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moonshine

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Reply with quote  #1 

My stepsister (S) is 21, in her second year at a uni 4 hours away. I’ve posted previously about our background so I won’t go into details now. Just before Christmas I’d posted about her relapsing into AN at university since being there from September, having gained weight to near WR over the summer.

She has continued to lose weight, and pretty much refused to even engage with me over Christmas break. Whenever I tried to approach her or encourage her to eat more she would completely ignore me, leave the room, or walk out. She spent a lot of time avoiding me and my H, especially at meal times. S was thoroughly miserable the entire holidays. Fortunately, she did eventually begin to open up to me about how difficult she has found managing the anorexia and her studies at uni, and I was able to persuade her to increase her intake by a few hundred calories – nowhere near enough to gain weight, but it was progress. It was only in the last couple of days of her being home that I think I saw the real S, not the S controlled totally by anorexia.

She’s barely been back at uni for a few days, but she had a GP appointment and the doctor is very concerned about her continued weight loss – she has reached a low of 37kg at 5ft 3in. Her obs are all fine which is a relief, but given her low weight and ongoing restriction (which improved slightly while she was home, and has worsened again at uni), S agrees that she needs to be home. If she continues to stay at uni much longer, even for her exams at the end of the month, she could seriously jeopardise her health. As a result, she will be taking medical leave and is moving home soon.

I am frantically trying to prepare to help her to refeed. She has agreed to let me be involved in meal planning and feeding her, but I do not want to get into negotiations with anorexia.

I have a few questions about refeeding…

She has been eating very little for the last few months, around 600 calories a day. How do I increase this? I would like her to be getting to a minimum of 3000 calories for weight gain, but I’m aware of refeeding syndrome and the risks… How slowly do we increase calories in the early days?

S is also petrified of binge eating. This is something that she told me she struggled with over the summer when she gained weight of her own accord – she ate a very controlled diet during the day and binged every evening and into the night. I often heard her sneak into the kitchen after we went to bed in the evenings… Is this common?

I don’t know if I should try and stop her or not – I believe that once she’s eating sufficiently throughout the day the urge to binge will lessen, but is this right? And should I try and stop her from bingeing? If she is in the early stages of refeeding and she binges on thousands of calories does this put her at risk of refeeding syndrome? I know it’s quite rare, but I am so concerned about her… I just want her to be safe and healthy, goodness please that would be a dream come true.

Anyway, I’m so sorry for having so many questions! Any help would be truly appreciated.

silali

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Reply with quote  #2 
Hi moonshine,
when my daughter started refeeding at the hospital (at that time she was 36.4 kgs, and she hadn't eaten for 48hrs) on DAY1 and DAY2 she was given 3 small meals. On DAY 3 they started introducing one snack per day. DAY6 increased the portions sizes. Of course in hospital, she had blood tests taken every day to check on Refeeding Syndrome.  

I am not an expert, my daughter has only being diagnosed last October.
I am sure there is more "expert's advice" on the way on this forum for you.
I just thought I share my experience with you, while you wait for others to respond.
Good luck!  [smile]   
Kali

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Reply with quote  #3 

Hi Moonshine,

I'm glad your sister has agreed to come home and work with you on refeeding.

Does your sister have a GP at home near you who is familiar with eating disorders and can you set up appointments for her at home? IMO, her weight is so low that she really needs to be medically monitored and possibly hospitalized if necessary. 

As far as the danger of refeeding syndrome goes, I think the usual procedure is to add 300 calories more every couple of days while being medically monitored. My d. started at 1200 (after eating around 400 a day) and it took a couple of weeks before they reached an appropriate amount of calories so that the weight gain diet could start. You could check with her doctor and confirm. If she is frightened of binge eating, just reassure her that you are doing the best thing for her and try serving her last snack in the late evening so she goes to bed full and doesn't want to binge. Does she vomit after a binge? If so someone will need to stay with her to prevent her going to the bathroom and vomiting. 

I'm honestly a little surprised that her dr. did not advise her to go inpatient.

Good luck...let us know how it goes. We are here for you.

Kali




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melstevUK

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Reply with quote  #4 
Hi Moonshine,

Personally, I think that it is unfair on you and your family to take on the refeeding of your sister, given the weight she is at.  I know you do not want her to be in hospital near university because she is going to be lonely.  You can see how she has been over the Christmas period - she will agree to cooperate so that she can come home but I doubt very much that you can turn things round with her on your own right now.  As soon as she returns she will start the refusal to cooperate again.

