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

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Hebrides
Hi everyone,

As some will know from another thread, my D was discharged a week ago from IP at a healthy weight. The following day she started restricting her intake, only eating 3 yoghurts a day for a couple of days, now down to a handful of grapes  through the day. Fluid intake is still ok. ED thoughts through the roof.

CAMHS are currently searching for another IP bed for her, which probably isn't going to happen very quickly; in the meantime we are going to have to try everything we can to challenge and break the "I can't eat more than I ate yesterday" rule.

Does anyone else have experience of this kind of restriction at WR stage ie the shift from 2500 cals to less than 100 a day? Are the risks of refeeding syndrome the same as if they were at a much lower weight? If we can manage a breakthrough and get her to eat more, it's obviously not going to be the full diet straight away, but it would be good to have an idea of the pace to go at. I'm being massively optimistic here, of course; chances are it's going to be extremely difficult to effect that shift.

D has at least acknowledged today that something needs to change in order for her to recover. I'm hanging on to that and telling her that going back to IP is not yet inevitable ; there is still time to turn it around.




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...
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Bottle
Hebrides I can't answer your question, but wanted to say how sorry I am that things have gone downhill so completely and so fast. I have real trouble understanding how the team can have thought she was ready to leave or how our treatment model is so useless that the transition is so all or nothing.
Sending virtual hugs and support.
Bottle
D2 RAN as part of Pervasive Refusal Syndrome with a history of not walking for a year and being non verbal for a short while too. Considered to be Aspergers by everyone that has worked with her and by us but still awaiting a diagnosis that'll help us access support services she needs.
D1 recovered RAN and D3 doing pretty well considering the mayhem around here!
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Sotired
Yes sadly.our d would be refed to a healthy weight,come home and immediately restrict.sometimes our turnaround time between hospital and home was 24-48 hours.we went straight back for assessment as we didn't have to wait for a bed.i don't truly understand that by the by.so even if your child is severely restricting you are supposed to wait?can you not just take her to hospital for assessment and get refeeding done at a&e if necessary?not that we can here in NZ,but they will put you in adu and it can happen there.
It will depend on how long they leave it before they admit your d for the risk of refeeding syndrome I think.not a doctor at all so just going by our experience.usually once they have done the potassium drip they then start the feed slowly the day after.they will put a watch on to note what is going on with d and she will be kept at the hospital at least until the danger of refeeding syndrome is over.this is only based on our recent experience at hospital .
I am so sad that this is happening Hebrides, I know that as a mum even when you see the writing on the wall you just feel crushed.do what you can to look after yourself-even if it's just 5 minutes alone with a magazine.i do crossword puzzles,particularly when I am admitting my d to hospital as it fills in time.
I hope that you can get your d a bed soon,but if it will expedite the process-or just if it is necessary which it sounds like it is-take her to a&e for assessment.even at a healthy weight they still put their heart under huge strain once they go back to total restriction so this needs checking asap.
Good luck hon and a big hug from me,
Sotired42
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mjkz
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D has at least acknowledged today that something needs to change in order for her to recover. I'm hanging on to that and telling her that going back to IP is not yet inevitable ; there is still time to turn it around.


That is a positive sign.  Even if she does end up back inpatient, hopefully you can build on that realization and make it a much shorter stay as well as do more planning around transitioning out again.  I got my fingers crossed that she can pull out it and not need that hospital bed.  Tell her she has people out here who believe she can do it.
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Hebrides
Thanks everyone for your support, as always.

Bottle - she has been WR since before Christmas and complying with meal plan since August, and definitely "talking the talk" in therapy sessions, to doctors, to us, to CAMHS. The AN has certainly taught my once honest D to lie and dissemble like a pro... I'm not sure her most recent IP team could have justified keeping her IP for longer; I just wish someone, somewhere, had been able to connect with the "real" D and enable her to see an alternative way of living IS possible... You're right - it would have been great if there could have been a more stepped transition, but there is no "day patient" facility anywhere near.

