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carterm

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Reply with quote  #1 
Hi, 

This is the first time I've posted here and as the title says I'm so confused by the advice from CAMHS. My 16 year old d was diagnosed on 10.01.17 and we were told on Day 1 to take control and follow a 3 meal, 3 snack plan - to put it mildly all hell broke loose from then until now. No weight gain, (1.5kg loss) in 2 months. Threats from CAMHS of imminent inpatient admission 3 times in 2 months. So yesterday we went to an inpatient assessment appointment. D ran away, eventually got her to go back an hour and a half later for the last 10 minutes of the appointment where it was decided that she will now be allowed to make all her own choices. I no longer cook her a meal (which she's completely refused for 3 weeks anyway) and she can eat as, when and what she wants. This is what she did before and resulted in her losing 2 stone in 6 months. Why have we been through 2 months of hell just to be told to stop trying?? I'm so confused. The alternative is that we say we can't cope and the Doctor can make a strong case for compulsory detainment. Any advice? 
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum, so sorry that you have had to find your way here. I can understand your confusion. You don't say where you are, but I am guessing perhaps the UK given your mention of CAMHS and inpatient assessment appointment. 
It sounds like from what you are saying that D's eating disorder is too strong for the family to manage at home, hence her ongoing weight loss, it does make sense then for them to be considering inpatient admission. Is the reason that you have been told "not to try" because the intention is for admission? Is it because they feel they need to strengthen their case for compulsory admission? It would seem clear that if your D is going to be inpatient, it may be difficult for her to be admitted as anything other than involuntary. Given her age, that may well be required. Personally I would be pushing for the compulsory admission, you have tried hard for two months and had no impact, something clearly needs to change, and allowing D's ED to call the shots is unlikely to be useful. 

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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.
keepsmiling

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Reply with quote  #3 
I am so sorry your daughter is struggling so much, we were where you are now this time last year.  You don't say your daughters weight / height or BMI so it is a little difficult to say why they would advise this but it does sound as though they are going to push for sectioning but that she needs to weigh even less for her to fulfil the criteria for that.

My D was at 75% weight/height and we had inpatient 'threatened' many times but it was never actually carried out and we kept going to appointments expecting it to happen (having been told it would over the phone) only for them to back down and tell us what an amazing job we were doing at home and to keep going.  D gained very, very slowly and is currently a 'massive' 3 kilos heavier than she was at her worst [frown]  

My D is very wise and deliberately got herself to a weight where she knew she couldn't be sectioned but was still very ill (80%) and then refused to eat enough to continue weight gain, just to maintain.  We were also told to remove all support from her so that she could be sectioned but so far we just cannot bring ourselves to do it, it is just so cruel so we are currently battling on.  Inpatient has been suggested every time we meet her Psych but every time they back off again, leaving us frustrated and angry as we feel they should have acted almost a year ago when the true severity of her illness showed itself.  I can only suggest that, if your D is at a weight that she can be forced into IP, then grab that opportunity with both hands - push for it even (we did but were not listened to) - as once she gets to a certain weight she cannot be forced and you are in limbo, as we are now.  

Whether you decide to remove all care to help this happen is up to you but I completely understand how tough that must be as we haven't managed it yet.
Good luck with whatever you decide to do.
carterm

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Reply with quote  #4 
Thank you so much for your responses. My d is 160cm and 40.5kg, so I think that's probably the issue, she's not ill enough. The doctor says that he can make a strong case for admission because she's stuck (there is no way she would go voluntarily). He said his Psychiatrist colleagues would agree with him but the Mental Capacity people may not.  So maybe they are seeing if she loses more weight left to her own devices. She goes to school every day, amazing mock results this week, incredible what she can achieve on 800 calories a day. He said if we can't cope that will strengthen the case and he wants a report from school. I don't think I can bring myself to say I can't cope, it seems like sentencing her to prison. So we'll see what she does. It's such an emotional rollercoaster. Yesterday I thought she was going in to hospital as soon as they had a bed which is what I was told last Friday, today we are back to wait and see. 
Morgana

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Reply with quote  #5 
Hi, I'm sorry you have to be here! I just want to alleviate your mind regarding ip. I know I was in the same situation as you where I felt like I couldn't admit we weren't coping, as if that meant failure, and I was scared that sending her to hospital was so terrible. However, eventually we did sent her to ip and it saved her life. This illness is the prison, and ip is a safe place to treat the illness. I won't tell you it was easy but I know ip was the right place for her.
ALso, my d was not at her lowest weight when she was admitted, and she was almost sectioned a number of times including at a bmi of 18 because she was refusing to eat and refusing tube feeds. Weight is not always an indicator, especially when the illness has been going on for a while.

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15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
mjkz

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Reply with quote  #6 
Quote:
I don't think I can bring myself to say I can't cope, it seems like sentencing her to prison.


