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

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Hendrixt
Can anybody explain how CAHMS in the UK calculate weight recovery? D developed anorexia in January 2019. By May she had lost 4.6 kg. We started re-feeding six weeks ago so we think we probably got it early.

Over that six weeks we have achieved an overall weight gain of 0.6kg, including weekly gains and losses. D was 98% weight for height in January before she started restricting, she’s always been in the slim side. In May, just prior to re-feeding she was 91% weight for height. She is now 92%. 

CAHMS are saying that D is now almost at a ‘healthy weight’ and that we can now relax restrictions on her taking physical exercise and we need to slow down the rate of weight gain. We are struggling to get our heads round this and find it difficult to accept that we should relax on the food intake and exercise restriction when she still has 4kg to go before she is at her pre-anorexia weight. 

Does anybody know how CAHMS might reach the conclusion that she is almost at a healthy weight?
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Ellesmum
My CAMHs said exactly the same, I think they just go by the NHS guidelines which are probably ok for non ED people.  CAMHs called me to tell me what they told you and I told them to not say anything in front of d, no talk of exercise allowed (activity is the word I insisted on, meaning anything from going to a theme park, shopping with friends, ice skating etc.) 

Since then I’ve had a long talk with them about the need for full nourishment, full healing, the body and it’s set point etc and they’re onside as much as the ‘book’ allows. In my opinion their ideas as described by you are exactly why full recovery is seen as almost impossible (they’ve told me d will likely always struggle) and why people go in and out of treatment, they’re simply not encouraged or ‘allowed’ to get fully well.  

I’ve made clear any concerns about d and her gain is to be a private conversation, they are not to remove her permission to eat and they must support me, it’s what they are there for. 
Ellesmum
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MarcellaUK
CAHMS teams very a lot, in their composition, their resources and the methods they use. Where I live we don't even have a "CAHMS" we have a specialist all age eating disorders team and then the generalist mental health team for children and adolescents is called CYPS (the children's and young people's service). It really isn't possible to generalise what kind of clinician you will get via CAHMS (psychiatrist, social worker, nurse, dietician, occupational therapist?) let alone exactly what they will do. The "postcode lottery" of treatment is very real.

That said there have been enormous strides towards creating evidence based pathways for the care of adolescents with eating disorders in the UK and many teams will have received training from the Maudsley Hospital. Only a very few individuals have done any of the "Train2Treat" training from Prof Lock's team as this is very expensive, but the training they will have done will be based on the same model. They may be superbly talented people who can deliver it well, or be inexperienced and under resourced and apply it with just about as much power as a wet cloth but they will be able to argue that they are using "FBT" and that their treatment is "evidence based". Both completely "true" FBT from Train2Treat therapists and the developments from Prof Eisler's team in London are evidence based, manualised and time limited. My cynical mind feels that the "time limited" bit is what appeals to funders of treatment be they NHS Trusts or insurance companies the most. Of course there is evidence that many adolescents do well within the time frames suggested but there is also a lot of evidence here that many patients need a lot longer and a lot more support. This is a newer thread on the theme  https://www.aroundthedinnertable.org/post/fbt-flaws-timelinesstages-etc-for-all-in-the-trenches-from-those-of-us-out-the-10175255?pid=1308900708 . Therefore, to cut a long story short, I think many will find that their teams in the UK, whatever they are called and whoever they are actually made up of, will rush towards handing back control to the patient or "Stage II" of treatment. The Maudsley Parents site says that "The patient’s acceptance of parental demand for increased food intake, steady weight gain, as well as a change in the mood of the family (i.e., relief at having taken charge of the eating disorder), all signal the start of Phase II of treatment. The Manual says that Stage II should start at Session 11 and can do so when the child has reached 90% weight for height weight restoration. Hard pressed teams who, lets face it, may well still include some who are not genuinely agnostic as to cause and believe that individual autonomy is vital even at an early stage may well prefer to stick to the letter of the manual rather than take time to really explore whether an individual is ready. 

