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

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A_J2504
Daughter (now 15) was diagnosed with Anorexia Nervosa in 2017 when she was 12. Compulsive exercising and severe body dysmorphia which soon developed into major anxiety (violent and self-harming angry episodes). “Weight- restored” by Jan 2018 with partial recovery by spring 2018. Supported by ED team (CAMHS) until late 2018 when she was discharged back to GP.
We have always tried to maintain the 3 meals and 3 snacks because she loses weight so easily and is still quite rule driven about what she considers safe to eat. She will eat most main meals that I provide at home but will only eat fruit as her snacks. We have managed to add crisps alongside a sandwich lunch but this often creates an argument.
Recently there have been increased anxieties around peer relationships and this has made her much more anxious and body conscious again. She has admitted to not eating much at school which explains why her weight keeps dropping. She would not be considered low enough weight to be treated for an ED.
Her ED symptoms have unsurprisingly returned with a vengeance and she has directly asked me for help again. She really has had enough of this controlling her life.

I have asked the school to keep a close eye on her but they can’t do much more than that as they don’t have the staff to directly support her at lunch.

I have pursued a private referral to a psychiatrist with a few to getting her some talking therapy/CBT. The response from the psychiatrist is to start her on therapy, including sessions with a dietitian. I am slightly horrified by the suggestion of dietitian as all of my therapy experience has been based on FBT (Maudsley and Eva Musby approaches) which aims to get the sufferer back to eating normally, not to be fixated on a rule-approached diet plan with a certain number of calories. I could be wrong about the dietitian. I am open to hearing others views on this. Also, what else should we be doing to help my daughter? Much of her life is so much better than it was yet this illness keeps coming back to her.
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ValentinaGermania
Hi and a very warm welcome from Germany. I am sorry you need to be here but also glad that you found us.
It sounds like your d was not in full recovery up to now. Was she WR to the weight she had before? Did she gain normal since WR? At 15 there is no fix target weight and they must gain every year.

It was a good decision to stick on the 3 meals 3 snacks rule but it sounds like your d still restricts food and has fear food. It is important to work on that. There is no full recovery until there is fear food left.

Are you still serving and supervising? She should not be allowed to chose only fruit as a snack. A snack must have 2-3 components, one at least with carbohydrates and best ist one caloric drink in addition.

"I have asked the school to keep a close eye on her but they can’t do much more than that as they don’t have the staff to directly support her at lunch."
If school cannot supervise snacks and lunch you have 3 possibilites:
You could leave her at home until she is better.
You could go there and supervise snacks and lunch yourself.
You could take the risk with the morning snack and take her home for lunch.

Talking therapy and CBT normally works when they are WR and can engage in that. I think you need some FBT again.
And you are totally right with your concerns, no dietitian with an ED patient (at least not alone and not before you talked to her).

Is there a licenced FBT therapist in your region? Can we help you to find one?

I do not see that these are mini-relapses to be honest, that is more serious. It is really important to fight all ED behaviour out of the house to see 100% recovery. You can help her by going back to phase 1 and serve all food again until she is on a really good weight and you see a change in behaviour. And I would work on fear food. No restriction is best option to see full recovery.
Keep feeding. There is light at the end of the tunnel.
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A_J2504
Thank you for replying so swiftly.
The CAMHS ED definition of WR was based on the average weight for height. I always disputed that that was enough and my view was that she had to return to the 75th centile on the child growth charts. However, this has always been a struggle and her weight has been hovering between the 50th and 60th centile over last 18 months. Her periods are regular which has been reassuring but I notice her mood changes when she has lost weight. It seems we get close to getting her weight a bit higher then it drops again over the term at school. She is quite obsessed about always being active too. She hates being “cooped up” at home.
I know we have to get more weight on her and so does she (very reluctantly). She says she really wants to get fully better as her school friends treat her differently when she is not eating well. I believe her brain is not so malnourished that she has no control over this. But I do believe she needs more help than family can give her which is why we’ve approached the psychiatrist.  I appreciate that I might soon have to intervene to support her with lunch.

