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HateEDwithApassion

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Reply with quote  #1 

Hi all,
Just wanted to share our experience at ERC Denver Family Days, where my D is currently in adult residential treatment. In case any other families may go there one day.

In a word... it was incredible. Amazing. I am extremely impressed with the program. It was three very full days of session after session, and not one of them was fluff or a waste or in conflict with what we discuss here. Parents/loved ones are viewed as key to a patient's recovery, but what that looks like from child to adult patients takes a different road.

The session from Dr. Ovidio Bermudez on the medical complications of anorexia and what's happening in the body and the brain was literally riveting. The explanation of it being a dormant genetic "glitch" (my word) that is exploded by negative energy balance (mostly some form of dieting or healthy eating or even an illness) was powerful. Also, the explanation that an ED brain is literally delusional and psychotic in a clinical sense while a patient is deep in the illness helped my H to finally understand why our daughter can't be reasoned with, yelled at, or talked into eating with facts or guilt or anything else. Why yelling at her actually makes the ED more powerful and shuts her down. It really changed my Hs view and gave him great sympathy for her.

Another key fact we heard by Dr. Craig Johnson, Chief Science Officer, was that anorexia recovery actually has higher numbers than one might think. At 10+ years of the disease, more than 70% are in full remission. What's interesting is that other EDs have a faster recovery - 4-10 years to reach about 60+%, but that levels off and never gets much higher. The point, he said, is that anorexia is a slower recovery, but a higher recovery at the 10+ years mark. His point was not to give up. When we are weary... when clinicians think our child is beyond hope because of the length of the illness, it's just not true, according to the statistics. He wagers that because the average age of onset is 14, it takes about 10 years from then for the frontal cortex to mature, and maybe that maturing leads to recovery finally taking hold. So keep hoping.

Another highlight was a panel of adult sufferers who are in all stages of recovery at ERC. They allowed us to ask any question of them, and they answered bluntly. What do they wish parents knew? What is helpful when supporting them? What is something your parents did that made things worse? Why do some go through treatment after treatment? What makes a good treatment program, in their opinion? What are they most afraid of in recovery? In going home? What motivates them to get well right now? Etc. They were kind and compassionate as they watched parents cry and their voices break while asking questions. And they told us at the end - we don't blame our parents. It's not your fault.

The final session was going knee to knee with our loved one and answering three questions about our relationship - what we will accept and not try to change, what we value in our relationship, and what we commit to do going forward in the relationship. All families did it with their loved one in the center of the circle, and the group listened. It was beautiful, and thoughtful and healing.  They wrapped up with any questions we hadn't had addressed, comments, and we all contributed a word to the group that we wished for them. Words like strength, hope, faith, patience, wisdom. It was really amazing.

I'm so grateful we went.

My D is struggling. She has probably been secretly struggling even when she seemed well.  This illness has a strong grip on her, but I have hope, but also a more realistic picture of what the recovery journey may be - ups, downs, setbacks, steps forward, and probably longer than I want. But it's pretty typical and I feel more ready than before.


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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
Foodsupport_AUS

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Reply with quote  #2 
Thank you for you update. That sounds like it was a really valuable program, and again about getting everyone working together and understanding each other. All important. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
melstevUK

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Reply with quote  #3 
HateED,

I am delighted that this was such a positive and helpful experience for you all.  It sounds to be a brilliant programme.

Dr Craig Johnson's words totally describe my own experience with my d.  At 25 she is now fully recovered - and at an even better level of recovery than a year ago at the age of 24, when I thought then that she was recovered.   Brain development definitely plays a part.  Also, the desire for absolute thinness which is in itself such a driver, has been left behind as the peer environment that fed into that desire - admiration from all the young women around on the clubbing scene in particular - has virtually no part in her life now.  She knows she needs to be well to work and she can see 'the bigger picture' of all the elements which are required for a full and worthwhile (not always happy) life, and I think this understanding has made it easier to leave the illness behind.  Which is not to say that it was easy, or that she likes the feeling of being heavier - but she understands that it has to be tolerated.

