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melstevUK

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Reply with quote  #76 
keepsmiling,

You are being undermined big time by this therapist - if she really did tell d that she should be working on independent eating.  This person should not be allowed anywhere near anyone with an eating disorder and I would ensure the psychiatrist knows what you think.

I have followed the last few posts - all the time you are trying to bring about these changes I would be telling d that you will do everything to get her IP if she does not go to a referral to the Maudsley, assuming she gets one.  Tell her you will fight tooth and nail to get her sectioned if she cannot start eating.  Don't let her make you feel shaky with anything she says - she needs to see you mean business.  Ignore any threats she makes - she just needs to know that you understand what you are dealing with.  You can express sympathy and acknowledge that you know how difficult this is for her - but ultimately noone is doing anything for her while they do nothing about her weight.  The t would be useful if she dealt with the anxiety around it - she should be butting right out on how eating is managed, and just insisting on weight gain.  I feel enraged on your behalf that you are being so badly let down. 

It is incredibly difficult that you have to be at work - all the more reason that d should be IP or have more intensive supervision.  If she tells you that you are cheating her by putting things in food that she does not agree to, tell her that her illness is cheating her of a life and ask what is more important.  Just keep talking about this being an illness which will not let her eat but that food is her medicine and that you are not prepared to get into arguments about it.  Focus, focus, focus.  ED patients, as you know, are huge manipulators and you have to show her that you know exactly what is happening.  You are not going to bring changes in straight away but standing firm and not showing any doubt in your knowledge is a good start.  If you cannot get 'control' - you need to focus on achieving 'compliance' - whether this is immediately in terms of eating, or in terms of the future direction.  You just need to keep giving her the message that you are not standing by and doing nothing.  Explain that meds would help - and ask why she wants to choose illness and suffering over making her life easier.

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Torie

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Reply with quote  #77 
Quote:
Originally Posted by melstevUK
If she tells you that you are cheating her by putting things in food that she does not agree to, tell her that her illness is cheating her of a life and ask what is more important.  


Love that, melstev!!!  

When my d would get mad at me for doing what I needed to do under the circumstances (e.g., not allow her to be away from home for meals), I learned to reply with, "So sorry.  It sucks to have an eating disorder, does't it?" to keep the blame where blame is deserved - that is, on ED.  She hated it when I replied that way, so I think it helped her stop saying the things that triggered me to reply that way.  This is another version of that.

Quote:
Originally Posted by melstevUK
You can express sympathy and acknowledge that you know how difficult this is for her  


I would suggest a slight variation here, because my d (rightly) pointed out that I really didn't know how difficult it was for her.  So I learned to say, "I know this is really difficult ..." xx

-Torie

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toothfairy

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Reply with quote  #78 
Hi again,
So you have the psych appt coming up aswell.
Honestly I Would bring detailed notes with me , and a detailed complaint letter.
Here are the nice guidelines, there is lots of interesting tnings here if you print it and highlight where you have been failed, also there are the parts that sugguest when inpatient is advised that you can point out.
In the meantime can you conract your gp to ask about sectioning her, it also has a few lines about that in the guidelines.

https://www.nice.org.uk/guidance/cg9/chapter/1-Guidance#anorexia-nervosa

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #79 
Does she have a dietitian keepsmiling ???
Or is this the T /dietitian....what exactly are this Persons qualifications?
When your D went to camhs in the first instance was there a treatment plan with 3 monthly reviews?

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
keepsmiling

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Reply with quote  #80 
melsteUK you have hit the nail on the head, it is currently about getting compliance and not letting the AN try to manipulate or talk it's way out of what is needed.  It is certainly not easy but I am trying to be prepared and strong - fake it til you make it time I think!

