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midwestmom_USA

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Reply with quote  #1 
This pinned thread is for more experienced Forum members to share their recovery stories as a way to inspire our newer members who often wonder if things will ever get better.
  • Please DO NOT RESPOND to the posts on this thread. If you see something you want to comment on or ask questions about, go back to the forum page and start a new thread with the "NEW TOPIC" button. Moderators will move response posts in order to keep this more of a reference thread.
If you feel your family is at a stage of recovery where you are successfully moving forward with treatment and have left the worst of ED behind, please post your story below using the following guidelines:
  • Include the basics like age and diagnosis, type of treatment plan you have been following, and what part of the world you live in.
  • Make it chronological, starting with a time when you first felt like you were seeing a light at the end of the tunnel, such as reaching weight restoration or a point when you began to see consistent mental improvements.
  • Make it short. Readers can click on your name to get more details and see your other posts.
Come back periodically and update your recovery story! Only you can see or use the "edit" button on your posts.

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"What is necessary is never unwise." - Vulcan saying, Star Trek
Charlotte_UK

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Reply with quote  #2 
Me first me first......

My d was 12 in May 2009, diagnosed with anorexia nervosa at the beginning of July 2009, went inpatient to the Priory in Chelmsford (adolescent ward) for four weeks, IoP for three weeks and returned to school in September 2009.  Ten days later, we withdrew her from school, still feeding her the prescribed 1800 calorie "meal plan" we had left the hospital with and taking her to a CBT therapist until November 2009.  During this time we were sinking deeper and deeper in to the quagmire and I was being told a lot about feelings and about "living" with this for 5 years

November 4th 2009, I put my first post on the forum and felt like I had landed in a safe haven.  Instituted Magic Plate and started tentatively to inch towards wellness.

February 22nd 2010, d and I went on TV and Radio to heighten awareness of eating disorders.  d was still very ill but there was a glimmer of hope because she could talk about it.  She went back to school part time at this point.

April 2010, d went back to school, with her older sister eating lunch with her and keeping an eye.

July 2010, we threw away the scales and d went on holiday with her best friend for two weeks.  It was a welcome break for all of us but not without extreme anxiety and fear on h and my behalf.

By August 2010, I was posting about ed disappearing.  The light was creeping over the horizon in the form of eating outside the mealplan, having icecreams on the beach and d being much more open about how she was feeling and asking for help dealing with things.

By Christmas 2010, I was breathing again.  ed behaviours had completely disappeared but anxiety remains high.

We continued Magic Plate throughout this time and d grew 5 inches upwards, went through puberty (again!), grew outwards in the chesticle area and started to morph into a normal teenager (now that's a misnomer, I know, but a teenage melt-down is heaven compared to the mute terror of an ed......).



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UKMom

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Reply with quote  #3 
My then 15 year old daughter was diagnosed with Anorexia early in May 2011 in the Southeastern part of the UK by a GP in our local surgery and told to "just eat" and given a referral to a local ED unit which could not see us for 3+ weeks.  Shortly after diagnoses, we had an emergency trip to the hospital to stabilise heart rate, glucose etc.  It was then we were introduced to an ED nurse who gave us our first understanding of the severity of ED and a meal plan.

To get going, I followed Lock & leGrange's Treatment Manual for Anorexia, got onto re-feeding with no other aim but achieving weight restoration.  We had weekly height and weight measuring and medical monitoring but no FBT or therapy to speak of.  The persistent 3 snacks and 3 meals, keeping on top of current research and 'lurking around' ATDT then finally posting was instrumental in my daughters recovery. 

Made real breakthrough in August 2011 with low end of weight restoration in October 2011 and full weight restoration early in January 2012.  

The light at 'the end of the tunnel' occurred in November 2011 and we have gone from strength to strength since (but not without a few bumps along the way).  

Now, in February 2012, I see the end is near - real brain healing taking place, no further raging, a healthy and active social life and some intuitive eating happening.  Every day I see a new achievement and we are still working on a few more AN thoughts but making great progress.

I see a renewed spirit in my beautiful daughter and am very very grateful for her hard work, the support, guidance and communication of FEAST members and our amazing Dietician for the help in achieving a solid state of recovery.

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Our mantra: "Life Stops until you Eat!".  Full recovery is possible; step by step; bite by bite. (D diagnosed at age 15, full w/r obtained one year later, maintained and in full recovery since May 2012)
papyrusUSA

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Reply with quote  #4 
My daughter, then 17, was diagnosed with AN in May 2011.  She claimed to have been restricting and over-exercising since Nov. 2010. We were immediately referred to this site and told to refeed her.  

There was a tough learning curve, and it wasn't until a mini relapse in Aug. that we realized that we had to be singularly focused on one thing - 3 meals, 2 snack determined by me.  No more eating out with friends, sleeping out, partying, etc.  

With the weekly support of our adolescent pediatrician, and a therapy program that supports FBT type treatment she was weight restored and she made progress. 

Because my husband wanted to see her go to college, we quickly (too quickly?) transitioned to Stages 2 and 3.  After delaying college by a semester she is now in school far away from home with a solid contract, great therapist, and supportive student health director.  She's doing great and it wouldn't have worked without the support and guidance from my fellows on FEAST!

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Papyrus Philadelphia area
mec

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Reply with quote  #5 

This was our rough timeline:Stage I (10 - 11 yo 5th grade) Support from FBT/Ped

  • intense re feeding - fire & brimstone - 6 wks
  • continued re feeding - smoke, resistance, relentless ED thoughts and angry talk - 3 months
  • total dependance on me feeding d - Ed thoughts strong but d separating self from Ed - 9 months - TW continued moving due to growth and impending puberty
  • Exercise compulssion intense and harder than food issues

Stage II - from 9 + mos - 18 mos post w-r (11 -12 yo 6th grade) Support from FBT

  • hit magic # 76% in growth chart - hunger is accepted and d starts asking for food and telling us if she is hungry or needs more food - still asks for permission to eat but there are moments when Ed is not part of her life.
  • D starts serving her own drinks and getting her snack from cupboard though still fully supervised. Unfortunately, she is unable to eat enough at school due to anxiety but makes up caloric difference at home.
  • She also develops intense social anxiety.
  • D starts failing in school and expressing that she is sad and doesn't fit in anywhere.

Stage III - 2 years post w/r- (7th grade 13 - 14 YO) Dismissed from FBT

  • food is no longer an issue and weight remains stable. Body image is healthy and D eats w freedom and joy.
  • D's social Skills improve and she develops close friendships, she enjoys her new school and youth group at church.
  • However, at home when she can let her hair down she is angry, on edge, impatient and explosive.
  • She is still unable to ask for help, ask or accept gifts from us and sees crying as a sign of weakness. She also seems to be missing the empathy chip except for animals.
  • Gentle supervision and breakfast and supper still served at home. D in charge of her snacks and lunch at school.
  • Goes through period of talking non-stop about the Ed and how she felt inside and wants to become a spokesperson about prevention of Eds.
  • Exercise compulssion decreases

Stage III - 2.5 years (13 yo 8th grade)

  • d hits a wall w focus in school and impulsivity. Have her evaluated by psychiatrist and school psychologist - Dx ADHD off the charts. We start stimulant Meds
  • CBT and psych consult once a month
  • On meds and CBT, anxiety almost gone, focus and executive function much improved, emotions under control.
  • Weight stable and linear growth stops.
  • Exercise compulssion decreases further and d gives up swimming because she wants her life to be about more than swimming.

Stage IV - 14/15 yo 3 ys + since w/r D (9th grade) ongoing....

  • D is responsible for her snacks, bkfast occasionally and lunch at school.
  • Doing well academically, spiritually, emotionally and socially w/friends and family.
  • Has become very physically affectionate w all family members
  • She started crying when appropriate (sad, touched by something or when pms).
  • D also started asking for things she needs and this Christmas for the first time, since she was 8, she made a gift wish list.

    This is our journey and it isn't over yet. Our journey has spun so far from a 9 year old child who got sick to a 15 yo teen who has just started discovering her identity.

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Our 20 year old daughter has been working out her recovery from Restrictive Anorexia Nervosa and compulsive exercise for the last 10 years. She was DX at 9, re fed at home with support from local FBT and ATDT forum, and weight restored at 11.
lydia

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Reply with quote  #6 
After a 5 year ordeal, that nearly cost her life, our young adult d finally reached recovery from anorexia through FBT/Manualized Maudsley.  This is our family story.  I wrote that in the spring of 2007.  Since that time our d has been living a full and joyful life, free from all symptoms.