So it took us ten years - and she had probably been restricting and started to be ill long before the age of 15 so you could say it took longer - with lots of anxiety and frustrations along the way.  And it is why I keep trying to pass the message on to all parents with teenagers or children in their very early twenties to keeping pushing and encouraging and focusing on that better future, even if it seems impossible that change will occur.

It has also taken some adjustment on my part to realise that my d could actually have the body of a mature woman and not that of an emaciated teenager - she had looked like that for so long that I had assumed she was genetically thin.  She also went through the period of looking 'fat' around the face in particular while the weight has redistributed itself and I had to keep encouraging her that everything would settle down after a year of eating 'normally'.  


I remain for ever grateful to FEAST - because if I had not found the forum and the up-to-date knowledge about eating disorders, and if I had put my faith in old school thinking, my d would have been one of the 'revolving door' patients in and out of hospital while I waited for her to 'want' to recover.  I shudder to think of her life as it could have been.

So however hard things are - for every parent who finds his or her way onto the FEAST forum, there is at least more hope for their child given the support and advice available here, than any other place on the planet probably.  Of course some parents find great treatment providers, but that is still far from the norm.  I look forward to the day when great treatment will be available everywhere.

HateED, I am so sorry your d is still struggling but I am also really happy you were all able to share such an encouraging experience.  The comment we keep using 'It's a marathon and not a sprint' comes to mind.



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Kali

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Reply with quote  #4 
HateedwithaPassion,

The Family days sound like a really positive and helpful experience and thank you for posting about it. 
Curious about the 70% recovery rate after 10 years, is that from ERCs research about participants in their program? It sounds like you and your husband are in a more hopeful place now which can help fuel your care for your daughter.

MelstevUK, 

I loved your post, those of us with older teenagers can take away some hope from what you have written.

Kali

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EC_Mom

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Reply with quote  #5 
Thanks for this review! What a great story. It can offer hope to those still fighting after several years. And so good to know that there is a treatment center that doesn't focus on "underlying issues" and blah blah old school stuff. 
toothfairy

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Reply with quote  #6 
Thanks for this thread! It is very interesting.
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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery, (Phase 3 ) and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
HateEDwithApassion

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Reply with quote  #7 
Hi,
I pulled out the powerpoint from Dr. Craig Johnson. It's not just ERC patients but a larger sample. I found the citations but can't find the study research online. Basically, at <4 years, Anorexia full recovery was at 33%.  At 4-10 years, 47%, and at 10+ years, 73%.  Compared to bulimia which was 40%, 67% and 70% respectively in those same time periods.

His point was that anorexia recovery bypasses bulimia, but it takes much longer for many to get into a full remission. So don't give up. And this information is important for clinicians and insurance companies to know so they too don't give up and label the patient as chronic. They are never out of the illness, for many, so it's not chronic. He had a slide that says, Expect a Miracle. No, Expect a Cure...  and in that slide, it says that the probably of recovery increases with cognitive maturation. 

In the adult track, we talked a lot about being support people. That they really recover better when they have love and support vs. fixing from support people in their lives. The panel of recovering anorexics also said they hit a point when they were ready to battle against their illness for themselves, and even now, at weight restoration and with some ready to go home, it's hard. 

My daughter is struggling. She wants to come home, so she's motivated to eat, but she said she knows her brain is still very ill and the thoughts are strong, and she is hopeless that she can ever get better. She texted last night and said she just doesn't think she can overcome this because it's been a part of her for so long. It made me sad. I just validated her feelings - I can imagine this feels so hard and makes you sad because it's been a part of you for so long, but we love you and support you.  

I am afraid. I am. I am afraid for her to come home and start the cycle again, and I pray they see her mental state is such that she needs to stick around. We have her on board with doing the UCSD week when released, but I'm kind of nervous if the two programs dovetail - I don't want to send mixed messages. I'm going to call UCSD today to talk through that issue.



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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
melstevUK

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Reply with quote  #8 
I really sympathise, this illness takes so long to overcome and it is a draining process for the family.

