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AUSSIEedfamily

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Reply with quote  #26 
Dear Hebrides,

Whinge away whenever you need to thats one of the things that the people on this place understand!!

Keep communicating your real D is inside their listening although ED noise is trying to drown you out.

Even when our D moved out of home we kept the communication happening. Mostly it was my wife doing the communication with me doing it when needed.

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mjkz

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Reply with quote  #27 
Definitely not whining even if it feels that way.  Sounds like you are doing all the right things and will just have to wait out the silent treatment.  Has she said why she doesn't want to talk to you?  Is it just the family or is it everyone? 

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I know it's not the end of the world if it doesn't happen,but we would of course love to be able to bring her home, however briefly.


That might be a good topic for conversation.  How safe would you feel bringing her home if she isn't talking?  Maybe talking about what she would need to do to get home leave would be more concrete and touch her more than just everyday stuff or "normal" stuff that has no meaning to her while inpatient.
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Reply with quote  #28 
Caring for our children is very hard. I can see from you words that you are feeling heartbroken at the moment and are struggling to have hope. We all hit that wall sometimes. It is why we are here to let you know that it will not last for ever that she will continue to heal however slowly it happens. 

I think you are right about insisting on letting your D know every day that you care. My D also felt undeserving and pushed every one and every thing away when she was in the depths of despair. She will hear you even if at the moment she cannot acknowledge what you are doing. The other ray of hope there is that despite her current inability to eat there is continued nutrition going in and hopefully she is gaining weight. Prolonged weight restoration does help their brains to heal. 



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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.
Torie

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Reply with quote  #29 
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Originally Posted by Hebrides
My instinct tells me to continue sending her supportive messages, reminding her of our love for her, and our belief that things will get better etc etc and that to stop doing so would send the wrong message entirely ie that she is not worth communicating with and we are abandoning her. 


I'm sure you are right.

Your real d is in there somewhere, and she hears you.  I think it was PsychoMom who used to put little bouquets in her d's room - doesn't need to be anything fancy, but maybe that would give a bright spot for you both.

I think it's especially important to, as you say, keep expressing your belief that things will get better.  

You are a wise and strong mum (mom?), and your d is lucky to have you.

Hang in there. Things really will get better. xx

-Torie

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Hebrides

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Reply with quote  #30 
I hadn't realised it's so long since I was here - time flies when you're in the middle of a roller coaster!

In about an hour I will be setting off to the unit for D's MHA tribunal - if she wins, technically she has the right to discharge herself. She didn't get leave at Christmas (although we spent a happy day with her on the ward). Since then she continues to struggle with low mood, suicidal thoughts etc and to not communicate with us much (other than practical stuff). It seems she is talking to staff - though of course we don't know how honestly. On the positive front, she has worked so hard to get her obs level reduced, and to get ground leave (with staff and with me), and local leave with staff, and the unit have said they really want to keep her there and work with her. Since Christmas she has pretty much been taking all her diet orally (before it was all supplements).

On the negative front, I/we have had some truly awful visits and family sessions - silent treatment, curling up in a ball, shrinking away from any physical contact, sharp tongue, refusing to play games/do anything together etc. She continues to refuse any meds. And another absconsion on the first day back in education after the Christmas break - we were on our way to a family session, half an hour away, and I spent that time in bits (good thing H was driving), convinced she was heading for a bridge and that we would never see her again. Thankfully the police brought her back again, but she would not speak with us - no great surprise. There seems to be so much conflicting stuff going on for her - wanting her section overturned (so she can discharge herself) and yet absconding, for example. And while there is no doubting there have been positive steps, H and I cannot bring ourselves to rejoice at them and take them at face value. What if it is all a smoke screen? It wouldn't be the first time...

The psychiatrist reassures me that she thinks it extremely unlikely that the appeal will be upheld, given D's history, both recent and since she became unwell. But there's no denying my anxiety levels are pretty high, I have an almost constant headache, and muscle tension throughout my body. D has consistently refused to talk to us about the appeal - but she knows we know about it, and knows I am going. Not clear yet whether she will say she doesn't want me in the hearing... Assuming it does not go her way, I am almost even more anxious about her reaction afterwards - I guess if it's tempestuous, my best bet may be to beat a retreat to my hotel room and let the staff deal with it...

Hanging on - just about.

