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floating
D may be going to ED unit

Anyone have positive opinions/experiences please


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HillBilly
Butterfly,
Melstev and evamusby may have knowledge of the Priory in Glasgow, though I don't think either have had direct experience. Try emailing them direct.
It's got to be better than what your D has had for the last few months I'm sure.
HillBilly (formerly registered June 2012 under another name)
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PhysMum_UK

My D was in the Glasgow Priory for several months in 2006, and it is still run by the same consultant.

I will reply properly tonight but if you have any specific questions pop them here and I will answer them (or try too). We still have all the booklets etc.

Thinking of you all and sending my very best wishes. 

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floating
Just an over view of the treatment

Do they NG feed?
Have a good reputation/outcomes?
Staff good?
Strict?
one to one nursing?

Any info!!!
x


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OneToughMomma
I've got no knowledge here but just let me say it's about bloody time!

Warmest regards,

XoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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floating
ha ha!!!

This is by no means definite...........as nothing has been on this journey with the backward........

xx



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melstevUK
The Priory Group is similar to the Huntercombe Group - where my own d was placed - and they operate pretty much in the same way.  They are very successful at getting patients weight restored but most of the specialist hospitals have pretty useless discharge arrangements.  They have a habit of giving the meal plan to the patient - who then takes charge of eating because 'control' has not moved from the hospital to the parents/carers, which means that they illness gets the upper hand again. 

If she goes to any IP specialist facility in the UK, they are generally very good at treating ed patients.  I have been told that it is the patients who exercise compulsively who can be the most difficult to monitor.  Bulimia patients can be very skilled in purging quickly and unobserved but all staff are clued up to the various habits RAN patients have, e.g.smearing butter on the hair or arms. 
A patient will be put under observation if there is any concern that he/she is not adhering to the rules around eating.

I think you can be reassured that, if she goes to a specialist facility in the UK they will do all that is required to get her eating and get her weight up.  If she does not agree to having an ng tube fitted she would need to be sectioned, but if she accepts it willingly there is presumably no need.

I just wish your health authority would arrange for her transfer!  I will find someone else to email tomorrow - seeing as the guy responsible for patient safety in Eire didn't even reply.  Which is disgusting.
Believe you can and you're halfway there.
Theodore Roosevelt.
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floating
Hi everyone

Missed the support so much as I have not been able to get on my page her the we are flying out one it is blocked but realized I can get on this topic. Yipee

Well d is having a hard time as not happy to be under section but was so necessary to keep her there as we have been through so Mich to get her transfered that to walk out would have been a disaster

She has not needed ng feeding this far as if she does not complete the fortisips then she is told the ng WILL go in so fully co.pliant. has now started to have cereal twice a day and is on 2000cals which is great

Few concerns is the girls who ate there 3-6 months are still as thin as my d cannot figure this out? And some have gone home like this? Noe they ate all older in their 20's. Maybe they ate not there for WR....

Feel d is Noe safe but o am very dhut out and am not given any updates/info in fact not acknowledged as such just smiles

Is this how they work st adult ed units?

I thought i would be included somewhat as I have been previous. Worried that when I go homre will be kept totally out of the loop and from afar this will csise me a huge worry.

I tested the water on a day d would not let me visit and was passed around to 3 people and was only told she was OK. Would not reveal weight, state.

D has gained a kilo...
Aware the journey will be long but at least it is starting. D finding it difficult being g around so many others with ED as only ever met 2 girls previously and is very focused on them/comparing etc. But they ate lovely to her as she is the baby!!!

Her ed behavior where she puts her finger down her throat has worsened as her eyes roll and its like she is possessed very scary and upsetting for me

Thanks all xxx


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melstevUK
Butterfly,

Try asking her if she REALLY wants to be like them.  A lot of these patients in their 20s have been on a 'revolving door' basis for years and I think for many of them there is no plan for a total recovery.  Very sad.  Your d has a chance to have a life - keep her focused on recovery and a life outside thinking about her weight all the time.  Tell her that she would be a very boring person indeed if all she did was think about weight and nothing else.  At the moment her brain has been taken hostage by a horrid illness that stops her eating and looking after her body and physical health.  She has to learn that this has to take priority for now.
Does she have dreams about what she wants to do in the future?  Keep her focused on all the things she can do when she is well again and keep reminding her that comparing thinness is a waste of her time.  Does she have things to distract her?  Jigsaws can be soothing and I would expect some of the patients to be doing them. 
At least she is safe and has put on weight.  That is the first step of a long journey. 
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
Are the staff aware of the putting her finger down the throat?  If she is only doing it in front of you, you need to make them aware.  The staff would intervene to stop that behaviour.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
Hi Butterfly - So great to hear from you!!!!!