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The greater your belief that you are stronger, smarter, and have more staying power than ed; the greater the chance your child will come to believe that too.
LauraCollins_US

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Reply with quote  #7 
Our story is almost 10 years old now, but doesn't FEEL that way!

Our daughter developed anorexia nervosa at 14 years old, in 2002. Our family stumbled a while, then by accident found a reference to Family-Based Maudsley Treatment - back at a time when it was very rare and very controversial. She recovered pretty quickly: within a year. A few years later, in her first year away at college, she relapsed and came home and got back on track in 6 months or so. That latter experience really sealed ED's doom: he hasn't been back. She graduated from college last year, has a job, lives happily in a city nearby.

My daughter is my hero. An amazing young woman who I admire and love and learn from all the time. I hate that she had this illness and it tried to kill her, but I think her success beating it is amazing!

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Laura (Collins) Lyster-Mensh
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POPB

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Reply with quote  #8 
Oh wow, these are great! I haven't swung by here for what feels like a very long time.

Diagnosed by herself in 2008 (binging and purging, sporadically), sought help with the program psychologist at the National Sporting Program where she was on scholarship. Was referred to the Program Dietician who put her on 1600 calorie a day diet. (this was while doing 28 hours a week training). Bulimia spiralled out of control. Binging and purging up to 7 times a day. Stealing money from our bank account to cover her tracks. 

Was hospitalised with raging kidney infection in October 2009, during this time anxiety was through the roof and I watched a gift hamper of chocolates disappear in the space of a day. I called her on it and told her she had to tell me what was going on. I had asked four times, only to get told "I could never starve myself".

CBT was a disaster, and we feel it drove a wedge between us, I sought out a carer's session with an independent organisation and found Feast in one of their newsletters. Spent every waking moment finding out what worked and what didn't. My daughter didn't fit the AN and young teenage stigma that Maudsley seems to have with some of the lesser educated professionals out there.

Was told by the program psychologist that D "had to do it alone" - she was in cahoots with the Ed CBT person. At that point I had just begun posting on ATDT. I think it saved my sanity, and my daughter's life.

We do Maudsley. Therapist didn't tell us he had decided to "adapt" the model in order to fit with my daughter's life. I now think he was seduced by Ed. Around this time our D stopped talking to us for 8 months. I thought I would die from the grief of it. We still don't know what caused it. 

What I can say worked without a shadow of a doubt it 3 meals, 3 snacks. I know my daughter believes this is what gave her the power over Ed for the first time in two years. She quit her sport. 

Still a perfectionist. She still keeps with 3 meals and 3 snacks mostly. We worry about her, but we do believe she isn't binging and purging and we hope that one day she will be truly free. I think she is about 80% of the way. 2012 is five years since Ed creeped through the door.

I loathe Ed, I learned just what an enormous stigma this illness carries and the understanding of it, especially among elite sporting programs is just shameful.

But we survived, she is alive and I live in hope.
Christopher

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Reply with quote  #9 

Our daughter was diagnosed with restricting anorexia nervosa 6 1/2 years ago at the age of 17. For the first year we tried individual talk therapy and two residential programs, neither of which were much help. Then we shifted to a different approach that directly focused on food and eating. We put together a team of responsible adults that for several months met our daughter for almost every meal to help her eat enough food to regain lost weight, catch up on her growth curve, and gradually re-establish normal eating patterns, while at the same time not focusing much on talk therapy.  After several months, we withdrew the meal support, and our daughter has been eating well, and in a relaxed fashion, for the past five years, with no sign of anorexic thoughts or behaviors. My wise and lovely wife was the leader in developing the approach that eventually seemed to be very effective, and our wonderful daughter trusted the plan and worked incredibly hard to recover.  I have become a strong believer in the power of kids, moms, and families.  

EB

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Reply with quote  #10 
Our daughter was diagnosed Spring of 2008 aged 16.  We had not understood the full implications of what we were seeing as she not only lost weight but had become increasingly anxious around food and in other aspects of life, as her hair fell out and as she began to feel cold all the time. 

We live in the UK, were referred to an NHS CAHMHS team but opted for private treatment early on.  We were supported by a psychiatrist who co-opted in various others resources as our circumstances suggested we had need; some were useful, some less so.  With the benefit of hindsight, I think we needed to try a number of different avenues to establish what helped and not to be afraid to move on from something that didn't.  A relationship of full and mutual trust and effective communication took time to develop with our team; we began with a traditional UK doctor/patient dynamic with me expecting the doctor to lead us and to find magic wands to wave to effect cure - I learned with time and practice that we all had our roles to play as part of 'team d' and that being open to discussion and learning how best to communicate were more useful to us than waiting for someone to provide easy solutions.

My d's treatment and recovery took about a year and a half from diagnosis to seeing concrete signs of recovery; a change in mental and physical health co-incided very quickly in our case. 

My d is now 20 and living a full and independent life in her second year at a challenging University.  Life is not without the normal ups and downs faced by an emerging adult in a complex world; my d occasionally suffers from depressive symptoms still as, perhaps, a hangover from her ed days but understands that she has strong support networks and is able to ask for help if she needs it without fear or hesitation.  She is still under the care of her psychiatrist who she sees very occasionally if she feels a need for some medical input. 

We have had no return of eating disordered symptoms or behaviours to date and my d's eating has very much normalised and she has no residual anxiety around food.  When not, temporarily, sideswiped by depression, which happens only occasionally, she has blossomed into a confident and joyful young adult ready to take on the world and to enjoy all its bounty; she can acknowledge that she had an eating disorder but has moved forward, unashamed of it but not feeling that it is a defining feature of who she is or who she will be. 

She is a wonderful, empathetic and strong young woman full of a worldly wisdom well beyond her years that I dearly wish she could have earned in gentler fashion; I am so very proud of her for allowing us to help her overcome, for trusting all those involved in her recovery, and for being exactly who she is.


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Reply with quote  #11 

D diagnosed fall 2010- age 10 with anorexia and severe exercise purging. She was spending 3 hours a night alone in her closet doing crunches. We had no idea. Her weight plummeted, her mind went, and our beautiful daughter was taken hostage by ED.

 

D spent 25 days in the hospital. It was not the best situation with her age factor. Most inpt facilities are not geared towards young children.While she was there, we learned about FEAST and read every book and study we could find. We took our daughter home to start FBT and refeeding on our own.

 

That was Jan of 2011- it took us a few months to put about 25lbs on our daughter. It was the hardest time of our lives. She had setbacks- anxiety induced vomitting at the table, constipation. We had to tackle some pretty major OCD with excersize. She had not sat down in about 7 months.

 

Through the power of food and love, within about 6 months D's brain started to heal...the fog lifted. She was able to stay in school. make new freindships....this year she is in middle school. She was in a play, was able to rejoin her basketball team, goes skiing, to sleepovers. She continues to need extrememly high calories to maintain and keep up with growth- somewhere between 5500 and 6000 calories a day. We have had our share of ups and downs, most recently her first major illness of a stomach flu, that made ED feel her could try to get back in- but we did not let that happen.

 

This will be a long road for us- really the 'stage 2 and 3" will take years as we get our daughter through puberty and help her to navigate the social weirdness of middle school and high school.

 

What I have learned more than anything is to trust my gut. I have learned that the most important thing in battling ED is to be a united team with my husband. To be able to talk openly about what is working and not working, and to not get defensive. Take waht helps you from FEAST, and leave what does not.

 

There was a time I never thought I would see my daughter again- the real person. I never thought I would hear her laugh or sing. She sings all day long now and laughs constantly. She talks openly about this past 3 years. She still has tough times when ED thoughts emerge, but we have learned along  the way what we need to do to protect her and to keep her eating. Food is medicine. We have saved our daughter from the grim reaper knocking at our door. Never give up hope.

FALL 2014- D now 14 years old and in FULL remission. COMPLETELY 100 percent NORMAL! She eats intuitively, has gained ON HER OWN by eating when she is hungry. If you did not know that she had ever had an eating disorder, you would have no idea. We still keep watching….and are working now on getting her ready to be able to take care of herself into the future. She is a freshman in High school. She taught herself guitar and is a singer/songwriter. She has gone through some hard times socially but has found her way. NEVER GIVE UP! 


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Amoma

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Reply with quote  #12 

If you have a young child with AN 9-11 yrs old I am here to offer you HOPE for a recovery!

