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

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Hendrixt
Hi All,

We've been in CAHMs [the CED - Community Eating Disorder service] since May, with 14yrs old D diagnosed AN, having been restricting since January - now hovering around W/R but a long way of state recovered and lot's of ED behaviours to work through. In line with other people's experiences in the UK we are already feeling a push towards independent eating which feels too fast and a push against further weight gain [she has only dipped into health weight range and now is just below it] 

I'm looking to link up with someone who has been through this stage of CAHMs to share experiences - what comes after this? - We're wondering how far off we are from being discharged and whether they might move us into general CAHMs.

It's probably a question for UK members but very happy to hear from anyone who has views.
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Bobs
Hi, I have no answers but just to say we are at the same sort of stage as you. We are in the UK and started with CAHMs beginning of June and D restricting from January. She has always been very slight and there was no noticeable weight loss to us her family. Plenty of anorexic thoughts and behaviours though!
The clinic originally suggested a W/R of 90% but we are still hovering around 82%. Last week the nurse suggested we lower W/R to 85%. There is no growth chart for her after 1 year old.
I have a feeling she suggested this as although we are following the meal plan the weight is not going up substantially. Her mood is however much improved and many behaviours have stopped, anorexic thoughts are still there. I said I still want to push for 90%. 
Like you I have concerns mine being that as it is the NHS they drop the targets to get people through the system faster...
There has been no dietitian in post but someone is starting in a few weeks so I’m looking forward to connecting with them. 
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hopeful_mum
Hi Hendrixt, we had a similar situation soon after discharge from inpatient and when my D was at 50th percentile which CAMHs were taking as weight restored but she was still yet to gain her historical weight of 75th percentile. I too was surprised how quickly her psych was pushing for her to move onto independent eating by being told to prepare and plate her own lunch. We also felt that CAMHs were gearing up to discharge which we knew would be far too early for my D. The long and short of it, my D could not handle making these decisions for herself as her brain was not healed enough at this stage. ED behaviours such as throwing food etc returned as she clearly was not well enough for this level of independence. Thankfully we had a very understanding psych who we explained the situation to her and she was willing to agree that this move was too quick for our D. Our psych took on board our concerns and feedback and we took back control all the plating and prep of all our D's food. I know everyone's experiences are different and CAMHs teams vary across the UK but this was our experience.

Have you tried discussing your concerns with your team at all? 
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Aggie
Hi Hendrixt 
We were referred to the community team early on and worked with them for a lot longer than we should have been but I think her nurse fought my daughters corner to keep her under their care as her anxiety level was through the roof, additional behaviours starting arising and to move her would have been detrimental, as although we were refeeding and gaining weight there was no improvement at all with anorexic thoughts, in fact the closer she got to a healthy weight, the worse they became.
During this time the community team referred her for assessment to the next tier, which is the EDOS Team, (Eating disorder outreach service) those involved in the inpatient side of things to see if a short term stay might kick start things, but it was decided she wouldn't benefit and was better at home.  
Our nurse changed job in January of this year and moves were made immediately to transfer my daughter back to general CAMHS. I have to say I was terrified at the time but it has been fine.
We had a meeting with the community team in which I established exactly what would happen, I am guessing you are seeing someone once / twice a week at the moment so it's important that you know how it's going to look moving forward.  The psychologicist she was seeing became her case manager and continues to see her once a week and I had already insisted on another assessment from the EDOS team which has worked in our favour because It kept them involved. It's possible that she would have been discharged by now without their involvement.
If you are concerned about independent eating being too soon bring it up with them, I know everyone recovers at different rates but you have voiced this concern for a reason and generally, in my experience, your gut feel is right. We were encouraged to let my daughter start eating lunch with her friends at school which resulted in it being discarded, a drop in weight and her having to be supervised by a teacher for a year. We have only just taken that leap of faith again now, but I feel much more confident this time that she is in the right place to manage it.