You might find at this stage using some techniques around motivational interviewing helpful.  It could encourage your d and also make you feel you are being constructive.  Basically it involves looking for anything positive, however small, which indicates that there is some move in the right direction and reflecting it back.

So on this occasion, as well as sympathising with your d - you could have said something like 'I understand just how hard this is but the fact that you recognise that you are ill, and just how your brain is still struggling, are indicators that you are already on a recovery path.  The fact that you understand that you are ill means that one day you will be able to move away from it, even if the process is a long one.  As your brain matures over the next few years, it will get much easier to deal with.'

Or with words which you feel comfortable with.  You are promoting the idea that recovery has already started and that your d will overcome the illness which in turn lessens the sense of hopelessness.  Once you start to be aware of how it works, it becomes second nature.  

I used this kind of intervention occasionally and it definitely helped.

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Believe you can and you're halfway there.
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breathingmomUSA

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Reply with quote  #9 
HateED,

I was at family days too! (I was the one who put the name of this and another online support group on the white board the second day!). I 100% agree with everything you said. I so regret I couldn't be there for the third day.

Besides everything you mentioned, something else I found incredibly helpful was the role play therapy session done by 2 family therapists. One played the ED sufferer and the other the therapist. Just about every word out of the sufferer's mouth were words my daughter had said. It was validating to understand that my daughter's fear and resistance is typical, that they see this all the time and know how to work with it. The way we were coached to respond (validation, validation, validation, don't try to "correct" with facts, the connection is the most important thing so that they feel heard) was amazing. It was also my first exposure to ACT. I love ACT! I'm familiar with DBT and both modalities are somewhat similar in that they are mindfulness based behavioral therapies. But something about ACT seems a bit more simple and straightforward, like maybe it won't be so hard to maintain once out of the treatment environment. My daughter really connected with the DBT she learned at USCD as an adolescent but then there was no DBT remotely treatment adherent within a reasonable drive once we returned to the midwest.

My daughter's 18 and was in remission for a couple years after we did FBT. This severe relapse is scary and bewildering. I'm glad we chose ERC. She has a long way to go; her weight is going up but her mind is still very entrenched in the disorder. Having her at ERC was the right move. Foing to family days helped release me from my fear and confusion for a little while. We will figure this out step by step.

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Daughter (16) diagnosed with AN at age 12 1/2. She's weight restored and eating freely.

Every worthwhile accomplishment, big or little, has its stages of drudgery and triumph; a beginning, a struggle and a victory. -Gandhi
eternalhope

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Reply with quote  #10 
I completely agree with the review (great job, HateEDwithAPassion!), and I can add additional information, as I attended the Child & Adolescent presentations, actually twice.  My h also attended Family Days, and he came to really understand the mental illness piece as well.  My 12-year-old d was in Residential for 6 weeks at ERC Denver, and then in their PHP program for 3 1/2 weeks.  I plan on writing a full review of our experience, explaining in detail, why I believe she received the best possible care while in treatment there.  Our experience overall with ERC Denver was phenomenal.  I can tell you that through my time there, I became friends with the parents of at least 10 other patients, and I can honestly say, everyone was very happy with ERC's program.  But more on the program later.  Family Days is a 3 day series of presentations and talks that take place between around 8 a.m. and 3 p.m. each day.  They run once a month on a Wednesday - Friday.  It's free to attend, and a continental breakfast is provided each day.  The first day all families are combined.  On the second and third days, the families of Adult patients attend the seminars in a different location (and the presentations are different), and the parents of the patients in the Child and Adolescent program, attend at the Family Resource Center.  These presentations focus on brain development and what that means for your child, as well as accommodation/not negotiating, FBT, and the dietary plan.  There are also a couple of patient involved presentations that give you a good sense of what happens in multi-family therapy.  ERC does an outstanding job on the 3 days, and you have the opportunity to ask questions of top leadership, and you get to meet the head clinicians.  The business manager also explains the insurance process, with explanation on how they work internally and how they work with families, including an explanation of concurrent review, peer-to-peer review and the Appeal process.  You will also leave with a book with lots of information, copies of the presentations and additional resources, such as book suggestions.        
Torie

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Reply with quote  #11 
Quote:
Originally Posted by HateEDwithApassion
I am afraid.