 

My young D (9) had a rapid acute presentation and a challenging but rapid weight restoration......once WR worst symptoms faded rather dramatically. 

 

Here is her initial presentation timeline 

  • 1/11 D (9) stops eating ice cream, notice weight loss. D is a soccer player, and played all her older sister's team practices as well as her own. Thought weight loss was due to sports.
  • 3/17/11 weight loss now at 30 pounds rapid! Flat affect, cold hands, feet, starts drooling constantly. Discover she has thrown out snack and lunch at school for 3 months
  • 4/1/11 ER at large children's hospital after developing bradycardia. She stops eating any solids, drinking water. Self harm, constant drooling. psychosis level body dysmorphia. 

 

I decided in the hospital her best chance of recovery was me. I came here and read everything I could on Maudsley. I became her sole meal support at the hospital, not the staff and continued through outpatient to do meal support on my own when she returned to school.  

 

What I can offer you, tools to take away immediately from our journey of hope:

  • Make prompt and adequate weight gain your moment to moment goal. Remove your child from sports to gain weight lost due to ED. Educate yourself on being meal support, how to cook and present meals for adequate gain. Seek out how to support through extreme resistance because you will see it!
  • Seek out clinical treatment FBT to challenge AN behaviors with exposure therapy. We ripped the bandaid off methodically and promptly challenging the fear foods with clinical support. Challenging the Fear Foods through extreme resistance worked brilliantly and made rapid recovery a possibility. EXRP Rocks!
  • Quickly Return your child to her or his individual growth curve. I had to fight for this and saw dramatic improvement once at her weight historic curve. Her growth charts showed she was an 75% girl for weight and that is where I returned her. All the worst and most vile AN and ED behaviors lifted like a fog. the last 10 pounds saw extinction burst extreme anxiety. GONE at 75% that was her individual curve........

 

6/30/11 Weight restored 30 pounds in 13 weeks to her  individual growth curve 75% weight for age. My D returns to us in so many ways.

 

9/11 returns to soccer and school. Unsupported meals at school. Smiling, engaged in friendships, plays violin, starts singing lessons.

 

11/2012, Now WR 20 months.  ED is in full and firm remission. No fear foods, no fear food situations, body dysmorphia gone. Back to full soccer participation through pubertal growth. We work daily on indepedent age appropriate eating. Sheeats a brownie or halloween candy because it is super yummy!

 
Update 11/20/13

Do not despair if you have a young one. The power of food is immeasurable and your power as parent is the facilitator is great. Young ones decline very very rapidly but their recovery with Family Based Treatment is entirely possible. She now is learning to assemble breakfast and lunch and gets her own snacks. Continues to play soccer, sing and has not had re emergence of ED...

 
Update 11/20/14
Now WR over 48 months. ED continues to be in full and firm remission. She eats freely, intuitively and is learning to cook. She continues to play soccer, basketball, and has had regular periods for a few months now at age 13. She has survived bouts of strep, flu, and no emergence of ED. She has grown in height and continues to gain appropriately keeping her on her growth curve. No reemergence of anxiety now a full 3.5 years later after loss of a grandparent, starting new school, first crushes, mean girls in middle school... Nada. Normal 100%....No ED.

Ever mindful of the relapsing nature of this illness I continue to guide her toward flexibility in thinking self distress skills and toward beginning her teen years vibrant and healthy.

I have hope. I saved my daughter's life and that is an empowering feeling.

 

Thebaker

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Reply with quote  #13 

Our family was thrown into the anorexia realm exactly 1 year ago on March 22.  What a journey!  Thinking back to this time last year- my 10 year old son was suicidal, had OCD behaviors, moody, severely restricting and our normal family happiness was shattered.  Watching our 10 year old son walk down the path of a mental illness has been devastating to say the least.  It breaks my heart to think of the personal hell my little boy has been through for the last year.  But I’m happy to say that he has slowly come back to us….

 

Treating our son at home with FBT has proven effective, but it was by far the hardest thing I have ever done.  Looking back, I realize that God sent the right people in our lives to support our family emotionally and clinically.  Taking care of a mentally ill child is a 24 hour job without respite.  This website has been so important to me because there were people out in the world that UNDERSTOOD and could give support and advice when needed. Thank you from the bottom of my heart! Reading the ATDT entries gave me strength and hope.  It’s uplifting to read about other families that are dealing with the same surreal issues but are surviving and succeeding.

 

ED is not completely gone yet from our house, but my son has been WR for 8 mos and is HAPPY.  I feel blessed every time I see his huge smile.  We are continuing to stay ahead of the disease and hope to boot it out of our home for good.  He has no place here or anywhere!!!  ED is a happiness destroyer.

gobsmacked_US

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Reply with quote  #14 
I don't feel like we're totally out of the water yet, but I know where we are now would have been a very hopeful place to me in the first year of this journey, so I am sharing.  We're in the US, in New York, near Albany.
 
2009 was rough year for our family. D (12 at the time) wasn't acting herself but we chalked it up to events and puberty.
 
About January 2010 just after she had turned 13, we noticed "healthy eating" (following Michael Pollan's book, Food Rules). 
 
May 2010, we started noticed her restricting and exercising more (wii fit -- hate that thing with a passion now -- and hula hooping, mostly).
 
June 2010 took her to doctor, realized she'd lost 15 pounds. Doctor called it anorexia and told us to give her more control over her life. I had to beg for a referral to an ED expert. Spent weeks calling the ED expert, any therapist I could find who specialized in EDs, etc., but they were all booked for months and acted like it wasn't a big deal.
 
July 2010 she stopped eating and drinking almost entirely and spent full days reading and hula hooping at the same time. Finally spoke with yet another therapist who couldn't fit her in but said to take her to the ER and that hopefully they would admit her to Four Winds' adolescent unit (a general psychiatric hospital in Saratoga).  It worked.  It was a huge relief to my husband and me. Interestingly our doctor, the ER, and Four Winds all dx'd her as having Restrictive Anorexia Nervosa despite her not having lost her period or going belong the bottom number of a "healthy" bmi.
 
Same week she was admitted to hospital I found FEAST and ATDT and ordered Help Your Teenager Beat an Eating Disorder. Husband and I switched off reading it in the ER and then while she was in hospital. Realized we might have been able to avoid hospital if we'd read this early. Hospital didn't practice FBT -- hadn't even heard about it -- but they were kind and within three weeks she was eating according to their meal plan. She was also dx'd with depression and anxiety and admitted to feeling suicidal. She was put on Lexapro and Rispirdal. I spent that time trying desperately to find an FBT within driving distance. Couldn't find one. 
 
Early August 2010 she returned home and was compliant with meal plan. Her compulsion to exercise had completely disappeared and has never returned (she had never been terribly athletic before AN). When she was released from hospital, we kept her in IOP while we kept searching. Hospital was good for her. IOP was awful. Finally realized that a therapist we had used with our other daughter was receptive to the ideas of FBT and Maudsley and while not trained, was willing to support us through this and was the best choice. She was helpful in many ways, but we had to push for a lot of things that we learned here. Also saw a nutritionist who, while a good woman and good nutritionist, I think was a mistake for a 13yo with anorexia (everyone insisted we needed her). In hindsight, I know now we should have immediately jumped on a plane for UCSD or that we might have found help with Walden in Massachusetts, but they didn't present themselves as options then.
 
Late October 2010 -- mostly thanks to the help of ATDT and her odd compliance, she was fed to her natural growth curve. However, she was still stuck on her meal plan, and we hadn't challenged her fear foods. She still couldn't acknowledge her anorexia or that anorexia is dangerous. Depression had lifted a bit. but anxiety was still very high.
 
Spring/Summer 2011 (14 now) we had managed to wean her off the mealplan and move to more of a magic plate scenario. She went off Risperdal.We decided to tackle the fear foods. She had been compliant during refeeding but ice cream brought on the rages we'd heard about here -- screaming, running away, police, etc. It took a couple of months, but we got through it. 
 
August 2011 she had whooping cough and was stuck inside for a month, resting. Turned out to be great for her. She spent time learning about herself, forming opinions, etc. This month of rest really helped with her self-esteem and anxiety. They are still issues, but there was a big turn around at this time.
 