The community team are an acute intervention, meant to get things on an even keel and then hand back, don't be too hung up what part of the service it is, the important thing is that she works well with whoever she is seeing - my daughter  has made more progress with the guy she sees now than she did with anyone else because he is very good.

If you have a any specific questions, please ask. Good luck x
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Hendrixt
Bobs wrote:
Hi, I have no answers but just to say we are at the same sort of stage as you. We are in the UK and started with CAHMs beginning of June and D restricting from January. She has always been very slight and there was no noticeable weight loss to us her family. Plenty of anorexic thoughts and behaviours though!
The clinic originally suggested a W/R of 90% but we are still hovering around 82%. Last week the nurse suggested we lower W/R to 85%. There is no growth chart for her after 1 year old.
I have a feeling she suggested this as although we are following the meal plan the weight is not going up substantially. Her mood is however much improved and many behaviours have stopped, anorexic thoughts are still there. I said I still want to push for 90%. 
Like you I have concerns mine being that as it is the NHS they drop the targets to get people through the system faster...
There has been no dietitian in post but someone is starting in a few weeks so I’m looking forward to connecting with them. 


Hi Bobs,

 

Thanks for going to the trouble of relating your story.

 

Our therapist seems reluctant to talk about percentages of W/R and growth charts. It’s always me that brings up the subject but she always seems to cut the conversation short – we have been told the healthy weight range but I’ve no idea how they have come up with this – we have no previous growth charts – they’ve been lost. I think 85% is too low TBH  - we were experiencing the same problem as you – sticking to the meal plan but getting no gains but they did start coming after a few weeks – so stick in there at it if you can

 

Just a word of caution regarding the dietitian. We had been re-feeding for about five weeks and hadn’t been making much progress in terms of weight gain at all. Then on one week we had a 1.4 kg weight gain and we were overjoyed as you can understand. However in response to this our FBT therapist had a bit of a panic and said it was too much! She made an appointment for us with the dietician so I rang the therapist ahead of the appointment to ask what would be discussed with the dietician and whether it would be in the presence of our D. I had actually wrongly guessed the dietitian would be giving us advice on how to maintain our success with the recent weight gain. But then the therapist said that the dietician would consider the weight gain too high and would want to discuss this with us and our D so I said that we would only have any discussions with the dietician in private until we were happy with what would be said to our D. The FBT therapist reluctantly agreed but said that she would record the fact that we were not following CAHMs advice.

 

We saw the dietitian in private and she said that the weight gain was too high. We argued that we weren’t willing to reduce calorie intake as she was advising. Also we weren’t interested in her suggestion to make more ‘healthy food’ choices. The dietician spent about an hour trying to persuade us ways to reduce calories and for our daughter to ‘eat healthily’ (too many sausages apparently). Thank god we didn’t allow that conversation to happen in D’s presence.

 

No doubt some people will have had a more positive experience. I would just check what the dietician is going to say in front of your D first

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Hendrixt
hopeful_mum wrote:
Hi Hendrixt, we had a similar situation soon after discharge from inpatient and when my D was at 50th percentile which CAMHs were taking as weight restored but she was still yet to gain her historical weight of 75th percentile. I too was surprised how quickly her psych was pushing for her to move onto independent eating by being told to prepare and plate her own lunch. We also felt that CAMHs were gearing up to discharge which we knew would be far too early for my D. The long and short of it, my D could not handle making these decisions for herself as her brain was not healed enough at this stage. ED behaviours such as throwing food etc returned as she clearly was not well enough for this level of independence. Thankfully we had a very understanding psych who we explained the situation to her and she was willing to agree that this move was too quick for our D. Our psych took on board our concerns and feedback and we took back control all the plating and prep of all our D's food. I know everyone's experiences are different and CAMHs teams vary across the UK but this was our experience.

Have you tried discussing your concerns with your team at all? 


