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goblin

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Reply with quote  #1 
My d (just turned 14) started restricting food in March.  It was insidious and became noticeable in April/May.  I tried to encourage her to eat more and by the end of May realised this was not working so made and appointment with GP.  A swift referral was made to CAMHS and we were seen 2 weeks ago for an initial assessment where they said she had an "Emerging Eating Disorder". She has been listed as Priority for allocation to begin FBT but we have yet to hear anything.
Unfortunately, my daughter has really focussed on the "emerging" part of this and denies that there is a problem.

At what point does an "Emerging" ED become an actual/active ED?

Just to give a wee bit background - for the past 6 weeks, I have not been able to get her to eat more than 600 calories per day, often less.  I have bought and read the New Maudsley and Eva Musby books and have been reading this forum several times per day.  I am trying and failing miserably to implement 3 meals and snacks per day/ Magic Plate/ LSUYE and am regularly and increasingly, met with quiet,persistent refusal of all foods.  When she does eat, she will hit and punch herself to the extent that she has significant bruising all over her thighs and lumps on her head.

She cannot see that there is a problem and if I try to explain that the disorder is affecting her thinking, she replies that she doesn't have one and it is "only" emerging and "it'll be fine".

I am at the end of my tether.  I am an only parent ( husband died when she was 3) and while I am used to getting on with parenting on my own, I am finding this ridiculously hard.
meadow

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Reply with quote  #2 
Hi goblin, so sad that you need to be here, but you will get fantastic support.

Without knowing all the details about your D, it sounds as though CAMHS haven't helped you by using the word 'emerging' (and I am a CAMHS clinician myself as well as a mum of a child with AN). In a sense it doesn't matter what it's called because the treatment will be the same (you already know this), but out of interest does she meet all the criteria for anorexia? I can send them to you if you don't have them. I'd say it's the ED itself that's arguing the point that it's not yet an ED, but maybe it will still help your daughter to actually get told that's what it is. On the other hand, she'll deny there's a problem even if/when she does get a more formal label, because that's the nature of anorexia. It's a horrible, evil illness.

Refeeding is incredibly hard work. One of the most difficult things you'll ever do, but the wonderful people here can spur you on. Have you got any friends or family who can help out? If you work, is there the option of going on leave for a while? Is your D eating at school? Is she exercising?

You can look up my posts from around Dec where I got loads of amazing advice about how to get the calories in.

Thinking of you, keep posting x

meadow

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Reply with quote  #3 
Ps my daughter's ED was also only 'emerging' when we got referred to CAMHS, but she was very clearly physically and psychologically unwell. The good thing to remember is that because you've spotted it so early, it won't be really entrenched.

NELLY_UK

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Reply with quote  #4 
Thats a new one on me - emerging - that means they can see it, so its there. I agree with the above, it doesnt matter what they call
It the treatment is three meals and three snacks to regain 2kg a week roughly until weight is restored plus a. Bit for growth. You are chasing a moving target at that age.
This is where you can move fast and firm and dont let it become entrenched.
You know your daughter best and you are with her 24/7 so you are the chief of her treatment team. Remember that if camhs say something that jangles within you again. You are more likely to be right especially as you will get great advice on here.

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NELLY D 18 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. Bulimia treatmentis in the dark ages in West Sussex.
melstevUK

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Reply with quote  #5 
goblin,

Welcome to the forum.  Console yourself that you have found the very best website on the internet to get the information you need about eating disorders. That is the overriding message to take away this evening.

I am - I really don't have the words to describe how I feel - sad beyond belief that this terrible illness has taken a hold.  Confident - because with your love and the support of this website your d will recover.  

I am going to spell out the reality of the path that lies ahead for you and your d so that you can give yourself choices.  You are going to have to rely on local services and that has its advantages and disadvantages.  As your d is down to 600 calories a day, you are likely to be at a stage whereby you cannot see your d ever being able to make increases without outside help.  You are likely to be scared beyond anything you have hitherto imagined - but there are parents here who will make you feel cared for, supported and safe in what you are going through right now.  If your d eats only 600 calories for even a few weeks - she is likely to need hospitalisation.  Do not wait for any appointment - keep monitoring her and phoning because she is going to be very ill in a short space of time.  Keep the GP on side and in the know.