Also great to hear your d is eating and drinking more.  Is there a possibility she might sign paperwork allowing them to share medical information with you?

I've been thinking about you and your d all the time - I hope you are able to sleep better now that she is getting better care.  How far away from your home are you?

Hugs,

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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sk8r31
Hi Butterfly!

Really glad to hear of the weight gain for your d, and that she is compliant without need of the NG tube.

I can imagine how difficult it is not to see her much, and to be missing home, and the rest of your family too.

I'm surprised that visiting is only every 2nd day; wondering if you were able to pop in at least for a few minutes each evening?  As others mentioned, perhaps having an activity like a jigsaw or some other art/craft activity might allow the two of you to be close by, but without needing to talk much.  Just the reassurance of your presence and love.

Again, so happy she is in a place that can support her appropriately towards recovery.

Thinking of you, & sending warm support,
sk8r31
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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Psycho_Mom
Hi,

SO good to hear from you. 

Would your d sign a release of info form? Explain that it would help YOU to cope, that you have anxiety, too.

And if you can't come every day (that's a stupid and concerning rule, I agree) let's see....does your d have a phone? You could text her or call her? Or if no phone, you could leave her a card or note or gift when you visit, to be opened the following day?

Thinking of you,
best wishes
D diagnosed with EDNOS May 2013 at age 15, refed at home Aug 2013, since then symptoms gradually lessened and we retaught her how to feed and care for herself, including individual therapy, family skills DBT class, SSRI medication and relapse-prevention strategies. Anxiety was pre-existing and I believe she was sporadically restricting since about age 9. She now eats and behaves like any normal older teen, and is enjoying school, friends, sports, music and thinking about the future.
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HillBilly
Hi Butterfly,
It's so good to hear from you! I've been so concerned when we've not heard from you on the forum.
Sometimes there's too much of an assumption made in adult services about patient confidentiality but if your D is happy for you to be given information and for you to be involved, then have that put in writing in your Ds folder. If she had a physical illness there would be a friend or family member kept in the loop, so why not with a mental illness?! In fact, especially important with mental illness.
1kg increase in less than a fortnight is a good steady positive result.
Regarding the behaviours; we didn't have exactly this but still behaviours like someone possessed. I'm not sure of the best way to deal with them, whether it's addressing them or ignoring, I'm not sure.
Please back message me if you would like to meet with me on Thursday, earlier in the day better than late afternoon or evening.
Good to have you back!
Take care.
HillBilly (formerly registered June 2012 under another name)
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floating
Sorry just managed to get online

My poor girl is very poorly and has now been put on diazepan which is another added worry but her aanxiety is through the roof.

She is having a lot of melt downs and OCD behavior which is causing huge upset partic ularly the lifting her bottom off her seat and touching her stomach/squat that has escalated in repetition and in group therapy she is embarrassed in front of all the other girls. She said today another girl is intimidating her over it but she cannot stop

Also that she thinks she is mental and will neverr recovery as the other girls do not do all the ED behaviors she is doing and that she looks mad.....how heart breaking. O lord, she is crying most of the day, I am so worried and that horrid sticking her fingers down her throat obsessively has worsened. How can I make her understand she is not crazy and losing her grip??. And that others have OCD and ed behaviors too but you just cannot see them

I fly back home on Tues to attempt to go back to work after being off for 6 months altogether, how will i ever be able
to work and will life ever feel normal?. Guess I need therapy too.

On a big plus she had put on over a kilo a d I feel she is safe

And the staff will update me on her condition each Friday x


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NELLY_UK
Butterfly, you would be amazed at what full nutrition can do to change things. Of course it will take a very long time but thank heavens she is safe.
Thinking of you lots as we go through our own misery.
Yes you need therapy- get some if you can. Will the priory give you family therapy? Or is that too difficult because of the location?
I saw a girl who rolled her eyes and regurgitated her food whilst compulsively exercising. It took a long time - years, but she is young and almost over it all now.
You will need strength and resilience and hope. So therapy will maybe help. I hope so. My therapy is walking with a friend. Or reading.
Can you get your d to learn to knit? So therapeutic and it could help her when she comes home to have a calm purpose after meals. Just a thought.
Xxx
NELLY D 20 bulimic since age 12, diagnosed in 2011. 20 months useless CAMHs,7 months great IP, home March 14..... more useless CAMHs.now an adult & no MH services are involved. I reached the end of my tether, tied a knot in it and am hanging on. ED/Bulimia treatmentis in the dark ages in West Sussex.
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floating
Just read Sarah ravin blog, wow...it is so insightful. The bit where it says one should not expect motivation to change or any insight that they are ill till they are fully WR makes se se now and the fact it is not e en important is reassuring