Hi Hopeful mum,

Thank god you stood your ground and took back control. Well done! It’s hard to go against advice but you have to go with your instincts and what you know about your D. I’m glad you’ve shared this as it resonates with our experience. We are being pushed towards independent eating, too early and being asked to accept that D is now w/r and doesn’t need further weight gains [she currently hovers around her lowest healthy weight]. So it was starting to feel like CAHMs were gearing up for discharge.

 Anyway we discussed this yesterday with CAHMs and they have reassured us that they are not looking at discharge at all although they are standing their ground on insisting no further weight gain. I’ve told them we disagree and will be going for further gains but the therapist simply said CAHMs can’t force us to stop weight gains – not very supportive really!

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Hendrixt
Aggie wrote:
Hi Hendrixt 
We were referred to the community team early on and worked with them for a lot longer than we should have been but I think her nurse fought my daughters corner to keep her under their care as her anxiety level was through the roof, additional behaviours starting arising and to move her would have been detrimental, as although we were refeeding and gaining weight there was no improvement at all with anorexic thoughts, in fact the closer she got to a healthy weight, the worse they became.
During this time the community team referred her for assessment to the next tier, which is the EDOS Team, (Eating disorder outreach service) those involved in the inpatient side of things to see if a short term stay might kick start things, but it was decided she wouldn't benefit and was better at home.  
Our nurse changed job in January of this year and moves were made immediately to transfer my daughter back to general CAMHS. I have to say I was terrified at the time but it has been fine.
We had a meeting with the community team in which I established exactly what would happen, I am guessing you are seeing someone once / twice a week at the moment so it's important that you know how it's going to look moving forward.  The psychologicist she was seeing became her case manager and continues to see her once a week and I had already insisted on another assessment from the EDOS team which has worked in our favour because It kept them involved. It's possible that she would have been discharged by now without their involvement.
If you are concerned about independent eating being too soon bring it up with them, I know everyone recovers at different rates but you have voiced this concern for a reason and generally, in my experience, your gut feel is right. We were encouraged to let my daughter start eating lunch with her friends at school which resulted in it being discarded, a drop in weight and her having to be supervised by a teacher for a year. We have only just taken that leap of faith again now, but I feel much more confident this time that she is in the right place to manage it.

The community team are an acute intervention, meant to get things on an even keel and then hand back, don't be too hung up what part of the service it is, the important thing is that she works well with whoever she is seeing - my daughter  has made more progress with the guy she sees now than she did with anyone else because he is very good.

Hi Aggie,

Thanks so much for taking the time to explain your journey in such detail. The reason why I was concerned about what part of the service we were in is because, at the moment I think we are in what you refer to as the ‘community team’ – ours is called CED, and we want to stay in there. Contrary to your experience I have heard terrible things about our general CAHMs; parents say there is no support/advice around food, re-feeding, ‘holistic therapies’ to relieve anxiety and no evidence that clinicians have any experience of ED. Patients are allowed to stoop to dangerously low weights and on the brink of an admission before being transferred (after hard fought representations from parents) to CED. When parents have desperately sought advice on how to get their children to eat they have simply been advised to take them to A & E. After speaking to other parents in the same service I was beginning to worry that the CED were preparing to transfer us to general CAHMs and I wanted to arm myself with some advice from other parents before I raised my concerns. Since posting I have now received assurance from CED that there are no plans for a transfer to general CAHMs. However, they are reducing the frequency of appointments from once per week to fortnightly visits.

 Well done for insisting on the continuing involvement of the EDOS team – it’s so hard having to negotiate your way through the different branches of these services. It’s good that you were able to pull things around without IP treatment.  We are having the same problem with the return of violent melt downs, food throwing etc as we are hovering towards w/r




If you have a any specific questions, please ask. Good luck x
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Hendrixt

Thanks so much for relating your experiences. Sorry for the late response but things just got really busy after I started the topic

I’m finding that low expectations in terms of  w/r target continues to be a theme in CAHMs. Yesterday we had a discussion with the therapist and suggested that we need to push for higher weight gains due to the evidence that this can increase brain healing and improve mood. The therapist argued that there is no conclusive evidence of this and that anything to the contrary is merely anecdotal. She will not support our efforts to put on more weight and advises us to maintain weight within a couple of pounds of her lowest healthy weight which is a bit frustrating. I’ve informed the therapist we will continue to go for weight gains and she accepts she cannot ‘force us’, in her words to follow her advice – no she can’t!