If you want to ensure your d gets a full recovery and turn around within her teenage years - you are going to have to ensure that she eats way more than you can ever imagine and that you ensure she puts on weight at a much higher level than your local services will demand and feel is 'safe'.  That is going to be a major battle and as you are a single parent you are going to have a huge struggle on your hands, even with successful FBT.  Do you have anyone close by, friends or family members, who you can call on to help you in this battle?

Your d is fully anorexic and in the capture of this horrendous illness - don't let any professional tell you about 'emerging eating disorder'.  The illness is now very much there and has taken its hold.  There are no half measures, noone is to blame, this is now it happens.  Right now she is very sick.

If you can get through to your d that she is a serious and life threatening illness but you will do everything in your power to help her fight it - then you need to get a meal plan in place that will quickly take your d up to over 2000 calories a day over the next few weeks.  She will fight and protest but if you can stay the course and stand up to her and set up a meal plan which includes three meals and three snacks, you might be able to achieve this by sitting her down with you and fighting out over the plan what gets put into each meal and snack.  Set up a seven day six box weekly plan and steel yourself with filling it.  Think how you are going to get to 2000 calories a day, increasing by 200 calories  a day.  You might get her to take half a digestive biscuit in one box for a snack but then you can move that up to a whole biscuit. 

This is the reality of what you can achieve.  600 calories is nothing - and her weight will be flying off her.  The first thing is to stop the weight going off even more.  Get scales and weigh her regularly until you know you have stopped the weight loss.  The reality - and I have been observing what happens to patients and reading parent stories for nearly ten years now - is that rapid recoveries simply do not happen.  Unless you push for a huge huge weight gain in these teenage years, and get your d onto her original developmental track (which we tend not to be aware of in the UK) and push her onto a much higher weight than the clinicians think is necessary - you are going to be looking at a very long term recovery track.

Use whatever it takes to set up a meal plan for your d - don't expect understanding or an appreciation of logic or how sick she is.  Just try and get a meal plan in place which relies on her total compliance and get her to accept that you understand this illness and what is needed - which is that she needs to start eating what you says she needs to eat, starting now. 

Come back to us and people will be here to support you - the system will not do that with the urgency and with the support which is needed,  This is why I am replying to try and get you to understand the seriousness of the situation and to urge you to take whatever action you can right now.

Hugs.  We are there for you.



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Torie

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Reply with quote  #6 
Hi goblin - So sorry you needed to join us here.

I think it is pretty weird that they called it "an emerging eating disorder."  Having never heard the phrase, I googled it, and I still don't see anyone legit using that phrase.  (Well, they do use it, but in a different sense, as in "x,y,z are symptoms of a new, emerging eating disorder that affects men.")

Of course, we aren't doctors so we can't diagnose (especially in cyberspace), but it sure as heck sounds like your d has AN.  Gotta say, they seem to also have an unusual understanding of the word "Priority" if it has been several weeks and you haven't heard back from them.

I would be calling CAMHS to insist that she be seen asap. 

Meadow is right that in a sense it doesn't matter what they call it; your d will almost certainly refuse to take it seriously anyway.  That's one of the features of the illness - most sufferers are unable to recognize that they have a problem even up to an including when they are so ill that they need hospitalization.  Since she is irrational about food and eating, there's nothing to be gained by trying to have a rational conversation with her about the diagnosis.  

 This vile illness is the worst.  But you and your d will get through it, and we are here to help.  Please feel free to ask all the questions you like. xx

-Torie

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mjkz

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Reply with quote  #7 
I'd say you are past the emerging part and arrived at the eating disorder.  Like others said before me, the treatment is the same and also the denial.  My daughter to this day thinks the problem was all me.
tina72

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Reply with quote  #8 
Hi goblin,
sorry to meet you here. Your d has a horrible disease but you will find a lot of help here.

