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moonshine

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Reply with quote  #1 
So I've been a long time lurker on the forum... and the occasional poster.
It's a long story, but to summarise very basically, my step sister (S) is now 21 and has had anorexia for years. I was her main guardian until she moved to uni 4 hours away last year. She'd been maintaining a low weight (slightly underweight but not critical to warrant concern from the doctor) for many years, and struggled to keep stable through summer exams at the end of her first year at uni. However, as far as I know, she never dropped below 40kg at 5'3. After the exams, over the summer she moved back in with my family and it was like she had the will to live.
In the summer holiday she ate better than I've seen her eat in years. She seemed to be determined to recover, and she was WR by September. She held down a job, ate what I cooked her for the first time ever, things weren't perfect but they were better than they'd ever been.
S moved back to uni mid September to start second year. She's living in a house with her boyfriend, who only has vague knowledge of her history.
It was all going relatively well until her lectures started. She started phoning me more, crying, anxious, stressed. She said she couldn't cope with the stress of work and the stress of food. She went to the GP who put her back on antidepressants and referred her to the local ED services - who can't see her until the end of January.
We Skype often, and she's lost all of the weight she'd gained. She says she's struggling to eat more than 1000 calories a day, I know she doesn't exercise much because she's in lectures every day, she doesn't have time. She tells me she feels overwhelmed, she is drowning in work.
What concerned me most is more recently, she has started saying that she doesn't care. She says she doesn't feel hungry, she doesn't have any wish or need to ear, she can't be bothered to. She says she doesn't have the motivation to eat, or try to eat. It's like the anorexia has taken over her, she's given up.
I don't know how to help her. She is coming home in 2 weeks for the Christmas break. I am scared if her weight drops much lower then her health will be at risk. I don't know how to help her, mainly because she says she doesn't want to be helped.
Has anyone been in this situation? I don't know what to do, I'm worried about her but I don't know that there's anything I can do.
AUSSIEedfamily

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Reply with quote  #2 
Dear moonshine,

Uni is a stressful place for those who are well add in an eating disorder and the stress skyrockets. Many here have found that putting uni/college on hold and concentrating on getting well has been successful. Education opportunities are always available once the person has recovered.

Her boyfriend, if he is really committed to her is someone that can help her provided he is up for the fight and is prepared to learn how. Food is the medicine and she needs plenty of it and she needs plenty of committed determined support to help her do it and fight the beast. Antidepresants work best on nourished brains and may not provide full benefit when the brain is starved.




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tina72

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Reply with quote  #3 
Hi moonshine,
welcome here and its great that you want to help your sister.
Some thoughts about your post from me:
"she never dropped below 40kg at 5'3"
If she was between 40-50 kg at that heigh, she was underweight the whole time. It is not possible to maintain at a so low weight with ED. At that high she might need to weigh more than 49 kg to feel healthy. A BMI lower than 20 or 21 is not good having ED.
The whole ED behaviour (rigid thinking, crying, beeing anxious, stressed etc) is caused mostly by malnutrition. It just fades away slowly by refeeding and the intake of enough fat. The brain needs a lot of fat (more than "normal" people) too recover because it is made of fat.

"She went to the GP who put her back on antidepressants and referred her to the local ED services - who can't see her until the end of January." Antidepressants don´t work if you are underweight. GP should know that. End of January is too long. She can be in medical danger up to then. This GP seems to know very little about AN. Can you ask wether he checked anything? Blood values, blood pressure, heart?

"She says she's struggling to eat more than 1000 calories a day". Most ED patients have such a magic number in their had. First it is 1000 and than it goes down to 500. They really think they can live with that intake and there are damn internet sites that declare that is possible and "healthy". If you cannot stop this low intake, you cannot help her. She has to eat at least 3000 calories to gain weight, maybe more (up to 6000 were needed from families here).

"What concerned me most is more recently, she has started saying that she doesn't care." That is quite normal with patient catched by ED. They don´t see that they are so sick they can die and they don´t want to recover. That is the main problem. You have to help her to eat normal again although she doesn´t want that.