Reading everything in this post and other posts about CAHMs,  I get the impression that in some areas there is a whole team of clinicians involved with mentions of psyches, nurses, therapists, paediatricians and psychologist etc. However we only ever deal with one person and she never mentions any other clinicians. It’s on old large terrace house and every time we go the therapist is the only person in there. There’s a photo collage on the wall which has been reduced from 8 photos to about 3 so I wonder whether resources are depleting and that is what was fuelling my worries about being discharged or referred into general CAHMs. 

However, my fears that we were close to being discharged have been dispelled as yesterday our therapist confirmed that there are no plans to discharge her.

 I do get the feeling that CAHMS have low expectations in terms of full recovery. My D had only been restricting since January, losing 10lbs, and we started re feeding in May, getting near to w/r in august. I sought the views of the therapist on chances of full recovery and suggested that our D may have a better chance than those who had been chronically ill for years without proper intervention but she simply said ‘everyone finds their own state of recovery’, which is a bit vague. Either way – we are pushing for full recovery, no matter how long it takes.

Good luck to all

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Foodsupport_AUS
Hendrixt you sound like you are making great progress.  @Bobs it is so frightening that they have suggested to reduce her goal weight to 85% WFH, this used to be the old weight criteria for a diagnosis of anorexia nervosa and will be the equivalent of around the 3rd centile BMI. 
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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Hendrixt
Hendrixt you sound like you are making great progress.  @Bobs it is so frightening that they have suggested to reduce her goal weight to 85% WFH, this used to be the old weight criteria for a diagnosis of anorexia nervosa and will be the equivalent of around the 3rd centile BMI. 
 

Thanks food support. Our D has only dipped once into the lowest portion of her healthy weight range. We've had a discussion with the therapist and suggested that we need to push for higher weight gains due to the evidence that this can increase brain healing and improve mood. The therapist argues that there is no conclusive evidence of this and that anything to the contrary is merely anecdotal. She will not support our efforts to put on more weight and advises us to maintain weight within a couple of pounds of her lowest healthy weight which is a bit frustrating. 

Do you know where I can find the evidence based research to convince her that more weight gain would be best.

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CED123
Slightly off topic but in case it is useful for you hendrixt or anyone else : our camhs based eating disorder service has the following on the team:
Clinical psychiatrist (part time)
Team manager 
Family therapist 
Dietician 
2 of some other type of psychology person (forgot their title!!) 
3-4 counter practitioners (therapists)

All or at least the majority spend their time between 2-3 towns in the region though. 

Also : thanks hendrixt for the info on health plans in one of your threads. I am following that up with our school. 
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Hendrixt
CED123 wrote:
Slightly off topic but in case it is useful for you hendrixt or anyone else : our camhs based eating disorder service has the following on the team:
Clinical psychiatrist (part time)
Team manager 
Family therapist 
Dietician 
2 of some other type of psychology person (forgot their title!!) 
3-4 counter practitioners (therapists)

All or at least the majority spend their time between 2-3 towns in the region though. 

Also : thanks hendrixt for the info on health plans in one of your threads. I am following that up with our school. 


thanks CED - good luck with the school. It made a big difference, especially when they got the funding - no more talk of volunteers 
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Foodsupport_AUS
Quote:

Thanks food support. Our D has only dipped once into the lowest portion of her healthy weight range. We've had a discussion with the therapist and suggested that we need to push for higher weight gains due to the evidence that this can increase brain healing and improve mood. The therapist argues that there is no conclusive evidence of this and that anything to the contrary is merely anecdotal. She will not support our efforts to put on more weight and advises us to maintain weight within a couple of pounds of her lowest healthy weight which is a bit frustrating. 