We had a similar problem: the clinicians told our d in hospital that her ED was not so bad as that of the other girls there who had a lower BMI. That´s stupid and wrong. And it told her AN that she must eat less to get in competition with the other girls ;(

But whatever they tell it: you only have the same solution: FBT. Your d will deny to have a problem anyway, that´s ED. You should not wait any longer. Time is a enemy. As long as you wait as worse it would get. 600 cal is much to low. You will see more pounds just flying away...
Try to start FBT as soon as possible. Try to get out of work or find a family member or a friend to help you. You will need all the help you can get in the first 1-2 months. You should not stand this on your own. The beginning is very hard, but if you stay on path you will soon see progress. The first weeks are difficult and you need somebody to take over if you are on a down point.

There is no "emerging" ED. You have an ED or you have not. There is even no "emerging" pregnancy...[wink] Tell that CAMHS and insist on starting FBT.

Tina72
OneToughMomma

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Reply with quote  #9 
Dear goblin,

Welcome.  You must be absolutely overwhelmed with advice (and all of it good!), and maybe you are wondering where to start? May I present OTM's bullet-point starter list sort of in order from most important?  This is just my opinion, but it might help you to focus a bit.

  • With the amount of calories your d is consuming, I'd say that medical monitoring is imperative.  If she were mine I'd make sure her orthostatic blood pressure and heart rate were carefully watched.  You might want to contact your GP to ensure her safety.
  • Another concern would be her self harm (SH) tendencies.  This is not really something the Tough family experienced, so others might be better to give you advice. I do know that we hid all medication, sharp objects, etc.
  • Next on my list would be getting her into effective treatment, and getting myself some support. I'd be ringing CHAMS daily.
  • It would be great if you could get some more nutrition into her.  If you could tell us about those 600 cal it might be helpful.  Maybe we can build things up from where she is now. What is she eating?  How is it presented?  Who prepares it?
  • I would stop trying to explain to her that she is ill. Save your energy for a battle you can win. My d was in hospital with RAN written all over everything and she still didn't 'get' it. From everything I've seen, the patient will not be able to see they are sick until after they are well. Similarly, IMO, negotiating a meal plan with an AN kid is like trying to nail down jelly. It's just not useful that I've seen.


So, goblin,  you are doing a great job so far.  We can be your online support team and help you if you let us.

xoOTM

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D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
tina72

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Reply with quote  #10 
Hi goblin,
I might add something about self harm. We had that problem in hospital (yes!) with cutting into her arms and stomach. Our d used a scissors and a paper clip. The staff in hospital didn´t even recognize it.

At home you must hide everything which you think can be used. Lock it away if possible. You will oversee something, but you will take away most of it. Take away all door rooms keys so that she cannot lock herself in somewhere. If she hit herself at mealtimes try to cover her head (for example with a bicycle helmet). Tell her she has to wear it unless she stops hitting her head. If she uses the table to hit herself try to serve the meal somewhere without table, maybe using a tray in front of TV.
The ED might find ways to continue self harm. Its important that you recognize it and stop it, even if that means you are doing "strange things"...[wink] Its not important HOW you stop it but THAT YOU DO.

Ask questions, here are a lot of people who have been through the same. It helped me a lot not to feel lonesome and helpless anymore. You are not alone. Lots of families haven been through this and won the battle against ED. You can do this!
Tina72
Foodsupport_AUS

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Reply with quote  #11 
Welcome to the forum. Sorry that you have had to find your way here. The term emerging eating disorder is not officially recognised, and like Torie I googled the term to see who else was using it. Interestingly I came across this website http://www.vickisclinic.com/early-intervention-in-eating-disorders.html which is from a psychologist who has done the official FBT training. Notably she comments that treatment is the same, but she also refers to not meeting criteria of an eating disorder. The transition can be very rapid, my D went from not meeting eating disorder criteria to hospitalisation critically ill within two months, many of us can tell the same story. 

Like others I would encourage you to be the squeaky wheel, letting them know your daughter is deteriorating by the day. 

When your daughter debates whether or not there is a problem, try not to get into the argument. This is typical ED behaviour, and debating about whether she is sick or not unfortunately will get you nowhere. We are seven years into this, and although my D admits she has an illness, she cannot see still that she is underweight.

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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.
maria74

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Reply with quote  #12 
Hi goblin

You have some great advice above on the practicalities and reality of your daughter's situation.

