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

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mid73
My daughter was diagnosed September 2016 with AN. We tried 3 months of FBT at home which was hell and to cut a long story short she was then admitted to a great ED inpatient unit. After 3 months she was slightly over 100% weight for height and was discharged. For 2 years that weight was maintained it never increased but only fluctuated a pound up or down. She was weighed latterly every couple of months by CAMHS. She’s never engaged with anyone on any psychological treatment but managed to eat outside of the home and even on residential trips and not relapse. In February of this year, we were discharged by CAMHS as there was nothing more they could offer and I think we all thought that regular weighing maybe meaning she was fixated on not going above a certain weight. For a few months all was well. However since the summer after a couple of trips away from home AN is back with a vengeance. 7KG dropped. Persuaded her to be weighed at home but she won’t see GP or go back to CAMHS. She’s 17 now and it’s hard to force anything. She’s eating still and has maintained her weight this week. She’s totally hostile to any suggestions of increasing weight unsurprisingly!  I’m using what levers I have, mainly I won’t pay for any more driving lessons etc. 

I’ m posting this really as a warning to everyone, don’t stop monitoring. It was the threat of further IP if weight went down that obviously kept things on an even keel. Now that’s not there we’re stuck. I’ve spoken to CAMHS and if course whilst they’re happy to see her i can’t get her there. Once she becomes an adult I get the distinct impression Adult services in the U.K. are so stretched you have to be very poorly before a section or a bed is offered.
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sandie
Hi mid73
i am sorry that ED back. Good you have levers. May be worth considering contract.... there are some helpful templates out there. Xx
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tina72
I am also sorry that you are there again. And I think it is very good that you warn others as this is one of the most common mistakes to let the guards down too early and a lot of parents here at the moment have these problems with cahms.

As you might know my d was also 17 at first diagnose and best advice ever I got here was to get her WR asap before she turns 18 no matter how and that was best we could do for her. So if it is needed to stop paying for x or y do that. Make a contract and tell her what you will do for her and what she needs to do for that. You do not need to get her to cahms, in the end you know what to do now. For sure you will do everything that is needed to make her regain that lost weight no matter if she agrees or not. Weigh her blind at home and add all the good stuff to her food again.

I am so angry on your behalf, she was in such a good state and this was really unnecessary to happen when cahms would do their job.

RE driving lessons, when she already has started and likes to drive that could be a great leverage to use. We "paid" our d with driving lessons for every day she completed all meals. When she was WR we payed for the driving lisence and promised to buy her own (used) car when she maintains that weight and is compliant about letting us help her for 6 months. This car is our best friend now as she knows that first thing she would lose is her car key and she loves her car. Maybe you can use that too.
Keep feeding. There is light at the end of the tunnel.
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mid73
Thanks both. As you say Tina I know what I need to do, just not easy as they get older. I’ll keep on carrying on X
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Foodsupport_AUS
So sorry to hear that she has gone backwards. I can hardly believe how often I hear of CAMHS dropping services "because we can't do any more" which really means they are not better but we can't work out what to do. Even persisting can sometimes be the right way forward. We know you know what to do. Sending you strength to push forward again and achieve what is needed, likely more than that 7kg too. 
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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tina72
mid73 wrote:
Thanks both. As you say Tina I know what I need to do, just not easy as they get older. I’ll keep on carrying on X


It is not easy at all. But you do not need to go back to square one and you know a lot more about that disease now then then.
Please come here for help and for venting. Keep swimming, my friend, it will get better again.
Keep feeding. There is light at the end of the tunnel.
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kazi67
Hi mid73

oh yes hindsight 
if only we knew then what we know now and if we could turn back time 
but we can’t 
I feel your pain my d did the same thing loosing ALL the weight I had initially got on her plus MORE
my advice would be to use whatever you can to get her back into treatment 
does she live at home?
if so you can use that or as above driving lessons anything you pay for 
as once they start getting their financial independence it does get much harder

so whilst you can “get her on side” while she is dependent on you, that’s what I would do and that’s what we did 
the other thing is the illness becomes more engrained and really we need the professional support as it definately isn’t easy and we just find having a village keeping the ED at bay helps so much
Good luck x
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melstevUK
Mid73,

I am really sorry you have been let down by that early and careless discharge. 

If, on discharge, all adolescent services parted company with their ed patients with a lecture on the lines of
" Your weight will need to keep increasing right into your mid twenties. It will be a long time until your appetite ''kicks in'  and you start to be relaxed around eating again. In the meantime you need to work with your parent or parents to keep fighting the illness .If not you are going to be in its grip for the next ten years and it will ruin your life. We cannot stress enough the seriousness of the situation and the need for you to try and be open about it and ask for help when you need it '.   how much easier it would be for the poor families who are left fighting the illness on their own. 
It is all so wrong and badly handled by most clinicians.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Hendrixt
From my experience I can really see how easy it is to get discharged to early.
 