So I would suppose you cannot help her without somebody in the boat who is living with her. Her boyfriend could be able to help her but at this critical underweight state it would be necessary to get her into IP for a start. If she is able to eat again, he can help her to stay in this state. But I wonder if it is not too much to ask him making her gain weight with his help. I don´t know how good their relationship is. This is a very hard thing to do and it might be too much for him at this age. It doesn´t help her when their realtionship is breaking up because of that.

So if she comes to you at christmas break you should be aware that her health might be very critical. She might have already heart problems and she might be dried out (watch wether she is drinking 1,5-2 l a day). If she is not eating or drinking for 24 hours that is a case for ER. If she faints, too. So it sounds hard, but maybe the best help for her will be to get her into ER and IP while she is with you to check her health and give her a start back to life. 
She could have a medical break from Uni and go back if she is well enough to do that. But refeeding is necessary to help her.
She will not want to go there, but if it is medically necessary, she has to.
Try to make her sign a contract that you or your parents are in charge if anything happens that she cannot make choices for her own.
Sorry that I cannot say something better.
Tina72

sk8r31

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Reply with quote  #4 
You may find this "Fitness to Study in the UK" recommendation paper helpful.  The recommendation is at least a year's deferral of studies to focus on health before returning to uni.

Sending warm support,
sk8r31

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moonshine

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Reply with quote  #5 
Thank you for the replies. 
S has been underweight since being diagnosed at the age of 14. The highest she's been is 49kg... she relapses almost straight away if she gets to that weight. I have tried refeeding her myself when she lived with me but it just didn't work - she'd avoid home, lock herself in her room, spend all her time at school/college studying.
I haven't met the GP where she's at uni, as she's a uni student the receptionists seem to make her appointments with a different doctor almost every time she goes. She doesn't have appointments often - they did bloods recently and diagnosed a severe vitamin D deficiency. They check her blood pressure whenever she goes and I know it's low but it isn't dangerous. She told me her HR hovers around 60bpm, and the doctors confirmed. She's supposed to be on vitamin D tablets now but I know she hasn't even picked up the prescription. It's like she's on self destruct... 
From the fact that she is 4 hours away and I work full time, I simply cannot get to her to feed her. I'm not financially able to, I have children to support. She says she feels fine on 1000 calories which is ridiculous, I can see it getting lower and lower - a week or so ago when we spoke she told me it was 1200 calories. I'm scared for her but she doesn't want help from anyone. I don't know how I can make her eat.
Her relationship is rocky at the moment, she isn't happy with the boyfriend.. that's a whole other issue. I don't think he would be able to support her to the extent that she needs it right now.
I don't know if IP is an option - we can't afford private, and the NHS is so stretched as it is that IP hasn't been mentioned by the GP. I asked about IP a number of times, and have always been told that she is 'too stable' to require IP and the waiting lists are incredibly long. It's a vicious position - she is too unhealthy to function, but not unhealthy enough to get the help she needs.   
tina72

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Reply with quote  #6 
So if she was never above 49 since she was 14 she was never WR in my eyes. No wonder ED is still there.
So if you have no option to help her yourself (I see that is impossible with you having your own family) what about your parents? Could she go home for a semester?
If you wait, it will go further down the rabbit hole. Now she eats 1000, then 800, then 500. She will stop to drink and go to ER, if someone finds her. That is hard to say but that will happen. So what options do you have? Can you do anything while she is with you at christmas break? Can you get her to ER than?
IP waiting lists are long and it is a common thing that patients are considered to be "not sick enough for help". Getting her to ER might accelerate that. In our case there was a waiting list but when we brought her to ER there were suddenly emergency places on that list...
She needs help. She cannot do it on her own. She doesn´t see that she is sick and she doesn´t want to get better. That is part of the disease.
Tina72
moonshine