TF thanks for all your wonderful posts, you also give me lots of strength at a time when I need it the most.  In answer to your questions - I have already taken away the internet, phone, etc today and told D she will get them back when she eats what I am giving her.  She has had breakfast and lunch so I gave her back her laptop but made it clear that it will go again if she refuses any other meals today.  D, however, is trying to make out that she isn't bothered with the confiscation, that it doesn't matter to her but I know she is starting to realise I mean business.  Sadly my lovely, smiling, happy D has already disappeared and she is just sitting staring into space, refusing to engage with anything but I also know that this is progress as she is feeling challenged and that is what we need.  
She has seen a dietician a couple of times a long time ago but both she and I found her pretty useless - when D had spent over two months not gaining at all last year we saw her but she suggested that a handful of seeds on her yogurt would get things moving again.  They didn't.  
Her Consultant was seeing her every few months but the last two appointments D has run out crying when it was suggested very strongly that she volunteer for IP.  We stayed in the room, trusting that D wouldn't go too far, and carried on the conversation but one of the scariest parts for us was when the consultant told us that if D continued to refuse to engage with things then she would have to sign her off and suggested that we might have to get used to letting D live like this.  At the time I was so shocked I did nothing but am now in fighting mode and won't accept that again - though it would make it even easier to turn around and say that since D has made no progress under her care then we need that referral to the Maudsley.  The last meeting was left with the consultant saying she didn't see any point in seeing D or us again unless things took a turn for the worse but that we could contact her if that became the case and she would see us.
The care system in our area is often said to be excellent but it really hasn't been our experience, they just don't seem to know what to do with someone as deeply entrenched as D, preferring more compliant children.
toothfairy

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Reply with quote  #81 
OMG
I am horrified...
So you are entitled to a second opinion..
And consultant needs to read the NICE guidelines...
So she goes voluntary or sectioned involuntary to IP..thats the next step..
Consultant needs to start looking for a bed & putting sectioning in place.
I am disgusted...
Tell them you want them to consult with GOSH Dasha Nichols or Janet Treasure for second opinion..
You know , if it were me & I was getting nowhere, at next appt I would ask for a copy of all her files/records & notes & tell them that I have detailed notes of events so far & that I will be taking independent legal advice apart from a formal complaint to CAMHS...

Another thing...if there is a dietitian & therapist...why is the T calling the shots about food????????
Surely the T should not be dealing with food...and also, is there no family T...
You are doing FBT right??

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #82 
PS ....she had breakfast & lunch & you gave ed a run for his money....big wide smiles....👍
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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
keepsmiling

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Reply with quote  #83 
TF - It has all just become one big mess as far as T goes.  D was seeing the CAMHS T until last Sept when she refused to go any more as T wanted her to go to IP.  We tried hard to get D to go back but D insisted she would see her current T instead - this is a recovered ED sufferer who has since trained as a T and D had met her at school when she still attended.  CAMHS use T as an additional T in schools and for their group therapy sessions sometimes and agreed that D seeing her would be better than us forcing her to see her old T, so they pay for her to go and this new T liases with CAMHS when necessary.  We were seeing her consultant every few months but as you know from my last post, that wasn't going too well either.  Since D's only contact has been with this T she has had little option but to advise on food but at the meeting last week it was made clear that this now needs to stop and we will take control ourselves.  

Up until now we have always just done exactly what her old T told us to, or the dietician, even though we were frustrated and knew things weren't working.  I know we should have stopped things much sooner but both H and myself are naturally quite compliant and lacked the confidence to questions things.  Thanks to this wonderful forum that has changed and I am out to fight for what I know D needs - with or without their support.  However, we have no family support - the closest we get is to be reminded that we need to take care of ourselves too :/  We were given a meal plan which we followed but again that didn't help as it was that that told us to weigh portions - hence some of the difficulties we now face, alongside the fact that as long as her diet was balanced we should not tackle fear foods.  

Our local CAMHS say that they practice a 'form' of FBT but it isn't true FBT from what I have read on here so we are currently going it alone with the help of this forum.  That is partly why I really think a referral would help both us and D and is what I will push for if we cannot get D IP.  

As you say, D's 'care' has been bordering on negligent and I may well complain eventually but right now I am going to put all my energy into fighting ED hard and making sure D gets the best possible professional care - whether that be IP or Maudsley or a different care provider we'll see.  Once I have D on the road to recovery I will tackle the poor care given over the last 17 months but D needs me to give her my full attention right now so they can wait - but I will deal with them later.
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Reply with quote  #84 
Oh my,
That is just so complicated the way it evolved to the other T.
By complaining, I meant if you complain now you may well get more & better service and attention....& not get fobbed off....

