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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Fearfulparent
Hi all,
My 14 years old daughter had been diagnosed with anorexia in September 2016 . We managed to restored her weight at home , and she had been discharged from the service last year in January, unfortunately she relapsed straight away .Since then we are battling it at home with FBT again, however we are  unable to restore her weight. I had to beg for help to be referred to a specialist service in London as her behaviour was so unpredictable, she lost so much weight . So now we are attending Mousdley centre in London , which is great , but I’m worrying that her illness is so strong that she want be able to recover and as it’s too late. Yesterday   she was so distress , she started  throwing plates , and refused to eat the lunch as she thought that the sandwich was bigger that usual . Attacked me with the knife . She is slowly putting on weight , but her distress is so difficult to manage , and i still need to feed her regardless . I’m so upset loosing hope and strengths , I have no energy . I need to look after my other daughter as she struggles as well can’t cope with her sister distress . Will she ever recover ? 
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sandie
You sound utterly exhausted. What a hard journey you have been on. You have obviously been an amazing advocate for your D and I am so glad she is attending the Maudsley and putting on weight. That sounds like a very frightening episode yesterday and I think it is important that you let the team know as everyone needs to be kept safe. 

Sending you a huge hug. 
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Ellesmum
Yes she will recover I’m sure. I really think you must let her team know everything especially about the knife. I’m sure you’ve put away anything that could be used to harm now but even things like paperclips and bleach would be best locked away.
You did a great job feeding her up and continue to do so, at 14 she has a lot of growing to do so although she was discharged at a decent weight you may not have been informed to feed her high calories for a long time to come and she may need quite a lot more weight than you had been advised before she can truly recover. 

My guess is is she was discharged at a healthy weight but not a healthy mind? It’s unfortunate so much store is set on a number on a scale in this illness.

keep going and try to get breaks where you can,  it’s so incredibly exhausting x
Ellesmum
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Fearfulparent
Thank you so much ❤
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tina72
Hi Rose123,

sounds like your d might have never been WR according to a healthy weight for her body and brain recovery did not start and she was discharged just too early and nobody insisted on increasing weight further on and follow the meal rules for the next years which is necessary for a kid at age 14. Sounds like the professionals heft left you alone too early, not the first case when that happens.

So great that you can have a new start at Maudsley now and when she is discharged this time insist on having a contact and a plan what to do in the next years until she is grown out. Kids at that age do not have a fixed target weight and should be monitored for the next years.

WHEN she is on a good weight and brain recovery can start I am sure she can recover 100%. But until that happens they are kept in a bad state and the disease will stay there.

As you know from first refeeding, the distress ist something that comes along with refeeding and you cannot do much against it but try to distract her. It is part of the recovery tour to learn to stand that distress and get through it.

Please have some hope. Recovery from AN is possible. You "just" need to get them to a good weight, follow the rules, work on fear food and have a good relapse prevention net.
Keep feeding. There is light at the end of the tunnel.
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Enn

Rose123,

Firstly are you OK after the attack? I hope you are safe and unharmed. 
I am sorry you needed to find yourself here. And I do hope you find the support that you need. 
It does seem as if you are hitting ED really hard now and ED is not happy. But that is a positive although it is so yucky to deal with the upset. 
I am pleased you are pushing forward. You are right to feed her to gain. We can help you to add in calories to get the weight up more quickly if you wish. 
I think this time around you are more prepared than the first time. It is not a failure. All of our kids even when doing well, can back slide no matter how far into the journey you are. I am sorry, this is happening. 
She is still young and you have time. Looking back to where you started, I bet you know so much already. The past is the past and we cannot go back but there was a lot of learning and no one's fault. Sometimes despite great care and even years of care this could happen. Ed is sneaky too. 

I understand her illness is strong and you can still help her to recover. You know I think with more weight and more time and proper followup with the professionals she has a good change to do really well. I am optimistic because you really understand ED. You have learned what needs to be done. It is YOUR strength and knowledge about ED that will get her through. Maybe control was given back too quickly to her last time and so you are in a better position now to ensure all the structure for success  is ready and steady.  So how can we help you to get the weight up? 

Also does she need meds to help the rages? My d needed and still takes sertraline. Time and and weight gain and maybe some meds may help. But first and foremost is the food!

I am sending a big hug! Please ask all the questions you have we all wish to help. 

When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Hendrixt
So sorry you’re going through this Rose. You were giving me advice earlier on and little did I know what you were going through. Thank god you’re under the Maudsley which is the centre of excellence for ED. I wish I could give you advice and return the favour at your time of need but I am fairly new to this and those much wiser and experienced will come to your rescue so I’m sending you some love and virtual hugs ❣️❣️❣️
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Enn
I see from another thread she is refusing to take olanzapine. It can be helpful for some to calm them down acutely and help them sleep too. It did not work for my d although I wish it had. Some gain weight on it too so that is a good side effect.

