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Foodsupport_AUS

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Reply with quote  #1 

We have been dealing with AN now for more than seven years.
For those of you who don't know our story, D first got ill at 13. We initially tried refeeding at home but things rapidly spiralled out of control with medical instability and severe depression. The depression involved early on suicidality and then self harm as well. We struggled a lot with re-feeding, spending the first 12 months revolving in an out of acute hospital care for a nett gain of 3kg. Years 2 and 3 we managed to get some weight gain happening but were still dealing with severe and frequent self harming and suicidality. She did not attend school for nearly two years and when she returned could only do part of the school work. There were several more hospitalisations in those years for medical instability associated with food refusal. Around year 3 to 4 things started to change, weight was close to or at weight restoration and slowly increasing, her ability to cope with life improved, the self injury stopped and the suicidality improved. Every meal for those years was fully supervised, nothing was eaten without being required. We have limped along now for the last three years, D will soon be 21. She has successfully managed to transition to university whilst living at home. She can feed herself after a fashion, there was a big drop of 5kg in her last year of school and then a slow loss of a few kg over the last 3 years. The suicidality is still there but only rears its head at times as does the anxiety and depression. To most people she seems very thin but normal. In short she has functional anorexia.
I don't think our story is rare or unusual when I hear of others who are also dealing with ED for the long term. My purpose for this post is to share techniques that I have found helpful and to ask what others have found helpful when dealing with this long term illness.

Things that didn't work for us included: life stops until you eat, giving D no say in her food or meals. These for the first few years precipitated many of her admissions to hospital. She just shut down.
What did help was an insistence that she would go back to hospital if she couldn't eat. Feeding her a meal plan with no surprises and adding in extras, which I am sure she knew about but some of the time accepted.

As she has got older things that have been helpful have included continuing to support her in engaging with care. She has her regular checks with the GP with minor prodding and before that with her paediatrician. She makes her own appointments with her psychiatrist and actively plans to attend. We still have joint visits and I have occasional lone visits with the psychiatrist to plan care.

It does not seem to help still trying to back her into a corner. If left no choices she will still choose not eating as a method to manage the distress. I have therefore not tried withdrawing supports as I think it will make her choose this again. Certainly her ED threatens to do so, and in the past has always followed through. She is making efforts at gaining weight but fear continues to be the biggest issue, in particular fear of the increasing anxiety and depression that she knows comes with it. All the same state outpatient and inpatient programs require an agreement to follow a meal plan, something she cannot sign up to or agree to. So things move slowly.
What have others tried?


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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  #2 
Foodsupport,

Sorry for what you are going through.  I think you are doing the right thing - your d is managing university and you are there to support and encourage her to stay with whatever treatment options are available.

My own d was very much a 'functioning anorexic' at the age of 21 and I never thought her recovery would be as good as it is now.  The main difference was that she accepted a meal plan because she saw it as keeping her 'safe'.  She knew she had to eat regularly and weighed her cereals and milk in particular, because she knew she would eat too little if she didn't do this.  But for years she had very little variety and stayed at a sub optimal level of physical health.

I think for all our children - expecting that they will keep on that recovery path, acknowledging that it will be difficult, but also expressing confidence that things will get easier as they get older definitely helps.  If we as parents become despondent - how must our children feel?  I kept my own fears to myself and just showed nothing but optimism - but I also expected her to use medication, an ssri in particular, if she started to get too weepy and went down a path of feeling sorry for herself or lacking in confidence, which I took as signs that she needed a boost medically.  If support services were pretty useless - I was honest enough to agree with her and we discussed what was helpful and what wasn't.  She had a third short hospitalisation when she was in her second year at university and her tutor was very supportive and accommodated the stay around her studies.  She came home on a couple of occasions when she went downhill and worked with me to get her meal plan back up.  I gave her the message that I really understood eating disorders so much better than many of the professionals (as we all do as experienced parents on this forum!) and that she needed to work with me if she was going to keep going with her life.  I have also been open and honest about my own battles with depression - and talked about my own experiences in terms of what has worked and what hasn't. 

There is definitely a big change between the early and mid twenties in terms of what the brain is doing.  I have mentioned on other posts that it is only now that my d can see the 'bigger picture' and the focus on thinness and what she looks like have become less important to her, which means she finally found it easier to put on weight.  It was still pretty anxiety-provoking but she was so sick of the illness and the fear of eating what she wanted, and she so much wanted to be like other people and be able to enjoy food - that she was finally able to let go of it.  She never confessed that she ever wanted to eat anything - I just thought she was indifferent to food, but at times she had been severely envious of friends who could eat what they wanted.  

I think the belief is still being promoted that early intervention is the only way to ensure a rapid turnaround with eating disorders - but the reality is that unless you get early intervention along with really knowledgeable determined clinicians who know how to force weight gain to a high enough weight with anorexic patients, or who hospitalise bulimic patients, or patients with exercise compulsion quickly and regularly if necessary - the recovery times are much longer than might be suggested.