How did dinner go?



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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
NELLY_UK

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Reply with quote  #85 
Definitely bedore she is 18, write to GP, Camhs and social services and formally request a copy of all her care plans and notes, once she is 18 ypu will need her permisision. I sis this and got full GP blood results, all notes from the beginning of treatment. I went via PaLs. From these i had proof that the team were focussed on 'fixing the family stress' rather than treating the illness, I had proof they failed to follow nice guidelines, proof they ignored poor blood results and poor ecg results.
It formed the basis of an extensive complaint and investigation. I had proof of all sorts of negligence but it didn't help get my d into treatment. The complaint resulted in an apology followed by more of the same poor treatment.
Collect it all together now it will takes months to come back but you wont get it once she is 18.
Do you live in Sussex Hampshire or Kent by any chance? Did you see the channel 4 piece on failings of ed treatments?
It was great - the airing it got.
Hugs for you being a fab mum fighting for your d.(())

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
kayjay

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Reply with quote  #86 
Nelly - I'm in Kent - what did ch4 say?

Xxx

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D, 16, diagnosed with AN Aug 2016. One day at a time...
NELLY_UK

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Reply with quote  #87 
Its available online but a looong piece on eating disorder treatment and failure to treat kids in particular. I dont know how to add a link....https://www.channel4.com/news/mental-health-services-under-strain not sure that worked. Sussex Hampshire and Kent Camhs are all one privatised service with the decisions made on funding by one board. The thinking is constant across the areas in terms of leadership. You may get lucky and get an individual who is enlightened and well trained and aware. But this Camhs has got to be the worst in the country. Years ago someone took legal action against Kent and won. She was on here, has written books.
I did meet some parents from Folkestone with a d in the same unit as my d so clearly they got treatment. We were in Huntercombe Maidenhead which is where the channel 4 interviews on the link above were filmed.

I guess I am not helping other than you know what you are up against. Ookoo on here had quite a differrnt experience and more recently with her d who is AN. Have a look at her threads, but she went to A&E and got better help than we did. She is in mid Sussex so still the same Camhs but a very different experience. After my complaint they did try to improve. The out of date clinicians need re training though and they never accepted that. I organised Dasha Nicholls to support them, they said they didn't need it.
Keep feeding her and you will get there with or without them. X

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
kayjay

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Reply with quote  #88 
Thanks Nelly x

We had appalling care from Kent CAMHS, culminating in me sitting at one appointment with my yellow bradycardic daughter with BMI below 13 (no medical monitoring being done) and insisting on them referring her to the Maudsley as they wanted to just keep an eye on her for a bit longer.

She's currently in the huntercombe but I'm pushing for referral straight back to the Maudsley team for her transition care when she's discharged from hospital. My h thinks I'm overreacting and that she'll come out 'bettter' and kent CAMHS will be fine. I know she'll come out with a lot of work still to do and I want her to be under the strong knowledgable multidisciplinary team who already know her and who have said they'd be happy to work with her. I'll send him the ch4 stuff to back up my thought so thank you x

Sorry KeepSmiling for sidetracking your thread momentarily x

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D, 16, diagnosed with AN Aug 2016. One day at a time...
keepsmiling

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Reply with quote  #89 
Thanks for the suggestion of getting her notes now, I hadn't thought of the impact of her turning 18 regarding that, just so focused on her ED but I will definitely request them! 

It is so awful the way the Sussex / Kent CAMHS are - I did see the report and at the time was glad I was where we are (South West) as we came out as very good but as we all know, every experience seems to differ in the care given.   I cannot believe your D was at a BMI of 13 and they still wanted to monitor!!!  Currently our D is at a BMI of about 16 which is again a reason I doubt they can section her and we remain in limbo, they can't force her into treatment and we can't make her at her age.  However, I will be making a strong case for IP due to lack of progress etc and if that doesn't work then will ask for the referral.

Dinner last night actually went in!!  D hates us of course and barely speaks but it was a small victory and we'll take that [smile]
toothfairy

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Reply with quote  #90 
Keepsmiling,
Thats great about the meals. Not speaking & hostility are par for the course at this stage.

