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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Poppybat
After months and months of waiting, my daughter finally got to see someone at CAMHS in October. Since then, we’ve been to appointments every couple of weeks. Each time we go in, she’s weighed, her blood pressure is taken, and we are asked “how are things different to last time?”. Quite often they aren’t different, she’s still struggling and nothing has changed.

Shes still losing weight. She’s now down to just under 83% weight for height. 

But not one of the appointments has attempted to engage her on how to move forward. We’ve been given a handout with a prescribed meal plan, but there haven’t been any conversations about how to approach this, why it might be difficult, or how she can begin to change her mindset. 

Am am I wrong to be expecting this kind of help? I was hoping there would be some engagement from the service to get her talking, to try to address why she feels she’s so huge and needs to lose weight. She wants to get better, she’s asking for help. But the “support” from CAMHS feels no better than the monthly weigh-ins she was getting from the GP while she was on the waiting list to be honest. 

I don’t know what kind of support or help other people get, or what the treatment programmes really look like via CAMHS, so I don’t know if she’s missing out on anything or whether there’s anything I should be asking for that would help. I just know that a meal plan without any kind of discussion or analysis of how she ended up at this point isn’t going to help in either the short or long term, as it’s not getting to the root of anything, just managing an immediate physical situation. 

Any advice would be gratefully received. 
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Torie
Hi Poppybat, the support people get is very varied, even within CAMHS with similar age, same sex kid.  In general, though, the heavy lifting has to be done at home, with heroic efforts by exhausted, terrified parents who have no idea what they should be doing, where to turn for help, or what to expect.  Ideally, the support you get will be useful to you as you make your way through this difficult journey - the best help I got, for example, was when an angel doctor told my d she needed to eat whatever I say she needs to eat.  (That was super-lucky for us and sadly rare.)

You said, "there haven’t been any conversations about how to approach this, why it might be difficult, or how she can begin to change her mindset....  I was hoping there would be some engagement from the service to get her talking, to try to address why she feels she’s so huge and needs to lose weight."

Unfortunately, it is generally not possible for them to change their mindset other than by returning to a proper weight so that brain healing can occur.  Similarly, her feeling that she's huge and needs to lose weight" is a symptom of ED and generally resolved by weight + time.  Talk therapy has not been found useful according to the research I have seen.

Have you read Eva Musby's book or watched any of her videos?  Another resource many find useful is the Lock and Le Grange book Help Your Teenager Beat an Eating Disorder.

I'm not sure if that's the kind of response you were looking for, so please feel free to ignore if that doesn't speak to you. xx

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

Hi Poppie, if she is still losing weight I suggest you ask for a review mtg with cahms to discuss the way forward. I read somewhere that there is no point in talk therapy until your child is about 85% wfh as their brain is too malnourished and certainly that has been my experience. Until we reached that point, sessions with the community eating disorder service were focussed on problem solving, and involved my D and me. Over the last few months, I have consistently emailed the psychologist a couple of days before the session in confidence to update them about how the week has gone and give my view as to the next steps ( thanks@Enn for that advice). 

What was important for my D was the expectation that she gain at least 500g per week. Has the team explained that to her? Is there an agreement about what happens when she loses weight? 
Has she stopped all exercise? We found we needed to stop everything including going on shopping trips. Sounds like she is motivated by school and maybe that is something you can use to your advantage. For example, the expectation that she eat sufficiently to be allowed to go to school ( needs the fuel). Studying also uses up lots of calories and needs to be considered like exercise. 

is your D being seen by the community eating disorder service ( as opposed to CAHMs)? Maybe at the review meeting you could ask who else is part of team and whether your child would benefit from seeing any other members. We found sessions with the dietician useful ( but you need to make sure they are on message).

what I found helpful was to state here what my D was eating and experienced members of the forum advised me where I could fortify her meals). Maybe that is something to consider. Xxx

Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
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Poppybat
Thanks both for your replies. 