I would only agree to take her on condition that she registers with your GP and puts herself under the supervision of the local eating disorder service.  You did mention something about them, but I can't remember what the situation was, I think they only take patients if they are around a bmi of 15 is what you said.

It is tough love here.  You cannot be expected to take her back home with no medical back-up and I think you need to stand your ground here.  If she is only eating around even a 1000 calories a day, her weight is going to drop further and she has already moved into a high risk category of eating disorder patient. 

I really admire you for wanting to help her and take this responsibility on but I do not want you to make yourself so vulnerable.  Her health is already seriously jeopardised and you should not be managing this situation on your own.  The support services are out there - so please make her an urgent appointment with your GP, and if she is at all difficult about attending, your h can maybe be the one to put his foot down and tell her she is not welcome unless she cooperates.  Having someone else play the 'tough person' instead of you may help here, because you are trying to be all things to her and in her present state you are both going to be in a high risk situation.

By all means try and refeed her at home, but for everyone's sake, please ensure you seek medical support. The GP should really have got her an urgent referral to the local eating disorder service in the area near the university.  Of course, maybe he tried to and she refused to accept the help.

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moonshine

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Reply with quote  #5 
Thank you for your replies...

Silali - it's helpful to hear others' experiences. I hope your D is doing better now? 


Kali - I am trying to get the ED services where she is at uni to transfer her care directly to our local ED services... If that's not an option, the only way to get a referral to the services is via the GP. Problem is, she isn't currently registered at home because she's registered at uni and you can't be registered at 2 GP surgeries at once. Once S has registered here, she will be able to get an emergency appointment where she can be referred to the ED services. I have no idea how long a referral will take to go through, it depends on the waiting lists etc. S does like to eat as late her dinner and night snack as late as possible, and previously has had a habit of what she describes as 'saving calories'... ED is a minefield. She has never purged - I've checked bathrooms etc. but she has a phobia of vomit so I highly doubt she will ever purge. I wish the doctor would have admitted her, but there are no inpatient beds in either the area where she's at uni and I don't even think there is an adult ED unit in our home area. 
mjkz

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Reply with quote  #6 
Moonshine, I really agree with Mel.  She needs to be monitored and given your experience over Christmas needs more care than you can possibly give.  Get her registered and then push as hard as you can for an inpatient bed.  You never know what is available until you try.  Best of luck.
melstevUK

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Reply with quote  #7 
Moonshine,

I don't know how England works but when my d transferred to the eating disorder service in her university city in Scotland, they would not accept the referral from our eating disorder service psychiatrist without her being registered with a new GP.  I imagine that it would be the same in England.  Your sister can register as a temporary patient initally with your own GP and get a referral that way.  If you can get an urgent appointment and accompany your sister to that appointment to explain the situation to the GP in person, and its complexities, he/she will surely make an urgent referral to the local eating disorder service.  The eating disorder services ring round and find beds, not the GPs, and they will have to find her one if she is so ill.  

At the end of the day, when she returns home, if she is physically so compromised you will need to take her straight to A and E. 

You would both benefit by her being in hospital for a couple of months so that she gets the intensive support to establish a routine around eating and get some weight back on, and after that time I think you could successfully refeed her at home.  My fear is that she will just not be able to fight the illness enough to comply with what you want her to eat right now.  She is just too physically and mentally compromised.

I hope you can get the support that she deserves and needs.

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Believe you can and you're halfway there.
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moonshine

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Reply with quote  #8 
S spoke to her GP today. The situation is complicated. Basically, the ED services she was referred to at uni are a charity rather than an NHS service, therefore they cannot directly refer her to the ED services at home - this has to be done by an NHS service. The GP there will manage her care until we pick her up in a few days. I have picked up a re registration form for our GP but S needs to present herself with ID before they will process it. The uni GP and ED services have assured me that they will both contact the ED services here to try and make a referral go through quicker.
I don't know if that makes sense but I've tried to simplify it!
S has previous experience of the ED services here. There are no adult units in our area - therefore the services are stretched and only start looking for IP beds for the most compromised patients. I hate to say it but S's weight would not be deemed low enough yet - it's a warning sign for them, but given that her obs are normal and she doesn't seem to be at any immediate risk, she would not be a high priority for a bed. I wish I could get her an IP bed - I believe it could really help her just to normalise her eating a bit and get her on track. I will continue to fight for her, it just feels like the system is hindering rather than helping. 
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