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Discharged and now facing realityOpen in a New Window

My d has now been discharged after spending the last 18 months in hospital – the last 16 months as an IP in an ED unit. As she was sectioned under the MHA, she has been discharged on a CTO (Community treatment order). She has to adhere to conditions e.g. agreeing to be weighed, attending appointments, taking meds, staying above 18.5 BMI etc. If she doesn’t then she will have 4 weeks to get back on track and then be recalled back into hospital.

She will be 18 in just over 3 months (gulp) and been in the grip of this for 3 years.

We are lucky in that her community team are good and we have Family therapy every week, individual therapy and dietician appointments. In addition because of her long term hospital admission, we have been offered meal support for college and evening meals at home. Plus some support at weekends for my h and I. We are currently trying to get my d used to her workers – which is obviously a challenge.

So what’s the problem? Well I’m sure my fellow Feasties will know that if you quote a BMI to someone with AN, then that becomes their target. My d was discharged at 19.5 (below her growth curve) and the ED is now doing its best to get her down to that. So less than a week and we have 4 missed lunches, 3 missed snacks, 2 missed dinners and a d who tells me she will stop when she gets to the min.  She knows the consequences but tells me she needs/wants to lose weight and will be happier. She keeps quoting 2kg.

We all know she won’t stop there.

I am beside myself – I cannot face fighting this illness at the same intense level again. I have a new boss in work who isn’t exactly supportive – unlike my previous one. Even attending all the meetings with her is a juggle as I work 50 miles from home.

I feel ungrateful moaning – we have had/getting a lot of support but am so annoyed at the target they gave her as inpatient (95%). When I was refeeding her at home in the early days she bought in to the whole min 100% and tackling fear foods. Now there are foods she hasn’t touched in 18 months which she used to love.

Have any of you had meal support and what were your thoughts? Her team wanted it as they believe she is so entrenched that as a family we will fall over if some support isn’t there. Just to note my h and I are a very strong unit but this is taking its toll on us


'Around the Dinner Table' Online Forum for Parents and Carers


Mood disorder vs eating disorder - how to treat both??Open in a New Window


My first post - my 20 year old D has suffered with AN for 2.5 years.  Finally at a recovery center and is hitting goal weight after being there for 3 months; problem is she has been diagnosed with borderline personality disorder while there -  has acted out with extreme self-harm, substance use (while in 1 week of step-down) and some suicidal ideation. She was admitted to a psych ward for a week because of her behavior.   Meds do not seem to be helping. 

Recommendation has been to get her somewhere to treat the substance/ mood disorder/depression; very few have ED treatment as well.  We will be moving her to a substance abuse treatment with dual diagnosis for mood - but she will have a lot of freedom with her meal plan.  (shopping and making her own meals).  I am nervous that we may be giving her too much freedom with the ED and we will be right back where we started  - dangerously low weight and substance use just to eat a meal... 

Any suggestions?  I am exhausted and worried.


'Around the Dinner Table' Online Forum for Parents and Carers


Are you able to join us in Chicago, April 22?Open in a New Window

Plans are under way to organize a get-together day in Chicago after the AED International Conference on Eating Disorders, April 22, 2018. Interested?? 


'Around the Dinner Table' Online Forum for Parents and Carers


My D won't engage AT ALL with any helpOpen in a New Window

Hi, this is my first post here. 

My D (16, nearly 17) has been restricting severely for several years now, has had no period for several years.  But she hasn't been officially diagnosed Anorexic because although she has seen GP and has been under camhs, she just denies there is anything wrong.  GP told her she was still within a healthy weight (BMI 2% centile even though she has always been in the 90th centile until this started, as she is very tall) and has refused to be weighed for the past 6 months.  Set up another assessment for her with CAMHS last week, and she didn't show up at home to go to the appointment.  Pleaded with her to go, said I would have to talk to her 6th form college and gym if she didn't attend, which I will do.  Had a long chat with CAMHS who say they need to 'close' on her at this point as she has refused to engage with them for so long that it is not safe for them to officially be looking after her as it may stop other agencies then stepping up.

She is a total perfectionist around her studies, high achieving and anxious, still functioning at 6th form college, always cold, always grumpy, her body so tense and rigid, still seeing friends but just occasionally, quite disconnected.  She won't talk to me at all.  In some states she just covers her eyes when I come into the room to say goodnight.  Usually she is just remote.  Other days she is very unhappy, sobbing, saying she feels disgusting, and on those time she will allow me to love her (not cuddle her, she hates that, but she will allow me to give her a foot massage, say, which can seem to bring her some relief from her tension). 