Sotired - I had a feeling you might have been in this situation yourself.... Great that your d had a bed she could return to even once discharged - wow! I guess if this regime continues, we should be showing up in A&E before long - though I am anxious that we could meet the response we've had in the past when D was at a much much lower weight and after several days of major restriction ("this is neither an accident nor an emergency", "she looks fine" etc). Our CAMHS nurse has contacted the ED consultant in the general hospital for advice about a) when to bring D in to A&E and b) whether there is a way of bypassing A&E and going straight to the children's ward for assessment - but we won't hear anything on that front until after the weekend. I have the option to contact the CAMHS nurses on call for the w/e, which I think I will do. Trawling the internet for info on refeeding syndrome the consensus seems to be that >5 days severe restriction can be a risk for the syndrome. Today is day 8. Just don't know if I should take her now, or wait till our next CAMHS appointment on Tues.

mjkz - you're right, this is positive (if she really means it). Trying to hang on to that. I have tried to talk a bit with her today about ways she might be able to challenge the ED "rules" which would enable her to start eating again, but got nowhere. All she says is it won't let her have more than yesterday, the guilt of eating is unbearable, telling ED she has no choice but to eat because we are requiring her to do it doesn't work because she knows we cannot force her to eat - the only thing that can  is an ng tube. 

Toothfairy - positive thoughts are what we need so desperately, thank you.

Thinking of everyone in your battles with ED in your families and sending love and support to you all.

xx
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...
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K63
Hi Hebrides,sorry that things are still so difficult. I would contact the nurse with Camhs on call it will Re Enforce to your d that you are serious and that she needs help . If she is restricting a lot she can lose weight quickly. Have you used life stops till you eat refuse to allow her leave the table until she eats I know this is difficult with older children as when my d left the table I would sometimes leave her for a few minutes to give both her and me time to calm and then I would talk to her to get her to return to the meal . Hope you have someone to help you and try to get a break from it .
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. 
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Foodsupport_AUS
So sorry that things have gone backwards for you so quickly. My D also did this on numerous occasions. We only have short stay inpatient (in our case mostly 3 -5 weeks) so they would feed her up and we would bounce right back. No options with our unit for urgent readmission either.

In general the team was much less concerned about refeeding syndrome when she was at a higher weight, and when she had been eating most of her meals up to three or four days before admission. My D would often stop eating altogether. D's last admission was when she had been weight restored for some time (months), then started restricting a bit over a few weeks moving to no food for a few days. They did do all her bloods and monitor but she was put on a meal plan similar to what she was eating prior to restricting. 

I found the best strategy for my D was to emphasise that ultimately the food was going to go in, and I would take her back as many times as it took. Even if that could not be achieved immediately. Is there anything you can use as motivation to help her work to stay out of hospital/inpatient?
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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ooKoo
Hi Hebrides, so sorry to hear that things haven't improved with you and your D.

In respnse to your initial question about refeeding syndrome at WR, yes, this is considered a risk. My D spent five days in a general medical hospital at the beginning of Feb because she was being monitored for refeeding syndrome. She was over 100% weight for height, but they still did bloods to check for refeeding, although, I dont think she actually consumed enough calories to trigger refeeding syndrome (which I think is about 1,200, but could be wrong). My D was considered low-risk for refeeding, but nevertheless, still at some risk.

I hope you can turn things around, or get her back in IP soon. It sounds as though she still needs the help of an ng tube.

Keep us posted. X
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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evamusby_UK
My D had 5 days eating no more than a couple of biscuits a day, some time after discharge from hospital. She was at a good weight, or nearly, and had been so for months. After the 5 days, she switched into eating nearly normally, if I remember. We were getting good professional support and nobody told us to worry about refeeding syndrome. 

I don't know if that was an oversight, or whether clinicians really didn't think it was a risk, and if they didn't think it was a risk, would that have been because her weight was safe enough, or because she had not been starving for more than a few days.


Here are some links to stuff I've collected about refeeding syndrome - maybe some of it will help you either decide it's fine, or check you're happy with what your clinicians are saying.

O’Toole, J., ‘Preventing Re-Feeding Syndrome – Hypophosphatemia’, on the F.E.A.S.T. website’s ‘The Facts’ section

More recently, researchers have argued that the risks have been inflated: Golden, N. H., Keane-Miller, C., Sainani, K. L. and Kapphahn, C. J., ‘Higher Caloric Intake in Hospitalized Adolescents With Anorexia Nervosa Is Associated With Reduced Length of Stay and No Increased Rate of Refeeding Syndrome’ in J. Adolesc. Health (July 2013), pii: S1054–139X(13)00315–7, http://www.ncbi.nlm.nih.gov/pubmed/23830088