It is now March 2012, and she is 15. She has been weight restored almost a year and a half and has continued to gain a bit (but not to grow). She is off all her medication. She eats whatever we put in front of her. She eats food that we send with her (i.e. to school). She will eat with friends if we figure things out before hand. She orders from restaurants fairly easily. She has on very rare occasions eaten something on her own and told me so I could factor it in to her day. Her depression still lurks and her anxiety is still very present but she copes with them both better. She laughs and sings and gets goofy with her younger sister and eats birthday cake if she has to. In the fall she was in a very demanding after-school Shakespeare program and managed long days away from us mostly without missing meals or falling apart -- there were a few small setbacks but she worked through them beautifully.  We are currently moving her towards serving her own food at dinner. My husband and I no longer live in constant fear, and our family is beginning to enjoy itself again, to have other interests, and to be out  in the world
 
She has yet to admit to anorexia which makes it hard to work out a plan to keep her from falling back into it and her anxiety is still quite high. We don't feel confident yet she could take care of herself on her own without someone making her meals even for one day. We don't feel anywhere near being ready for her to go away for a few days without us let alone go away to college (which thankfully is several years away still as she is in 9th grade). Now that she has been weight restored for long enough we are starting to look into co-morbid issues and hope that we might find some insight into how to help her move forward.
 
EDIT: It is now October 2014, and she is 17, almost 18. I'd like to say there have been more leaps in recovery, but it has just been a slow but pretty steady upward trend. The big thing is that while she hates talking about it, she can.  Insight has started to enter the picture.  In addition, more of the small things we want to see happen are happening more often. She hasn't had any relapses or even setbacks.
 
EDIT: January 2015, and she has taken leaps in recovery, with no encouragement except patience. She is far less rigid, gets snacks and often breakfast and lunch on her own and occasionally takes seconds. We are able to eat "family style," bringing the food to the table and assuming she will serve herself enough. She happily cooks the basics herself (she was not one of the cookbook obsessed -- she wanted nothing to do with food) -- in fact she's making pancakes from scratch right at this very moment, something that was a major fear food for her. 

Occasionally when I notice her being a little more rigid I remind her that she is not on a diet, and while she is still not a talker, it's clear she's taking that to heart.

She's still socially anxious, but she deals with that. She avoids situations that she knows will make her uncomfortable, but she also pushes herself to try new things.  Some of the things that came in with her ED are finally starting to evaporate, such as being a painfully slow reader. She is still a slow reader, but she is able to get through books on her own again, just for fun.

She has applied to eight colleges, all within one and a half hours of us, several under an hour. The idea is that she needs to be where we can drive to her a few times a week, if necessary, to check on her health, take her out for meals, keep her refrigerator full, etc, or bring her come home for weekends. 

I'm not sure I'll ever feel like we are totally out of the water, and college will be a challenge for all of us, even if it's mostly me learning to relax, but we are in a really good place.
betty

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Reply with quote  #15 
Just a quick update about our beautiful daughter- now recovered and in no small part because of the wonderful support that I recieved here. We live in Melbourne in Australia. She was 15 when she became ill- diagnosed with anorexia purging subtype when she was terribly ill when she was 16. After multiple admissions to hospital ( I think 5) and time spent at the Butterfly  day program- for several months on 2 occasions with Maudsley therapy throughout  and the passage of time she is now well! She moved out of home when she was 18, not fully recovered but we helped her cope on her own as she wanted some independence. she then moved back home, then went overseas for 6 months and then came home again. She has now moved out again with friends a few streets away and comes home to visit every day!
She is 21, studying at university and about to go overseas again. she is getting stronger every day as she makes up for lost time. I would say that she was in the grip of the eating disorder for 4 years but it has taken another 2 years to recover from the effects of having been ill.
Things that helped- 1.as parents being asked at the Butterfly day program what we would do to stop our daughter dying? It made us realise that we should not be afraid to do whatever it took to get her  healthy. It empowered us to fight harder against the eating disorder and even though she fought us like mad we didn't give up.
2. separating the illness from the person. We could not have managed if we did not have a clear image in our minds that our daughter wanted us to help and that the eating disordered part of her mind was our mutual enemy.
3. trusting her to make decisions once she was 95% better. It was very hard but we had to let her have some independence once she was sufficiently recovered BUT we kept a close eye on her in case she slipped back. This helped her enormously to gain some control over her own life.
4. The support from this forum helped me through the darkest days. when things looked hopeless I would remind myself that when you are going through hell, keep going, that love would find a way even if it seemed hopeless. I had a vivid image in my mind of her in a beautiful blue dress that she would wear on her 21st, surrounded by friends and family,  healthy and strong. I often didn't know how that would happen but I kept it in my mind and when she turned 21 it became a reality. She even wore a blue dress because I asked her to!
   So if I could pass on any advice to those who feel overwhelmed by this insidious disease, it would just be hang in there, have courage and hope and your beautiful child will come back to you.

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BattyMatty_UK

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Reply with quote  #16 
Our son was nearly 16 when he was eventually diagnosed with an eating disorder. He'd been losing weight at a rate of knots, exercising madly, cutting himself off from his friends and exhibiting some strange behaviours over the summer of 2009. It took several visits to the GP before he was eventually referred for treatment with CAMHS, our UK-based NHS treatment team. We then discovered, to our horror, that we would have to wait up to 6 months before CAMHS assessment, let alone treatment. Meanwhile my son was disappearing down the rabbit hole at the speed of light.

At the end of January 2010 he was admitted to hospital with a pulse rate of 29bpm. By this time he had been completely consumed by the ED and, although I'd done my level best to get private stop-gap treatment for him, it had been like sticking a band aid over the gash in the Titanic. He survived the session in the cardio ward and, because of it, I was able to fast-track him into CAMHS treatment. It was also around this time that I discovered this forum who were a tremendous help, right from Day One.

Over the next 4 months or so I pushed for a Maudsley-style weight gain plan of 3 x meals, 3 x snacks a day. The treatment team wasn't entirely behind me on this and - on the day my son refused to cooperate any longer - they took his side and allowed him (or rather the ED) to do it his (or its) way. "He needs to make his own choices... it's all a bit of an experiment to see what works and what doesn't... he needs to want to change... you need to back off, mum, because all you're doing is causing hims stress... etc etc..."The next 5 months were a nightmare as his weight, moods, behaviours and everything else went completely pear-shaped.

It took another emergency admission to the cardio ward in October 2010 for CAMHS to take things seriously - and together we worked on pulling and pushing my son out of the rabbit hole. Because we were all working together it helped my son change, too. Faced with the prospect of being admitted to the IP unit, he turned a corner and this is the point that his recovery started in ernest.

Yes there were times when I fought with CAMHS and also with the ED as it tried to drag my son back into the hole. And, yes, we went through a particularly stale Limboland phase in January and February 2011, but in early spring 2011 things started to move forward at a faster and more positive pace. I'd introduced a Recovery Contract based on something I found on this forum. I'd also started to write my blog which helped me make sense of everything and move forwards.

My son says that the Contract, especially, was a massive help and it's something we still do over one year on, albeit in a very different form than it was back then as it's evolved with his recovery.

My son gradually put on weight and by January 2012 (now aged 18) he was almost WR and had changed dramatically in every single respect. In February we were discharged from CAMHS.

There are still loose ends to tie up - for example the fact that he was AWOL for 2 years of his life and is finding it very difficult to get back into his pre-ED social circle. Parts of the ED are still there, but on the whole I would say he is 98% recovered. For months he has been able to eat independently without cheating. He is finding it easier than ever to cope with the concept that he will need to weigh slightly more than he does now. He's overcome a zillion 'fear foods' and his exercise compulsions. We are just left with this darn social problem, but we're busy working on this as I write!!

If you want to find out more, my blog takes you through our story and its ups and downs - but, on the whole, definitely up!!!


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Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver. Please do check out my blog: http://anorexiaboyrecovery.blogspot.co.uk/

Get free PDFs of my past blog posts 2011 - 2016: http://bevmattocks.co.uk/blogspdfs.html (Easier to read; more linear than clicking around the blog itself.)

'Friend me' on my Facebook page: https://www.facebook.com/battymatty76
neverloseheart

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Reply with quote  #17 
I've been waiting for the right time to post on this thread, but I think we are finally somewhere that feels like the start of a normal life.....

My beautiful daughter developed an eating disorder (purging type anorexia) and severe malnutrition at age 14, while a freshman in high school.  She also had depression and self injury and was diagnosed with ADHD and social anxiety along the way.  She was in the hospital 7 times and missed the second half of her freshman year in high school.  