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Foodsupport_AUS

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Reply with quote  #31 
Thank you for your update. What a roller coaster! Keeping fingers and toes crossed that the tribunal sees sense.
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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.
mjkz

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Reply with quote  #32 
UGHHHHH!!!  Sorry.  Just had to do that.  I can only hope the tribunal sees what everyone else does.
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Reply with quote  #33 
Oh my, talk about stress!  Sure hope it went well - looking forward to the next update.

Thinking of you. xx

-Torie

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Sotired

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Reply with quote  #34 
Oh Hebrides-I remember all of this happening to us and the stress your mind and body go through.
I don't think she can ban you from the hearing as you are still her legal guardian and she is not yet 18?if she can im pretty certain that you can send a statement to be read in the court detailing what is happening from your point of view and what you feel would be best for your d.its finding ways around things sometimes and the problem is no one even gives us a hint usually of what we CAN do, only what we can't.
Even though there is struggle and pain still, I can see that your d seems to be making progress.to be eating and drinking, to let herself be saved when she ran again, and having the staff want to work with her is a huge plus.
Regarding what to do in bad visits-we learned as we went along that sometimes it was best to just turn and go,letting staff know as we went that the visit was getting cut short because that was for the best.we could travel for half an hour and then be returning home after less than five minutes.we would text that we loved her and that we would try to visit again in a few days.one time after several visits that had gone poorly I took my odd sock pile in and did that while she sulked.she had the option to help but she didn't want to,so she raged and sulked and I folded while her dad and brother rested.right at the end she came right and we played cards for a bit.but if I had just sat there I would never have coped-I had to have something to distract me from all the pain and anger being thrown at me.
There's nothing wrong with taking in some form of work if that's what it takes to get through the visit.when she was in hospital I would take in magazines with crossword puzzles.i would do those while she rested.again, if things got really bad, I would let the watch and nurses know and once she was safely under watch I would leave(and cry of course).during good visits we would go out with d in a wheelchair-just a walk together in the sunshine,or wind,or a few memorable times getting caught in the rain-but time away from other people's eyes made it a nice time,even if we were just wheeling around the hospital grounds.
I took meds myself during this time and an anti anxiety tablet as well.it didn't stop the night sweats or the body tension, but it helped me get through some bloody tough days.
I am sure the tribunal will go well.please look after yourself hon, that's very important.a cuppa and some crappy tv or a magazine or a book that doesn't need much attention....a quick massage to help with tension....a catch up with a supportive friend...a walk on the beach or round a lake...something that soothes your soul and eases tension.
Hope this helps,

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K63

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Reply with quote  #35 
Hi Hebrides , good to hear from you sorry it's still so hard. Taking the positives your d is eating now which is a big step. . How did appeal go. This is a horrible illness. Are you getting enough time for yourself as it is such a long road you needs lots of little breaks .
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Izzo

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Reply with quote  #36 
Good luck Hebrides and often think of you since your response to me around Xmas time. My D did come home but it was a disaster and she has moved to an HDU and has been on 1:1 since. Food is getting better and there are NG feeds have stopped for the past couple of days. However after two weeks of grace my D is starting to kick up again with staff. It just seems never ending and I am guilty of feeling so so anxious every time there is a trough like this. I told her off last night which was unusual for me - I said that she can't be violent anymore and it is unfair on everybody and that she can't move hospitals again (which is what she is now looking for). I know that this is probably the wrong thing to do but she seems to have lost her boundaries. 

I'm sure they won't uphold your D's representations at her tribunal and you'll get the result that she so clearly needs. 


Hebrides

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Reply with quote  #37 
Thank you all so much for your care, concern, advice and support. It means so much to me through these dark days/weeks/months/years...

So... the tribunal happened, and ruled that d's section should stay in place. Big relief - for us and all d's team. It was, of course, a pretty formal procedure, but the judge was very kind and spoke very gently to d. The thrust of all the reports and submissions was that d IS making progress in the right direction, and is working collaboratively with staff, so coming off the section now could jeopardise that process. The solicitor read out d's statement, which said something along the lines of "I know I'm not well and need more treatment and support, but would stay in hospital as an informal patient if discharged from my section". Yeah, right. I for one do not believe she would have done so, given the opportunity. Thank goodness she wasn't.