[20] Ibid. and ‘UCSF study turns anorexia treatment on its head’, SFGate (October 1 2013), http://www.sfgate.com/health/article/UCSF-study-turns-anorexia-treatment-on-its-head-4827675.php


These people re-fed fast and found no issues with refeeding syndrome:

Outcomes of a rapid refeeding protocol in Adolescent Anorexia Nervosa. Sloane Madden1,2,3*, Jane Miskovic-Wheatley1,3, Simon Clarke4,5, Stephen Touyz6 , Phillipa Hay7 and Michael R Kohn1. 2015.  

http://www.biomedcentral.com/content/pdf/s40337-015-0047-1.pdf

Also:
Marzolla et al http://bmcpsychiatry.biomedcentral.com/articles/10.1186/1471-244X-13-290.  Nutritional rehabilitation in anorexia nervosa: review of the literature and implications for treatment.

Courage for the next meals....

Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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Hebrides
 Thanks for your continued support -much appreciated this end.

Foodsupport, Ookoo and Eva - it's helpful to hear your experiences. Eva - thank you so much for the references, which make interesting reading.

Worries about refeeding syndrome seem a bit academic now, as we have failed to make any progress at all with eating. Still that steely determination on D's part (or rather AN's part - D has admitted she feels so hungry, but the voice in her head will not allow her to eat, she is desperate to lose weight again and she is still bound by the "have to eat less than yesterday" rule.) We have tried talking more about the "rules" of AN, trying to help her frame alternatives to them, trying to find a way they can be challenged...nothing. We're now down to 6 grapes, after 10 days of almost total restriction. When we talked today about her knowledge that something will have to change, she said "only when it has to" - it's as though there is no way that can happen by her own volition, at home, to avoid hospital/unit; it can only happen when others step in. That may well be how things will go in physical terms, but the worry is that unless she is able to engage honestly with therapy at some point, nothing will change. We feel so powerless in so far as we can't make that shift for her.

My worries have shifted more towards the risk of impact on her medical stability and her heart, and I did speak to the on call CAMHS doctor yesterday. His advice was to wait till our CAMHS appointment Tuesday morning, unless she clearly deteriorated, lost consciousness etc. Only another 12 hours till that appointment.

Will update tomorrow.

xx


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...
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Torie
Hebrides wrote:
 I did speak to the on call CAMHS doctor yesterday. His advice was to wait till our CAMHS appointment Tuesday morning, unless she clearly deteriorated, lost consciousness etc. Only another 12 hours till that appointment.
 

Oh dang. My heart continues to go out to the many whose "professional help" wait for a crisis before stepping in. I'm so sorry, Hebrides, that you are having to witness your d's decline. I sure hope they take her back in when they see her at her appointment. Thanks for keeping us up to date. xx

-Torie

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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evamusby_UK
Oh dear oh dear, Hebrides, how horrible these days must be...

I can't recall where you're at in general so forgive me if I'm going down a route you have already tried like crazy.

I'm thinking there is still hope that you can get her to break her rules. e.g. any chance that by sitting with her to break one rule in one small way (e.g. eat one more fraction of a grape at the next mealtime), then you've set a precedent for breaking bigger rules the following mealtime? (My daughter ate after 5 days that sound a bit like yours.)

It sounds like the conversations you're having with her are not moving her right now, and I wonder if the stuff I've put in my two YouTube videos (which are about mealtime support) might give you a wee boost?

I really wish you some kind of hopeful shift today.

Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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Hebrides
Eva, thank you. We were thinking along the same lines - how can we get a tiny shift in the "rules", and came back from CAMHS this morning with a plan to eat the same today as yesterday ie 6 grapes. I know in itself the amount is irrelevant, but breaking the rule and opening up the possibility of further rule breaking seems so important right now. I have sat today for many hours and reassured and encouraged to no avail - 4 grapes and not a molecule more. She tried to avoid a cup of tea this afternoon (presumably because of its milk content) and I lost my cool (dammit, sorry!!!) and had to leave the room (I went to rewatch your videos). Just as I was about to go up to her room a while later, D came down, apologised, hugged me and did not resist when I made a fresh cup. Took a long time, but she did drink it. 

She has lost a massive 6 kg in 2 weeks, and is feeling increasingly dizzy, tired and weak - no surprises there. Her pulse (when I can find it) is relatively high. The bed hunt process is under way, and in the meantime we have permission to phone the paediatric ward she was on last year for advice, or show up in A&E.

