F.E.A.S.T's Around The Dinner Table forum

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Colleen
Hi all,

I realize that a lot of members don't really know my story since I've been here now for eight (8!) years.  But May 5 is an important day to me.  On May 5, 2008, her little sister whispered to me that she heard d throwing up after dinner.  That's how I realized she had an ED.

In a way it was the worst day of my life.  It changed everything.  We went to the seventh circle of hell and we were there for a long, long time.  But in another way, it's a day to rejoice.  It's like the opposite of the day on my d's tombstone--it's the day that we sprang into action and stopped our d from dying.

I started chronicling this anniversary a few years ago.  I'll pull up those updates and paste them here, as the original thread is dauntingly long.  This isn't a quick or straight-line recovery, and so it seems pretty typical in many ways.  Periods of recovery and sudden relapses.  Maturity and insight--and relapses.  I offer this as just one example of one family supporting their beloved child through recovery and into adulthood.  Our mission statement was and always will be:  "D's Full Recovery".

Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
2011:

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May 5, 2008.

It was three years ago today that my youngest came to me and whispered urgently:  "Mom!  I heard sis throwing up after dinner."

The scales fell from my eyes and I instantly understood what had been going on for the past several months.  We had watched our happy girl get thinner and thinner and more withdrawn with nothing but sympathy and concern.  It did not occur to us that she had an eating disorder.

May 5, 2009.

Our d had been w/r for eight months and was doing quite well.  She had been feeding herself with no oversight from us for nine months.  She could eat freely and intuitively.  She was excelling at school and doing well socially.  In many ways to the outside world she looked 'recovered.'  But her hostility could only be described as psychopathic, and it was all directed at me.  Her therapist couldn't seem to address it in any effective way; there was a hint of 'oh well, that's life', shrug shrug.  But I was overwhelmed with grief that year; I looked at May 5 as the worst day of my life.

May 5, 2010.

We date our d's true recovery to Labor Day weekend, September 2009, when she and I spent a long weekend together on the Oregon Coast.  This was my homemade DIY exposure therapy for her--she surely couldn't maintain her phobia of me if she was forced to be around me 24/7, could she?  In a beautiful place like that?  As we poked around the shops, she was tickled with the idea of hand-knitted socks.  We bought yarn and needles and spent the weekend knitting--on the beach, in town, watching movies in our cabin.  It allowed me to sit close to her (she was still touch phobic toward me) and be the guiding and loving mom I've always been.  We were knitting socks but we were really knitting up our relationship.

And on the next May 5, Laura Collins invited me to be a moderator ATDT.  In humble gratitude to ATDT and to honor my d, I happily accepted.

May 5, 2011.

My d is in her second year at university now.  She's sharing a dump of a house with nine other students and loves it.  She feeds herself, works part time, and manages stress in a healthy way.  She's sooo happy--back to that happy girl we knew before.  So funny and quick.  So caring and empathetic.  She knows how important nutrition is for her--she does not want to go back there.  She's still doing dumb college-age things now and then, but overall, she is thriving.  She tells me she feels perfectly normal--she does not have any ED thoughts or temptations.  SHE LOVES HER LIFE.

I told her:  I used to think of May 5 as the worst day of my life-the day my life and our family life went to hell.  But now I think it was the best day of my life.  The BEST!  My d was already in hell.  May 5 was the day I was summoned to go get her.  What if May 5 hadn't happened?  I am SO GRATEFUL for May 5!!  It was the day that my beloved daughter stopped dying.

So this May 5, I just wanted to tell you all just how grateful I am that this forum exists.  That parents hang around here to help others through.  That I got life-saving advice so I could help my d.  I am just humbly and profoundly grateful.

Happy Cinco de Mayo!!!  Best Day of My Life.
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
2012:

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May 5, 2012.

D continues her recovery with some better knowledge and mindfulness.  She inadvertently lost 15 lbs fall quarter this year (the kitchen in her new college dump was very inconvenient, it's not as social as last year, etc).  She gained it back quickly, only to lose 10 lbs during dead week and finals at the end of winter quarter, probably due to a very chaotic schedule of all-nighters and sleep-ins.  She's gained that back too.

What it has taught us:  that d's AN seems to be neurological rather than psychological.  That her appetite trigger is faulty and overreacts to low nutrition.  As long as she keeps her weight above 170, all is well.  If she misses a meal or two, or eats sporadically, or eats smaller amounts, her fullness cues ratchet down.  She feels fine; she acts fine; she eats 3 meals and snacks; but she gets full quickly, doesn't eat enough to maintain and she loses weight.