Your real D is underneath all that behaviour, screaming help me.... ignore the bad behaviour & keep going with the food.
Well done...keep pushing tbrough with your leverage.
Try & Be calm & consistent,compassionate but in control.
Ed is feeling threatened,but you need to show ed & d that you have control, you are running the show now,not ed.
I am hoping that D does not know of your struggles to get her to IP, better treatment, /sectioned/maudsley...
Ed would thrive on knowing all that, its better to say as little as possible,& just do.

The same with the consultant review, I would not let her hear me begging for a bed, more treatment, sectioning etc....

I would have no problem discussing in front of her with consultant how entrenched, rigid,black & white, non functioning.unable to co-operate , failing to make progress,

Just my opinion, hope it helps...
Hope she ate breakfast ok.

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #91 
Kayjay, I am shocked!
Glad your D is in IP , & good for you for pushing for step down to maudsley, I hope you get it,
You are not overreacting, & yes you are right, she is not going to be better upon discharge.
She will need huge support.
We are 1 year 3 months post a 4 month IP stay & doing great, but S has needed full support at home & still needs a level of support albeit a lower level now.
It is such a long road.
I hope you get a strong MDT to support you upon discharge.
The main thing is getting her weight past bmi 19 , this was a game changer for us ...
Best wishes


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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Kali

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Reply with quote  #92 
Hi Keepsmiling,

I'm so happy to hear that dinner went in last night! 

I hope it is the first of many meals which will go in.
Did you and h. do anything differently regarding that meal, then you had done before, and what did she eat?

Quote:
However, I will be making a strong case for IP due to lack of progress etc and if that doesn't work then will ask for the referral.


This is an excellent idea... It sounds as though it is time to speak up, be firm about what your daughter needs, and be the squeaky wheel in order to create a situation where she can make real progress against the illness. 

Best wishes,

Kali


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NELLY_UK

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Reply with quote  #93 
Keepsmiling, yes get the notes from all sources so you know if and how the GP and camhs are interacting. Ultimately the GP will pick up care at age 18 if she doesnt get help from AMHs. You will get a better picture and proof of the progress or lack of it. More evidence to get referral to IP and the second opinion on a treatment plan from Maudsley.
Care plans, review notes, GP records, A&E reports will be in GP notes with recommendations for Camhs involvement.
It was when we got all the notes and put them together we saw how many ineffective meetings were going on, no progress at all, self harm escalation and their bias on blaming the family. They were floored when I asked them why they hadnt taken her into safer care if they thought we were to blame. My priority being my d's health, theirs being to do as little as possible.
Keep feeding her, if she does go IP thats what will happen but without the benefits of living at home in her own room with her own things. If she kicks off in hospital she will be pinned down and given an IM then sleep for ages. If she kicks off alot it will be off to a general secure unit, hideous.
Keep smiling determinedly!!

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NELLY D 18 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. Bulimia treatmentis in the dark ages in West Sussex.
melstevUK

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Reply with quote  #94 
keepsmiling,

Well done you for getting dinner in to d.  Victory against ed, yay.

If you are going to complain with an end to getting effective treatment (rather than an apology) I would keep things as short and to the point as possible.  Even if you have the energy to check out notes, you want to hit hard with a few major points which indicate gross negligence and/or failure to understand the illness.  This is one of them:

"one of the scariest parts for us was when the consultant told us that if D continued to refuse to engage with things then she would have to sign her off and suggested that we might have to get used to letting D live like this"

This is totally unacceptable.  At this point your consultant should have overridden d's fear and expressed her intention to section d - with her and your knowledge - and started the procedures.  If nothing else - this in itself may have pushed d through her fear and started her being more compliant around eating.  As d is still under 18, your agreement would have been needed but the consultant should have explained this and that, because your d was making no progress, she had no other option.  

The fact that she was allowing d to call the shots - with an illness that routinely makes patients resistant to treatment - means that the consultant was failing in her duty of care towards your d.  I would argue this case very strongly - because even indicating that it was acceptable for d to be allowed to live her life like this, as if it was d's choice, falls way short of the mark in ed patient management.  