We have had the same experience.  My 12 year old daughter was diagnosed a year ago by non-specialist CAMHS as having an emerging eating disorder.  They referred her to the eating disorder team who said they couldn't see her as she wasn't under-weight enough (she was 94% weight for height then).  We then went on a waiting list for general CAMHS which we never reached the top of, with her weight and height being monitored monthly by her GP.

Fast forward to October 2016 and her weight for height dropped to 84%.  Another referral was made to the eating disorders team, she was assessed by 2 CAMHS nurses within a week and treatment started the week after.  She has been treated ever since with the Maudsley approach and her nurse is great so I am happy that she is getting the help she needs. We also get advice and support to help her at home BUT, she has never been formally diagnosed with an eating disorder/anorexia even though they are clearly treating her for that.  Her GP verbally told me that she does have an ED but they are loathe to formally diagnose it at a young age and it is generally done by a psychiatrist.  There is a psychiatrist and a doctor at the clinic but they, in my experience, advise from behind the scenes.

I found this very difficult at the start.  We had the same conversations with my daughter until I told her about what the GP has said.  I also worried about whether I had the right to say she has an ED if for example she was admitted to hospital or whether I would be labelled as an anxious parent.  As time has gone on, I have worried less, taken the advice from the clinic, this forum and Eva Musby's and Janet Treasure's books, and just told relevant bodies (school etc) that she has an ED and shown them the initialletter from the clinic with their findings from the assessment.  No-one has ever questioned it.

It sounds as though your daughter is in a similar situation.  If she is being referred for FBT it sounds as though the professionals believe it to be an ED and as everyone else has suggested, I would treat it as such if I were you.  I'm not sure if your daughter is underweight (yet) and she shouldn't have to wait until she is to get help, but if she is on a waiting list, keep phoning them and if her weight and'/or height changes, tell them immediately and keep updating them!

I am sorry you are here and I too found/find it incredibly hard but you do cope - just take all the help you can get and ask for it if necessary. xx
LauraCollins_US

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Reply with quote  #13 
"Emerging" is not a technical term I've ever heard clinically. I would think of any eating disorder early signs as more like early cancer diagnosis, or diabetes: an opportunity to do the early intervention that keeps an eating disorder from doing what it inevitably will do, which is ruin a young person's future and possibly take their life. It's as urgent as a Stage 1 cancer diagnosis.

It's hard at first when we are trying to explain TO the person with the eating disorder what is going on and why we need to take the steps we do. It helps when we realize, as parents, that it actually doesn't matter what they understand or even that they cooperate. We have to "do the thinking" for them until they are free of the mental illness blinding them and confusing them. We are free as the parents to not have to convince or explain, only to support and be clear and strong. We don't need them to agree, and we don't need to worry about what words they fix on.

"emerging" eating disorder is a time for early and effective intervention!

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cjac16

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Reply with quote  #14 
Really sorry you have had to come to this site but it really is the best place in the world for help and support.  I have also never heard the term "emerging eating disorder".  It sounds like a term the NHS have introduced perhaps to replace the term EDNOS or another way to not have to meet their obligations of seeing somebody with an ED within a specified timescale.   I also agree that there is no such thing as an emerging eating disorder - You either have on or not.  My d didn't meet the criteria initially for AN as her weight was not low enough.  It soon reached that criteria.  I would follow the advise on this site regarding refeeding.  I dread to think where we would be without this place.  I hope you get the help from CAMHS soon.
evamusby_UK

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Reply with quote  #15 
Dear Goblin, I echo what everyone else has said. 

On the 'plus' side, they've decided she's a "Priority" and they've talked of FBT treatment. So it sounds like they have recognised the urgency of your case, even though they haven't realised how awful it is to use a word like "emerging" in front of your daughter. (I hope you tell them, so they learn).

You used the word "wee" and FBT, so I wonder if you're in Scotland, like me. If so, I can point you to more info/groups - just ask on this thread or feel free to get in touch with me direct.