Once she is aware of it (and she is informed of the consequences!), she is able to gain the weight back on her own.  But as she does, it all hits the fan emotionally.  She goes through the usual stages: depression followed by agitation/anger/paranoia toward me.  We have kept our defenses in place--she has to call me every day, she has to see me every week or two, she has to hug me, etc--all those very weird things we set up to combat the hostility she feels as a type of exposure therapy.

I celebrated Cinco de Mayo with her tonight with burritos and frozen yogurt.  Lots of good food and even better--laughter and love.

She is doing great.  She has learned a lot from this relapse.

Hang in there, everyone.  It keeps getting better and better!
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
2013:

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Fire up the blenders, friends--it's Cinco de Mayo again!

(Okay, it's only May 4, but I'm hoping I'll be spending the day with my girl tomorrow!)

For all of you who feel discouraged, I'll continue these annual updates.

D continues to maintain her weight this year after her bobble in 2011.  She's done this on her own with accountability to us.  She weighs herself, texts us her weight, and we randomly corroborate.  She recently graduated from university (a quarter early).  She's told us she wants to do this on her own now--and we are letting her do that.  It's kind of scary, like letting go of the bike after taking off the training wheels.

She had a great housing situation this year, sharing a house with her best friend and three other girls.  Now that she's done with school, she's anxious to get out on her own and start her Real Life.  We moved her this week from her student digs to a really nice little apartment in the heart of the city.  She's working full-time at a job with benefits.  She's been dating her nice young man for two years now.  She's happy and optimistic, back to her emotionally flexible self.  Her relationship with me is strong and joyful.  ALL GOOD.  The best thing is that ED is nowhere to be seen--no thoughts, no limitations, no behaviors.  The future so bright she has to wear shades!

RECOVERY IS POSSIBLE!
 
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
2014:

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Happy Cinco de Mayo!  This is the day, six years ago, that my youngest d came to me and ratted ED out on her beloved sis.

D has had a busy year.  She loved living in downtown Seattle, had a fulltime job, saved money, got bored with the job, adopted a puppy.  In Feb she decided to have an adventure with her boyfriend.  They are in Beijing; he is teaching English while she learns Mandarin, sightsees and takes photos.  She traveled on her own to Thailand and Malaysia for a few weeks last month.  Her best friend is traveling to Beijing next month and they are going to spend 3 weeks traveling around China together.  She has always been an adventurer and this feels like the right kind of life for her!

Do I still worry about her?  YES.  We Skype--and I can tell you that Skype is a lousy way to try to assess health.  She is happy and bubbly; she knows (when she is healthy) what she needs to do to maintain her health.  When she starts losing weight, she loses that vision.  Y'all know how tricky ED is.  Happy and bubbly is good but no guarantee.  So yes--I worry.

She will be back at the end of June before starting her next adventure.  Boyfriend starts grad school in the fall, and she is going to make her plans.  I can't wait to see her again!

Her puppy turns one year old next week.  She is sitting here in my windowseat keeping an eye on the neighborhood.  We have never had a dog and she is a real challenge to us, in all the good and bad ways you might imagine!  She keeps me connected to my girl across the miles.

But really, my girl is doing great.  She is making her own way in life, creating the life that ED wanted to steal from her.  She is healthy, happy and loving.  LIFE IS GOOD.

For all those in the trenches, hang in there.  There is hope.  I wrote this three years ago and it's still true:

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I used to think of May 5 as the worst day of my life-the day my life and our family life went to hell.  But now I think it was the best day of my life.  The BEST!  My d was already in hell.  May 5 was the day I was summoned to go get her.  What if May 5 hadn't happened?  I am SO GRATEFUL for May 5!!  It was the day that my beloved daughter stopped dying.

So this May 5, I just wanted to tell you all just how grateful I am that this forum exists.  That parents hang around here to help others through.  That I got life-saving advice so I could help my d.  I am just humbly and profoundly grateful.

Happy Cinco de Mayo!!!  Best Day of My Life.

Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Colleen
2015:

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It's Cinco de Mayo again!

It's been a roller coaster of a year.  Sigh.  I used to like roller coasters...

D was in China at this time last year--four months in Beijing with her bf and then a month of traveling with her best friend.  I kinda suspected all was not well when her communication with us became more and more infrequent.  Oh, that spidey-sense!  When she came back in July, she was significantly underweight and highly irrational...we were all scared.