Do you know where I can find the evidence based research to convince her that more weight gain would be best.


Unfortunately the therapist is right. There is remarkably scant evidence that more weight will improve the chances of recovery or prevent relapse, despite what you may read on here. The evidence is mostly anecdotal. I have spent many, many hours scouring journal articles for evidence of this.

The attached letter has been used by some parents however all the links on it are to blogs and therefore are purely anecdotal.

There was a study put out by Lock and LeGrange showing early and more rapid weight gain seems to make a difference but doesn't talk about higher weight. (Weight restoration and broader recovery)

There is evidence that higher percentage body fat in patients at discharge from hospital makes a difference to relapse, for example the small study covered in this link - but again not higher weight.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4469282/

This was the state of the art review published by Rebecka Peebles. Again not a lot of evidence to work with. https://www.researchgate.net/publication/265054364_Eating_Disorders_in_Children_and_Adolescents_State_of_the_Art_Review
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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silvermoon
Although each uk story may be different I guess it may too share a similarity of pressure to stretched resources. We are based in Scotland and are 21 months post discharge from our ED team of CAHMS

to be honest most of my regrets centre around not listening to my gut, and not challenging advice enough. I hope that you realise how great it is to question these things that cause you concern.

 If I could turn back time I’d 
- pushed for more weight than they’d suggested/settled for
- stuck to my instincts to delay the phase 2 level of control around mealtime choice 
- insisted on more physiological intervention (there was no 1:1) only nutrition rehab 
- pushed for 100% recovery from ED behaviour 

I don’t think any carer who has pushed for heigher weight has ever regretted that call, and I’d say follow your instincts as a parent, in hindsight they have never been wrong for me. Unfortunately at the time when it really mattered the professionals seemed to erase my  self belief. 

The road to full recovery are stories that will include the extra weight and delay in the level of control.

I guess the fbt chams uk approach may be a fast track version which isn’t person centred, instead revolving around reaching referral targets or not as the case may be, and professionals settling for less therefore settling patients and carers up for partial recovery and significant other issues caused by general lack of the ability to see the bigger picture where additional weight can do more good than harm.

stick to your intuition and I admire your strength to challenge your “team”
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Aggie
Hendrixt,
You are right about the low expectations with CAHMS as we were told by EDOS that they consider 90% WR as recovery and will generally discharge then, but that is General CAHMS. If it gives you any comfort the ED nurse who supported us was the most amazing person I have ever met and had been involved in ED for 20 yrs. She said the earlier the intervention, especially with young people, the more chance of full recovery. Also that behaviour is likely to become more challenging as they reach WR target and was at that point she stopped pushing her to weigh in order to concentrate on her mental health.  Interestingly, she never pushed for independent eating because although compliant, the resistance was evident - we did that naturally, firstly by giving a choice of two things at various snack / meal times, then by saying 'you get your snack, while I do your drink' and moving on to her preparing her breakfast, then during the summer holidays, getting her own lunch (using the excuse I was busy as I had to work from home). This worked well for us, she now naturally gets her own snacks and breakfast on the weekend and always generous measures and I think it was all about her being ready and not doing it too quickly.  
Her advice was that we should aim for consistent weight gain at around 0.5 to 1kg per week.  My D has gained 20kg in this journey and is now in the lower end of healthy and her current psych is telling her she needs to be aiming for mid to high. I don't know how this will play out as she has always been very slight anyway.
Regarding your team, we lost 4 of ours while we were there and they hadn't replaced any, it's so sad that the service is in this state when it's so desperately needed.
Your support is what will see her through, it's sounds like you are doing an amazing job.
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sandie
On subject of evidence, my understanding is there is a paucity of studies about outcomes in anorexia. Evidence from parents’ experience should not be discounted. It is a form of evidence in its own right. 
The recent book everyone on this site recommends by the Californian psychologist whose name I cannot remember now refers to this evidence and says it would be foolish to disregard.
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freedomfighter
Oh it's so upsetting to see what so many people have experienced from CAMHS.  We had exactly the same.  Therapist pushing for independent eating and food choices LONG before D was able to cope with this.  Therapist giving her a target weight  at the low end of her carefully calculated healthy weight range saying (in D's presence) that more would be 'too much for her'.  Our sessions with CAMHS became unbelievably stressful, likewise with the dietician, who said she couldn't support us as parents re-feeding our D according to predicted growth curve.  Although in name it was FBT in practice it wasn't.  So in the end we pulled right away from CAMHS, and just continued the feeding ourselves.  We wrote a letter cc'ing everyone including head of our  camhs, explaining our concerns and asking for proper support.  This was a very scary feeling (and D was furious with us for doing this) but nothing like the stress of going to sessions where we were pitted against each other, and where things were said things which totally undermined D's hard-won progress.  5.5 months on, D slowly took over her own food choices, as appropriate, a month later periods resumed, the hatred of us drained away, and now a year later our D is back.  Still more work to do, but food is no longer a source of stress and anxiety for her, she is healthy and connected and full of vitality.  There is a copy of our letter if you search 'freedomfighter' and look at my posts, in case that might be helpful.  As parents YOU are the experts in your daughter.  It's so tough that we have to deal with outdated treatment methods as well as dealing with the suffering of our children.  We long to hand over responsibility to the 'professionals' because it's all so frightening but in the end of the day if they are not supporting you as you support your daughter, their input is downright dangerous.  Food and love, then therapy down the line if she will accept it. (which our D never would). Courage to you!
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Hendrixt