I've come back to edit this as I started it on my phone, so now have the benefit of reading Ellesmum's post. I think she has it just right. Parents need the support of teams to do what is right for their child. In my experience trying to argue for anything "evidence based" or for "FBT" against people who are absolutely convinced that they are following the evidence, and that they are experts in FBT, has been counterproductive. Calmly stating what YOUR child needs and how they best may support YOU with this on the other hand is both compatible with all the evidence both theoretical and personal and not a challenge to the frail professionality of people who are usually trying very hard to do their absolute best under very difficult circumstances with little by way of resources. 
Fiona Marcella UK
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mrh74
Our Camhs ED team always say that a healthy weight for height range is 95% - 105% and they regarded our daughter as weight restored once she reached 95%.  However, historically she had always been 100% weight for height and it wasn't until she got to at least 97% that she started feeling better physically (not dizzy, tired, cold etc).  It's also good to have a bit of a buffer against weight loss due to illness etc so I didn't feel comfortable when she was at 95%, ie the lowest "healthy" weight.  I'm a big believer in the set point theory - that there is a weight/height ratio which is natural for them, and maybe your daughter's ideal ratio is 98%? 
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sandie
Hi Hendrixt, Once you start relaxing restrictions on exercise we found weight gain got harder and exercise inexorably increased. I would hold firm till back at preAN weight. Your CAHMs rationale is hard to understand. Here, we have different story, i agreed to aim for slower weight gain yesterday with psychologist of 0.2 kg per week from now. Actually i was relieved to reach an understanding with them that further weight gain still needed as on basis of return of period, the paediatrician told D a couple of weeks ago that did not need to put on anymore weight which I disagreed with. We are currently around 17.7 BMI. My D though unlike yours is heavier now than she was pre ED but has probably been too low a weight for years as has tended to restrict as a child so we are okay with slower weight gain at this stage ( has put on over 11kg refeeding). I have learnt it is okay( and important) to disagree, and to question and to make sure that you are happy with goals and that you cannot just trust the experts. I suggest you insist that any goals, changes to restrictions/ intake etc are fully agreed wih you alone face to face before discussing with D. I have found this has not worked well if i do by email or phon. Good luck. X
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Hendrixt
Thanks for all for your comments and reading through them has given us confidence to carry on doing what we are doing in challenging what we are being told by CAHMS.  I do feel that we are being rushed towards phase 2 of FBT and we are not going to allow that to happen. We have fought tooth and nail to get these calories in to our D and to stop the compulsive exercising and we are not going to suddenly do an about to turn just because she is showing signs of gaining weight.  We will be taking our time and waiting for our D to reach the upper end of the height to weight ratio before we make any changes 
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Hendrixt
MarcellaUK wrote:
CAHMS teams very a lot, in their composition, their resources and the methods they use. Where I live we don't even have a "CAHMS" we have a specialist all age eating disorders team and then the generalist mental health team for children and adolescents is called CYPS (the children's and young people's service). It really isn't possible to generalise what kind of clinician you will get via CAHMS (psychiatrist, social worker, nurse, dietician, occupational therapist?) let alone exactly what they will do. The "postcode lottery" of treatment is very real.