I don’t know of any local FBT therapists other than those CAMHS services based at our regional hospitals - I.e. Springfield (Tooting) and The Maudsley. 
Our private referral has taken us to the Nightingale Hospital (Marylebone). Treatment not yet commenced.
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mnmomUSA
I'm guessing that she was NEVER truly weight restored, and if she's not been "gaining" weight since she was allegedly "weight restored" she has definitely lost ground.  In patients who are teens, "weight restored" is ALWAYS a moving target as they are meant to gain weight each and every year until they are in their early 20's (mid 20's for young men).  If they are not, well, they are falling further and further behind.  And, with people with anorexia, that means the thoughts return.  Also, from my experience, unless and until you destroy every last remnant of this illness, it remains just under the surface waiting to break out and return with a full vengeance at the least tiny bit of weight loss.  It was that way with my daughter.  She was "weight restored" but with tiny vestiges of anorexia (taking a bit too long to eat, and always leaving some small bit behind), and it wasn't until I attacked those things and got rid of them, that we were able to get her truly recovered.  She's been in complete recovery now for years, and manages to catch (and rectify) small weight losses (due to illness for example) all on her own.  But, that was not possible until we extinguished all the behaviors, however small and seemingly trivial.  After getting rid of those behaviors, my daughter was able to engage meaningfully with cognitive behavior therapy-enhanced (CBT-E).  Through CBT-E, she was able to implement the things she needs to stay well.  She will still check in with her therapist when she's under stress (as college will do for anyone).  But, her mental state wasn't in a place to engage with any of these more traditional forms of therapy until her anorexia was well under control with all outward signs resolved.  

All that being said, I think you need to get more weight on her, and get rid of her rigidity around what she eats.  Whether a dietician could be helpful for that, I can't say.  We never ever used one at any point in our recovery.  I felt it wasn't necessary.  But, I know others here have had a different experience in this regard.  

We were able to get rid of the last behaviors via our contract established at the one week family intensive at UCSD.  The essence of the contract was that she had designated time frames for eating all meals and snacks, with 100% compliance (clean plate if you will). Each meal/snack earned one point if done within the designated parameters.  In our case, 35 points were possible each week (5 meals snacks times 7 days).  Each week where she earned 31+ points (in other words, small slips were allowed so long as we were moving overall forward) she earned some small reward, with progressively larger awards if she managed 3 straight weeks,  6 weeks, etc.  She helped  choose these rewards.  Any meal/snack where she failed, she lost certain privileges (such as having her phone) until the next meal when she could "earn" that back.  Failure over a longer term meant progressively higher level care...all spelled out.  The beauty of this process was that everyone KNEW what would happen and all emotion was taken out of it...for her, and for us.  By the time we reached the terminus of the contract with the "BIG" award (3 months of compliance), the behaviors had been extinguished.    Very effective for us.  We were fortunate to have the able assistance of the staff at UCSD to make this contract...it was all in writing, and signed by her and her Dad and I, just like any contract.  :-)  
D, age 18, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)  D at college and doing great!
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ValentinaGermania
A_J2504 wrote:
Thank you for replying so swiftly.
The CAMHS ED definition of WR was based on the average weight for height. I always disputed that that was enough and my view was that she had to return to the 75th centile on the child growth charts. However, this has always been a struggle and her weight has been hovering between the 50th and 60th centile over last 18 months. Her periods are regular which has been reassuring but I notice her mood changes when she has lost weight. It seems we get close to getting her weight a bit higher then it drops again over the term at school. She is quite obsessed about always being active too. She hates being “cooped up” at home.
I know we have to get more weight on her and so does she (very reluctantly). She says she really wants to get fully better as her school friends treat her differently when she is not eating well. I believe her brain is not so malnourished that she has no control over this. But I do believe she needs more help than family can give her which is why we’ve approached the psychiatrist.  I appreciate that I might soon have to intervene to support her with lunch.

I don’t know of any local FBT therapists other than those CAMHS services based at our regional hospitals - I.e. Springfield (Tooting) and The Maudsley. 
Our private referral has taken us to the Nightingale Hospital (Marylebone). Treatment not yet commenced.


Under cahms it might be difficult to get FBT treatment unless you pay private for that.
Here are a lot of parents at the moment that have discussions with cahms about target weights. Average weight for heigh says nothing with EDs. It is like expecting all women to have same shoes size. If she was always 75% percentile this should be your first target and many kids need to overshoot that for some time x to get brain recovery started.

If she is compliant go back to the meal plan and work with her on a fear food list. Check what she ate about 2 years before ED moved in and is now restricting and put it on the list. Then think about how to work this list down. We had fear food day every Sunday and re-introduced one item from that list. Until it was worked down and she ate ALL that she ate before.

When she is obsessed with being active, are we talking about an exercise compulsion? Then this needs to stop. If not, it must be clear that any activity needs to be fueled with extra food BEFORE the activity starts. My d goes to the dancing class once a week and it is clear that this means double afternoon snack before she can go.