Unfortunately the therapist is right. There is remarkably scant evidence that more weight will improve the chances of recovery or prevent relapse, despite what you may read on here. The evidence is mostly anecdotal. I have spent many, many hours scouring journal articles for evidence of this.

The attached letter has been used by some parents however all the links on it are to blogs and therefore are purely anecdotal.

There was a study put out by Lock and LeGrange showing early and more rapid weight gain seems to make a difference but doesn't talk about higher weight. (Weight restoration and broader recovery)

There is evidence that higher percentage body fat in patients at discharge from hospital makes a difference to relapse, for example the small study covered in this link - but again not higher weight.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4469282/

This was the state of the art review published by Rebecka Peebles. Again not a lot of evidence to work with. https://www.researchgate.net/publication/265054364_Eating_Disorders_in_Children_and_Adolescents_State_of_the_Art_Review



Hi food support – really grateful for all the information you have sent and I’ve spent some time going through it. I have previously sent the links in the letter to the team but the therapist simply did not reply – as you say though it’s mainly blogs. I read the research about higher fat – this shows we are on the right track with adding plenty of fats to her diet. The state of the art research is very interesting – although there’s nothing about higher weight gains – the bit about Hyper-metabolic state is significant as it backs up our decision to keep up calorific intake over the next couple of years

 I’ve seen a lot of anecdotal evidence to support higher weight gains but no anecdotal evidence that higher weight gains are harmful, or that they do not justify the additional anxiety caused in reaching them. Maybe I’ll post that question as a topic – sure it’s been done before though.

 What do you think food support – are you convinced by the argument for higher weight gains?

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Hendrixt
Aggie wrote:
Hendrixt,
You are right about the low expectations with CAHMS as we were told by EDOS that they consider 90% WR as recovery and will generally discharge then, but that is General CAHMS. If it gives you any comfort the ED nurse who supported us was the most amazing person I have ever met and had been involved in ED for 20 yrs. She said the earlier the intervention, especially with young people, the more chance of full recovery. Also that behaviour is likely to become more challenging as they reach WR target and was at that point she stopped pushing her to weigh in order to concentrate on her mental health.  Interestingly, she never pushed for independent eating because although compliant, the resistance was evident - we did that naturally, firstly by giving a choice of two things at various snack / meal times, then by saying 'you get your snack, while I do your drink' and moving on to her preparing her breakfast, then during the summer holidays, getting her own lunch (using the excuse I was busy as I had to work from home). This worked well for us, she now naturally gets her own snacks and breakfast on the weekend and always generous measures and I think it was all about her being ready and not doing it too quickly.  
Her advice was that we should aim for consistent weight gain at around 0.5 to 1kg per week.  My D has gained 20kg in this journey and is now in the lower end of healthy and her current psych is telling her she needs to be aiming for mid to high. I don't know how this will play out as she has always been very slight anyway.
Regarding your team, we lost 4 of ours while we were there and they hadn't replaced any, it's so sad that the service is in this state when it's so desperately needed.
Your support is what will see her through, it's sounds like you are doing an amazing job.