The bad reaction I was expecting didn't happen Friday or Saturday - she was ok with me, and pretty bright all round. Strange... but then it kicked in 2 days later and things have been awful (again) since. Extreme low mood, expressing suicidal thoughts/intent, tying ligatures several times a day... Staff were keen to keep her off 1-1 obs if at all possible, given she had only recently worked so hard to get off them, but had no choice this last weekend and had to reinstate them. Everything -clothes, wires etc is locked away again, and this time she has no bedding on her bed - because she tried to tie the sheet around her neck... It is heartbreaking (again) and I am (again) very anxious that the unit will feel they cannot manage her. I will be there tomorrow so will try to talk with psychiatrist if she is free. One positive - d has agreed to try a different antidepressant (she has refused any meds point blank since mid Nov), has agreed to a low dose of Diazapam daily (for the short term) and is accepting, and sometimes asking for, promethazine prn. And through all this turmoil, she is still taking all her diet orally.

It was her older sister's 21st birthday at the weekend, and we know d had told staff she felt so guilty for ruining the day (as she also feels about ruining Christmas) - I so wish she could hear us when we tell her nothing is ruined, that all we want for those special times is to be together, which is what we did (we fetched older d from uni for the afternoon - thankfully it's only 45 minutes away).

I am trying to look after myself - h is away all week so I have planned to meet friends a couple of times and managed a couple of hours in the garden this afternoon. I do still feel utterly exhausted, almost paralysed, all the time, and am trying not to beat myself up for not being able to rattle through jobs etc like I used to, but it's not easy. As you all know...

On the advice of the psychiatrist, h and I have just planned a few nights' away (Florence![biggrin]) in a couple of weeks - since we were unable to celebrate our silver wedding and my 50th back in the autumn. Am going to have to work REALLY hard not to worry about d while we're away....

Hoping beyond hope that d turns even a tiny tiny corner soon...

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #38 
Relief!!!  Glad they kept the section and it does sound like she is making progress although she took a step back.  Remember it is truly one step forward and then one back. When you deal with it everyday, you don't see the progress as easily as you can from a far but some good things:
-Meds!!
-Still eating!!
-Working with the staff.
-Acknowledged know she was unwell even if just to sound good.
-Asking for prns-huge!!

Tell her nothing but fun stuff about the birthday and that you missed her but you know she will be there next year-that you have faith in her ability to get herself out of this and back into life which is waiting for her out there.
Izzo

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Reply with quote  #39 
Hello Hebrides. 

Glad to hear that the section was kept. I agree with mjkz that she is making progress although I know where you are at with the ligature tying - it's just so upsetting to hear it. Small steps all the way. With a D in a similar position/mental state I constantly have to remind myself of the progression even though the line is extremely bumpy. It's fantastic that your D is still eating through all of this and agreed to try a new medication.

Just to add that since my D moved to a new unit there is no choice about taking medication - i.e. that if she doesn't take it voluntarily she will have to have it down a tube. I think they need a second opinion to do that but it has happened and I hope the meds will kick in. I think it's a section 16 but don't quote me on that. 
Hebrides

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Reply with quote  #40 
Thank you, mjkz and Izzo, for reminding me of the positives - it gets so hard to see them in the midst of everything else. Thank you too, TF, for being there.

So I did talk with the psychiatrist yesterday, and it was the conversation I was dreading. She feels they are not giving d the help she needs and wants to explore transfer to a general psych ward that may be better able to treat the depression/self-harm and explore the suggestions of ASD and BPD (though with the caveat of still being in the grip of AN...) The psychiatrist knows and we know things need to happen differently from last year, when d had a month in a general unit to treat her depression/SH after 8 months in an ED unit, but it ended up being a step down to home and involved no treatment at all - and we were rewarded with full-blown relapse after 24 hours. 

Although she didn't speak, d was visibly upset at this news, and very cross with me afterwards - she did say "this is where I need to be" but also said "i'm fine" when I reminded her that attempting to tie ligatures constantly was a massive concern and definitely not "fine". Then she told me I had no idea what it's like (true, I can only guess) and stormed out of her room. 

It's clear nothing will happen too quickly, and the psychiatrist told her they will continue to support her and work with her, and that this plan is not set in stone - if d can begin to make some commitment to change... I just don't know if she can, and if we keep telling her she has the power to halt this process and stay where she is, is that going to heap pressure on her and then make her feel even more of a failure if she can't manage it? So hard knowing how to get the right measure of compassion and understanding for where she's at in combination with trying to encourage her to stand up to her illness and do the right thing for her recovery...and all this made so much harder by her refusal to talk to me about any of this.