I think my my biggest concern is that she’s still losing weight. I’m aware that the refeeding is going to be down to me, but I’m not sure that doing this without any kind of therapeutic intervention is going to stick long term. Throughout the year her weight has dropped consistently - at the point she first asked for help it was at a point where her wfh would have been considered only slightly on the low side, not where it is now.
The GP who referred her mentioned things like CBT which I’ve had myself in the past (not for anything ED related) but now because of her weight having dropped she can’t benefit from it? So we missed out on the right time because of waiting lists? 

I’ve read a lot of stuff over the past year, and know this is going to be a long journey, I’m just not sure what she’s meant to be getting from going to CAMHS. She gets super anxious before the appointments, then nothing actually happens at them, and we go on as before. I’d seen the meal plans online before we even saw anyone, and was doing my best to implement them, but she constantly tells me that “other people eat a lot less than her” at school etc and I I don’t have the expertise to know the best way to have conversations with her about these things without triggering or making things worse. I’m constantly worried about saying or doing the wrong thing. 

I think im just feeling very alone with this, and worried that anything I try to do will be wrong. She does want to get better, which I know is a huge positive, but there’s a big gap between wanting to and being able to, and it’s that gap I was hoping CAMHS would be able to help with.
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teecee

CAMHS seem to offer different things dependent on your postcode. We are in Yorkshire and initially we had someone coming to the house to monitor our D (weighing/blood pressure etc). We saw the clinician who formally diagnosed her and prescribed vitamins initially and gave us a form to go get bloods done at the GP. 

After that we had to wait a few weeks for the dietician to get a space for us and then we saw her weekly/fortnightly then monthly. Also got referred for CBT but this didn’t start for a couple of months and only lasted about 7 weeks until she was away from crisis. 

I would view CAMHS as a crisis service to prevent hospitalisation rather than helping sufferers to fully recover. That is left to us carers sadly. Shocking state of affairs in this country 🙁

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ValentinaGermania
Poppybat wrote:

I think my my biggest concern is that she’s still losing weight. I’m aware that the refeeding is going to be down to me, but I’m not sure that doing this without any kind of therapeutic intervention is going to stick long term.


To be honest, that is what it is going to be. No therapist will cook for her or sit with her until the meals are eaten. No therapist will give you a meal plan that will make her gain exactly 1 kg per week because that is very individual and you will need to find out how much she needs to eat. Some gain with 3000 a day and some need 8000 calories a day.

How can we help you to increase her intake? You say that she is not gaining at the moment, are you sure she eats enough or is there a possibility that she is purging (vomiting) or exercising secretly?
So first step is always to close all ED loopholes and to supervise all meals and snacks like in IP. And to find out how much she must eat to gain 500-1000 g a week. We can help you with ideas if you tell us what she is eating at the moment.
Keep feeding. There is light at the end of the tunnel.
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melstevUK
Hi Poppybat,

Sorry that you are getting such non-existent support.  I would ask to speak to the consultant psychiatrist - get a meeting scheduled with him/her through the secretary and don't be put off.  Your d is continuing to lose weight because the clinicians involved are not giving her the message loud and clear that she has to follow the meal plan and that you are firmly in charge of what she eats.  This process is called FBT - family based treatment.  I think it has a different name in England but it the NICE recommended intervention for children and teenagers and CAMHS should be implementing this now.  You have the right to question the consultant to ask why they are not using this and that your d is losing weight and what are they going to do about it?
Your d cannot choose to eat - she needs everyone involved in her care that she HAS to eat so that the voice in her head can be pushed aside.  Without this approach she will not be able to eat by herself.  Getting your head around the illness is the most important aspect of understanding an and how to manage the condition - but there are still a lot of clinicians around who don't understand it and who haven't had appropriate training.  

Please get that appointment urgently - and go along by yourself without your d.
Believe you can and you're halfway there.
Theodore Roosevelt.
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Poppybat
I understand entirely that a therapist can’t sit with her and make her eat... that’s my job and I’m doing my best. The thing I’m struggling with is the thoughts and words that go along with this. Simply telling her she has to gain weight is one thing now, making her believe it and understand it is something else entirely. And this is what I fear will prevent recovery happening.