Through the help of her first hospitalization and this forum, she was started right off on a path of weight restoration and weight was restored in about 4 months, with full periods.  However, she remained very anxious/irritable/oppositional and suicidal for a year or more and thus the many hospitalizations.  There were flares of ed along the way but we basically stayed in Stage 2 for several years.  

We had lots of trouble finding good treatment for her but we made it to the University of Chicago and she started FBT combined with adolescent DBT.  She started back at school half days at that point in time.  The first few months were very scary because she was very dangerous but somehow we made it through.  Progress was slow, with many ups and downs but with the help of ongoing nutrition, DBT therapy and some very carefully titrated medications, she has finally blossomed and matured and she is just a wonderful young adult.

My daughter tells me that she doesn't really remember or understand what happened to her.  She can't make much sense of it and feels that she has someone else's memories in her brain.  She has separated herself from the eating disorder very well at this point and she doesn't want it to come back.  She knows she has to keep eating and take care of herself, both physically and in managing her strong emotions.  

My daughter graduated from from both therapy and high school (right on schedule) last week!  She's going to college and will live at home for the first year but she's gradually becoming more and more independent.  It is an absolute JOY to see her dive into something new and have fun!

What helped us:
For my d, "just keep eating"
For me, "just keep trying"

I was reading a book about ADHD for parents today, it was written by Dr. Mel Levine, he is a developmental pediatrician.  The book is called "A Mind at a Time"

He had something to say to parents of children with learning problems of all kinds.  Even though it's not about eating disorders, I sure wish this is what I had heard several years ago when this all started so I'm going to quote it here for all you parents who are coming here for the first time.  

“The stress should be on how a child is the way she is rather than why she is the way she is.   I don’t think schools and parents should be investing a lot of time, effort, and resources speculating why a kid is having trouble processing language, playing sports or making friends.” (OR HAS AN EATING DISORDER!)

 

“As a mother or father, you should not be wasting your time wondering, “Is all this my fault?”  “Could it be from all those ear infections she had as an infant?” “Is he a ‘chip off the old block’—stuck with his dad’s worst genes?”

 

“All too often, searches for causes are biased.  People seek and find either what they were trained to find or that they find most interesting.  Also, you can seldom prove a cause, and speculation can be harmful.  If I suggest to a mother that I think her kid is having language problems as a result of the ear infections he had an infant, that mom will suddenly recall all those times she failed to give the amoxicillin for a full ten days or neglected to bring her infant back to her pediatrician for an ear check.  She will blame herself—needlessly believing she damaged this child’s delicate brain.  If I state that I think her kid’s problem is mostly genetic, she could conceivably say to herself, “They told me not to marry into that family.  I guess I should have listened.”  Or she might lament quietly, “We never should have adopted her.”  So since you can never prove with certainty that any cause was the cause, you should SKIP THE WHYS and instead devote sensitive thinking to describing and understanding your child’s neurodevelopmental status (SUBSTITUTE EATING DISORDER) and the best way to care for that….”

So parents and people with eating disorders, no one truly knows WHY and guessing can only be harmful so please do not spend time making guesses about things that no one knows for sure right now.  Maybe someday, we will learn but we didn't wait for those answers and I am very glad!!!

I can never give enough thanks to all who have helped us get to these first milestones.  It's truly been a miraculous change from a girl deep in the throes of a potentially life destroying illness to a happy, positive, upbeat girl who really is the continuation of the child that I have loved for the past 18 years.  I'm so proud of her and all her hard work and our family too. 

In particular, I am so thankful to everyone on the forum for their support over the years, their honesty in reporting relapses so I have a realistic view of the future-we are going there with eyes wide open and preparation.

If I can help anyone, please email me!!!!  Just keep trying and NEVER LOSE HEART!!!


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Neverloseheart
Waterhous

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Reply with quote  #18 
She finished college last month. Graduated with 2 degrees and honors. Flanked by her family, mom and dad and brother and many aunts, uncles and cousins to wish her well.
Most importantly the person I saw graduate was not the person I saw almost 10 years ago, first diagnosed with anorexia nervosa. That young child was scared, withdrawn and completely under the spell of ED. She was not even aware of what had begun to happen, following a nasty collarbone fracture and some weight loss that happened after the fracture (fractures greatly increase energy needs).  The person I saw graduate did a lot of hard work, and so did many clinicians and her family to take her from the grips of ED. It was not easy or pretty and at times felt hopeless. We never gave up hope. We did give up many many hours to treatment and feeding and vigilance. We gave up a lot of money and fun and work but we did not give up hope.
We sent her to college still on medication and with a solid college contract, much against the opinions of the student health doctors and psychiatrist. I was considered the helicopter mom and told "it is time to let go". By the time she went to college we had been doing FBT on our own, because no person in our part of the country had heard of it. It was the final nail in EDs coffin. Every week of freshman year I received the demanded (by me) reports of her weight and overall health. There were a couple slips but she rallied and regained.
By the beginning of sophomore year she was off meds and by the beginning of junior year she made plans to take spring term and study with the International Honors Program which meant living in India, W. Africa and Argentina and having to eat whatever was presented. She did it. After that we no longer received reports from student health...they considered her done. By senior year she was chosen to be an RA in the dorms and she had under her wing 45 frosh girls, whom she mentored. Her weight and health had been stable for nearly 4 years.
To this day she will talk to anyone about her eating disorder and she maintains that if we had not insisted she eat, when we did, she would not have survived.
I have since used my credentials and received lots of training, so I can be a health care provider, treating people diagnosed with eating disorders, working within teams. I still find so very many treatment providers who are poorly educated about EDs and so have expanded efforts to provide training and am so very thankful to all of you out there who work so hard in this field, doing research, providing treatment, developing trainings and challenging the old ideas about EDs. 

For all those family members still working so hard to get ED out of the life of a loved one...keep up the good fight. It is worth every ounce of your efforts.
TinaUK

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Reply with quote  #19 
I can't believe how well d is - OMG.... wait, could that be a sense of joy, maybe even happiness I'm feeling? 

When d was first diagnosed 18 months ago, I searched high and low for inspirational recovery stories. Desperate is the word I'm looking for, totally desperate for some glimmer of hope to cling on to. 

If you are in the trenches with this hideous illness, perhaps your own sanity will depend on finding hope and inspiration from other people's recovery stories. I know mine did. 

Here goes...

D diagnosed 18 months ago. Re-feeding was mostly like a scene out of a third rate 'child possessed by evil spirit' movie. D gained weight through a tight daily regime and after a few months, she was at least compliant around food most of the time. That was the first 6 months.

D was able to return to a fairly normal life but the tight food regime had to continue and d was observed/supervised at every meal and snack time. Though she had passed the point of actively throwing food away if given half a chance, d continued to struggle getting to the next stage of recovery in terms of trusting herself around food. All in all she was doing great but small weight fluctuations continued to cause big problems and many ups and downs, two steps forward, one back (sometimes 3!) but we kept going. Tight food regime, observation and supervision. That was the next 6 months.

Feeling a little despairing (will we have to follow her around with food for the rest of our lives reminding her to eat?) and very worried we seemed to be treading water, H and I spent many evenings researching the elusive phase two of Family Based Treatment wondering how long d would continue to struggle with independent eating  She seemed so well in many ways but she struggled taking initiative and responsibility around eating.

Then there were signs. There was a school term where d didn't drop a pound in weight. hurrah! There was another term where she gained weight (what?) and then there was a 3-day school trip with no food supervision... She returned feeling well and happy. No weight loss. (we cried with happiness) A few wobbles followed but momentum was quickly regained. Then another school trip, a full week. Shaking in our boots we sent her off (with a bag full of extra snacks of course)! She returned from her trip, happy, feeling well, no weight loss. She had chocolate smears on her face when she got off the coach.

So... 18 months on, we have a pretty grumpy 13yo teenager with a lot of attitude ;-) which we much prefer! Physically, d has developed at lightening speed and is happy and relaxed about her new curves. 

D is firmly into phase two now - she has a normal life, a degree of freedom and independence and she does eat independently.

Meanwhile, H and I have developed hawk eyes and are finely tuned anorexia-detector instruments now - and I think that will continue to be the case as we carefully watch and support d going forward.

I don't have to tell you how this illness impacts a family and you'll know what I mean when I say that coming face to face with AN is bewildering, devastating, exhausting, frightening and heartbreaking.