Not sure I'm looking forward to my weekend visit this week...

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #41 
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I just don't know if she can, and if we keep telling her she has the power to halt this process and stay where she is, is that going to heap pressure on her and then make her feel even more of a failure if she can't manage it?


Hebrides I'm a firm believer in calling a spade a spade and being very upfront with my daughter.  When we have been in similar places, I have been very honest with her about the fact that she is the only one that can change her future course and that she doesn't have to be perfect but demonstrate willingness to change and curb her behavior.  She might not be able to fight the urge to try to tie a ligature around her neck but that is when the emotion peaks in intensity.  There is a lead up to that and she is more than capable of going to staff and asking for help before it hits that peak.  Same with cutting and purging.  I never tell her "I told you so" after if she is truly not able to do what she needs to do but I also don't let her try to blame someone else.  I'll tell her that it was her behavior that got her transferred and now we have to work with where we are.

If she thinks she needs to be where she is, then maybe talk to her about what she can do to help fight the urges and use the support she has with the staff to fight the urges.  As for you having no idea-that goes both ways.  My daughter pulled that card out often and my reply was she didn't know what it was like from my side either and not talking to me or working with me just made that harder.

She got off 1:1 before so she can do this.  It would be a shame for her to have to move to a unit that might not be able to treat the eating disorder.
Izzo

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Reply with quote  #42 
Hebrides, my daughter is at a unit that specializes in both the SH behaviours and suicide ideation AND treating the eating disorder. However I am based in London. Would this be too far for you? Since she has moved to this unit it is the first time that I can feel that my D is in safe hands. 
Hebrides

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Reply with quote  #43 
Dear Izzo - I'm so glad your d seems to be in a place that really has the potential to help her. You have been through so much already you and she deserve to have a good team to work with. Our d's sound like they are on quite similar journeys...

We are up in Yorkshire, so London probably isn't a viable option - which unit is she in? I could at least look at their website...

I'm about to set off to be with d for the weekend and am just hoping we can have some time where she is able to be calmer so we have the chance to talk a bit.

Wishing you as good a weekend as it can be too.

Hang in there - you're doing an amazing job.

xx

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Hebrides

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Reply with quote  #44 
Thanks, everyone. Sadly the unsettled behaviour continues, more or less. At the end of last week staff reported d was a little more settled, but also that there had been an incident where she had gone behind the sofa and tied a ligature...with her hair. What??? And we noticed that her bedding had disappeared again. 

Although we had a good visit on Saturday (d not wanting to play games but did want to play piano duets with us, and spent a good half hour playing her flute, something she has hardly done at all in the last 3 years), this morning I got a call from the psychiatrist saying she had a bad night, needing 2 staff with her for much of it, and they are trying to find a bed in a PICU  - possibly Maidenhead or Sheffield, but beds are of course like gold dust.... Plus my mother seems to have been getting more frail, unsteady and muddled over the past few weeks and I spent the morning sorting out her shopping and confusion over credit cards etc, while trying to stay positive and calm and respond to her "Is d making any progress?" questions. I just want to curl up in a corner with my book and my knitting and have someone else deal with EVERYTHING else... Meantime I can feel my neck and shoulder muscles tightening and the stress headache starting...

In less than 48 hours we are due to fly to Florence...it has crossed my mind to wonder if somehow the uptick in d's distress and our impending departure are connected (not necessarily in a conscious way, of course). Who knows?

I guess our challenge will be to try to put some mental and emotional, as well as physical, distance between d's situation and our time away, so we can enjoy the benefits of a break we so desperately need. BIG challenge...