Hi Aggie,
It's reassuring what your therapist has said about early intervention. I put that to our therapist but she could give no reassurance on recovery and said simply that 'they all find their own state of recovery' or words to that effect.Well done with the independent eating - I've made a note of what you did so we can use  when we're ready. It's strange that your psych said different than the ED nurse - maybe he/she thinks the extra pounds could improve brain healing.
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Hendrixt
sandie wrote:
On subject of evidence, my understanding is there is a paucity of studies about outcomes in anorexia. Evidence from parents’ experience should not be discounted. It is a form of evidence in its own right. 
The recent book everyone on this site recommends by the Californian psychologist whose name I cannot remember now refers to this evidence and says it would be foolish to disregard.


Hi Sandie - I agree. As parents we will do anything to get the best chance of recovery and won't want to discount anything that might improve the chances. I suppose you have to balance it against the amount of extra weight gain and how much additional anxiety it causes. At the moment we are still piling in the calories and fat as much as we can get away with it. 
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Hendrixt
silvermoon wrote:
Although each uk story may be different I guess it may too share a similarity of pressure to stretched resources. We are based in Scotland and are 21 months post discharge from our ED team of CAHMS

to be honest most of my regrets centre around not listening to my gut, and not challenging advice enough. I hope that you realise how great it is to question these things that cause you concern.

 If I could turn back time I’d 
- pushed for more weight than they’d suggested/settled for
- stuck to my instincts to delay the phase 2 level of control around mealtime choice 
- insisted on more physiological intervention (there was no 1:1) only nutrition rehab 
- pushed for 100% recovery from ED behaviour 

I don’t think any carer who has pushed for heigher weight has ever regretted that call, and I’d say follow your instincts as a parent, in hindsight they have never been wrong for me. Unfortunately at the time when it really mattered the professionals seemed to erase my  self belief. 

The road to full recovery are stories that will include the extra weight and delay in the level of control.

I guess the fbt chams uk approach may be a fast track version which isn’t person centred, instead revolving around reaching referral targets or not as the case may be, and professionals settling for less therefore settling patients and carers up for partial recovery and significant other issues caused by general lack of the ability to see the bigger picture where additional weight can do more good than harm.

stick to your intuition and I admire your strength to challenge your “team”


Thanks ever so much Silvermoon - that gives me confidence to keep on going as we are - it does sometimes feel like a 'fast-track' route - unsupervised eating, return to exercise and other activities are being suggested a bit too soon for me
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Hendrixt
Oh it's so upsetting to see what so many people have experienced from CAMHS.  We had exactly the same.  Therapist pushing for independent eating and food choices LONG before D was able to cope with this.  Therapist giving her a target weight  at the low end of her carefully calculated healthy weight range saying (in D's presence) that more would be 'too much for her'.  Our sessions with CAMHS became unbelievably stressful, likewise with the dietician, who said she couldn't support us as parents re-feeding our D according to predicted growth curve.  Although in name it was FBT in practice it wasn't.  So in the end we pulled right away from CAMHS, and just continued the feeding ourselves.  We wrote a letter cc'ing everyone including head of our  camhs, explaining our concerns and asking for proper support.  This was a very scary feeling (and D was furious with us for doing this) but nothing like the stress of going to sessions where we were pitted against each other, and where things were said things which totally undermined D's hard-won progress.  5.5 months on, D slowly took over her own food choices, as appropriate, a month later periods resumed, the hatred of us drained away, and now a year later our D is back.  Still more work to do, but food is no longer a source of stress and anxiety for her, she is healthy and connected and full of vitality.  There is a copy of our letter if you search 'freedomfighter' and look at my posts, in case that might be helpful.  As parents YOU are the experts in your daughter.  It's so tough that we have to deal with outdated treatment methods as well as dealing with the suffering of our children.  We long to hand over responsibility to the 'professionals' because it's all so frightening but in the end of the day if they are not supporting you as you support your daughter, their input is downright dangerous.  Food and love, then therapy down the line if she will accept it. (which our D never would). Courage to you!