But there is hope. Recovery is possible. Remember that. Always.
A doctor friend said to me very early on: 'you are her very best hope, never doubt that'. There is truth in that, for all of us parents.
That and food. 
FOOD - FOOD - FOOD. 
Don't miss a meal. Don't miss a snack.
Keep feeding 



LV

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Reply with quote  #20 
I have been hesitant to add to this thread for a few reasons including that neither our situation or our family are typical. However, in correspondence with another mom who is dealing with the double edged ED/Trauma sword, I realized that, sadly, there are probably a few more of us out there.

We are a US based family that seems to expand by the day. Four years ago our oldest daughter “was living the faux only child life“ as her amazing and awesome big brother and older foster brother were both out of the house finishing up college and working. I gave birth to our third daughter in December 2009, our foster daughter came into our lives two months later, and we‘re expecting our youngest [and we think final] daughter this fall.

Pre-FBT:
*Removed from her biological parents after a final significant and nearly fatal beating.
*Diagnosed with "atypical AN" at age not quite 10. She was hospitalized in the PICU for rhabdomyolysis at that point.
*She lucked out and got a CP/FS caseworker who had heard about Maudsley at a conference and went looking for a therapeutic foster family who would use Maudsley and refeed at home.
*The FBT did her initial evaluation while she was still in the PICU and questioned if FAED was the most appropriate diagnosis.
*We first met her in January 2010 when she had just turned 10. She came home from the hospital to us in February 2010.

Stage I: Refeeding and bit beyond [Age 10: January 2010-April 2010]
*Initial refeeding started in the PICU with TPN and then our pediatrician took her in transfer on one of the pediatrics units at our local hospital where she weaned the TPN off and we managed [with some effort] to reintroduce oral nutrition. Discharge criteria were medical stability and a realistic belief that we would be able to continue to refeed at home. We had a Plan B and Plan C but were still a bit terrified.
*Her pediatrician was a definite unsung hero. She took care of all of the medical monitoring which was a bit more complicated because of the rhabdomyolysis. [Thanks if you’re reading this!]
*Getting used to having food in her stomach again was a real challenge. There were tears and it was harder because we didn’t know her very well at this point so knowing how to best comfort her was difficult.
*This was the sleeping stage. She ate 3 meals and 2 snacks and slept on one of our couches in between. [I guess you could say we didn’t see any exercise compulsion.]
*We never saw raging or the extinction burst phenomena so many have written about. I suspect this was because she had FAED not AN and didn’t have the psychotic aspects to deal with.
*Much of the depression had melted by the time she reached the initial moving target of weight restoration. She still had a lot of insecurity and self esteem issues though. [These may have been more due to the abuse she had suffered by her biological parents than ED though. We’ll never really know and we’ve focused on just working on addressing what is necessary to give her the best chance at healing and a healthy life.]
*It took us about two months from hospital discharge to get her to everyone’s best guess at weight restoration.
*We [and her pediatrician] did allow her to ease back into gymnastics after weight restoration. We had a very open discussion with the head coach at her gym before we agreed to this and had a plan for increasing calories to compensate along with a plan for ongoing medical monitoring. We also watched carefully for exercise compulsion but didn’t see it.

Stage II: Trying to hand back control in an age appropriate fashion [Age 10: April 2010-September 2010]
*Our FBT conceded that manualized FBT was geared to older children so we would need to adapt our implementation strategies for age.
*Our main approach was Division of Responsibilities [original credit to Ellyn Satter]. We continued to follow the 3 meals and 2 snacks plan and as parents we did the menu planning with an eye towards overall nutritional adequacy and balance. We allowed her to serve herself with a safety net in place if what she served was inadequate. This worked well [because her hunger and satiety signals were restored---this would not be a good approach for a child if this was not the case].
*Over time we allowed her to have more choice in age appropriate ways by allowing her to assemble her own plate from the buffet at Family Brunch [a Sunday tradition in my husband’s family] where there are a lot of choices and to order off of menus if we ate out. We were there to ensure that adequacy and balance weren’t compromised but our feeling was that we probably weren’t intervening much more than we might have with any 10 year old.
*We also used this time to address her “limited palate”.
*During this period we coincidentally [or at least we presumed it was coincidental at the time] bumped into one of her biological parents and saw terror in a way we had never seen before. Meals after this were much more difficult for a few days and she was clingy with us in a way she hadn’t been before either.
*Our FBT recommended that we address the trauma issues before we tried to move into Stage III of FBT. She didn’t feel she was the best therapist to help our foster daughter with this and recommended a few options. Unfortunately none of her suggestions were local.

Hiatus: Trauma Work Part I-Play Therapy/ Art Therapy [Age 10/11: September 2010-January 2011]
*We opted to try to work with an out of state trauma specialist that the FBT recommended. She mostly did play therapy and art therapy which was her standard initial approach to allow for an extended diagnostic period and the rapport building necessary for later work. The art therapy was actually very helpful. I also think that we as parents learned a lot during this period from the play therapy. Although she wasn’t a big fan of play therapy it did seem to set up conversations that would happen later at home and she was much more able to share with us.
*During this period we continued to see our FBT monthly. She was mostly helping us with family transitions at this point. The plan was to return to more manualized FBT to complete stage III at a later point.
*Gymnastics continued to be a grounding activity [there is actually some soft literature that shows swinging=soothing not enough that I would have picked gymnastics for that reason but since she was already in love we went with it]. She competed an L8 score out meet in November complete with amazing bars and pre-meet mother daughter bonding to do “meet hair”.
*This was when we decided that our family was/could be in a position for me to resurrect my medical career. [I had opted to not sign my next year residency contract after our oldest daughter was seriously injured. We moved across the country and I worked part time in my pre medical school career while trying to navigate through the myriad of medical problems she had. I had pretty much accepted I would probably never practice medicine again but I have a very supportive husband who is an even better father.  After a lot of praying and soul searching we decided that me taking a outside of match open spot in the latter part of 2010 was the right decision for our family.] Evan resigned from the prosecutor’s office and started doing part time corporate law consulting when it didn’t get in the way of being an amazing dad. I worried about the transition for her [much more than I did for our youngest who was not quite one] and did invoke some “mom guilt” but my MIL assured me that if I was worried that she was closer to me than Evan then perhaps that was exactly the reason we needed to do this.
*It was also during this period that we accepted the coincidental meeting with the biological parent was probably anything but coincidental. The stalking behavior increased in frequency and intensity throughout this period in spite of an order of protection and revision of the same.
*The plan with the original therapist had been to move towards TF-CBT when she was ready but she liked to do at least weekly sessions with kids under twelve and suggested we might want to see if we could find someone closer.

Hiatus: PTSD Diagnosis [Age 11: February 2011]
*As the stalking behavior escalated her moments of terror, panic attacks, and nightmares escalated as well. This really started to look a lot like PTSD or perhaps CTSD [since the stalking was still ongoing]. The diagnosis was officially made in February 2011 when she went back to see the Child Psychiatrist that she had started with while she was in the PICU initially. He was in favor of TF-CBT, felt like medications were unlikely to be helpful, and were more risky for her specifically due to her other medical problems.
*My “mom guilt” really kicked in because had I realized what was looming I wouldn’t have considered the return to work. But I had, so Evan and I took a deep breath and worked on getting her the additional help she needed. Ok, we tried to do that I still had a few “cry in the car “ moments.

Hiatus: Trauma Work Part II--TF-CBT [Age 11: February 2011-June 2011]
*We started with two TF-CBT sessions a week.
*TF-CBT is skills based [PPRACTICE] and very parent collaborative.
*At least one of us attended with her. If we couldn’t both attend then her therapist taped the session and we watched it later. Once I let go of my guilt that I was working instead of joining her and Evan for TF-CBT I realized that us watching and discussing the sessions together after she was asleep was quite helpful.
*We really tried to encourage and model skills use in between sessions.

Hiatus: Accepting that she needs something else/more [Age 11:July/August 2011]
*After about 5 months of TF-CBT we were still seeing a lot of PTSD symptoms and horrible nightmares.
*Her therapist felt that she had good mimicry, perhaps even mastery, of some of the skills and techniques but was too overwhelmed to use them in the moment.
*We went back to the drawing board with the child psychiatrist who felt that there wasn’t a great pharmaceutical solution to the problem. He felt we needed to increase the therapy intensity but didn’t have a great solution for how we did that if her therapist’s schedule couldn’t accommodate that.
*We were unable to find any local day treatment or IOP programs that seemed to offer what she needed.
*We had some real concerns with out of state residential programs because she was only eleven and fragile on top of that. Unfortunately, we also had real concerns that continuing on our present course was not working and that it might just be entrenching the PTSD.