That said there have been enormous strides towards creating evidence based pathways for the care of adolescents with eating disorders in the UK and many teams will have received training from the Maudsley Hospital. Only a very few individuals have done any of the "Train2Treat" training from Prof Lock's team as this is very expensive, but the training they will have done will be based on the same model. They may be superbly talented people who can deliver it well, or be inexperienced and under resourced and apply it with just about as much power as a wet cloth but they will be able to argue that they are using "FBT" and that their treatment is "evidence based". Both completely "true" FBT from Train2Treat therapists and the developments from Prof Eisler's team in London are evidence based, manualised and time limited. My cynical mind feels that the "time limited" bit is what appeals to funders of treatment be they NHS Trusts or insurance companies the most. Of course there is evidence that many adolescents do well within the time frames suggested but there is also a lot of evidence here that many patients need a lot longer and a lot more support. This is a newer thread on the theme  https://www.aroundthedinnertable.org/post/fbt-flaws-timelinesstages-etc-for-all-in-the-trenches-from-those-of-us-out-the-10175255?pid=1308900708 . Therefore, to cut a long story short, I think many will find that their teams in the UK, whatever they are called and whoever they are actually made up of, will rush towards handing back control to the patient or "Stage II" of treatment. The Maudsley Parents site says that "The patient’s acceptance of parental demand for increased food intake, steady weight gain, as well as a change in the mood of the family (i.e., relief at having taken charge of the eating disorder), all signal the start of Phase II of treatment. The Manual says that Stage II should start at Session 11 and can do so when the child has reached 90% weight for height weight restoration. Hard pressed teams who, lets face it, may well still include some who are not genuinely agnostic as to cause and believe that individual autonomy is vital even at an early stage may well prefer to stick to the letter of the manual rather than take time to really explore whether an individual is ready. 

I've come back to edit this as I started it on my phone, so now have the benefit of reading Ellesmum's post. I think she has it just right. Parents need the support of teams to do what is right for their child. In my experience trying to argue for anything "evidence based" or for "FBT" against people who are absolutely convinced that they are following the evidence, and that they are experts in FBT, has been counterproductive. Calmly stating what YOUR child needs and how they best may support YOU with this on the other hand is both compatible with all the evidence both theoretical and personal and not a challenge to the frail professionality of people who are usually trying very hard to do their absolute best under very difficult circumstances with little by way of resources. 



 Fiona, thanks for going to the trouble of writing this which is a really interesting read and I also read the link that you posted. Having only been in treatment for five or six weeks we are now seeing signs that the therapist is trying to move towards phase 2 even at this early stage which quite surprised me, even though I had already read about the issue of patients been rushed from phase 1 into phase. We will follow your advice to calmly state what our requirements are for our individual D and I do recognise that professionals working in this field must come to work every day to try their very best to do the right thing but I think we as parents need to push back when we feel that we are being rushed along too quickly. 
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tina72
Hendrixt wrote:
Thanks for all for your comments and reading through them has given us confidence to carry on doing what we are doing in challenging what we are being told by CAHMS.  I do feel that we are being rushed towards phase 2 of FBT and we are not going to allow that to happen. We have fought tooth and nail to get these calories in to our D and to stop the compulsive exercising and we are not going to suddenly do an about to turn just because she is showing signs of gaining weight.  We will be taking our time and waiting for our D to reach the upper end of the height to weight ratio before we make any changes 


Sounds like a good plan and sounds like parents fighting like lions - love that!
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Marcella,

"The Manual says that Stage II should start at Session 11 and can do so when the child has reached 90% weight for height weight restoration. Hard pressed teams who, lets face it, may well still include some who are not genuinely agnostic as to cause and believe that individual autonomy is vital even at an early stage may well prefer to stick to the letter of the manual rather than take time to really explore whether an individual is ready. "

I will have to ask our nurse in Scotland who is qualified in 'Train2Treat' if moving to stage II is routine at Session 11.

This flies in the face of Kartini, who suggests - albeit with young patients - that parents should not hand over supervision of eating until patients are on the point of leaving home and will be living independently.  I see no reason why all adolescent patients should not be supported in this way.   I guess that stage II only hands over a very small part of eating to patients - such as choosing between snacks which provide enough calories, and I would certainly not rush to hand back full control to a teenager until there were very sure signs of a recovery.  Maybe this part needs clarification.

