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

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sorenlorensson
Hi all

hoping for some words of wisdom to manage the current stage in this horrendous illness

Our beautiful d, aged 15, diagnosed with AN last April. Refed at home with support from a great team, but decided to go IP late last year due to suicidal thoughts, increased self-harm and worsening depression.

WR shortly after admission to IP, and we would love to get her home and back into real life but depression is hardly lifting and self-harm is frequent. Have had several trips to a&e lately and it's just so hard to know what to say, how to deal with it - and to see how and when these symptoms will be alleviated. 

We feel kind of stuck. We know that she needs to see friends, family, do fun things away from IP - and we are increasingly able to do this which is great. But there is the constant threat of another (and potentially worse) incident hanging over everything we do.

Anyone else experienced similar? What helped - and what didn't?
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tina72
Hi and a very warm welcome from Germany,

first idea that gets to my mind reading your post is that she might not be truely WR. At age 15 she is still growing and has to develop a female body so I like to say no target weight and no WR for a kid of that age.
It is quite normal that depression and self harm gets worse around WR and with the last 2-5 kg to go. So maybe the team stopped adding weight too soon as many professionals do. We say here state, not weight. We say feed them until you see a change in mood and behaviour.

So I have some more questions: what about ED behaviour? Is she eating well and everything she ate before again? Can she maintain her weight alone or does she start to restrict again if she has to chose what to eat? Is there other ED behaviour but self harm left (exercising, hiding food, purging, counting calories...)? Is there fear food left? Or is mood and self harm only problem left?

In many cases the depression and the self harm stopps at some point when the weight is back to a good number. That is often more than they had before AN moved in. And it is often more than the professionals thought that is needed. We got a target weight from hospital which was just BMI 18,5 which means just not underweight any more and that was for sure not enough. Most parents see a change at BMI 21-23, some need to go to 25 or higher. Do you have a historic growth/weight chart from her? That would be helpful to see what she should weight. Are there siblings you can compare to?

My d harmed herself (started in IP) with cutting her arms. It was better when she came home and I saw it was stress related and she needed to get all the anger and frustration anywhere and she decided to put it against herself as she did not want to hurt us. So we bought her a punching bag and asked her to hit that when she feels she must cut herself and that helped (in fact I used it a lot, too🙂). Since WR + 1-2 kg more the punching bag was packed away because she did not need it any more.
Keep feeding. There is light at the end of the tunnel.
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teecee
Hello
we had to deal with an actively suicidal 15 year old D (now 17) with R AN so I understand how emotionally draining it is for you. 
I was given some great advice by the GP to ask directly if she was feeling suicidal/made plans/how/when,  only when I felt she was really low and to not keep asking at other times. Also that when she did confirm she was this way we had to remain calm (hard I know) and reassure that we would keep her safe/we loved her etc. We chose our words carefully and avoided phrases like ‘it will be ok.’ So we validated how she was feeling and then reassured her. This encouraged her to be honest with us and she became more open than she had ever been before- I mean from 0% open to 75% which I will take any day. 

I encouraged her to record on a calendar green, amber and red days to see if there was a pattern and also to indicate to us she may need extra support without having to ask for it and to be given space/safe time alone. 

Practically we would keep obvious things in a locked cupboard (sharps medicines and cleaning fluids/poisons). 

Initially she didnt want to take medication then changed her mind and so she saw a psychiatrist to discuss it who accepted it would help the depressive thoughts. He was willing to provide however in the interim she was still eating well and coincidentally started to understand herself more (she is awaiting an Aspergers assessment and has definitely matured beyond recognition) which she turned to me and said “mum I think I can sort this myself...I think it’s more to do with learning about myself and the autism rather than the food issue” 
Since that point she has really blossomed and her mood has been ‘green’ mostly. It’s helped her see that there are positives in the day and one small negative does not make it a red day. 

Also writing a journal and recently looking back has helped her see how she see how she sees things differently now and that things do change constantly and that time does not make everything stop forever and remain stuck. 

Its great that you are able to involve her in normal stuff as that will give her hope. I chose to step back a little after she was WR and give her independence without overtly micromanaging although we still watch like a hawk and act on any signs of relapse. 

We reiterate that we trust her to make good decisions and if she doesn’t we gently challenge and support. 

Coincidentally stepping back saved my mental mental health which made me less anxious and had a positive affect on her mental health too. 

WR....there’s the question. Is she truly WR and able to maintain? My D was learning to maintain herself but of course was happy to be a couple of kilos under than over. We have been really patient and encouraging and repeating positive mantras (food is medicine...people with restrictive EDs do not recover fully by restricting....everything in moderation etc....) and it seems to have paid off. Today she said to hubby “I feel stronger with no aches...do you think it’s because I’m eating more?” His answer was ‘there’s maintaining and there maintaining and some. If you maintain and done you are providing enough energy to repair muscles efficiently hence no aches and pains. Just maintaining means your body is always playing catch-up ‘ LIGHTBULB MOMENT ‘ for her 😃
it will get better for her and you if you truly understand that you are doing your best for her by supporting and loving her. You cannot control what is out of your control (harmful actions). Yes you can minimise harm but you can never truly eradicate it. In moments of crisis having and using the safety plan is great. The rest of the time you must develop the communication between you to enable you tohipefully identify a possible crisis. 
This will alleviate your anxiety and distress if you can learn to endure her anxiety and distress. If you appear calm, relaxed and co cider hopefully you will see what I now see in my home. 