I'm hesitating over how much to tell.  I'm going to opt for 'vague'.  Things were very difficult and her plans were...completely crazy.  She spent thousands bringing home a difficult dog from China only to have to give her away (luckily she found a good home for her).  And that was just one problem.

Things were terrible.

This time around it wasn't just *me* who voiced their concerns.  Our entire family was united in our fear for her, and we told her so.  That made a big impact, hearing it from sis and bro and dad.  We made it clear that ED could not live with us.  She was irritable and angry but she started eating with purpose--most of the time.  And she gained weight.

She found a job about 2 hours away from us.  A nice entry-level job, but hard physical outdoor work.  When she started in early October, she was probably pretty close to w/r.  Her mood was good--life was good!  She was excited about her new job and things were well between us.  She found a terrible but hopefully temporary place to live (an RV on someone's property).  She lowered her housing standards from "private cabin in the woods that accepts dogs and costs less than $400/month, preferably with hot tub" to "being able to stand up straight indoors"!  She came home on her 3-day weekends and we fed her up with food and love.

Things were great!

Shortly after Christmas, the hard work and 10-hour days started to take its toll.  She very very slowly started falling behind.  It was hard to find a new living arrangement.  She stopped coming home for weekends.  She was having trouble managing money (a symptom for her).  Her weight was dropping.  This happened slowly, s-l-o-w-l-y, but inexorably.

Things were getting bad.

It finally hit a critical point a few months ago.  She was irritable, brittle, irrational.  She was lying about insignificant things.  We started seeing ED behaviors when she was home, and she was definitely not near her target weight.

We took a walk, the two of us. When I brought up examples of her recent behavior she became angry and defensive--I realized (AGAIN) that it feels like I'm criticizing her when I point out the ED behaviors I see.  Not helpful.  So I changed the subject to a brain imaging study I'd recently read.  I said, "You know how some people lose weight first around their face, or their boobs?  People with AN lose weight in their brains."  And went on to talk about the study.  It showed that people who were underweight had smaller brains.  Not only that, but the composition changed--the gray matter thinned and the skull filled the gap with cerebral fluid.  The good news is that the volume returns with w/r.  We don't know what happens to neural pathways during this shrinkage and swelling.  I wondered how much this interfered with the normal process of brain development.  Since our brains continue to develop till about age 26, I wondered what impact that had on prefrontal cortex development.  Would it just be delayed?  Or would that window close, like kids who don't hear in their first years of life?

She was argumentative.  She accused me of seeing ED everywhere, the usual stuff.  I kept my voice low and calm.  I finally said:

"After my dad died of brain cancer, my mom beat herself up for years with "I should have noticed X and Y!  Looking back on it, I can see all the red flags--why didn't I say something or do something?  I could have intervened earlier!  Taken him to the doctor!  Nipped this in the bud!"  Regret ate her up.  And yet there was NOTHING in her wheelhouse that would have prepared her to watch for possible signs of brain cancer, for crying out loud.  That's not the case with me.  I know you have AN, and d, I'm seeing red flags here.  If you get really sick, or worse, I can't live with those kinds of regrets.  I can't face your sister and brother and tell them I saw the signs but I was afraid to say anything.  I can't let my fear of your reaction stop me from doing the right thing.  I know it makes you mad but I can't let your anger prevent me from speaking up, even though your anger really scares me.  I'm saying it: I see ED and I'm worried about you."

There was a pause and she went back to her irritable crabbing at me.  But as we walked up to our porch, she switched in mid-crab to say (crabbily), "I want you to know I heard what you said!"  And she went in and made herself a hot fudge sundae.

From that point she continued to make a concerted effort to gain weight.  She chooses the whole milk over the Diet Coke.  She chows down at our house.  She turned down the opportunity to be a forest firefighter this summer because she doesn't think she'd be able to keep her weight up.  The times I've seen her in the past few months, she looks good and must be close to her target weight.  Her state is good; she's cheerful in her usual warm way (not the brittle 'happiness' of ED) and she loves us.

Life is good.  But I am sober about it.  I know it can turn on a dime.