Even Locke and Legrange don't claim that FBT is successful in every case - but what they do spell out is that it is the best approach for ensuring that young patients with anorexia nervosa can get back on to a 'normal' developmental trajectory if weight can be restored quickly outside a hospital setting, because it allows young people to continue with their life.  I don't know if they ever claimed it leads to a full and outright recovery within this 'turn around' frame.  

I am seeing that it is quite common for eating disorder patients to be quite ill throughout the teen years and into their early twenties - but I also know of a few parents now who are witnessing a big difference in their children the further along their twenties that they move.

It is clear that you understand how things work for your d.  It can be scary thinking that this journey will never end - and I look back at the past ten years and wondered how we did it.  But I think it might be an easier journey if we are maybe more realistic - and can see that (possibly) the longer route is more' normal' than we realise for many other families.  

Certainly I had to work with what my d was able to do at each stage - I could never have control of her eating when things fell apart early on and we 'limped along' for many years.  Nudging and nagging seemed to be the only things I ever did, but they were enough in the end.


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coffeeandcake

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Reply with quote  #3 
Thanks to both of you for these posts, they are very encouraging to me.
Our daughter is now 19, and all this began when she lost a significant amount of weight shortly after turning 15.  We did FBT, and her weight went up, until she had more control and it went down again, repeat cycle......

For the last 18 months or so her BMI has hovered around 18.5, and she has clear signs that the ED is alive and well in her behaviour.  She now sees a dietitian and therapist on her own, Her Dad and I have seen them two or three times.  She is trying, but has told me recently that she is afraid that if she starts eating more that she will never stop.  I have reassured her that once her body and brain are well they will stop crying out for so much food.  I pray that day she will see this as truth and it will allow her to eat more.

She is quite resistant to our involvement now, and so we receive only small amounts of information from her, but we will be called in should her weight drop below 18, and she has agreed to this.

I don't think I had heard the term Functioning Anorexic before, but that is exactly what she is.  She is in her second semester at university, and scored very highly in her first semester.

Reading your experiences reminds me that there is still hope in what seems to be a very long long long journey we are on.

So thank you!
toothfairy

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Reply with quote  #4 
Hi there,
Just wondering would consuling with Tabitha Farrar be of benefit to help move things on?


http://tabithafarrar.com/

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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.
mjkz

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Reply with quote  #5 
I hear you Foodsupport_AUS.  My daughter quit eating at 8 and by 21 too was a functioning anorexic.  We went through treatment center after treatment center with my daughter getting kicked out more often than not for not being willing to recover, for being a bad influence on the other patients, for not following the program, for being suicidal, for "traumatizing" other patients and staff with her out of control behavior.  By the time she was 21, she was eating enough to keep her BMI at 15.9 but not a bit more and always less if she could.  She did make it through college and then moved home again because she was not healthy enough for a full-time job.  That was when I first heard about FBT and decided it was now or never.  I set up a team that supported me and drew up our first contract.  My daughter spiraled out of control and I ended up having to ask her to leave due to her not following the contract.  She went into supported living and hit her all time low weight within two months of being in supported living (BMI of 9).  She was hospitalized for six months (not her choice) and gained about 30 pounds before agreeing to move back in with me and try FBT.  I became her guardian and got conservatorship over her. She moved back in and we did full-time FBT.  For the first time she actually got into double digit numbers and slowly worked her way up to a semi normal weight.

She is still not fully weight recovered to where I would like to see her but she is at a weight where people simply think she is thin and not dying of cancer or something like that anymore.  Just in the last year or so since she has started working on a farm have I seen a huge relaxation of the rules governing her entire life.  She is finally starting to eat freely although she still doesn't get hungry.  The difference now is she wants to continue on the farm and she is willing to do whatever it takes to do it. She works part-time and throughout the journey I have insisted on at least one volunteer job to keep her engaged and occupied with the world.

So what worked?  She ran out of options basically. She moved out and did her way and ended up sicker than she had ever been living with me. She hated living in the supported living environment and was hospitalized for six months in another country due to her low weight where I saw her once or twice a month. She was sedated most of the time and tube fed.  She found out that living at home with mom was not the worst thing that could happen to her.  We work as a team now instead of against one another but I don't hesitate to push her if she starts sliding back.  We still have a contract that specifies what weight she has to go to a higher level of care at and exactly when she can come back home.  As much as I never wanted her to have to hit rock bottom, she did and that was what finally got through to her that she had to do something different.
Torie

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Reply with quote  #6 
Hi FoodSupport - My best friend's sister has been a functional anorexia sufferer her whole adult life.  My impression is that she (the sufferer) does respond to suggestions from her sister that she needs to eat because being ill has a deleterious effect on her mom and sister.  My own d says she ate for me - and not for herself - when she was acutely ill.  So I would suggest leveraging her concern for others as one tool in the toolbox.  I'm sure you already do that, but I wanted to add it to the list for all readers.  Best of luck to you and your d going forward, xx