The NHS site tells me that CBT should be available, and our GP said this is what would happen, but after months on a waiting list for CAMHS and about 10 weeks with them, nothing like this has even been mentioned. 

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ValentinaGermania
I know that you are already doing your best to get her to eat but Cahms should support you with that and Melstev is right, you need to speak to the right people there. It is their job to help you that she starts to gain now. The problem is often that nobody there has been in your shoes and they simply do not understand what refeeding in real life means.
She does not need to believe it or understand it to get better. She cannot do that at the moment, she has anosognosia (https://en.wikipedia.org/wiki/Anosognosia) which is a symptom of AN. My d refused to see she has an ED up to about 1 year after WR (weight restoration). Food is like chemotherapy for her. You do not need to know why the chemotherapy helps or what is in the dosis to get better.

Family therapy is not FBT (Family based therapy). Please check that on the NHS site. CBT sometimes helps but not at the start of refeeding, they need to be able to engage in that therapy and that can only come with WR and brain recovery start. And then often is not needed any more.
Keep feeding. There is light at the end of the tunnel.
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teecee

Poppybat wrote:
 
“I’ve read a lot of stuff over the past year, and know this is going to be a long journey, I’m just not sure what she’s meant to be getting from going to CAMHS. She gets super anxious before the appointments, then nothing actually happens at them, and we go on as before. I’d seen the meal plans online before we even saw anyone, and was doing my best to implement them, but she constantly tells me that “other people eat a lot less than her” at school etc and I I don’t have the expertise to know the best way to have conversations with her about these things without triggering or making things worse. I’m constantly worried about saying or doing the wrong thing.”


Oh my, please know that you certainly have the expertise in in terms of your D. You may not feel like it now but you have done an amazing job raising your child. You’ve just had very bad luck in that she fell ill with this most vile illness, which is not a choice and certainly no ones fault. Trust in your own ability to raise and feed your child. We felt that going back to basics helped - toddler talk during meal times....it worked weirdly. She was 16...
We all do or say the wrong thing.....it’s feedback not failure. That’s how we all move forward. Our journeys are messy squiggly lines not linear and that’s ok 😊

Firstly being a brick wall will help massively in terms of conversations with your D around food/body/ED issues. Do not engage. Have boring stock answers and repeat like a robot. Yes they get frustrated but eventually the ED chatter will become less.

The anxiety she feels is normal and will remain for some time because support threatens the ED. Sometimes the anxiety can really blow up and look like poor behaviour when really she’s just incredibly frightened and needs someone to advocate for her. She may not want that but she needs it. That falls to us to do some of the fighting when we’re already exhausted and frightened. So, so wrong on all levels but necessary. 

Secondly food is medicine. The food must go in first. Life happens second, including therapeutic intervention. I was shocked at how long it took for the brain to show signs of real recovery after restriction. Many many months are needed. We are 2 years in and my D is now able to commit to therapy and revisit the trauma to overcome it. It’s making her wobble and anxiety is high but she would not have been able to continue if we’d tried this even a year ago. 

Keep taking a day at a time. We recorded days in colours...red for really bad...yellow for mixed days and green for a positive day. A great trick from Tina....it really helped me keep perspective at the beginning. 😊
Virtual hugs to you. X

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Torie
I found this video really useful in terms of knowing what to say.  I did not talk to my d about gaining weight - I focused on what she needed to eat this meal or even this bite.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Poppybat it is worth as Melstev has suggested asking the team psychiatrist what is actually happening for your D. I am sure you are doing the very best that you can, and despite this feel it is still an uphill battle.
CBT for eating disorders does not have a lot of evidence in teens, and I wonder if she is not vested in recovery whether this is the best way forward for her. I know it makes sense that her agreeing to gain weight seems like the logical way forward, however agreement to get better, and even agreement to weight gain does not necessarily need to happen for recovery from eating disorders (as strange as it may seem). One of the reasons why so many parents here support FBT is that it only requires their investment in their child's recovery rather than their child's investment. You get to decide that she needs to gain weight, you get to feed her. It does not require any analysis as to why she started restricting in the first place. The weird thing is that FBT has the highest rate of recovery despite not involving the child in their own recovery. The involvement of the child early on  in the therapy is not necessary at all, and there are some versions of FBT (separated FBT) where the child does not participate at all, rather they are given some supportive therapy only. 