Can I just give a shout out to her little pup?  Taking care of this dog while she was overseas was the hardest and best thing I could have done.  The pup was a monster when I got her--still unhousebroken at 7 months, an aggressive, untrained border collie who herded us around the house and tried to kill the neighbors.  I've never had a dog and dang, she was hard!  She was my full-time job, but slowly and surely she bloomed.  We had her for most of a year, and that dog kept our d tied to us in ways that nothing else possibly could.  When ED fills d's head with distortions about me, she can look at her pup (and her pup's love for me) and self-correct, at least a little bit.  I can call d and ask about the pup without d feeling as if I'm invading her privacy (really, her isolation).  We talk about the pup all the time.  I love that pup no matter what, but I especially love that pup for joining us in helping save d's life.

Happy Cinco, all.
 
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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Red
I haven't logged on for a long time ... work, and Not Worrying... and life. But I always log on for your Cinqo de Mayo updates.  I am glad things seem to be going well, and I am grateful for your story - many times I have said to my d, "I dragged you out of Hell before, and I will again; I always will," inspired by your words and your persistance.  Thank you
The future is not set; there is no fate but that which we make for ourselves.

"Not my daughter, you bitch." Mrs. Weasley
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Colleen
2016:

A little better Cinco this year than last.

She finished her year working with the Conservation Corps in September.  During that time, between the physical work and the difficulty in maintaining her weight, plus her isolated living conditions, she developed social anxiety.  This is 180 degrees from the girl pre-ED, or the girl at a healthy weight/exercise level.  It was bad enough that she sought help on her own, and thankfully, she sought out a good FBT-trained therapist we'd used briefly back in 2011.  Whatever he did, helped.  She began having a lot more insight, saying things like "ED has taken so much from me."  Doesn't seem like much, but there had been 7 long years where she would have said she was FINE and that *I* was the problem!  I was feeling very hopeful that she was going to make some lasting breakthrough.

Alas, breakthrough is just not an appropriate thought in regards to ED.  Insight, motivation, understanding--it all flies out the window with a few missing pounds.  D got sick for a few weeks just before she moved across the country, and with the few pounds she lost went all her new insight.  She was able to gain some it back before she left, but sigh.  It's scary.

Current status:  She is living with her bf in Washington DC while he pursues graduate work.  She has her bachelor's degree but is not really engaged in a job search.  She walks dogs by day and delivers pizza in the evenings.  Not what we'd want for a career for her--she is brilliant, beautiful, funny, quick and kind, with lots to offer her field.  But she's engaged with the world.  She's at her appropriate weight (and I'm going to tell you guys, it's BMI 23 or better for this one--don't settle for less than what your child's health requires!).  She is happy and healthy.  She has our grand-dog.  It's scary having her so far away, where we can't administer the hug test or if necessary, nudge her toward a higher weight.

We've been able to see her twice in the last seven months.  H and I flew out to see her in February.  She was not only happy and healthy, she seemed absolutely hungry to see us.  She'd get her work done as quickly as she could so that we could have more time together.  She's thinking about grad school.  She was eating like a horse.  She was HEALTHY!

Will I ever stop worrying about her?  Doubt it.

Happy Cinco, all.
 
Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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WeNWinning
Gosh Colleen - I am reading your yearly updates and thinking how much my D is like yours as her lapses come with a few pound loss, and her anger is always directed at me.
It is the red flag sign along with such lack of insight.
And with that loss of weight that comes easily and automatically, ED consumes and brings on so many other STATE changes.  I agree wholeheartedly with you that a BMI of less than 23, is when the switch goes off.  

I truly hope that your girl will continue to eat well, and move herself forward.  And that your relationship will thrive through it all.   And she will find herself in the process and take on a life in graduate school that challenges and excites her.

Sending you warm hugs
WenWinning (formerly wenlow) - a Mom who has learned patience, determination, empathy, and inner strength to help her young adult daughter gain full remission after over a decade of illness and clinician set inaccurate weights
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Psycho_Mom
Colleen!!

Hugs!!!!

And if your d is ever walking around town minding her own business and gets hugged by a perfect stranger....it might be me! 

Your story and your advice have helped me so much over the years.
Thank you,




D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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momon
Colleen

Love seeing your daughter's progress over time, and most of all lI ove reading that your daughter is HEALTHY and moving forward.

Your annual posting tradition is great.  I am impressed at how you have turned this date into a source of strength and made it positive.

Hugs to you and delighted that even though it is never just upward (sighs, groans, etc.) this last year sees her going in a good direction.


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ed_newbie
Colleen thank you for sharing this chronology.  I had never thought to celebrate the day of my d's diagnosis but I realize now that this was the day that light dawned.  The day I was pulled out the fog of confusion and denial and mobilized into action to save her life.  