Let's reframe that thought in a realistic way.  If you say you can't cope (can you cope with watching her go downhill while you can do nothing to make her eat??), you are saving her life by getting her into treatment where she will have to comply. The longer you wait, the longer she will need to be inpatient and the more entrenched in ED behaviors she will become.  Unless you really can make her eat and gain weight, you are sentencing her to prison by not saying you can't cope.  Make no mistake she is in prison at home and the bars are getting stronger and closer together each day you wait.  I'm sorry if that sound harsh but she needs you to be the strong one right now and say enough is enough.
keepsmiling

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Reply with quote  #7 
I wish that admitting you can't cope would actually help with getting IP treatment but even when we did that - and were told she would definitely go to IP  - nothing happened.  Even 'being stuck', as our D is, doesn't seem to be enough to get her the help she needs.  I pray that you are luckier than we have been.  For us, even when we begged for D to go to IP, pointing out that we were unable to get her to eat enough to gain weight, that the rules were extremely strict (more than one or two minutes late and a meal is refused) and that the acceptable foods list was at an all time low we still did not get that promised bed.  Our D is completely entrenched in her illness and cannot cope with any changes, lateness etc and we know she needs more care but, despite it being frequently promised, it has never actually happened.  We have been let down by the system and would love her to have the chance of a bed.  Sadly, it does sound as though you are beginning to follow the same route as we did - beds promised for the next day / week and then.... nothing.  Please, please push for one if you can, don't end up like us.  

Don't get me wrong, we are still fighting for D but nothing really changes.  We try to re-feed but she just refuses any changes to her routine and will not let us take complete control of her food.  We know that if we did, she would refuse to eat and her weight would fall once more but we are scared to do that because when it was really low and an IP bed was 'imminent' the system didn't act and we had to carry on at home so, for us, we are scared to withdraw support in case the system let us down again.  Constantly going around our heads is the fact that this illness has the biggest death rate of all mental illnesses so without a guarantee of Ip help, why would we risk her life?

I'm sorry if I'm rambling, I just hope that you have more success than we have with this illness and the system that seems destined not to help when you need it the most.  Thinking of you.
Torie

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Reply with quote  #8 
I agree with morgana, toothfairy and mjkz.  A bed is a precious thing - fight for it!!!  Absolutely, tell them you can't cope.  And thank the doc who gave you the tip that that would help get the bed.

Just my opinion.  xx

-Torie

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

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Reply with quote  #9 
Carterm.

Welcome to the forum, so sorry you have to be here but really you have found yourself the best resource on the planet to help you.  I believe at some stage down the line your particular situation will be looked at in more detail and there will be other ways of dealing with it, because this is a very common problem and we let patients become more ill than is necessary because of this 'grey area'

My daughter has recovered from anorexexia nervosa after ten years but if I could change anything it would be this:

Right now your psychiatrists understand that they cannot compulsorily admit your d under the MHA but they know this is what she needs.  If you say you are not coping at home they could make a case for your d being admitted.  You need to stand firm and tell your d that this is where she needs to be.  She is at a low weight and in terms of the MHA is not unwell enough.  But if I tell you that the probability of your d being ill for a year longer for every point on the bmi scale that she loses - will that compel you to act?

When I knew that my d was first unwell her bmi was 16.  But when I took her to the GP everyone was kind, cautious, noted that this was a bit low and therefore the GP decided to refer her to a dietician.  Weeks passed, more weight fell off - my d after the meeting with the dietician said that she knew that 500 calories a day was enough for her needs.  She managed to convince another GP that she had stomach pains and simply could not eat - hence a delay with a referral to a gastroenterologist.  I still knew nothing about eating disorders but still knew she needed psychiatric help and not physical interventions.

The result is that she was hospitalised within a couple of months - but if I could turn back the time I would have that first GP tell me 'Your d is at an abnormally low weight. She needs to start eating and eating now.  Bring her back in a week and if there is no improvement we will get her an immediate referral to CAMHS'  I needed a diagnosis at that point and for things to be turned round.  It didn't happen.  

For every parent who lands on this website - I would say: if you cannot weight on your child at home straight away, get him/her IP.  Don't waste time, don't flounder.  Your psychiatrists believe their hands are tied.  They aren't.  They just need to tell you and your d that she needs to be hospitalised and you need to request and support that action.  Do not give your d any more freedom at home to flounder.  Your team are giving her the upper hand in what she chooses to eat because they know she will lose weight and this is what will lead to a successful hospitalisation agreed by the MHA team.  This is how the system works - sadly.  

So- in your place I would tell your d that she is going to hospital or she needs to eat at home with you.  It feels brutal but either she eats at home or in hospital.  It may work to give her that clear choice.  Here brain has been taken hostage by an illness that will not let her eat.  Stand firm against it and make it happen.  If you cannot get a turn around within the next week, stand firm and tell her that you are saving her life and tell the team that she will go into hospital - because you will make sure it happens. 

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Believe you can and you're halfway there.
Theodore Roosevelt.
melstevUK

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Reply with quote  #10 
careterm.

To underline 'there is not way that she would go voluntarily'.

Of course - because that is her eating disorder speaking.  All the more reason that she needs you to stand up and say that she is definitely going into hospital if she cannot start eating.  And I would be honest and up front - she is really seriously ill, and for every point on the bmi scale she will be ill for a year longer.  She needs to turn things round now so that she has a better and brighter future,

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Believe you can and you're halfway there.
Theodore Roosevelt.
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