Nellu she has crochet. Knitting, mindfulness colouri g books, puzzles, music etc etc but her brain is just not working at the moment as it did previously when distraction worked she is so entrenched and has no concentration unfortunately but in past distraction works very well

I have been following your story closely a d it just angers me that your d is in less than ineffective treatment, grrr
Crazy situation and I feel they are just letting you take all the flack and will continue to till you drop
They are the blinking health care professional and need to treat your D which at this stage needs to likely be IP to get on top of the behaviors. I hope something positive happens got you soon

Thinking and praying for you and D xxxx


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Iaminspired
Butterfly

I am so glad to hear from you!  And very glad your D is gaining.  I would expect her gagging behaviour to begin to vanish with considerable weight gain and WR.  Once brain healing begins, those things lessen.  Right now your D's brain is still in a starved state so both the odd behaviour and the poor cognition will probably be around for a while.

I am still sending you strength, prayers and <<<hugs>>>>.

Colleen
Colleen in Ontario

Single Mom to DD#1 (20), Autism Spectrum Disorder (diagnosed at 16 1/2), Generalized Anxiety Disorder, Social Anxiety, Panic Disorder
and DD#2 (17), In solid recovery from Restrictive AN, Managing Social Anxiety, Generalized Anxiety Disorder, Panic Disorder, ASD, finished with IP and FBT, successfully managing school and life

If, at the end of my days, I can say I saved the life of not only my child, but helped to save the life of someone else's child as well, then I have lived a good life.
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Torie
Hi Butterfly - So good to hear from you!!!

Surely you have heard us say "food is your medicine," and it is really amazing how much better they get when they have regained enough weight.  Of course, you have to wait to see what behaviors are left with wr, but keep your hopes up, because the medicine that is food can really do wonders.

Hang in there, and remember to take care of yourself.

Hugs,

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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floating
OMG i did not expect a miracle just a stepping stone to recover
I just cannot take this terror anymore.
Absolutely heartbroken as I leave my child on Tuesday in a worse state than we arrived.

She has been told on Friday she will be sectioned for 6 months next week

She is now on olanzapine and diazopan
After previously never being on any mdication yet her Ed behaviors and state is worse with them
She has lost weight last 2 weigh ins and not eaten today
Has been told for past few weeks she would be NG fed at each meal if she does not. Complete but this is never carried out

Her face is sunken, geez this is the sickest I have seen her both mentally and physically

She looks hopeless a d for the first time I am losing hope. Why o why is this happening.

I had such hope. Please God this situation changes i am terrified
This is like DA ja vu


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melstevUK
Butterfly,

What you are going through is truly heartbreaking.

"She has been told on Friday she will be sectioned for 6 months next week

She is now on olanzapine and diazopan
After previously never being on any mdication yet her Ed behaviors and state is worse with them
She has lost weight last 2 weigh ins and not eaten today
Has been told for past few weeks she would be NG fed at each meal if she does not. Complete but this is never carried out"

Have you been given this information by a nurse or by your d?  It will take a while for the olanzapine to 'kick in' but the diazepam usually acts quickly.  I cannot believe that she has been allowed to eat nothing - I am sure she would have been given meal replacement drinks.  Her distress is so extreme and she was so ill on arrival that it appears that it is taking time for the hospital to 'get going' with her.  It can take a while to get compliance and a routine going.  Have you spoken to d's key worker for more information about what is going on?
It is really scary to see your d so ill - but please speak to a member of staff to get their take on things.  I remember my d only had an ng tube in for around a day and I thought that this would be considered as total failure but the staff were happy that things had gone well and as expected.  They might not be seeing things as black as you feel they are.

Believe you can and you're halfway there.
Theodore Roosevelt.
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MarcellaUK
so terrifying for you, but she had got into such a state being left for so long before getting specialist help that it will take time for her to start to turn the ship around.

It's horrible that she needs a section, but it could be the very thing she needs. I don't know but very often units are not able to tube feed until the person is under section, and very often once the section is in place they don't need to tube feed - the poor sufferer needs any responsibility taken away from them so that they can stop fighting.