Wow that's really brave - what an amazing job you did there. I'll have a look at the letter you wrote, must have been really hard and scary.We're not quite at that stage yet. We are very careful about what is said in front of D and given strict instructions to the therapist not to say anything negative about our approach in front of our D. In fact we may ending up pulling out as D is not engaging at all with the therapist. We struggle to get her to the clinic for appointments. At the last one, after she was weighed, our D locked herself in the tiolet and when we had finally persuaded her to come out she refused to go into the room with the therapist
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Foodsupport_AUS

 

Hendrixt wrote:

Hi food support – really grateful for all the information you have sent and I’ve spent some time going through it. I have previously sent the links in the letter to the team but the therapist simply did not reply – as you say though it’s mainly blogs. I read the research about higher fat – this shows we are on the right track with adding plenty of fats to her diet. The state of the art research is very interesting – although there’s nothing about higher weight gains – the bit about Hyper-metabolic state is significant as it backs up our decision to keep up calorific intake over the next couple of years

 I’ve seen a lot of anecdotal evidence to support higher weight gains but no anecdotal evidence that higher weight gains are harmful, or that they do not justify the additional anxiety caused in reaching them. Maybe I’ll post that question as a topic – sure it’s been done before though.

 What do you think food support – are you convinced by the argument for higher weight gains?



My own trial of one daughter does not support the higher weight gains. We struggled mightily with weight gain - recurrent hospitalisations for complete food refusal - and there was an awful lot of ups and downs. We did manage weight restoration or at least something very close to it on several occasions however her mental health at that time over 4.5 years was terrible.  My D is now doing pretty well 9 years in. She mentally seems well, eats well from a wide variety of foods. No one who has not been told is aware that she had been so ill for so long. Physiologically she is stable. Weight wise however she remains slightly underweight. That weight however is very stable and has been for some years. My own theory is that it is the consistent nutrition from a broad diet that is making the difference. 

 

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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Hendrixt


My own trial of one daughter does not support the higher weight gains. We struggled mightily with weight gain - recurrent hospitalisations for complete food refusal - and there was an awful lot of ups and downs. We did manage weight restoration or at least something very close to it on several occasions however her mental health at that time over 4.5 years was terrible.  My D is now doing pretty well 9 years in. She mentally seems well, eats well from a wide variety of foods. No one who has not been told is aware that she had been so ill for so long. Physiologically she is stable. Weight wise however she remains slightly underweight. That weight however is very stable and has been for some years. My own theory is that it is the consistent nutrition from a broad diet that is making the difference. 

 



That's interesting as I hardly hear from people who don't advocate pushing for higher weight gain, it's whatever works for your D that counts. Reading that very short summary it's obvious you've gone through a very hard time and achieved a lot and that makes me hopeful that we can get there with our D. We never had any hospitalizations but came close - I can't imagine how you must have felt. The stabalisation of weight and mental health coupled with flexibility in what your D will eat seems to be your success story. We've got a long way to go before we achieve anything like that.
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Aggie
Hi Hendrixt,
Sorry if I confused you - our ED nurse always pushed for steady weight gain, we never discussed when that should stop, were just encouraged to keep going. She's no longer with that team but her current psych is encouraging at least to hit average in the healthy weight range despite her slight build.
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