All throughout the treatment you feel as though you are being rushed along to the next stage prematurely. 

We’ve been weight restored for about a month now and I can’t count the number of times our therapist has used the word discharge but I push back every time. The first time the therapist used the word discharge I was gobsmacked and said don’t you think it’s a bit early to be talking about discharge when she is only just into the lower portion of her healthy weight range.  The therapist replied that all throughout the treatment you are working towards discharge and that’s why she mentioned it. 

The general impression the therapist  gives is that its all done now and we don’t have to worry anymore and everybody has done really well and we can relax. If you counter this argument she acts as though we are being over cautious. 

The therapist is constantly trying to persuade us that our D should not put on any more weight and that we should cut the snacks out etc as she does not buy into the concept of putting more weight on after weight recovered.  We have agreed to disagree on that but the therapist has warned us that she has recorded it in our notes that we are not following advice, however at least she has agreed not to speak like this in front of our D. 

She always refers to my ‘anxieties’ about weight, not referring to my ‘views’ or my ‘opinion’, which has been formed through much reading and research and taking account of many parents experiences on here. I think the choice of the word ‘anxieties’ seems to infer some sort of irrational, emotional position that I’m taking and it’s  patronising. 

I always wonder how much pressure CAHMS  therapist feel due to lack of resources and workload. It’s well known in the UK that mental health problems in children is at an all-time high. There must be some pressure to move cases along as quickly as possible and look for opportunities to discharge. 

My advices be very wary when I therapist starts talking about discharge and remember this is a very long-term illness and weight recovered is only one stage with a lot more work to do. 


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tina72
You really got it, Hendrixt, and although I am sorry you need to fight so much for that I am totally convinced that your d will be safe as long as you are there to fight for her because you have understood what this disease is about.
Keep fighting, you are on the right path!
Keep feeding. There is light at the end of the tunnel.
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sandie
Hendrix I experience the same here. I am convinced I am being seen as “naturally” over anxious and emotional because what we have been through rather than having rational views based on reading and learning from other parents and LOTS OF experience now as a caregiver. And you are right it is patronising and disempowering. And we are getting the working towards discharge talk as well. Standing firm.
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mid73
I wish they had given her that lecture Melstev. I also wished that condition of discharge was maybe 8 weekly weight checks with instant referral back if weight had dropped. I’m as much responsible really for letting them discharge her I guess. But weight had been maintained for a long time and she wasn’t and never had had any sort of “ therapy”. I also think stopping Fluoxetine in the month or so before discharge probably didn’t help as she was much better on it. 

We will see what this week brings!
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tina72
mid73 wrote:
I’m as much responsible really for letting them discharge her I guess. But weight had been maintained for a long time and she wasn’t and never had had any sort of “ therapy”. I also think stopping Fluoxetine in the month or so before discharge probably didn’t help as she was much better on it. 


Do not take on these shoes, mid73. You are not the professional and you should not need to question what they say is good.
It does not help anybody to look back and think about what has gone wrong and what you should have done.
See it as learning and now you know what to do next time and this will not happen again. Try to look forward.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hendrixt

I would be tempted to say something like:  'So you are giving my 14 (is she 14, can't remember) year old daughter permission to remain at this weight for the rest of her life?  Not very sensible - which is why I am not being anxious about weight, I am seeing weight gain as normal and desirable and it should be increasing as she goes through her teens right into her twenties and I don't like the idea of artifical barriers being put in to stop this happening'.

I continue to remain horrified by the nonsense which clinicians are promoting in the UK, in England in particular.
Believe you can and you're halfway there.
Theodore Roosevelt.
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tina72
MelstevUK, can we hire you to accompany us to doctors appointments??? 😍
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Haha Tina - I am always better on paper than in real life!  And I didn't have the knowledge that I have now.  

Mid73 - as Tina says you are not responsible for any of this.  With any other illness and any other clinician we would trust them - but eds are the one area where so many of us find to our huge cost and to our children's cost, that clinicians cannot be trusted.  There are bad clinicians the world over who are too arrogant to change what they are doing - and the great ones are still in the minority.  I sincerely hope that this will change with time.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Torie
Hi mid73,
So sorry to read about this setback; it sounds like CAHMS really let her down badly.  Another mistake they seem to have made is permitting your d to remain at the same weight for several years.  It is normal and expected that they will gain a kg or 2 each year through the young adult years - this is true for AN and non-AN alike.  WHen they stay at the same weight for several years, the effect is similar to losing a few kgs.