I hope it all all makes sense and I wish you all the best. Virtual hugs. Xxx


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tina72
Just wanted to add that some kids are doing really bad with telling someone that they have suicidal thoughts at the moment and were better with showing that. A girl I know had a red shirt and whenever she felt in sucidal danger she gave her dad that red shirt as a red flag.
So maybe you can find such a sign for her as well.
Keep feeding. There is light at the end of the tunnel.
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sorenlorensson
Thank you for your very thoughtful responses. Really helpful.

I know what you're saying about being WR. In fact, she's 2-3 kg over the original target, and her team instead replaced that target with a 'band' which makes sense. Looking at her growth charts etc, she is slightly above where she 'should' be. In other words, I think she's where she needs to be, but am aware that she's growing and the so-called target is elastic.

She eats well but is quite institutionalised at present. We'll have some work to do when she comes home, but I'm confident that she's on a good footing now - I'll be supervising for a long time though, she's not ready to make too many choices.
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sorenlorensson
Talking about what's going on is a problem. She finds it very hard to express how she feels, or to give any kind of warning when she is really down. She has said that she feels overwhelmed and at times, she just can't fight that urge to SH.

Love the idea of a punchbag! The whole family would enjoy that :-)

Thanks again, ladies. Hope your D's are feeling better now
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teecee
Yes thank you...we’ve had 2x solid months of green days 😊
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debra18
Look for other distractions when she is anxious and overwhelmed. My daughter is taking piano lessons and goes straight for the keyboard now when she is anxious.
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tina72
teecee wrote:
Yes thank you...we’ve had 2x solid months of green days 😊


Oh teecee, that is wonderful, won´t you like to share that in gold star moments?
Keep feeding. There is light at the end of the tunnel.
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tina72
Talking about what's going on is a problem. She finds it very hard to express how she feels, or to give any kind of warning when she is really down. She has said that she feels overwhelmed and at times, she just can't fight that urge to SH.

Love the idea of a punchbag! The whole family would enjoy that :-)

Thanks again, ladies. Hope your D's are feeling better now


Many patients do very bad with talking about what is going on. So maybe you can give her something that she can give back to you in case of emergency.
Distraction was key here, too. We kept her occupied like a toddler so she had no time to get bad ideas 🙂.
Keep feeding. There is light at the end of the tunnel.
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tina72
Thank you for your very thoughtful responses. Really helpful.

I know what you're saying about being WR. In fact, she's 2-3 kg over the original target, and her team instead replaced that target with a 'band' which makes sense. Looking at her growth charts etc, she is slightly above where she 'should' be. In other words, I think she's where she needs to be, but am aware that she's growing and the so-called target is elastic.

She eats well but is quite institutionalised at present. We'll have some work to do when she comes home, but I'm confident that she's on a good footing now - I'll be supervising for a long time though, she's not ready to make too many choices.


If she eats well another idea besides good WR (sometimes it is only 1-2 kg more needed) is to check her cortisol level. Cortisol is a stress hormon and my d had very bad results with that (more than 20) due to a deficiency in B12 (many AN patients have that). We added B12 and cortisol was around 10 then and she was much more relaxed and this might help with self harm too. Just an idea.
Keep feeding. There is light at the end of the tunnel.
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sorenlorensson
teecee, glad to hear your D is doing better, that must be a huge relief.

The calendar idea is great, I'll try to get something similar going. Sometimes we all need to see the bigger picture, don't we?

I'll also take your advice on how to speak to her, and hope this will help our communication. Your 75% is impressive! I would be happy with a figure far south of that
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Foodsupport_AUS
This is a common problem in those with eating disorders. We found with my D who spent a prolonged period of time (3 years) with active suicidal thoughts and self harm that there were a number of things that helped her move forward - though clearly there was a lot of trial and error. We used an anti depressant - after several trials settled on venlafaxine and quetiapine. A lot of work was done to keep her safe and stopping the isolation. Although suicidal with a plan - she only spent a short time in an inpatient unit for this. We initially had 24 hour home care when not hospitalised for AN, and then slowly worked on getting her back to school. I arranged "play dates" for my 14 and 15 year old. Invited close friends over, and took her on a lot of quiet outings, movies. A lot of time was spent on "entertaining" her as her concentration was too poor to be able to do it herself, and she needed distraction from her thoughts. We did a lot of jigsaw puzzles. 
She also had a stress box - stress balls, thought cards, things to draw with, was encouraged to ping an elastic band on her wrist when anxious or stress, ice was also used, and she was encouraged to write down her darkest of thoughts - shared mostly with her psychiatrist. Slowly but surely she learned to tolerate the distress and her anxiety and depression has now disappeared - this despite the fact she is not fully weight restored, however she does eat meals regularly and never skips, nor is she restricting. 
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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teecee
Thank you...the overwhelming feeling my D had seems to be controlled a lot better. She’s found strategies to reduce the panic she felt in response. She has time out and goes very quiet. Understanding that she needs the quiet time to deal with it and not asking her what is wrong constantly when I get no response has been a learning curve for me. When your child goes within themselves the caring response is to ask if they’re ok and try to coax out of them how they are feeling and what’s wrong. We’ve had to educate ourself that that approach makes it worse and resist overwhelming her further with questions. 

Tina .... I didn’t want to jinx it by putting it on Gold Star Moments thread 😀

yes sorenlorensson we are relived that the wheels are turning, if at a very slow pace however I am patient and accept it’s a marathon not a sprint. You will get there too. Try to find a rhythm that doesn’t exhaust you to the point that you feel like you can’t continue. 

Virtual hugs. Xxx
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