-Torie

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EDAction

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Reply with quote  #7 
I attended a talk by Blaise Aguirre, MD, earlier this year and was impressed.  His talk was to parents in a school district where several teens had committed suicide over the course of a year.  He works in McLean Hospital in Boston and is the Medical Director of "3East" - Intensive DBT for adolescents and young adults.  They are experts in using DBT to help adolescents and young adults with severe cases of depression, anxiety, emerging borderline personality disorder and or PTSD.  They provide speciality consultations for EDs.  They offer several levels of care: intensive residential, partial hospitalization, transitional care and outpatient.   I mention it in case it strikes someone as useful.  More research would have to be done about how they handle patients w/EDs . . .  It seemed like he - and the "3East" program - are about trying to help young people in the most difficult of situations find their way to a life worth living.
EDAction

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Reply with quote  #8 
Also, the Center for Balanced Living in Ohio focuses on older teens/young adults/adults.  Carrie Arnold published an article about their program in the Guardian in March '16.  They have a week long program and, at least, have to be a good resource for info.
AUSSIEedfamily

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Reply with quote  #9 
Dear Foodsupport_AUS,

Your situation is similar to a couple of other FEASTies here in WA.

There are some people working on a plan to bring some of the CBL & USCD team that do the 5 day intensive multidisiplinary family intensive therapy program to NZ & Aussie.

If your interested in that then back e-mail me & I can give you more info



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Foodsupport_AUS

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Reply with quote  #10 
AussieED CBL sounds like a great 5 day intensive. I have looked at it, and got to the point of downloading the admissions info and writing to them. It would be so much easier at UCSD given it has much more direct for access, but they don't seem to be running it at present. It would be great if they brought it to Australia and New Zealand. 
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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.
NELLY_UK

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Reply with quote  #11 
I have a d with bulimia which has been severe for 6 years. She was hospitalised for 8 months when camhs fonally woke up to the fact it needed intensive treatment.
Prior to that the focus was on blaming the family & trying to fix us.
Long story short, following discharge services were rubbish & apart from weekly bloods and weighing there was little support. Camhs agreed she could lose weight even with her. As usual we were excluded from many conversations with my d.
Then d turned 18 & all support was voluntary but also available for low bmi so she didnt qualify. She looks healthy and a normal weight.
However, the binge purge is daily. We still hide food, shop daily, supervise after meals, hide carrier bags, buy her 'acceptable meals' that stay in.
If we have to go out and leave her she has a mega binge purge. THIs we try to avoid and hence have no social life or holidays etc.
She works full time, has money for binges, takes days off at zero notice so when we think we can go out sometimes we have to cancel plans or take time off work ourselves. Our own work has suffered and employers are running out of patience i imagine.
I am resigned to the fact i am doing as much as i can cope with on a daily basis and its not working really. I keep chipping away and hope something changes with maturity and maybe a nice boyfriend will arrive like a Miracle!!
Socially my d goes out but has no real long term friends.
I am in a rut and I need to be re energised but not sure what for. I cant get her to use services because they have consistently let her and us down very badly. Funding being what it is - in crisis i cannot imagine things have got better. Services for bulimia dont really exist, its all around AN it seems.
I fear for the long term health of my d, her kidneys, electrolites, teeth etc but notonh shows yet.
Thats what I do to deal with BN.
Not good huh?

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
mjkz

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Reply with quote  #12 
Nelly I think until you really start laying down the rules and enforcing them you are truly stuck.  I would not change my plans but tell daughter she has to find someplace else to spend the day.  You absolutely need to be able to recharge and losing your jobs will not help anyone.

You may not be able to stop the binging and purging but you can stop it from happening in your house.  If she won't comply, then you either live like you are or you start telling her she has x number of days until she has to move out.  I know you have shied away from this in the past although hubby has supported it.  I know you will have a lot of reasons why you can't do it but at this point you've got nothing to lose.  You are getting slowly ground down and are in danger of losing your job and what is left of your life.  I say this only because I care.  No one should have to live through what you are living through.  It might be time to stop expecting a miracle to come along and make your own miracle.  Maybe telling her that she has to let you know what days she has off in advance so you can plan to be there.  If she takes a day off unexpectedly, tell her that she absolutely has to find another place to spend the time that you are not home.  You need and deserve a life too.
Francie

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Reply with quote  #13 
hi Foodsupport, I am sorry for what your d and your family are going through.

I think attitude has a lot to do with the effectiveness, or lack of, our efforts. I like what melstev has to say here:

I think for all our children - expecting that they will keep on that recovery path, acknowledging that it will be difficult, but also expressing confidence that things will get easier as they get older definitely helps.  If we as parents become despondent - how must our children feel?  I kept my own fears to myself and just showed nothing but optimism

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Francie

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