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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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jpUK
My first post, and looking for some encouragement that there is still hope....

My wife and I have been struggling with our 16 yr old daughter's AN for over two years now. She is now ten weeks in to her second spell of IP (ignoring the misguided admissions into general psychiatric wards which inevitably resulted in rapid weight loss before we overruled our CAMHS team and discharged her).

She has eaten or drank nothing orally for the last eight weeks and has been NG fed throughout her admission. She resists this and needs five members of staff to restrain her during this. She is cutting her arms, headbutting and punching the walls at every opportunity and has made three suicide attempts since being there.

The clinic really don't know what to do with her as she is resistant to any therapy, and just wants to die. They want to transfer her to a general psych ward, but I know that they won't be able to handle the nutrition aspect of her care needs and her weight will plummet (we've been there before), which is currently OK. Equally, the ED clinic where she is are struggling with her behaviour and suicidal intent.

Where do we go from here?
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Foodsupport_AUS
Welcome to the forum, sorry that you have been struggling for so long. Treatment for AN can be very hard on the person with ED, my own daughter has spent a number of years of her illness also suicidal, multiple attempts, and self harming. 

It would seem to me that the most important thing for your D at the moment is a calm but firm insistence from everybody involved in her care, that although she is very distressed and miserable that they will not let her die, and that she has to have nutrition no matter what. The fog for my D did not start to lift until after there was substantial weight gain (not full weight restoration), consistent daily nutrition every day for two years (we had a lot of ups and downs before that) and she was finally stabilised on both Venlafaxine and Olanzapine. She had various other medications along the way as well. It was all very slow and gradual for my D with no clear one thing that was the game changer. A therapy dog was very helpful for her. 

It would seem that for your D if she is going to go to a general psychiatric unit it should be one on site with a eating disorder unit where they can manage NG feeding/ insistence on feeding. Keeping her safe from both aspects of her illness - her suicidal behaviours and her starvation is what is needed at the moment. 

We are in Australia, and our experience with a general unit was also poor. Please don't lose hope. We are now 8 years down this path, I have a D who is still working on her recovery but she is happy, and mostly healthy (80 -90% there), and I am sure will get there one day. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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jpUK
Thanks Foodsupport

By substantial weight gain, do you mean weight gain in excess of 100% on the BMI charts? We have fought our CAMHS service from the start about our daughter's weight target, always believing it to be way too low for her (given her history - when healthy she was around 8Kgs over the "target" and never fat). However, they were intransigent on this, and once our D reached her minimum "healthy weight", called her WR and started to withdraw their support, until the next crisis. D knows this "target weight" and will not move beyond it, as the "experts" have spoken. Her blood work and the fact that she has not grown in three years or started her periods says otherwise...

"It would seem that for your D if she is going to go to a general psychiatric unit it should be one on site with a eating disorder unit where they can manage NG feeding/ insistence on feeding"

And there's the problem - I'm not sure such places exist in the UK. Assuming there are not, I minded to fight to keep her where she is.
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Foodsupport_AUS
With my D we have struggled enormously to get to 100% BMI on the charts, and she is not there at all at the moment. In D's case the highest weight we got was 22kg above her weight at her sickest, this is the closest she has ever been to "weight restored" and is about 10kg above her highest weight pre-illness. She got sick at 13 (just after periods started) and is now 22.  Although there has been subsequent big losses, and rises since then her weight has been much more steady over the last 4 years with generally slow changes. She currently is only  1kg above her pre illness weight, so definitely underweight over that time frame, however over the last 4 years any weight losses have never been more than 2kg. She will gain a bit, lose a bit - so wobbles around but will be steady over 4 -6 months.  We got transferred to adult services at 18 and any impetus to work on getting back to full weight restoration was stopped. Not sick enough to require hospitalisation and not willing to be voluntarily involved in an active program to gain weight. That being said even keeping steady has allowed for enormous mental health gains, and she is getting periods and medically stable. I suspect that the stopping the weight cycling and getting some form of stability has had a very beneficial impact even though not weight restored. 

I agree with you that it should never be accepted (as an ideal) that she goes to less than her pre- illness weight and it is quite possible she needs to be more. Withdrawing support when just weight restored is truly criminal, it plays into the illness. For my D she was still incredibly mentally ill at that highest weight, though not as ill as prior. This illness is both physical and mental. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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Torie
Hi JP, and welcome.  So sorry you needed to join us here.

First, let me say that there is ALWAYS hope.  THis vile illness is a monster, but people can and do recover from positions similar to your d.

You are correct that your d needs to regain all the weight she has lost.  I'm so sorry the current team does not know this as research has shown that FULL weight restoration is necessary for recovery.  In almost all cases, that means going back to highest previous weight and then adding a little each year through the teen and young adult years. 

As I'm across the pond in the U.S., I don't know enough about your health system to advise how you might arrange the best possible care for your d.  There is a lot of written material out there; hopefully someone can point to resources showing the need for FULL weight restoration.

Please feel free to ask all the questions you like. xx

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

I am so very sorry for what you are going through.  It is horrendous watching your child suffer.  However, she is very young, she is IP, nutrition is going in and you need to find a way of moving forward.  What meds is she on right now?  Olanzapine is usually used for anorexic patients at a low weight and if she is not on it at present, I would suggest it.

While you are suffering beyond belief, you need to display a low emotional response to what you are witnessing, talk to your d about recovery and the need to start focusing on the future, telling her calmly that she is going to come through this and that you will be there to support her.  Try not to worry too much about the requirement for an ng tube right now - if it helps get the weight on, then so be it.  Do all you can to keep her on this specialist unit for as long as possible, and support her through the transition from ng to eating again.  She is not choosing to be ill, her weight is clearly very low and the anorexic voice which presents itself in these circumstances simply will not let her eat right now.  

Try and exude confidence, don't let the illness manipulate you in any way, keep insisting on the need for an ng tube as long as she cannot eat in a normal manner, and give her the expectation that it will get easier, but also that she will start to be stronger to fight the anorexic voice.  And that you to expect her to start eating soon.  

What were her dreams before her illness? What did she want to do with her life? What makes her smile?  Does she still have friends who care?  If so, encourage them to come and visit her on the ward and just talk about ordinary things.  Your d needs to feel that there are people around who care.  The illness is making her feel worthless.  Just keep telling her that you love her and will get her through this.


Believe you can and you're halfway there.
Theodore Roosevelt.
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MarcellaUK
My daughter too struggled with self harm and suicidal ideation as well as AN (binge purge subtype). She is not fully recovered as an adult but she is so so much more stable both in weight and in impulsive self harm. She has a long term partner and a home and the most spoiled therapy cat in the world. She did have a fairly long term admission to a specialist ED unit on the same site as a general adolescent mental health site and I know that the professionals in both units found it beneficial to liaise with each other over treatment options
Fiona Marcella UK
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deenl
Hi jpUK,

So sorry you are dealing with such a difficult version of the illness. Your story reminded me of another parent on this website; Hebrides. If you use the search button on the top left you can pull up her posts. Perhaps something in her journey might help you also.

Wishing you strength and courage and that little bit of luck we all need now and then,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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