It usually works with the first dose to calm them and calm the voice The antipsychotic effects take about a month to kick in. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Enn
https://www.jwatch.org/na48346/2019/02/01/olanzapine-anorexia-nervosa

edited to add: if she is very low weight meds may not work well so with weight gain she may be in a better state to take it. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Fearfulparent
Thank you All for your lovely Messages. I am so glad that Iam not alone. Eva Musby book helped me enourmously at the beginning of this yourney . Unfortunately ed got more clever and stronger , and even though I knew what to do I was unable to restore her weight , but so far I managed to avoid hospitalisation . I am not working since June , and my older daughters health was compromised.
I must admit that I a I'm not a big fun of  medical model when it comes to mental health , but i have read so many research pepers and olanzapne actucally helps enormosusly when it come to ed. There are sides effects of course , but   they are  less harmfull than starvation . Unfortunately my d  wont take it , she is afaraid that she will have a great difficulties coming off it. So her distress is quite high. 
Currently I am trying to make her lunch sandwich bigger and still fighting with the dinner portions , adding lots of ghee butter to everything , and almonds . Whole family is getting bigger , but we don't care about that at the moment we just want to have a peace at home no more wars. 
I have to put more food to all of us so she can see that her portion  is smaller compare to ours which is making me angry sometimes as we are eating way too much at the moment. 
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tina72
Rose123 wrote:

I have to put more food to all of us so she can see that her portion  is smaller compare to ours which is making me angry sometimes as we are eating way too much at the moment. 


I did that also at the start of refeeding with the consequence that we also gained and I would not do that again today.
Make her portion LOOK smaller, you can make it more "hilly" and you can use deep plates or a bigger plate for that so the eye think it is smaller. Cook different meals for all of you (use a freezer so you can keep rests and do not need to cook a great variety every day) so she cannot compare the calories and add more fats just to her plate, you can add butter and cream only to her sauce and not to the others for example, you can fry her vegetables and cook the others normal and so on.
Different food for different people with different needs.
Keep feeding. There is light at the end of the tunnel.
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Fearfulparent
Thank you. I will try to do that definitely as my older daughter is angry at me that everything is so oily and full of fat. Just worrying that Ed will start questioning why she is having something different that's the rest of family . She doesn't trust me at the moment with food as she knows that iam  adding extra things to her food , so iam trying to win her trust , once she start to trust me again it will become easier I guess.
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Enn
You don’t need to make different foods. For example spaghetti bolognese.
you make it normally and then when you plate Ed d’s meal you add a few tablespoons
of oil just to hers. If you give cereal add in a few tablespoons of cream to her serving. 
Grilled cheese sandwiches butter both sides
of her bread. 
I added cream to her milk or tea. It looks the same but it is not. 
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Feels_like_being_derailed
Hi Rose123,

I know how it feels when all energy and hope is gone. But sometimes very surprising things can happen. My D's eating disorder started 5 years ago. During the first time she still kept her weight but had a very restrictive eating behaviour and I did't have a clue how much she suffered from all her thoughts which circulated through her mind. Then everything collapsed. We went through all, aggression, hospitalisation, medication, severe suicide attempts, burnout, frustration, mistrust, hopelessness etc. I still don't know how we went though all this, I was not at all prepared for it and the FBT team was also overwhelmed. I thought that this will never end, and I felt so lonely and exhausted (I had to do it all by my one, no relatives in the country where I live, no father being available, only an older sister who also suffered a lot). When both my D and me had reached some sort of bottom stage we finally got extra help from a special team which helps out in families when there is the risk of suicide. It took about four months until my D could open up but at the day when she turned 18 something unbelievable happened - the team and my D decided that she will now try to fix eating by herself. So from one day to another we turned from strict supervision of 6 meals per day with all the frustration/exhaustion etc. to an independent D who could manage to fix and eat the food by herself and who could sit and eat in piece with her sister and me. It was magic. We are not fully there yet, the food is still restrictive, there are still sometimes self-harming actions ongoing but she is so much happier now and I am so relieved by having received my freedom back, I just cannot describe it. Had you asked me a few months ago I would never ever had thought that such a magic day will come. Let's hope Rose123 that you can also experience such a magic day. I really keep my fingers crossed!
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Tee
How is it possible that some professionals cannot understand that until state is restored the weight needs to continue, it is so frustrating. Although my D weight is restored her state is not, I have been told by the FBT team leader to step back and let my D do everything.  Sometimes we as moms have to go with our gut feeling and do what we know is best for our D as it seems some professionals would like to move them on before they ready.  It seems like madness to place all responsibility on our D when their brains are not ready to cope.  Thank-you to all who post and give us all hope. 
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Fearfulparent
Hi Tee,