It is so helpful to hear about your daughter's journey.  

YOU are amazing for having taught her the skills she needs to manage this illness and for the unwavering love and support you give her.  

Cheers!  

"Lineage, personality and environment may shape you, but they do not define your full potential."    Mollie Marti  

ed_newbie

15 yr old d diagnosed with AN late December 2015 at the age of 12 after a 23 lb weight loss during prior 3 months. Started FBT/Maudsley at home on Christmas Eve with support from amazing local nutritionist specializing in ED and trained in FBT. WR Feb 2016 and pushing our way through puberty and rapid growth.
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steveandmissy
Thanks for sharing this story esp with being such a newb to all this. You give me hope. God Bless
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mdmama
Colleen, I love the idea of commemorating the diagnosis date-- because only with diagnosis can we begin truly facing the ED monster and healing. I know I'll never forget my D's diagnosis date, so I might as well use it as an opportunity to reflect on how far we've come since that day. This past week marked six months since my own D's diagnosis and she's doing fabulously. We'll see where things stand next November.

Glad to hear your daughter is thriving in D.C.-- I am in the D.C. area too (as is Juno, who started our local parent support group recently)-- so you have some FEAST allies here if you ever need local help for your girl. But I don't think you will. Congratulations on how far she, and you, have come.

_______
D diagnosed with AN November 2015 , the week she turned 12. Gaining slowly but steadily, fingers crossed...
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aboncosk
Thank you for sharing your journey.  I am still very new to this site and reading peoples accounts of the trying times with this dreadful illness (along with some of the ages of the children) is heartbreaking.  Trying very hard to have hope and faith in this journey. 
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AnnieK_USA
Colleen, I joined ATDT a little after you did, and I followed you and your D's journey all the way. ED is a relapsing illness, and we do our best to help our kids to become physically healthy and to learn what they need to know to avoid relapse and to maintain that health. It is an up and down course. Glad to hear that your D is in a better place now, but it must be difficult to have her so far away, not really knowing exactly how she is. Kudos to you, such a supportive, loving and non-enabling mom!

My D is doing really well ED-wise. Her set-point healthy BMI has turned out to be closer to 29 or 30, and she is totally fine with that! She is not well when below that level. She spent 5 years fighting against her self-destructive eating urges, struggling mightily to overcome them, always aware of what was going on with herself, and now has a couple of years of true health under her belt. And she has also been making great strides to cope better with her co-morbids of anxiety, depression and ADD.

So there is always hope, even for very long-time sufferers. Hurray for both of our dear daughters!
Daughter age 28, restrictive anorexia (RAN) age 11-18, then alternating RAN with binge eating disorder and bulimia with laxatives, is in remission from EDs for 3 years after finally finding effective individual therapy. Treatment continues for comorbid disorders of anxiety, ADD and depression. "Perseverance, secret of all triumphs." Victor Hugo
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Colleen

I think one of the lessons here is that family involvement FOR A LONG TIME is key.

Sometimes parents will feel discouraged after going through the hell of refeeding at home and think "FBT doesn't work" or "FBT doesn't work for all families".  Two thoughts about this:
1.  FBT is a term thrown about here rather recklessly when it's really a very specific, manualized treatment protocol.  I believe most people are referring to some of the prinicples behind FBT when they use that term--and those principles involve parents being in charge of refeeding at home.  For the record, we didn't have FBT support.  But we did refeed our d at home.  Would have been nice to have support!!  But I would call it 'family involvement' rather than FBT just to be clear.  We stepped in when we needed to, with or without professional support.

2.  EDs take a long time to recover from, and recovery is rarely a straight line.  Just because a kid relapses doesn't mean that the treatment 'didn't work'.  There are at least two serious relapses here, along with a bunch of setbacks.  I could have said at any time that "family involvement didn't work".  Except that I knew that it did.  It worked and we didn't keep at it long enough.  Or it worked and she got sick again.  Or it worked but life interfered.  Or it worked but ED is a genetic predisposition and we can't anticipate ALL of life's curveballs.

This illness takes the perseverance of Sisyphus.  Just when you get the ball up the hill, it rolls back down again.  It can be discouraging.  BUT the more the kid stays at a healthy weight, has regular normalized nutrition, faces food fears and has ED behaviors challenged, the better the chance for a well-functioning brain.  I'm not sure that the ball is going to stay on top of the hill this time, but for today, she's fine.  If in the future she's not, well...we'll be there.  We know how to roll rocks uphill.

Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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