Jim Locke does not state that FBT guarantees full recovery - he definitely mentioned that what it can do is help teenagers get their lives back on track, and allow them to live a fairly normal life.  I don't remember him saying that recovery meant being able to return to totally normal eating after treatment, so I assume that flexibility with time scales and assessing each case on its merits is what needs to be focused on. 
Thank you for sharing.
Believe you can and you're halfway there.
Theodore Roosevelt.
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evamusby_UK
Apologies for only speed-reading as I'm in a rush.
The minute I see anything that is about a percentage weight for height, I want parents to know it's not ok.
Weight goals are a lot more individual, about more about trying out, and yes,generally any weight lost must be recovered, plus  more for growth.

I recently wrote a blog post about weight targets, and another on the BMI/percentage weight for height craziness, both with lots of quotes from the big names we respect. So that hopefully you can show it to the professionals. Not sure if I'm allowed to link to it here.
Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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evamusby_UK
I have now taken more time to read everyone's so helpful inputs. So glad to read what Ellesmum managed in her situation!

About this rush into Phase 2, it is clear in the FBT manual that it should be seen as 'trials' in giving bits of independence. So we're all on the same page there. So many people talk about 'relapse' when actually, phase 2 was done too soon, too suddenly, too much independence given all at once, with parents disempowered from coaching, steering.

I am intrigued when I read the FBT manual and also Maudsley's service manual for children & adolescents https://www.national.slam.nhs.uk/wp-content/uploads/2011/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf (note that in that manual, they call it phase 3) because there's quite an emphasis on difficulties with parents being over-anxious and reluctant to give back independence.
This, to me, doesn't sit well with the overall family-therapy ethos of parents being an expert on their child and everyone being a team. I wonder if some therapists have taken this 'over-anxious' thing to heart and they think they must overide our caution. So sadly, perhaps we have to convince them we are actually wise and intellligent, and no, we don't want to be controlling our children's meals for ever and yes we really do long for the day we can step back and do other stuff.


Since Toothfairy linked to one of my articles, I hope it's OK to give you these links as they are more relevant to the question of decisions being made on the basis of a weight-for-height percentile:

Is your child's target weight a gift to the eating disorder?

Comparing two methods therapists use to determine a weight target: individualized, or the one-size-fits-all BMI approach. The difference can be huge!

https://anorexiafamily.com/target-weight-individualized-vs-bmi-eating-disorder/

 

Weight-restoration: why and how much weight gain?

On healthy weight for eating disorder recovery. Why weight gain, how much, danger of a low target weight, buffers, overshoot, ‘stuck’ patients.

 https://anorexiafamily.com/weight-restoration-eating-disorder/

Eva Musby, mother, author, produces lots of resources for parents at https://anorexiafamily.com and on YouTube https://www.youtube.com/user/EvaMusby/playlists
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Ellesmum
Thanks for your input and links Eva, it’s these very articles that firmed up my resolve and I share them widely in various groups and encourage people to get your book. 

I think  it’s important to note that starting a phase, trying it, doesn’t mean it’s set in stone, rather that at any point we can ask our children to choose a snack or suggest a dinner but if they can’t make a good decision we try again in a week or a month, we can try loosening the reigns a little but pull back if we realise they’re not ready.    I think for CAMHs to tell a ED kid ‘we’re now in phase 2’ is a massive error, it should be an organic process towards a regular life and that’s basically what I told our team.   Some days now d can ask for something, some days she can’t- that’s all really, what works ok this week might not next. It’s constant vigilance and being ready to change tack at any point.  We’re maybe nine months into consistent food with a significant gain and huge mental improvement but she still struggles, I still sometimes boost her foods by stealth if I feel she can’t make good decisions or she struggles too much,  I foresee this happening for a long time to come, it’s just helping her over hurdles until she can make the leap herself.
Ellesmum
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tina72
I see also a big mistake in the manual that they talk about starting phase 2 at 95% WR. That is in most cases WAY too early. Phase 2 should not start before WR + some time X for brain recovery starting in my eyes.

Thanks for the great links, Eva. It is always a pleasure to have you around here 🙂.
Keep feeding. There is light at the end of the tunnel.
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