Absolutely, on a day my daughter was discharged , she has been told to stop the snacks and carry on with her life as normal . She has been given all the power , and on that day I lost her again . She was slowly restricting and I had to battle it for three months on my own until her referral was accepted which was in June last year , since then unable to recover , terrible relapse. 
However , we are getting help at Maudsley centre in London , and she is slowly putting on weight , but I’m worrying that when they discharge she will start loosing her weight again .
Thank you for your support much appreciate💜💜💜
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roadmum
Dear Fearfulparent,
I sympathise so much with your exhaustion at having to face FBT with your daughter for a second time. My daughter was diagnosed with anorexia in July 2017 at the age of 14.5. I did FBT, largely alone because my husband wasn't able to be much present physically or emotionally. I got her back to full BMI and she was stable for 7 months, then discharged by the eating disorder service in early December 2018. I asked that she be weighed regularly at the GP for safety. She said she didn't want it and had to be trusted. The eating disorder professionals backed her up. I went away feeling very unsafe and doubtful and with no safety net.
My daughter went almost immediately into serious relapse because she knew she was free and no one was watching her anymore (apart from me, but helplessly - I had no way of getting through to her or having any control at all). Two months into relapse she had lost 8kg. I knew she wasn't strong enough to cope with eating without any monitoring. We had hellish weeks trying to get her to go on a pair of scales, culminating in outright physical confrontation. Finally, she acknowledged she had a problem and we went back into the eating disorder service and FBT.
So I spent much of this year doing FBT all over again. This was utter hell. No one can understand it who hasn't been through it. Frankly, it totally affected my own mental health and I am still worried it has triggered disordered eating, if not an eating disorder, in my elder daughter, who is now away at university. I got our younger daughter back to full weight restoration and she has remained stable for about 6 months now. She says she is now eating 'for herself' as opposed to for me, which is what she was doing first time round. We are coming up for discharge again. 
This time I am determined to have fortnightly weighings at the GP. I think our daughter needs this to know someone is monitoring her, someone cares. I think the first time round she wasn't strong enough and may have felt abandoned. GP weighings provide a safety net for her to manage independent eating. It means she can have her freedom from me, for which she is desperate, but I can have independent clinical information that she is doing OK.
I have to say that I will never again trust professionals over my own gut instinct as the primary carer. It is the parents - and mainly the mothers - who do this job. They deserve the greatest respect and they deserve so much support and care, but get almost none. It is a big gap. FBT presupposes someone who is willing to be on the job 24/7, with no respite, no pay, no weekends, no holidays, have plates thrown at them, or worse, be abused 6 times a day, sometimes scratched, punched etc, suffer terrible fear for and of their own child, and be not at all understood generally by the wider family or the wider world. It is the loneliest most miserable task and the only good thing to be said about it is that if you get your child through you have a well child with a life ahead of her at the end of it. Our daughter is now well, happy at school, with good friends, active, with hobbies, a small job, and planning to go to university. It is a great thing to see her well, but I must say I am still traumatised by what I have been through in the past 2 years. Nowadays, if she starts up with verbal abuse, I burst into tears. I think it is all the accumulated stress and trauma across this time. She can't stand this, of course.
I wish you strength. I am really sorry you are going through this. I hope you get the best support possible and come through it with your daughter. I agree with what one of the mums said about talking to your team about your daughter's rages. Sometimes I think the Mums are left coping with this by themselves because it suits everyone not to know it's going on. But there is a limit to what you should cope with by yourself. It's not safe for anyone for you to cope with that degree of acted out rage by yourself. Perhaps our daughters need to hear that from the professionals sometimes. I am wishing you all the very very best.
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tina72
Hi roadmum, just in case it was not by incident you posted a name in your post and names can be found by google so if that is the real name ofyour d please rethink that and use the edit pencil in case you want to change it.
Keep feeding. There is light at the end of the tunnel.
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tina72
Tee wrote:
How is it possible that some professionals cannot understand that until state is restored the weight needs to continue, it is so frustrating. Although my D weight is restored her state is not, I have been told by the FBT team leader to step back and let my D do everything.  Sometimes we as moms have to go with our gut feeling and do what we know is best for our D as it seems some professionals would like to move them on before they ready.  It seems like madness to place all responsibility on our D when their brains are not ready to cope.  Thank-you to all who post and give us all hope. 


In my 3 year experience with my own d and a lot of other families here I must say this is the most common mistake that leads to relapses here. It is totally frustrating and at least a trained FBT therapist should know that recovery from AN takes years and a very long supervision is the best relapse prevention you can give her.
Keep feeding. There is light at the end of the tunnel.
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