I long for her to open up to anyone.  Set her up with a counsellor (quite separate to the ED, hoping it would make her feel safe).  She made the first appointment but then walked out half way through the next one.  She has always been very self-contained, ever since she was a baby, and it's like the ED has taken hold of this personality trait and manipulated it into some kind of prison. 

Anyway, apologies for being so long-winded.  I know that denial and refusing to engage is part of the Anorexia but from what I can gather J is unusually resistant to any kind of talking or sharing.  We are at our wits end.  I know she's still in there.  Almost at the stage where I want her to collapse so that she can no longer say there is nothing wrong, but she is always careful to pull back from the brink.  She looks well, too, which somehow upsets me most of all - kind of super-modellish.  Don't know what to do next. Does anyone have any wisdom on how to get through to her?  Thank you.


'Around the Dinner Table' Online Forum for Parents and Carers


Crisis for us with binge-eatingOpen in a New Window

Not sure how much longer I can carry on dealing with the lying and deceit and stealing from my 16 year old. 2 days ago she ranted at us for trying to control her life and not trusting her more and we told her she needed to show some trust in us and tell us when she had binged (which she has NEVER done) before we could have trust that she is moving forward. All the time she has found out the combination to the padlock on the locked cupboard and has been stealing and bingeing in secret. Counselling has never made any difference. We aren’t privy to what she discusses but previously she would go and have a nice chat with her therapist, not admitting to or talking about her bingeing and come out feeling better and carry on as before. There is no guidance for this disease. She is NOT restricting, not even relatively and is not malnourished so none of this can be blamed on brain starvation. Please don’t tell me that we just need to keep refeeding. Food is not medicine for her. She binges in addition anyway. We have been dealing with this for years. This is NOT the same as AN and no-one seems to be able to help. If she is not engaged, we cannot make a difference. She has the binge-eating self-help book, is having CAT therapy (evidence-based) and yet seems to not put anything into practice to change. I am tired, emotional and hopeless. As soon as we take the locks off she steals, binges and cannot control her eating. There is no way out. Refeeding does not help because restriction is not the issue. She eats every 3 hours and is supervised and has been for months. We cannot go out, my husband cannot work, all so we can supervise and it is not working at all. Every opportunity to binge has been removed but she still finds a way to steal. We cannot give her any control back ever or it all starts up again. Is there ANYONE who actually has some experience of how to help BED and not just extrapolate from AN?


'Around the Dinner Table' Online Forum for Parents and Carers


Bulimia - and so it goes on and onOpen in a New Window

So the last thread expired a few years ago and nothing much changed.

Daily starving and bingeing then purging. Us supervising to an extent and driving miles and miles as therapy. The NHS have disappeared since age 18 over a year ago. There are no reviews of meds or psych situation. A suicide threat generated an appointment two months after. So she did not go.

Work and being out of school for three years has lifted the depression and feelings of worthlessness to a huge extent and the dyscalculia has not been an issue.

With no gcses my d has qualified and is an excellent hairdresser in an upmarket salon in town only 2 miles away. Her firt job she lost because she didn't eat and collapsed. Her second job she ate and worked hard but got used a bit. This job, has changed her. She eats, works, socialises - normal stuff. Huge wow from us!

This morning she ate breakfast at home out of choice for the first time in 7 years!!!!

7 years. Wow. The only time she ate breakfast was when she was in ip age 14/15

I was so gobsmacked and so was my h.

Had to post this miracle.


7 years in.

Wow wow wow


'Around the Dinner Table' Online Forum for Parents and Carers


Rapid deterioration - we are desperateOpen in a New Window

My first post. I really need help.

We live in the UK (Surrey/London border). D (13 years old - just) diagnosed with AN (binge-purging sub-type) on 2 Jan 2018. Took about 6 weeks to get a referral to a specialist ED clinic so took her to a private ED specialist before Christmas and started FBT (loosely, didn’t know what we were doing really). D gained 1.5 kg over Christmas. When she found out her weight-gain at the formal assessment on 2 Jan she was horrified and severely restricted food intake for a week, then stopped eating entirely 1 week ago. She was then hospitalised (Paediatric ward, local hospital) and as of last Thursday is being fed through a nasal tube.

We also have 2 sons (15 and 10 years old).

D has become totally gripped by AN and still completely refuses food orally. Looks like the ED clinic will recommend D is moved to a specialist in-patient hospital.