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Reply with quote  #7 
Yes I don't believe she was ever fully weight restored - I vaguely remember the doctors saying that pre ED she was around 52kg, although obviously that was at the age of 14 so her WR weight is going to be higher even though she's the same height. In terms of weight, the 'target' given by the doctors has been BMI 18.5 which I have always argued is not sensible. Unfortunately she is adamant that she won't accept anything higher. It's a constant battle.
Our mother passed away a few years ago, and her father is living in Canada now. We don't have a lot of family, me and her are so close because we're all each other has now... 
I plan on doing everything I can to get her to eat over the Christmas holidays... I may be able to persuade her to the ER but I don't know what they'll do with her - she eats and drinks, she just obviously doesn't get the calories in. Surely they'll only act if her obs are bad?
She is losing weight rather rapidly and I'm counting down the days until she comes home. You're right, she doesn't accept that she is ill and she doesn't want anyone to help her. I'm hoping she will let me in. 
Foodsupport_AUS

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Reply with quote  #8 
I am sorry that your step sister continues to struggle so much with her illness. It does sound as though she is at significant risk of medical instability from her eating disorder. The severe vitamin D deficiency is often a part of this, as is her low resting heart rate and continued weight loss. It is difficult given she is of legal majority to insist she gets treatment and it sounds as though you don't have any financial leverage either. It is important to know that even though medical practitioners cannot share information with you without permission, you can share with them you concerns about your sister's situation, just as you can also share those concerns with her father. 

Compulsory treatment in the UK seems to be more frequent than in some other countries, given the number of children on the forum I have heard receiving treatment orders compared with other countries. This may be an option for your sister with her rapidly deteriorating health. 

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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.
moonshine

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Reply with quote  #9 
I don't know what I can do to help her... should I demand she go to the ER or something?
I've picked up a temporary registration form for the GP here in the hope that I can get her an appointment there for when she's home... she tried to arrange a check up at the GP with uni but they have nothing available before she comes home next weekend.
Foodsupport_AUS

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Reply with quote  #10 
If she is going to go to the ER for assessment she would need to take copy of some clear guidelines for assessment, remembering that many ER doctors have limited ED experience. Ideally I would recommend you go with her. Medical instability can often be downplayed until very late in the piece. If she is losing weight rapidly then that is a red flag even if her weight currently is not critically low. 
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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.
tina72

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Reply with quote  #11 
Hi moonshine,
maybe it is a good idea to start to get her to your GP. Can you contact him/her first without your sister?
Try to make her eat something when she is with you with compassion and love. Do not argue with her or blame her. Tell her you love her and that you are afraid to lose her. Try to add cream and butter and canola oil whereever is possible. Can you prepare some food for the fridge before she is arriving so she will not see what you did put in there? You can freeze even the smoothies (healthy looking, do them with fruits and vegetables and add 100 ml canola oil to 400-500 ml fruit) and put them quickly into the blender after thawing.Take big plates and try to do most calories on a small footprint. If necessary lie about what is in there. Every 100 g you get onto her will help.

A target of BMI 18,5 is ridiculous with ED. But that is a common mistake at hospitals and "professionals": they think if she is not underweight in the eyes of medicin than there is no ED. Would you say to an alcoholic he is clean just by drinking nothing for some time? To be healthy it is needed to get her WR and see a change in behaviour. State, not weight. I don´t know if anybody here saw a change below BMI 20. Most had to get much heigher.
You wont stop that battle without WR. No way.