In the meantime H is feeling angry and despairing of D ever being free from AN, older D (at uni) is very upset this is happening so soon after discharge and apparent "progress" on her sister's part, and I am finding it hard to manage these long shifts on my own...

xx




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...
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evamusby_UK
Dear Hebrides
Toothfairy's words are just what I was thinking too.
I am also cheering that you had the courage to present her with another cup of tea, and were rewarded with a success.

Interesting that your D gave you a peace offering some time after you lost your cool. My guess is that she really wants to connect with you, to have you be OK, be supportive. She did not use your outburst as an excuse to say she'll eat even less or that she's cutting herself off from you "for ever". I have sometimes needed outsiders to point out to me, at times, how my D was connecting, trusting me, so I hope this strengthens you. I'm also guessing, from what I know of my D, that is is absolutely awful, terrifying, depressing for her to realise she is back in the pit from which she and you thought she's got out of.

If you've not thought of it, one thing that has helped over here is to normalise what's happening. So whereas one approach is to point out how self-destructive and dangerous her actions are and how she needs to take a grip, another approach which I have found works way better is to say how it's really common for a phase like this to happen with anorexia, and you're by her side and she will manage to eat soon, because others have, and she'll have a beautiful life and look back with pride. And swiftly on to another grape.

I am so sorry about the stress you're all under. Horrible. If you like, tell your husband and other daughter that I feel for them. Been there.

Nothing stays as it is for ever. May this horrible phase pass as soon as possible.
Hugs
Eva




Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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Foodsupport_AUS
I am so sorry that things seem to be going from bad to worse. Too be honest though I think that CAMHS is not taking this seriously enough. If her pulse is hard to find and she is having problems with feeling faint and giddy I would be contacting A&E  or at the very least getting an urgent GP review of her BP and pulse and looking for postural changes. She sounds like she her physical health is deteriorating rapidly. 

This sounds just like my D. She did not want to go back to hospital but she was powerless against the ED thoughts. It did help her knowing that she would be taken back, and most of the time her resistance to being taken back was remarkably low. It took my D a very long time, but she is soooo much better now. 
D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
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Doitagain
Hebrides, just wanted to send my support. It was lovely to talk a few weeks back - I know a lot has happened since to say the least. I know times are very hard now and wanted to say and hopefully you can find the strength to believe, that it usually takes a few goes at it with particularly tough cases. Perhaps it might help to consider the first long hospital stay as round one. She may need a few goes at this and will start to move forward again . I'm with Eva on this - it might be good to emphasise that you know she's been doing her best and that this kind of thing often happens after discharge and that you'll work with her however she feels to try to help her make it better. It might be good too to say that it does go like this initially for some but that next time it may well be very different and you'll be there then too. kind of emphasing the empathetic approach all the way. The tea thing is a good sign I think - she is in there and Ed lost out for a few minutes. X
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K63
Hi Hebrides, my heart goes out to you as this is like our story was after my d s discharge from IP after 4 1/2 months, she restricted and lost 5 kgs very quickly I was beyond crazy my h was in hospital and I found it so difficult to stay calm . I lost it and only for listening to Eva I don't know what would have happened. I had told my h when he came home from hospital and was feeling better that I actually might have to go away for a while as I was finding it so distressing What turned d around I am not sure I think it may have been wanting to go back to school and finish her last year before college and also she did not want me to have to go away. our two older adult children were so upset . It has been so slow getting her back eating full meals and increasing each week and it's only now we are almost weight restored. I keep thinking of you and your d and hope you get the help and support before she becomes too unwell. Keep putting out the meals and sitting with her and try the nutritious drinks.
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. 
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Hebrides
Toothfairy, Eva, Foodsupport, Doitagain and K63 - thank you all so much for your positive support and wisdom, just when I needed it most. D was admitted to the children's ward this afternoon - a sadness but also a relief for us since there just didn't seem to be a way through the restricting at the moment. She was slightly dehydrated and when I left her hadn't been able to drink or eat anything. Not sure what tomorrow will bring, but at least we know she is in a safe place tonight and will be monitored through the night.

Bed...

xx


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...
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IrishUp
I am sorry Hebrides - but I am glad to hear she will be medically safe, and hope a way through will be found soon.

Thinking of you.
IrishUp
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