My wife and I are desperate. This has happened so quickly and we are totally out of our depths. Our beautiful daughter is fading away and her AN is so incredibly strong.

Does anyone have any advice on:

- where in (preferably) South London/ Surrey we should try to get an NHS in-patient place? (If indeed this is inevitable). Roehampton Priory was mentioned.

- what can we do in hospital now to help her to start eating again?

- is there any advice on coping with these terrible feelings of worry and desperation as parents?


'Around the Dinner Table' Online Forum for Parents and Carers



Hi, First time poster looking for any advice/experience/opinions
I have a 14 year old daughter, started out around 10.5 stones rapid weight loss over 6-9 months .( part of this attributed to throwing her packed lunch away) She is currently around 7st 11lbs. She has 3 meals per day without problems but limits her calorific intake to around 1300 cals (I am in charge of breakfast which means actual daily intake nearer 1500) She does not want to lose weight but is scared of putting weight on. She agrees she has an ED , is very socially active and  has good relationship with all the family. She gets very annoyed if more snacks/food are suggested. She has recently re introduced chocolate to her diet but not as extra calories , just within her calorie parameters. We were referred to local ED clinic, we have attended five times where we have been told the dangers of a restrictive diet etc but nothing else at the moment. She gets weighed and bloods taken every week , her weight is stable at the moment and bloods ok . I feel we are making progress albeit very slowly . I have read all about the methods used in re feeding and I am willing to go down that route but would personally rather gradually build up rather than have to put everyone through the heartache and strife . I realise I may sound like a bit of a coward or naïve but just trying to do the right thing.


'Around the Dinner Table' Online Forum for Parents and Carers


Approaching adulthood and still not at a good weightOpen in a New Window

We've got ten months until my D turns 18.  She's 5'9" and 127 pounds.  She feels weight restored.  The dietitian wants her to be at 135 minimum.  I started talking to the therapist and the dietitian two months, November, ago about open weighing and for me to be more involved since neither would talk openly about her needing to put on 5-10 more pounds.  She was weighed blindly and told to work on those last few pounds.

We started me weighing at home and I am now focused on getting her weight asap. 

She's a junior in high school and works 4-5 days a week in a restaurant.  Since the school year started she's been away from the house for most meals which we the therapist, the dietitian recognize is something to work on.  She needs to eat more meals at home.  I pack a lunch, but she eats out a lot and will toss my sandwiches.

We got her a car she is paying into so she can drive to work and school, her school is 30 minutes with a difficult bus transfer.  The car has turned into a tool for her never be at home.

We need to come up with a good contract to help her and us have good guidelines to be healthy.

I love some of the clear ideas you caregivers have come up with and would appreciate help in devising my own clarity of vision.  


'Around the Dinner Table' Online Forum for Parents and Carers


Memory problemsOpen in a New Window

Hi I haven’t posted for a long time, but my son is doing really well food wise, but not on other fronts, so need advice or if anyone experienced anything like this can help.

He has been weight restored over a year, and left school last May as unable to take a levels, as could not concentrate in class. Since then, he is doing well with eating, but still exercises a lot. He is well over his target weight, and rising. He helps around the house, walks the dogs if I ask him to, really nice to be around, although does not talk a lot, but accepts he had eating disorder, but does not like talking about it now. Think being in hospital was very traumatic for him, as he went in age 17, and full of girls.

He never sees friends, or goes out with anyone ! Still quite obsessive about things, ie exercise, mainly the gym, but now started going to the rec and playing basketball on his own most days. We have got him into kitesurfing, but realised that is also solitary, but hope he will chat to others while at the beach setting up. He eats with us every night and sorts out his own breakfast and lunch, still eats a lot of protein, so I know there is still body issues there.

He has had two psychotic episodes Not long after starting Prozac (his choice to ask doctor for help as I think he felt quite down) but came off it, as felt very agitated on it, so now on no medication. We are now under psychiatrist and early intervention psychosis team, and they are assessing him. Not had any other psychotic episodes although has been a bit paranoid about stuff, and always watching the news, tv programmes that are about smuggling stuff into uk, but does watch music videos too.

He keeps telling them he has depersonalisation and can’t remember what they ask him, so can’t answer the question, and gets fed up as they ask him the same stuff every time. I think he has shut down about everything but he tells me he really can’t remember what I ask him, so I write it down most days. He things he has dementia, so I know that is another worry although he doesn’t seem to think it’s anxiety !

He told them he just wants his memory back so he can get a job and have a normal life. I have tried to get him to try college but refuses to go as said he won’t be able to do the work as won’t remember anything!