Tina72

moonshine

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Reply with quote  #12 
I've got the temporary registration form for the doctor and I can't fill it in on her behalf as it requires her signature - which means that S won't be able to sign it until she's home next week. I doubt the GP will have any appointments before New Year, but if there's a chance then I'll take a shot. I don't know if she could book in for an emergency appointment or if this even qualifies as an emergency, her GP at uni doesn't seem fussed.. writing this makes me think that actually, she does need an emergency appointment, the GP at uni probably doesn't know what he's doing or how to deal with anorexia! 
I don't know if she will eat what I make her. She has told me she doesn't want to eat what I cook, she wants to 'do her own thing' with food. I know it's a bad idea but I don't know how I can persuade her otherwise. She is petrified about Christmas and the food that will be around. I am scared for her. Today she told me that this time (in her relapse/recovery) she has decided that she won't eat what she doesn't want to eat until her motivation returns. She said that this summer she suddenly had motivation to eat and recover, so she did, and now she has no motivation to put the effort in to recovery. Can I change this? Can I make her eat? She is determined to lose weight and she seems to think she will reach a point where she'll change her mind. 
melstevUK

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Reply with quote  #13 
moonshine,

I am sorry for what you and your sister are going through.  The less she eats, the weaker she will become and there will be a rapid spiral down.

Do you know which ED service your sister has been referred to?  I would phone them up and explain how serious the situation is with your sister and ask if you can get her an urgent referral before the Christmas holidays.  They may try and fob you off saying that they don't have to speak to you because it is a mental health issue - don't be put off.  Tell them that all you are doing is checking that the referral has gone through, give them your sister's name and date of birth, check that they have received the referral and ask for it to be speeded up.  If it has not arrived with them, phone the university surgery and ask to speak to a GP about your sister.  You are only asking to pass on information - which you have a right to do.  Explain how much further she has gone downhill and request their support for getting the referral put through urgently.  Appointments will always be found sooner when they realise how much danger a patient is in.

You cannot leave this situation to continue until January - your sister will spiral down very quickly at this rate and the more weight she loses the more difficult it will be to bring herself back up.  Right now she sounds as if she is close to requiring hospitalisation and better now than her being taken in at the point of collapse.  

Please act now rather than wait.

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Kali

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Reply with quote  #14 
Hi Moonshine,

What a wonderful sister you are. 

It sounds as though:
Your sister is very stressed by the workload at university.
She is not eating enough.

Is there any reason she couldn't take time off to work on her health?
Based on the length of her illness and the stress it is putting on her family, do you think it is possible for her to go inpatient?

It sounds as though she really could benefit from a situation where there are 3 meals a day on the table and expectations that she will be able to eat them and intensive treatment to accompany that process, and that is going to be difficult for anyone to help her with that in the situation she is in now and with your family situation.

Can you attend her appointments with her? Hopefully, she will allow you to accompany her. Be as persistent as you can in navigating the medical system.

Kali



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AUSSIEedfamily

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Reply with quote  #15 
Dear moonshine,

I wonder if you used the Feed Your Instinct website http://www.feedyourinstinct.com.au/ and do the full check list and then get the print out and provide that to the GP it might alert the GP to what they dont know and provide you with professional/clinical report that any GP would be silly to ignore. Its an official website of an Australian Government's Eating Disorder team CEED http://www.ceed.org.au/


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mid73

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Reply with quote  #16 
Hi. I believe you’re in the UK? I would sincerely hope that Universities and especially GPs we’re sitting up and taking notice of their responsibilities given the high profile given to the tragic case of Averil Hart that was featured on the BBC this week. Your sister needs help and you are right to think it’s an emergency. It can’t wait.
melstevUK

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Reply with quote  #17 
Absolutely mid73.

This situation cannot wait until the sister comes home.

Moonshine, please contact the university or the eating disorder service and ask for an urgent referral.  Your sister is way too ill to pull this back herself now.

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Kali

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Reply with quote  #18 

Hi Moonshine,

I'm glad your sister is coming home next week and you will be able to help her. Are you able to scan in or download the registration form document for the GP you need your sister to sign, email it to her, have her sign it today and then send it back to you? Or fax it up to her and have her sign and fax it back? Or can you just go ahead and make the appointment now and have her sign when she gets home? (not sure how the system works over there)

IMO I think she qualifies as an emergency/urgent appointment from what you are describing. 

Thinking of you. Be strong.