What help do you think can a psychiatrist give her? Meds? Maybe...but in many cases meds do not work as long as they are underweight.
The psychiatrist will not make her gain weight. He will not eat with her. Food is the medicine. When the food goes in and the weight goes up the brain can recover.
Keep feeding. There is light at the end of the tunnel.
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Torie
I agree with the others - it sounds like your d needs more weight.  It also sounds like you are well able to manage to get that needed weight on her, with or without a dietitian or psych.  Many here have found that "professional help" is actually worse than no help at all so perhaps worth a try to do this on your own first?

My d was also 15 during weight restoration.  That gave us (just barely) plenty of time for her to be solidly in recovery before heading off to university.  Amazing how long it takes for the brain to fully heal!

I think it's important to add another 5 to 10 pounds after reaching full weight restoration - it is so common for them to inadvertently lose a few pounds during illness boy problems or whatever.  The last thing we want is for them to tip back into the rabbit hole in those times.

I really think you can do this, all on your own!  Of course it is well and good to enlist outside help if you are able to ascertain that that help will be truly helpful. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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A_J2504
Thank you all for very helpful comments.

Torie, my instincts are very much in line with your advice - which is we should be able to do this ourselves and that professional help might be counter-productive, especially if we’re not sure of the credentials and the experience of the professional.

I just feel that my attempts to make progress seem to not be helping my d. She feels that she needs the support of an external therapist. I think we’ve both lost confidence (not in each other) - just a bit worn down after the last 3 years. Worn down by so much misunderstanding from so many people who ought to know better. Now we have made a private referral (we’ve used NHS to date), I was hoping to get well-informed and educated professionals, but I am seriously concerned we could make things worse.

I have always relied on Eva Musby’s resources and I trust that this is the right direction to follow.  I wish more clinicians were more up to speed with her.
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Torie
I don't know if this might be an idea for you or not, but my d's psych was specifically forbidden from discussing food, weight, calories, etc. with her.  Best decision ever for the Torie family!  I have no idea if the psych helped her or not, but I thought D might appreciate the time and money we happily contributed in the hope that it did. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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ValentinaGermania
If you chose external psychogical support, think about talking to that person under 4 eyes first and check what she/he thinks about refeeding at home and FBT.
The last thing you need now is a therapist that tells your d she needs more control and she is healthy enough to make her own food decisions...
Keep feeding. There is light at the end of the tunnel.
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MKR
Hi and welcome @A_J2504 ,

1. The contract:

The one that works best is found at http://www.eatingdisorders.ucsd.edu and you just adapt to your current circumstances.  Great website, too.

2. Dietitian:

You are right, can be counterproductive. For us parents they are good support,  at least in the beginning. But the nature of their work is all about nutrients and numbers, something our ED kids should not be exposed to. (2 years on, we still can't shake off the photos of "perfect" meal proportions).

3. School/ sport 
You might have to put sport on hold or reduce for a while.  Have a word with your D's PE teacher and she will know what behaviour to watch for. 

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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A_J2504
Thanks MKR,

Can you clarify what you mean by “contract”? 
That website is indeed very useful, thank you.
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ValentinaGermania
I think that MKR meant that it could be helpful to have a contract with your d. What you do for her and what you pay for and what she needs to do for that and what consequeces a weight loss or refusing meals/snacks has and so on. Many parents here did that (my hands up, too).
Keep feeding. There is light at the end of the tunnel.
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MKR
A_J2504 wrote:
Thanks MKR,

Can you clarify what you mean by “contract”? 
That website is indeed very useful, thank you.

I think that MKR meant that it could be helpful to have a contract with your d. What you do for her and what you pay for and what she needs to do for that and what consequeces a weight loss or refusing meals/snacks has and so on. Many parents here did that (my hands up, too).


That's right. Simply put, for each area that needs adressing (like Eating, Exercise, Behaviour ...    you choose according to your current situation) there are:

- Expectation 
- Reward
- Consequence 

We used the UCSD template (pdf attached pdf UCSD contract guide.pdf    ) but I can email you our template in Word.

For Reward we used something our D was saving for or more independence.

For Consequence we used increased supervision, such as (to tackle exercise addiction) bedroom door coming off or a parent sleeping next to her bed.

Our D was at a stage where she could have some input, like giving suggestions of the Reward.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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MKR
Hi again @A_J2504 ,

I have tried to find a way to attach this Word template to an email, but here it is.  I hope it helps. Once you have a contract, you can review it after a while, especially as things improve.  It gives everyone a structure and it's easier to remember what actions each person is to take.

Our finished contract was a hybrid of my and dad's input, so we are on the same page - literally.  The draft has them separate, so you can have more suggestions.

All the best,
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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Torie
MKR wrote:
Our finished contract was a hybrid of my and dad's input, so we are on the same page - literally. 

Love that! XX

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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