Yes, of course you are.  This vile illness shakes us all to the core.

But you also seem cautiously optimistic.  So glad to hear that!!!  Things are moving in the right direction - one day at a time.

You know how I always say not to argue with an irrational person?  There's one exception I make: When they say they will never get better, I always say with all the confidence I can muster, "It WILL get better."  I think it helps.

Thanks for the informative review of ERC Denver.  So glad your d is there.  xx

-Torie

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Francie

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Reply with quote  #12 
Hi HateED, thank you for your review of ERC, and your review of the family days.  I got a lot out of it so thank you for sharing and helping. It was hard, I'm sure, to hear that your d is still struggling but it is a good sign that she told you where she's at in her recovery. To me, by her sharing like that with you, she is asking for your encouragement so I like what melstev wrote about that. Good advice!

I want to ask breathingmom -- what is ACT?

Thanks! XO


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HateEDwithApassion

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Reply with quote  #13 
Hi Breathingmom!

I wondered if we would connect again on here. Yay! I'm so glad!

I also agree that ACT seems very powerful. And less to remember than DBT while still activating behavior changes/positive coping choices based on your values (in DBT, having a life worth living idea).

I'll let you explain what it is, but for me, I saw it as another treatment modality that is about accepting feelings vs. changing them, but then making a decision to respond to those feelings with behaviors that align with your values. They might be family, honesty, achievement, whatever. Everyone chooses 5 or 6 values that are important - and then the question becomes, is a behavior consistent with what I say I value? Does restricting or binging or SH help my family relationships, am I honest when I do it, does it keep me from working or going to college? Etc. 

Would you explain it that way breathingmom?




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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
evamusby_UK

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Reply with quote  #14 
For anyone interested in the  figures HateEDwithApassion quoted from the powerpoint, I thought they might come for this study:
 Eddy et al (2017) "Recovery from anorexia nervosa and bulima nervosa at 22-year follow-up). But the figures are different from the ones you quote, so it must be another study.

My notes from the Eddy et al 2017 paper:

How many recovered from anorexia:

  • 31% (one third) at 9-yr follow up. 63% (two thirds) at 22-yr follow-up. 
  • So I conclude that 32% of the original cohort recovered some time between 9 and 22 years. 
  • Seems that at 9 years, 69% of original cohort were still ill, and we're told that approx half of those progressed to recovery some time between 9 and 22 years (35% is close enough to 32%).
  • It also seems that after 22 years, 37% (over one third) were still not recovered.

 


It's a safe bet that these people were not treated with the best methods of today, so nowadays we should hope for far better figures.


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Eva Musby, mother, author, produces lots of resources for parents at http://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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HateEDwithApassion

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Reply with quote  #15 
Ugh - those numbers are quite depressing. I'm going to try and find the reference for the study quoted to me last month. But you are right - starting treatment 22 years ago or even 9 years ago means FBT wasn't being used or probably any evidence-based treatments.

Still makes me sad to read it.

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17 yo D. Diagnosed in July 2013. W/R in Sept. 2013 and has remained so. Roller coaster on and off since, mainly with ED under control but co-morbid depression and other negative coping mechanisms making our life hell. Trusting in God for daily strength and wisdom.
LauraCollins_US

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Reply with quote  #16 
Craig Johnson presented on this earlier this year at the IAEDP conference and I asked him for his slides on this because it is SO IMPORTANT that we not give up and not lower our expectations, especially knowing that the stats on this that have been often repeated turn out to be wrong!

22 year follow up.jpg 


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Laura (Collins) Lyster-Mensh
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Reply with quote  #17 
duration.jpg 

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Laura (Collins) Lyster-Mensh
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Foodsupport_AUS

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Reply with quote  #18 
Thank you so much Laura for posting those slides. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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