Kali


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melstevUK

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Reply with quote  #19 
moonshine,

I see a week has gone by since you first posted.  As your stepsister is coming home to you - it would be worth finding out about your local ed services and what IP facilities they use.   The more you are prepared for making arrangements, the easier it will be.  

It sounds to me as if your sister would be better in an IP setting, at least for a few weeks - and it sounds as if she will be close to meeting the criteria.  Noone wants a family member in hospital at Christmas, but having to be responsible for your sister with an extremely difficult illness to manage at home when things are critical, as well as children, sounds like a big ask.  Emotions are often high at this time of the year - the excesses of food are challenging for eating disorder patients and if she could get the support of an IP team and you could visit, that would be a much better arrangement.  

I agree with Kali that if you can get her signature in at the surgery now, the better it will be.  

She is lucky to have you - but also, you should not have to prove yourself as superwoman when faced with the severity of her illness.  IP places will be found when patients are in a critical state.  You may still wish her to go to her own university GP to get her blood pressure and heart rate checked - or maybe you can persuade her to come home straight away, rather than waiting another week?



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moonshine

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Reply with quote  #20 
Melstev - I agree, she needs IP before she gets to an even more critical stage. I live in Hampshire, I know the adult outpatient ED services that she saw before she left for uni had a massive waiting list and strictly only took GP referrals... the whole process took months. I don't know what the local IP unit is here but I am aware through friends that IP beds are near impossible to get, lately services are searching all over the country to find beds for the patients. It's a postcode lottery. As for support where S is at uni in Devon... it's a bit different. Services are split into the EDS and SEDCAS.
The GP referred her to the EDS which are actually a charity who provide therapy interventions. SEDCAS are the only NHS organisation there, but I believe they only take referrals of patients under a BMI of 15, through a community mental health team - CMHT. As of yesterday, S's BMI is 16, and she doesn't have a CMHT. I have phoned the uni and arranged to speak with someone in their student support department on Wednesday morning - that's the best they could offer me, despite me kicking up a fuss! They won't discuss any details about her in particular but as long as I make them aware then hopefully they will intervene.

Kali - She is refusing to sign it until she's home, she told me to stop being overdramatic (!) and then denied that she needs any help at all. I don't know if she could take time off uni without deferring a year - her course is a healthcare course that is NHS funded and it is extremely intense. Maybe she would be able to defer, but I would have one heck of a job
trying to persuade her too... I will do my best to get her an urgent appointment.

mid73 - I did read about that case. Thank you for reminding me of it, I will definitely mention it when I speak to the uni.

Aussie - thank you for the link, it looks very useful and I will certainly be taking it to the GP.
melstevUK

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Reply with quote  #21 
monshine,

Denying the seriousness of the situation is all part of the illness.  I suggest you try and persuade her to go and see her personal tutor with a view to taking some time out.  Staff are usually very accommodating around illness and re-jigging placements or assignments to try and keep someone in the same year.

My d did a child nursing degree and when she needed to go into hospital for a short period because she knew she was slipping backwards - her tutor was glad she had come forward and said that if she was going to be a nurse, she needed to be able to prioritise her own health at times.

The tutor would be sympathetic and could maybe have some influence in getting better help.  Please ask your sister to go and speak to her tutor.  This will formalise any absence and allow her more time for completing assignments.

And don't let the shortage of beds be your concern - if your sister needs an IP placement, the health authority will have to go flat out to find a bed somewhere.

moonshine,

I have just looked up SEDCAS to see what it stands for.  I suggest you give them a ring and explain the situation and ask how you can facilitate a referral.  Your sister will probably be down to a bmi of 15 if she stays at uni another week.  If you can persuade them to see your sister, they will be ready for a referral from your GP.  Keep trying to persuade your sister to sign the form she needs to sign now to get an immediate appointment.

Keep trying to set everything up to get her the help immediately when she comes home.  She should not be under a charity for some kind of therapeutic work - she needs to be under NHS specialist services right now.  I hope that SEDCAS are helpful.



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