Since she has lost 7 kg, I would urge you to come up with a plan to reverse this asap.  It will only get harder as time goes on and the weight loss increases.  Seven kg loss is often possible to reverse at home, but as the loss increases, so too does the likelihood that she will need to be readmitted.  So it is very much in her interest to get moving on this right away.

Another reason to start right away is her age.  17 is a critical age as she will be considered an "adult" soon, ready or not.  Your parental authority will never be greater than it is now.  For example, we were very clear with our d that we would be happy to pay all university expenses (travel, books, food, tuition, etc.) if she remained at a good weight, but if she lost weight we would not be able to do that.  If you pay for her phone, travel, anything at all, that gives you leverage you can use to beat back ED.

It is great that she wants you to keep paying for driving lessons.   It is great that you posted your story as a warning to others - would you like help brainstorming ideas to get her weight back up?

Thinking of you. xx

-Torie 
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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mid73
Hi Torie

Thank you for replying. I guess the positives are she’s eating 3 meals and 2 snacks a day, snacks have comeback as she’d stopped them. I guess the greatest challenge is to get the calories up. But it’s very difficult. Our evening meal is heavily loaded but I’m struggling elsewhere as she just won’t have more. The irony is  If she’d not lost weight in the first place what she’s eating now would be fine to maintain a reasonable weight!
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Hendrixt
tina72 wrote:
You really got it, Hendrixt, and although I am sorry you need to fight so much for that I am totally convinced that your d will be safe as long as you are there to fight for her because you have understood what this disease is about.
Keep fighting, you are on the right path!


Thanks Tina, nice of you to say that
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Hendrixt
melstevUK wrote:
Hendrixt

I would be tempted to say something like:  'So you are giving my 14 (is she 14, can't remember) year old daughter permission to remain at this weight for the rest of her life?  Not very sensible - which is why I am not being anxious about weight, I am seeing weight gain as normal and desirable and it should be increasing as she goes through her teens right into her twenties and I don't like the idea of artifical barriers being put in to stop this happening'.

I continue to remain horrified by the nonsense which clinicians are promoting in the UK, in England in particular.


that’s a great way to say it Melstev.  The thing is she is hungry and in order to follow the advice of the therapist I would have to stop her from eating snacks and meals that she at the moment is actually wanting to eat 
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Foodsupport_AUS
Hendrixt wrote:


that’s a great way to say it Melstev.  The thing is she is hungry and in order to follow the advice of the therapist I would have to stop her from eating snacks and meals that she at the moment is actually wanting to eat 


Even the suggestion that a child with AN is prevented from eating to maintain an artificially determined weight sends shudders up my spine. They need to know why this is wrong, so wrong. 
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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melstevUK
Hendrixt,

The fact that your d is experiencing hunger is a miracle - and you need to let her eat.  I totally agree with Foodsupport - I shudder too, to think of any therapist who would put barriers to a child with AN wanting to eat.  That is really scary and shows just how she doesn't understand the science behind the illness.  So many clinicians still see it all as a psychological illness - it makes me furious that they never seem to update their knowledge base.
Believe you can and you're halfway there.
Theodore Roosevelt.
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melstevUK
Hendrixt,

I am also wondering now if the overwhelming anxiety with your d is a mixture of not being able to fight the ed voice because hunger has kicked in big time - and yet she is hearing the therapist side with the an.  That would create huge tugs in all directions, not to mention having to fear the weight gain that is going to come with eating.

I am wondering if the fear about going to school is about fears of what she is going to look like on her return - no doubt she will be thinking she is enormous with all the distortions that an gives her, and if she has gained weight.   I imagine she won't really have fears about school work - it will be the social side.  Girls in particular - unless they are super-confident - are often hyper conscious about what they look like in their teens, and an in the mix will make it even worse.

Just a thought.

I am glad you are getting some help from someone who works in education with regard to the school anxiety.  
Believe you can and you're halfway there.
Theodore Roosevelt.
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tina72
mid73 wrote:
Hi Torie

Thank you for replying. I guess the positives are she’s eating 3 meals and 2 snacks a day, snacks have comeback as she’d stopped them. I guess the greatest challenge is to get the calories up. But it’s very difficult. Our evening meal is heavily loaded but I’m struggling elsewhere as she just won’t have more. The irony is  If she’d not lost weight in the first place what she’s eating now would be fine to maintain a reasonable weight!


You do not necessarily feed her more to get more calories in, it might be enough just to increase the fats in the meal. Can we help you with ideas how to increase calories in the other meals/snacks?
Keep feeding. There is light at the end of the tunnel.
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mid73
Hi Tina
I’m adding extra oil, ground almonds and double cream where I can. I know the snacks IP used  when she was there.  These were fortified hot chocolates and smoothies but she just won’t eat a snack much above 150-200 calories at the moment. I keep pushing but there’s nothing budging her at the moment.
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