go off for us .... and so our journey with an eating disorder began. We've spent the past 2 years doing the acute hospital stay at first due to unstable vital signs; progressed to a teaching hospital's ED day program (he was the only boy so it was not a good fit) ; switched to doing 2 visits /week with a nutritionist specializing in ED and a counselor (both female) - this quickly went downhill and we had to have him admitted to a psychiatric hosp with an ED unit for 2 weeks (a total and complete nightmare - but he started eating again - mostly to get out of there); since then he has gone back to the teaching hosp day program x 1 week (again, all girls and he would eat like a champ for them so they would let him go back to his local counselors that he saw in the evenings after school); treading water, treading water .... no real progress being made ..... found a male psychologist about a year ago who our son seems to better relate to ... have done the family meetings, etc ..... Got through senior year of high school, including the prom and graduation (phew!) ; Over the past year son has gone from anorexic behaviors to bulemic behaviors (and throw in some OCD for exercise) .... so we're still "in it" .... he continues with his local psychologist and has check ups at the teaching hospital ED unit with their MD and psychiatrist. He is currently living at home and commuting to a local branch campus of Penn State (this is what his older brother did x2 years before heading out to main campus where he is now a senior - he opted to stay home x 2 years because at the time both boys raced dirtbikes and if he went away to school and lived in a dorm he would have to leave the dirtbike home and miss races .... so, glad THAT priority has changed for him!). Anyway, our younger son is in college, but living at home - he is definately not ready to be away from us due to the ED - he even said the only way he would go away to school is if he could have his own apt with no roomates - due to his binge/purge cycle , etc I'm sure is the reason. So, we continue with the weekly blind weigh ins by the RN at our family MD , plus the bi weekly psychologist appts, and the monthly check ups at the teaching hosp ED unit ..... and hope and pray that after another year at home, he can make the transition to college away from home and leave the ED in the dust! (sorry such a long post) .... thanks for listening!

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