I pray for a safe journey for you back to Ireland and rest and recouperation for you when you are at home so that you can be there for your d for phone calls and visits and for the long term when she comes home
Fiona Marcella UK
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Jasmine1
Butterfly - hope you're ok - my heart goes out to you. You have been through terrible times and still are. I trained as a psych nurse many years ago (very rusty though and not working as a nurse now!) but I remember a section was used when a patient was a danger to themselves or others due to their mental impairment and it meant that treatment can be given with or without consent. It will be awful at first and I'm sure she will try and fight against it and not want it - but remember this is ED talking not her. They have to do what they can to save her and treat her whether she likes it or not. I know it is going to be horrendously tough for you both. But from what I understand from reading about other experiences with this - some patients look back later when they are well and of sound mind and say being sectioned ultimately saved them. She won't have the option to refuse meals, supplements or NG tube now - it will have to be given. And as we know food is medicine and her mental state will improve. It's sad it has come to this but I am also really hopeful that this might be what she needs. ED has been backed against the wall now and like it or not - she will get nourishment. Stay brave and strong too - and if there is support there for you - take it. Thinking of you
Daughter was age 11 when she started restricting Aug 2014, admitted to paed ward Dec 2014 for low BP, pulse rate and spent 3 weeks there. As they were about to NG tube her, she decided to eat again. After approx. 1.5 years on a meal plan and lots of toil, sweat and tears she is weight restored and has just been discharged from NHS care. It's been a very slow traumatic process but each day we are making progress.
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Doitagain
Butterfly - good to hear from you and I'm sorry things are so tough. It's scary indeed for you that your Ds ED is so strong right now. Please try to remember that it was getting worse at home too though - not better, and thank goodness she is inpatient as at this very low weight you were unilikely to have been able to cope at all at home. To put a positive spin on the section... This way you know that your funding is safe for six months and your D can't discharge herself whilst still desperately ill. I didn't want to go into it here but NHS/HSE do discharge too soon too often , and there is also a certain terror associated with having a very ill child inpatient and over 18 without a section as you are worried sick that they'll either be discharged for funding reasons or discharge themselves. My D was not sectioned but was given the straight choice - inpatient right now, as in this minute, no bag packed no toothbrush, nothing, or be sectioned. She chose to go in - not much of a choice really and I spent the next three months terrified she would try to check herself out. Remember too that at some point you can ask for the section to be lifted - but I am sure you are unlikely to want that so maybe brace yourself for the inevitable talk about "advocates" etc. ED patients under section do get a good amount of time out etc too , when they are better - it's not as draconian as it sounds I'm told.

The idea of sectioning is heartbreaking for any parent of a child as the idea lack of capacity is just awful. . But in the case of ED it really says that there is a "lack of capacity in relation to food". I think it might be helpful to remember that your daughter is very much there and capable but NOT and only not when it comes to eating and this strangeness and terrifying state is a side effect of that and that alone in most cases. I am sure they are doing the right thing - again I'll say that a very high percentage of inpatients everywhere are there under section because they are a danger to themselves through their Very distorted thinking on eating food and weight loss. When that is addressed you will see your daughters old self and capacity beginto shine though again . It's a painful journey to there no doubt though . It is very difficult with over 18. If you see my earlier posts you'll see my distress when my D did not make any progress for six weeks whilst inpatient and began to look even worse than when admitted. I get what you're feeling and send strength. The pressure my D put in me to take her home was unbearable at times. Six painful months later she is back to herself , albeit fragile but I keep telling myself it's early days. It's very early days for your D now. She'll come through it with your love and dedication and proper expertise . They will certainly have seen this before many times. She is so lucky to have you as a mother - you have done a great job.
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floating
Thanks for the messages

D is already under a 28 day section it will be extended by 6 months.
That is not my concern
I am just ready to fly home and horrified by her worsened state and cannot cope.
She was fully compliant for first 2 weeks as she usually is whether IP or at home then saw the loopholes and now losing weight and offered meal. Eating a little last 4 days then last 2 days barely anything then fortisips GI end but total refusal . the lack of nutrition has put her mental health in a worsened state. No NG placed, why????? She is sectioned

The diazepan which is high is having no effect no effect and I am hugely concerned as I have expressed as it is addictive after 2-4 weeks use and I feel this is just an added thing to deal with in the future

I am at my witz end. I would like her tubed that is why we are here as we know she cannot comply at this weight

I am so desperately upset. X


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