Anyone else gone through this and if so, is it just over time he will improve, or will he need meds to help him? He did see a private psychologist but found he could not participate some weeks as could not remember things. I don’t think he is putting it on, and we really want to see him happy and have a normal life.

He is still anxious, as said the other day I wonder what they think of me, and I say it doesn’t matter what they think of you, but I’m not sure he is listening !

He is doing all the right things, exercise, getting out in fresh air, eating well, goes to bed between 10-11and gets up at 8am, so I’m at a loss. Any help advice would be appreciated please.


'Around the Dinner Table' Online Forum for Parents and Carers


Advice please about public exams eg A levels- getting extra time etcOpen in a New Window

My D is due to do her final school exams in June- A levels as we are in UK. She is currently unwell and seems to be deteriorating. I have posted recently about her health. We are trying to support her to take the exams, though we realise that she may be too ill. She is currently 1 year 'behind' her peers due to being too ill to attend school for 9 months, 2 y ago. We would all really like to get these exams out of the way. Should she be able to take them, shall we request extra time? We have just organised that she is in a private room and that she can have rest/ snack/ drink breaks. We know that she is cognitively impaired; decisions are difficult too.
Does anyone have experience in this- UK or elsewhere?


'Around the Dinner Table' Online Forum for Parents and Carers


A request on my FB page from one of my US of A clinician and researcher friendsOpen in a New Window

Friends in the Arlington, VA area. Does anyone have any recommendations for adolescent medicine physicians who are experienced and good with eating disorders?


'Around the Dinner Table' Online Forum for Parents and Carers


Western Australian FEASTies please comment on the draft-mental-health-promotion-mental-illness-and-alcohol-and-other-drug-prevention-plan-2018-20Open in a New Window

Dear West Aussie Feasties,

Please consider making comment on this plan. At the moment it has scant info about Eating Disorders!!


'Around the Dinner Table' Online Forum for Parents and Carers


Good NewsOpen in a New Window

The good news is that our daughter and her husband are expecting their first child to be born around August we are all over joyed!!


'Around the Dinner Table' Online Forum for Parents and Carers


wife in thehospitalwith cardiac problemsOpen in a New Window

my wife apparently collapsed at work, shes been dealing with an ED since ive known her and ive knownher for over 20 years now.  it's been off and on.  She'd get pregnant, eat normally for the baby...we have 2 boys, 7 and 1 and she is still breastfeeding the 1 year old.  but after the baby was born she went back to restricting, eating weird meals

she collapsed at work today snd she's been in the ER. my mother is there with her and ive been getting texts.  i'm actually severely ill myself and unable to do anything without full time caregiver so im waiting to be ale to go to the hospital and advocate for her.  My mom is going to come take me to the hospital

rightnow they are just getting her heart rate stable.  i'm just so afraid that they're going to admit her to a psych ward.  her weight is very low.  her blood pressure is very low and they said that her heart rate is very low.  

for the longest time she wouldnt get any help becuse she was raped on a psych ward when she was 13 years old, got pregnant with his baby and then miscarried.  so all this horrible trauma.  she was in psychiatric environments all through her teen years and they were really invalidating environments that shamed her for having an illness, and left her with a general sense of feeling incapable and powerless, and retraumatized.  she has c-ptsd and gets flashbacks.  I just think that despite how much i want her to get better i dont have much hope that a psychiatric hospitalization will be at all helpful because these places are usually not trauma informed.  She says she was never put in the quiet room but she can still hear the children screaming in the quiet room, even just going to therapy gave her flashbacks for the longest time.  

but theres only so much i can do.  i FINALLY got her to go to a new psychiatrist he specializes in trauma and he does both medication and psychotherapy.  weve had a few sessions.  She won't go to the sessions without me because she doesnt feel safe being in a room alone with a mental health clinician.  I asked if she would go to a female therapist and she said that they dont make her feel any safer because of the power dynamic.  She feels like theres this power dynamic between the therapist and client, where the therapist is morally superior and she is the worthless mentally ill patient whose perspective doesnt matter and no one will believe her word on anything.  i think this is from being abused in a psychiatric ward and no one believed her.

so right now i have to go to this hospital and i'm so scared theyre going to admit her to a psych ward.  is there anything I can say to them to convince them not to?  Is there anything her psychiatrist can do?  Right now she hasnt even told thenew psychiatrist because she is still feeling him out and trying to figure out if he'll believe her.  not many people know about her abuse both as a child and on the psych ward.


'Around the Dinner Table' Online Forum for Parents and Carers

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