Hiatus: Partial Day Treatment in a Pediatric Trauma Residential Program [Age 11: August 2011-November 2011]
*Ultimately we found a pediatric trauma residential program which had an attached day treatment program. One of the big challenges of this was that it involved a temporary family split [and since I was finishing up my residency at the time I really couldn’t just take several months off to go with her so Evan was the logical parent to accompany her, yes, I did indulge a little mom guilt on this but eventually I like to think we got past it]. We knew that was going to be hard for her, for us, and for our other children [our youngest daughter was only 20 months old at the time and really wasn’t old enough to understand what was happening]. We did a lot of preemptive troubleshooting and praying and eventually decided that it really was her best chance and we needed to try.
*We were fortunate that this program was near where I went to medical school [and still own a home] so she and Evan didn’t have to spend three plus months living out of a hotel. This also made it much easier for us to come visit because there was a home away from home in a sense.
*The program was modeled around a TF-CBT and PTSD-CBT background. She was there for about thirty hours a week but this gave us the necessary daily feedback to really get somewhere with TF-CBT. We finally saw some real skills consolidation and she was better and better able to use them in the moment over time.

Stage III: More Family Building & Welcome to the Wonderful World of Adolescence [Age 11/12: November 2011-Present]
*She and Evan returned home before Thanksgiving so we had a wonderful Thanksgiving.
*The initial transition back home was actually quite smooth. We had been hoping it would be but planning for it to be worse. As a result my brother volunteered to take our oldest daughter to the national team training/selection soccer camp she had in December because we weren’t sure one of us would be able to get away to go with her. Our oldest really has adapted to all of this. She really is a pretty amazing big sister. I guess she learned from the best [her amazing big brother].
*We got plugged back in with our FBT with two sessions in between Thanksgiving and Christmas. We then moved to monthly sessions with a plan to finally finish up Stage III of FBT. We’re transitioning out of therapy with the FBT now but are keeping the door open on returning at some point.
*She proudly competed her first L10 meet for gymnastics in December. Her bars were amazing and competed on FIG settings. She also competed her laid out Tsuk full which was the big vault she has been working on for the past year. Floor exercise continues to be her Achilles heel event but her coach is very patient and gets that the self esteem issues aren’t fixed overnight. Her tumbling is amazing but she does incur some lack of artistry deductions because her routine is pretty much missing all the filler dance the other girls have. It is what it is and when she is truly all the way healthy then she will have that too. In the meantime she is enjoying competing the other three events and handling having lower floor scores. I will readily admit that I would not have selected gymnastics for her but she loves it and she is in a gym that is supportive and I have come to understand that it has been a good thing for her. She had a very strong first L10 season and even managed to qualify for JO Nationals and had a good meet there. We’re still working with reduced hours and I’m quite wary about her going on to elite so we’ve all agreed on at least one more L10 season and then we will look at the big picture.
*We’re sure she still has more nightmares and fears than the average twelve year old. However, she is very able to regroup, ground, and even persevere with some support from us [and sometimes even without our direct support]. We’re cautiously at a point where we think we just need to continue on our current path with some love, support, and patience.
*We still see a little insecurity in her attachment but this seems to fade a bit more every month. We’re unfortunately still waiting for a TPR now approaching three years after CP/FS originally removed her from her parents. It will happen, and we think that is probably the missing piece in all of this. She needs the security of the TPR as a promise that the past really is the past.

Life Beyond Stage III of FBT  [Age 12-14: August 2012-Present]
*We transitioned out of FBT at the end of July 2012.  
*Our youngest daughter was born healthy in October 2012.  We're overjoyed and very blessed. Our family expanded further later in 2012 and in the first part of 2013 with a sibling pair from foster care. 
*Our daughter competed another very successful L10 season in 2012-2013.  She qualified again to JO Nationals and then with some guidance and direction from us, her physicians, and her coaches decided that attempting to qualify elite was a poor decision for her.  Training expectations during team camps [even at the Junior international team level] exceed the hours that her nephrologist believes are safe. She continued with another L10 season in 2013-2014 and is preparing now for the 2014-2015 competitive season.  She just started her sophomore year so Evan is working with her to keep the whole college recruiting nightmare as sane as possible for all involved.  The head coach at her gym has been great and they have a bit of a reputation for not allowing really early verbals so I think college coaches know that by now and are a lot more reasonable.  
*We finally finalized her adoption during summer 2013.  While the adoption hasn't changed our relationship we do believe that knowing she will never need to see her biological parents again has given her a measure of security and safety she didn't have before.  Evan and I hate that her life was such that this was reality but are glad that it eventually all worked out for all of us.
*We've been thrilled and amazed at the amount of emotional maturity she has gained in the past twelve months.  She is a little young for her grade and last summer we were really questioning if she was going to be anywhere near ready to go off to college at seventeen.  We decided to just see how things played out and start researching cool gap year options if we were still worried in the spring of her junior year.  That is so much less of a concern now.



__________________
**Please understand that any information shared above is not offered as medical advice. Ideally you would discuss anything you find possibly helpful with another physician who has actually had the opportunity to examine your child/loved one. Best wishes!
Kell

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Posts: 40
Reply with quote  #21 
Hello everyone, I've been away for a long time doing life.She is doing very well.16,aware,learning to share feelings(not all the time)and contradictory,sometimes I can't distinguish between teen mood swings and old Ed behavior.All in all things are going well after going through hell! I wanted to ask if anyone has tried the Feldenkrais Method of physical therapy..self-awareness,body consciousness,movement therapies.We have with our dd and she really liked it. Our therapist,herself a recovering food addict, shared her own testimony of how the Feldenkrais Method changed her life completely.DD had 3 visits.She said she felt more focused, aware of what her body was doing,happier and looking forward to the next visit.I just wanted to say we are going back for more and I look forward to reporting back with a more good news..managing my expectations..in the future.But I think when we, as caregivers find something that works we need to share it.With my heart in my hand, I cannot thank you all enough for getting me through the darkest,most trying time in our lives.The song says"If you're going through hell keep on moving,don't slow down".We see breaks of sunshine everyday now. We still have to walk it out in real time, even after 7 years of recovery.But one day at a time we can do it.We are not where we were and we are not yet where we want to be..but It's so much better now! I'm posting the website for more information.I really hope it helps someone.Thanks and lots of love. Kell
http://www.feldenkrais.com/method/article/eating_disorder_recovery_sp_sa_11/
creamlady