I hope you are feeling some support from us here and that although you've been at the end of your tether, you are getting a boost of strength. I hope that the support here will help you make progress by yourself while you're waiting for the clinicians to support you -- and if they're really doing FBT you will find most probably find it a huge relief. I also would suggest you phone the service and write every day or so, with the kind of facts you've described to us here.







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Eva Musby, mother, author, produces lots of resources for parents at http://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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goblin

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Reply with quote  #16 
Thank you so much for all your replies.  I was at a very low ebb and it really helped give me a boost.

So, to update - 

I phoned CAMHS and spoke with the psychologist who had been present at the initial assessment.  She said she had been planning to call me this week to arrange to meet next week and thereafter on a weekly basis. All systems go on the CAMHS front!  We also saw a dietitian at CAMHS a few days ago for an assessment and she has arranged to see me on my own in a fortnight.

I raised the "Emerging" issue with the psychologist who explained that as her BMI was not yet considered low enough, it could not officially be diagnosed as anorexia nervosa but she was adamant that they would be treating it as such and also acknowledged that she had lost a further 1.5kg since her weight was taken by the GP.

I am getting as many hidden calories into her as I possibly can and this will hopefully be easier over the the next 6 weeks as this is the last day of term before the summer holidays. (I'm in Scotland).  It is an uphill battle but I am adopting a "Fake it 'til you Make it" approach.  
Unfortunately we are going on holiday for a week next week which will make things more difficult but we will be staying in a self catering villa so at least I can continue to provide food and not rely on eating out.
tina72

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Reply with quote  #17 
Hi goblin,
that sounds good. Its good that her BMI is not sooo low, so you will not need so many time to gain weight again. Try to stop the weight loss until you get help.
We got the last missing kilos with smoothies. I made them of fruit and vegetable only so they look and smell "light" and "healthy" (I hate that word) and I added oil (best worked rapeseed oil). You can add up to 100 ml to a 500 ml smoothie without tasting anything. So you get another 900-1000 calories in her with just one drink. 2 or 3 a day will help a lot. If you have a smoothie blender, try to take it with you on holiday (but hide the oil [biggrin]).
Holidays can be difficult at the beginning but if its only a week you must try it. If your partner is with you, it might be a good start to find together and get on "same page". Its easier when two people are there for meals at the beginning so you can take some time off if you need.
Give us an update when you are back!
Tina72
NELLY_UK

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Reply with quote  #18 
Goblin, you may wish to read the new NICE guidelines for treatment of eating disorders in the Uk. I posted them on their own thread and they are also available on the b-eat website.
Your local team should be familiar with the revisions which include BMI no longer being the key/ block to diagnosis and treatment. Forwarned is forearmed.
Glad you have your Feastie resilience with you now. This site is literally a lifesaver xxx

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NELLY D 18 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. Bulimia treatmentis in the dark ages in West Sussex.
evamusby_UK

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Reply with quote  #19 
It's sounding good, Goblin!
Some Scotland info here if you ever want it.

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Eva Musby, mother, author, produces lots of resources for parents at http://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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melstevUK

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Reply with quote  #20 
Hi Goblin,

Could you email the eating disorder service/CAMHS you are under?

I am the Secretary of SEDIG (Scottish Eating Disorders Interest Group) - a rather antiquated name but we are Scotland's national eating disorder charity and are currently working to promote this.  Please think about joining the charity as there is a carers' conference every year in March which is highly thought of and gives carers the opportunity to meet up with other parents and families affected by eating disorders in Scotland.

However, the initial assessment and the fact that your d was only eating 600 calories a day at the point of referral should really have triggered a more rapid response and the fact that she has lost 1.5kg is not acceptable in terms of rapid intervention and assessment.

I can appreciate that it is not appropriate to 'name and shame' here - and we are not in the business of criticising anyone - but it is really important that we assess what is not happening that needs to happen, if Scotland is to improve its services.
Scotland's clinicians have, I believe, all been trained up in FBT for adolescent patients with anorexia nervosa - but if dithering around diagnosis is not getting interventions in place which need to be put in place, then we have to highlight this.

I am really pleased that there has been recognition of the urgency of your d's case.  It is really important that you do what you can to prevent any further weight loss and start getting weight going back on.  I am also really glad that you found FEAST!




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