You absolutely need to get on top of her continuing weight loss, and it does sound like what ever is happening now is not working at all. Can we support you in some ideas about how to get her eating better? 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
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MKR
Hi @Poppybat ,

Great that your daughter seems to be getting tired of ED and actively asks for help (mine is still well in denial). But you are right to be worried about her still being below weight. 

It can be frustrating waiting for appointments to start, then taking the time and energy to attend them (I mean going through all the anxiety before each session), only to find progress is minimal or slow. I totally get you, because we had our sessions almost entirely parent-only, nearly no engagement with the child. At the introductory session, our D was triggered, had a tantrum and they refused to see her until certain wfh. I was shocked but now I understand why.

I felt the sessions were more for the benefit of the father, to hear facts from the therapist and not from me, as I had already read up on refeeding. For tips, they simply emailed me the link to F.E.A.S.T and ATDT (👍). They also insisted on us being on the same page or at least having a similar approach; it would have taken us forever to agree on our own.

Overall, I felt seeing the ED therapist was just having our progress monitored for anything unusual that would merit higher level of care. 

On the other hand, I think you have the right to ask questions, rather than the other way around. For eg. for tips on how to increase the weight gain. During our "meal in front of the therapist" we got helpful feedback that the meal was not caloric enough. They also spotted some typical ED behaviour, like sitting on the edge of the seat and told us to challenge it.

I suggest you make a list of questions for the therapist. We usually emailed them in advance. You can list the challenges from that week. You can ask them what the expectation is for next week. I personally didn't like the answer "you need to work out a way" - as @PurpleRain had said, we wish there was a protocol, like for other illnesses, so we are not driving without a map.

You are within your rights to be assertive. That way you will feel you are making the most of the service.
Mum's Kitchen

14-y-o "healthy living" led to AN in 2017 and WR at 16. Current muscle dysmorphia.
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MarcellaUK
Your GP is right, CBT-E (specialist CBT for eating disorders) https://www.cbte.co is an evidence based approach. Indeed it was the only approach considered to have enough evidence behind it to be included in the first set of NICE Guidelines. This was, though, for adults. The team who developed CBT-E have drawn up guidelines for its use with adolescents but I don't think it is common for CAMHS teams to offer it. As with other forms of CBT it does involve tackling the thoughts felt to be behind the "drive for thinness". You could ask your team if they are trained in CBT-E and if so whether they would offer it to your daughter but if the answer is no I would not necessarily be surprised, or, at this stage, very disappointed. In adolescents there is now far more evidence for Family Based Treatment (a specific manualised treatement) or the UK modification of it by Prof Eisler and his team FT-AN in which the parents are supposed to be coached in how to support their child to regain weight and health. 

The team where I used to live are VERY keen on CBT-E. They adopted it early, have close links to the founders and even teach it to others. They don't usually offer it as a first step either to adolescents or,  now that they have a day patient unit, to adults at a low weight. They help patients to get to a healthy BMI either with the support of their parents or, for over 18s, with supervised meals and group support in day patient and then offer CBT-E as a follow up. 

It sounds as if your CAMHS team think they are supporting you to refeed, but they are obviously not doing a very good job of it yet. I would do as Mel has advised, ask the senior clinician what approach they are using, what their training is, whether they are able to offer other support (some teams have staff who will come into the home to support meals) or other approaches including CBT. The status quo just isn't working 
Fiona Marcella UK
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