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Posts: 112
Reply with quote  #22 
Our journey began the summer of 2010.  My 11 year old had just finished 5th grade and had a health class at the end of the year.  The teacher demonized sugars, fats and made my d feel like she was very unhealthy.  D started to restrict all sugars and fats and started losing weight.  I didn't think much about it until the summer when I noticed her weight loss and the fact that she was wanting to exercise for the sake of exercising (she had never done this).  Then the weight loss really started to concern me and in July I took her to her doc.  They told us she was fine (5'4 and 102 lbs) and that she should not loose any more weight.  So off we go-she seems to maintain until she starts 6th grade (we live in Shanghai during the school year).  Her weight drops more and starts lying about food that she has eaten.  I start researching eating disorders- get the name of Stephanie Milstein in Michigan, and we get on a plane and head back to Michigan.  At this point now she has not really eaten in a few days and won't drink water or swallow her own saliva.  WE take  her to the ER at University of Michigan (at the time they didn't have an eating disorder unit).  It was the weekend and we didn't have an appt with Dr. Milstein until Monday.  ER sends us home, only because they know we have appt with doc and therapist the next week.  So that week, we start refeeding.  WEnt okay in the beginning- don't get me wrong, I had to work extremely hard to get her to eat, but she was eating.  As we got closer to her weight goal, d's resistance got worse and worse.  She would throw all her food away, yell scream, etc.  WE were in Michigan still at that point.  I spent a lot of time in tears- trying to be the calm confident one- but on my off hours would just loose it.  My husband and two there kids were back in Shanghai carrying on with their daily lives.  January rolled around and we all went back to Shanghai.  D was weight restored according to the ED doc, but therapist wanted more weight on her.  We pushed the calories up and up.  Eventually I was giving her 5000 cal per day- meeting HUGE resistance, rage, etc.  Then she started getting rid of food.  This started a year long round robin of her getting rid of food (she would magically store it up in her cheeks and then spit into her glass)  It took me a long time to figure this out.  She was back in school half days and hated it- all the 6th grade girls had changed friends- cliques formed etc.  By June of that year I had taken her out of school but had gotten about 5 more points on her.  Then June came and we had an Alaskan cruise with all of my family.  I basically gave up monitoring her, and that week she ate with her cousins.  She probably lost 5 pounds that week and then ED was full tilt.  That summer was horrible.  I was burnt out, ED was raging.  August came and we flew back to Shanghai.  She was still at a weight that was considered weight restored by the ED doc.  But Therapist wanted 10 more pounds on her.  School started (7th grade) horrible- she couldn't eat and go to school, took her out of school and decided it was time to try Denver Childrens.  We flew to Denver in October- She did so well that we were out of there in a month- came back to Shanghai in NOvember- d did great- we were still gaining slowly- still aiming at the range that therapist gave.  Denver gave us a range that was 10 pounds lower than therapist.  Then Christmas- WE flew back to Michigan- D got bad stomach bug twice!!!!  This girl loses weight so fast-- that in two weeks she had lost 14 pounds and in full ED rage again.  So in Feb, back to Denver.  This time we went inpatient, as d had lost so much weight from her stomach bugs her weight was too low and she was orthostatic.  So she turned 13 in the unit in Feb.  We left Denver in May- at a weight which was considered over her goal weight in Denver- but still 15 pounds below were therapist in Mich wanted her.  So we spent the summer inching up her weight.  She rides and trains horses every day- it is her passion.  So her energy demands are still very high.  I have her on 3800 calls per day now and we are inching up and have put on the 15 pounds since we left Denver.  I have done all the refeeding myself- my husband has NO tolerance for the rage and resistance.   He cannot separate D from ED.  I find myself in a delicate balance during meals to not push ED to the point of blowing- or my husband will blow too.  It is an art- refeeding in my home.  Not a black and white science.  I definitely push ED to a point- just not the tipping point.  We webnt over the tipping point all the time in Denver and in Michigan, and even here in Shanghai, but I have learned now how to manage things when everyone is in the house.  My D is 13 now, she does online school which she loves and trains and rides horses every morning.  She has friends at the barn and family friends.  She has no body image issues, and eats all foods.  LArge portions sometimes still throw her for a loop, but she has learned to stop for a moment and let the anxiety fade.  She has grown 3 inches in the past two years, is now 5'7 and weighs 40 pounds more than her first trip down the rabbit hole.  She got her period at the weight that Denver had given as the goal, which was 15 pounds ago.  I still monitor every single meal and snack.  I am taking it very slow and will know that I will sense when it is time to let the leash out a bit.  At this point Ed still needs me to be around so d will not feel the urge to restrict.   I believe we have come out the other side.  Battered along  the way, but still fighting and laughing to this day. D was violent, hateful, scared and so sick.  Now she is the bright, funny compassionate girl that I knew she was all along.
Nevergiveup

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Reply with quote  #23 
It is high time I post this success story!
Our story:  American family from the Midwest ( 2 girls, youngest with RAN)
Fall 2007:  14 year old began to eat "healthy" and increased exercises.  Became angry and anxious if she could not work out before ballet classes.  Was told she was fat in class by instructor.  Anxiety disorder dx late in year. Loss of menstruation.
Jan.- April 2008:  Treated by psychologist for anxiety
April 2008:  first dx of RAN.  No guidance on re feeding, just to "get her to eat".
Secretly her lunches and meals were being tossed.  Excessive exercise undetected.
April to July:  ed symptoms significant, loss in weight steady
July hospitalized on locked psych unit for 3-4  weeks
Sept-Dec.  w/r and on a monitored feeding plan ( cal, fats, proteins)
ed symptoms very strong
November 2008 I found F.E.A.S.T. and ATDT!!!  I now found people who understood and a concept of empowerment by parents.  I began to learn and read, read, read.  I had hope.
January 2009:  self harming, refusal to follow plan. IP placement for two weeks
March-May:  strongest ed symptoms including purging
May 2009-May 2010:  gradual improvements and gains.  Continued monitoring with gradual letting go and giving more independence with eating.
June-Aug. 2010 Start of a relapse with weight slowly dropping.  Increased monitoring again.  Refusal and strong return of ed symptoms.  August return to IP for two weeks.
Feb 2011:  3rd inpatient stay after many stressors in the family, ed was stronger than ever
November 2011:  Medication may have caused suicidal ideations and last hospital stay for 2 days.

Today:
Eating disorder symptoms are gone.  We still deal with anxiety and OCD but she does not use any eating disorder behaviors and has no desire to.   She still knows she must eat every meal and feels the sensation of disordered thinking when she is in need of food or a snack.  She is a beautiful thriving girl who is proof that all this hard work and persistence does pay off.  Please Never Give Up on these young people, it is so worth the battle.  When you are in the thick of it, it is hard to see the light.  I can tell you it will end and there is HOPE!
SamHeinous

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Posts: 804
Reply with quote  #24 
I think I can finally post on this thread [smile]

History:  D was born small, stayed small, but was a constant nurser, and prolific thumb sucker.  She never ate "meals" but rather "grazed" her way through every day.  Didn't see a problem with that, she was fairly low on the growth charts, but "nothing too abnormal" as the doctors would say.  Sensory integration issues and attachment/anxiety issues became nearly intolerable during kindergarten and we tried to deal with it, but didn't take it too seriously.

July 2012: D starts cutting back things like desert.  Didn't think too much of it, I was pretty permissive and didn't give a rip if she didn't want cake and pie. 

October 2012: D has now cut out meat, and is starting to reduce veggie consumption, and eating almost exclusively fruit.  By the final week in October, she has reduced even that to a single apple per day, and has started refusing water.  At this point, everyone is freaking out, and she's skeletal.  I begin a two week trek all over town to every possible doctor/psychotherapist/nutritionist I can get an appointment with.  Most of them told me she was "fine" and that her BMI of only 14 was "ok".  I begin to panic.  I search the internet frantically.  I'm positive she has an eating disorder, but no one will believe that a 9 year old has Anorexia.  I find the Maudsley Parents website.  Then I find F.E.A.S.T.  I begin to read. 

November 5th 2012:  I get an appointment with a nutritionist in town who is teamed up with the only eating disorder therapist we can find within a 300 mile radius.  I call her cell number and cry that I need to see her immediately, and she rushes to her office to see my D.  She spends about 10-15 minutes with my D and myself, and then has D wait in the waiting room while she speaks to me.  She confirms what I suspected all along - my daughter is desperately ill, and needs to be hospitalized immediately.  Meanwhile, my husband is searching for a pedatrition who will take us RIGHT NOW, and take us seriously.  We finally find one through his dad, who is also a doctor. 

November 8th 2012:  Visit to the pediatrition confirms what we've already found out through F.E.A.S.T.  Our 10 year old has Anorexia, and she is dying.  He admits her immediately for dehydration.  It's her 10th birthday. 

November-December 2012: D spends a month in the hospital, exercising constantly in bed, for 12-14 hours a day.  It takes us two days and serious bradycardia to convince them to NG tube her.  The hospital insists that "she'll eat if she gets hungry enough".  We fight like hell.  Meanwhile, her insurance denies and denies and denies that she needs appropriate treatment.  We get politicians involved.  She is approved to go to Eating Recovery Center in Denver, CO.

December 2012-March 2013:  D spends months at ERC, where they work tirelessly to fight ED.  After many many many trials and tribulations, we win (most) of the battle.  We return home to New Mexico.

March 2013-Now: D is awesome.  She's back in school.  She eats.  She loves life.  She says she kicked ED's butt.  We are ever vigilant, and she has many co-morbids that we deal with daily, but she is now fully weight restored and loving her life.

That's much abbreviated, but needless to day, we're winning, one bite at a time.

__________________
New Mexico USA | Daughter dx. AN on 10th birthday, severe OCD from birth | Round 1 @ ERC | Round 2 currently inpatient locally
Minx67

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Registered:
Posts: 85
Reply with quote  #25 
Well it's our 1 year anniversary since "deer in the head lights" diagnosis and we've been through the washer/dryer spin cycle and out the other side. Thank you for all the support I have received at ADT - I have leaned on this forum on many a bleak night and you have all come to my rescue thank God. My Darling Daughter now knows more about herself than your typical teen but I please to report that she has morphed into a "pain in the next teen" and I am for ever grateful. X2all.

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