Not sure we are managing even 1 step forward, 1 step back at the moment - feels more like giant leaps back into uncharted territory, and increasingly hard to see any sign of a pathway out. But we will not shift from d's side and we WILL get her through this...won't we?

xx 

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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #45 
Heb, have a good vacation and truly let things go.  One rule I always follow even when daughter is in the hospital is to check my messages and email once a day if that. Otherwise the vacation gets lost in the everyday stuff.  She is in the safest place she can be and you and the rest of the family desperately need a break.
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Reply with quote  #46 
Thank you so much, Toothfairy, mjkz & Izzo. Apart from storm Doris threatening to disrupt our flights (fingers crossed), i am actually now beginning to look forward to our trip, despite our circumstances. I've been up to visit d this evening and while she was in a bad way to start with, by the time I left she was at least talking a bit and not hiding her face in her hands. I know she is well cared for and I absolutely agree about modelling "normal" life to someone who now can barely remember her life before anorexia and depression took it away.

xx


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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
Hebrides

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Reply with quote  #47 

We are not in Florence. We are home – flight was cancelled, as were all flights to Florence via Amsterdam for the rest of yesterday, so after a fair bit of hanging around and hoping, we decided it wasn’t worth rebooking to fly today and only really having a day and a half there. Will get there one day, though goodness knows when.

As if that wasn’t enough, I had a call from d's unit while in the departure lounge to say a PICU bed had been found and d would be transferred immediately by secure ambulance, but without a member of staff accompanying her. Bizarre feeling, sitting surrounded by happy people setting off on their hols, having a meal together etc, while I'm in tears trying to get my head round a rather large crisis... There was no possibility of holding the bed till Monday, so I had no choice but to agree, knowing d would be distraught and terrified – especially since the bed is at the same hospital as 1st admission back in 2015 (not good experience) but obviously on a different ward (PICU). So in the end, it was probably good that our flight was cancelled, as it took the decision away from us and we were at least able to be at the unit for when she arrived – looking so, so scared and traumatised. Ugh ugh ugh.

We will head back there today, though are only allowed to visit for a couple of hours. Our CAMHS family therapist was a star yesterday – I left her a message just before we were called to the gate and she managed to speak to d before she left the unit in the morning and after we had left her at the new place yesterday afternoon. She is also planning to come to the PICU this afternoon so we will have some overlap time with her there too – a familiar voice and face for d in the midst of a pretty scary day.

I know that d ate nothing after she left the unit at 12 yesterday (ambulance staff: Just let us know when you want your lunch/Would you like a kit kat), and so far hasn't had anything today. Spoke to a nurse briefly who said they would try to support d and not give her the option of not eating, but I guess we are up against the downside of no longer being in a specialist ED unit with very clear protocols around mealtimes and what happens if there is non-compliance. Will try to talk with staff this afternoon, and try to summon up some energy from somewhere to gather some info (MARSIPAN etc etc) over the next few days to pass on to the unit. I can contact the ED unit psychiatrist on Monday and ask her advice too. While d is not at a critically low weight, she is still only 80% and we have plenty of experience of medical consequences of starvation for 24/48 hours at any weight. Up until yesterday breakfast she has been fully compliant with taking all diet orally for a couple of months, and it's pretty damn hard to see AN profiting from the very first opportunity to not eat, though of course it's no surprise. 

So, there you have it. Now to the business of sorting out refund, claiming on insurance etc and sorting out the vast amount of d’s stuff that had accumulated in the north East and is not permitted on the PICU ward (including pencils, wired bras and pants with elastic that can be removed....). Deep breaths and carry on – because there is no other way.

I'm crying as I write and sobbed as I unpacked her bags this morning - and I know all you wonderful people here will understand.

xx



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Mum to 17 year old daughter with AN,1 year IP from Feb 2015, discharged Feb 2016, WR but mentally nowhere near where she needs to be. Remained stable but rapid weight loss again leading to admission to specialist ED unit Sept 2016. Back round the circle...
mjkz

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Reply with quote  #48 
Heb, I'm so sorry.  You will get there one day and in a way I wonder if you would have been able to enjoy it after the call about your daughter being transferred.  Maybe this is life's way of saying you have something waiting for you in the future for a longer vacation and maybe with daughter too.

Either way it is so unfair.
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Reply with quote  #49 
Hi Hebrides, heartbreaking to read your post i doubt if you would have in any way been able to enjoy break with your d being moved , sometimes things happen for a reason if we only knew the reason it may help.What type unit is she in now. Hopefully this will be a good safe place for her to recover in. Thinking of you hope you can get a few hours break for a coffee with a friend or a walk.
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Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
Torie

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Reply with quote  #50 
Oh no - instead of a little vacation, you get a ratcheting up of life challenges?  So so so unfair.  If there were any justice in the world, you would not be called upon to do this right now.  

Please remember that it does get better (when it's done with the getting worse part).

Sending strength and hugs (and a basketful of gold stars for all you do), 

-Torie

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