Although d is not down at a bmi of 13 - I think you still have a basis for requesting the use of the MHA, because of the lack of progress.  However, if you tell d that you will do all that you can to push for this - but can get her to accept that it is better to go voluntarily - you may get somewhere.  At this stage I would press very hard for an IP placement - even for around six or eight weeks, so that d can get used to the routine of eating and gaining weight.   Why not 'sell' it to her as going in for a period over the coming summer months so that she can get to a place where she could return to her studies?  What is she planning to do with her life?  She can't sit around at home the rest of her life and needs to be well enough to live.  Making plans for her future may well motivate her - often when patients are stuck in the present with no vision of a future, they have no incentive to recover.  Thinking about a better life is one way of moving things forward. 

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toothfairy

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Reply with quote  #95 
Wow
Great stuff for the consultant there melstev!

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
mjkz

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Reply with quote  #96 
Having to travel hundreds of miles for specialty services unfortunately is a fact in many countries.  I live in the NE US and we are woefully short of good treatment for eating disorders.  We often have no choice but to send kids to Denver or California.  My daughter ended up in another country for six months.  I think that is far more common than people realize.  We also have waiting lists and spend time simply maintaining on general units. Some of us are lucky if our insurance will cover any good programs at all.  It is rare to find a place that is good that can get enough time from an insurance company to get our kids weight restored.  It is not like that US is any better [frown]
keepsmiling

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Reply with quote  #97 
melstev-UK I completely agree that what the consultant said was very wrong and think your idea of using it to help push for IP is a great idea so will have that with me for the meeting on Tuesday - though, being ever the eternal optimist - I still hope that the consultant has started to realise we mean business and are not going to just stand by and let D fail, so has already looked at IP as an option for us.

We have already told D that we really want to help her at home and that we are fighting for her, which is why her meals etc have changed, but have also explained that if she really cannot do this at home then we will be pushing for a higher level of care (IP or ITP).  We have suggested that she consider going in voluntarily as she would at least maintain a semblance of control over her choices but she is currently adamant that she won't do that.

We had a terrible day yesterday but we also expected that.  D is trying hard to push us to go back to the way things were but we have made it clear that is not an option, that we are in charge now and that the only choice she has is to do it our way.  Total calories in?   Probably about 500 but we are sticking with our decision and this morning she has got up and eaten everything we asked her to for breakfast.  The transition to us being in control was never going to be easy and I know we will have many more battles before she accepts it but we have repeated over and over that we are in charge of her food, that we will not listen to or engage with the ED in any way and that she is expected to eat what we give her (or not as it was yesterday!!).  

For those of you in the US - hope you have a great Mothers Day [smile]
Kali

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Reply with quote  #98 
Keepsmiling,

It sounds as though you are on a path to turn things around for your daughter, whether at home or inpatient. Keep going! My d. was also on about 500 calories a day when I said to myself "No More of This" and took the steps I needed to in order to make weight restoration and intensive treatment happen, and since then things have been improving for her. Not without some ups and downs of course, I won't pretend that it isn't a bumpy ride. We are all cheering you on from the sidelines.

Quote:
we have made it clear that is not an option, that we are in charge now and that the only choice she has is to do it our way.  Total calories in?   Probably about 500 but we are sticking with our decision and this morning she has got up and eaten everything we asked her to for breakfast.  The transition to us being in control was never going to be easy and I know we will have many more battles before she accepts it but we have repeated over and over that we are in charge of her food, that we will not listen to or engage with the ED in any way and that she is expected to eat what we give her (or not as it was yesterday!!)


Stay strong and visit the high-calorie thread on this board!

Kali

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Reply with quote  #99 
Just a thought,
I think carer fatigue may be on the criteria for IP admission in the UK too.
So I think you have lots to hit them with this week to get things going.
Best of luck

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
mjkz

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Reply with quote  #100 
Quote:
For those of you in the US - hope you have a great Mothers Day [smile]


Same to you keepsmiling.  What you are doing is absolutely perfect.  I really admire your tenacity in the face of all of this because sometimes it is easier to let things ride.  You rock mom!!!
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