To think we need to change how we treat Anorexia

[S3aH0use7337]

My dd has suffered from this disease since lockdown. It has had a catastrophic impact on her life. Part of the reason she has been ill for so long is that the traditional way of treatment relies on family therapy. My dd has autism and this style of approach with parents being in control just didn’t work for her and often doesn’t with autism. Research shows autism and Anorexia can often be linked. My DD’s Anorexia wasn’t picked apart and she wasn’t given any coping strategies that suited her or proper specialist support just FBT. CAMHS pulled back from FBT when it clearly wasn’t going to work but didn’t have any ideas of what else to do and just tried to make her focus on other things with the idea that real would make her suddenly decide to get well.🤔 No tools were given to do that .The anorexia got more and more imbedded . Because FBT is the default treatment they were too scared to take the bull by the horns and try anything else. Because beds in units were in very short supply she just ping ponged in and out of paed wards without specialist care and the disease was left to get more in control of her life. I saw so many other young people in the same situation with trauma and ptsd becoming common.

Under adult services she has tried a different style of treatment with some success. It’s hard though because she has been ill for so long. I don’t understand why it isn’t tried earlier under CAMHS.

In addition to this is the issue re how adult sufferers are accessing care. It’s shocking but the iller you get the less help you seem to get with some areas now discussing palliative care instead.I have added a link which explains the truly shocking state of play at the moment.

So AIBU in thinking the whole area needs a massive rethink starting with a look at the FBT or nothing approach for young children, links to autism and the shocking struggle to access treatment as adults?https://www.theguardian.com/commentisfree/2024/feb/25/illness-worsens-scandal-eating-disorder-treatment-england

FBT worked for us first time and not in relapse. FBT is exhausting

the autism/anorexia link may or may not be the case - but what does it matter if there is no help for either?

In desperation, after being sent home from A and E, we did ketogenic. I had read some interesting studies about keto and brain health; in bipolar and also anorexia. DD was willing as it meant she could control and still maintain weight

blow me, it worked. She is doing ok now. If she feels like relapsing, she has a few days keto.

i told CAHMS how we stopped the relapse and to look into it as there are some studies about it but they just looked bemused.

I have asd and had an eating disorder from a young age (only mildly affects me now)

I am from a very disfunctional family so family therapy would have been horrific for me.

I thankfully improved as I got older and learnt more about what being healthy means.

I can see how other focuses could help if it was quite mild/early stages .

A woman I know who's anorexic and has asd whomanages through having a set food routine. She eats the same foods everyday at set times and never deviates. She can't prepare her own meals either. I wouldn't describe her as cured but she eats enough to maintain a healthy weight.

@S3aH0use7337 just wanted to say, my daughter (15) is currently under Maudsley and we have been doing FBT for 18 months, with some success but stuck.

She will shortly be starting RO-DBT which sounds a little like MANTRA so perhaps is an alternative for under 18?

I'm not sure how widely this is available across the UK though

I also think just leaving adult sufferers to die with nothing because they are difficult to treat is not ok either. It’s barbaric and wrong particularly if part of the reason they’re so ill is crap or next to no treatment when younger.

That sounds encouraging. Maybe things are slowly changing.🙏 The other issue re acute adult sufferers just being given palliative care is shocking. It can happen to anyone and sufferers want to get well.

I'm autistic and currently in an inpatient ED unit. I've been here 15 weeks, with some time to go yet.

I'm 48, definitely not a teenager or young woman, so FBT would not be used. But my community care before admission was beyond awful. They threatened to discharge me after just 3 sessions of CBT-E because my ASD meant I was struggling with it. And after that, the care just got worse. They refused to make any reasonable adjustments at all.
Before I was admitted they hadn't seen me for 4 weeks and told me over the phone that they didn't consider me to be at risk (my BMI was in the 14's). The inpatient team disagreed and said I was at risk of re-feeding syndrome and definitely needed a bed.
I'm lucky that I have a great GP who recognised how unwell I was and advocated for me, but also understood autism.
My time with the community team was incredibly distressing and definitely made me deteriorate. I told my GP I felt I was being left to die.
This admission is one of the hardest things I've ever done, but I'm thankful to the team here, as I was becoming very unwell, with absolutely no help from my community team.

So I'm also not convinced just food is enough. DD had an ED with purging for 2 years. Her weight was fine. FBT as in just being told 3 meals and 3 snacks, nothing else.didn't work.
She then started loosing weight and developed "typical" anorexia. With CBT-E, which she started at her lowest weight, she is slowly improving.

I agree options should be available. If one cancer treatment doesn't work, you try something else.

Exactly you wouldn’t give a child chemo over and again if it didn’t work, for years.The lack of attempts to look at and try other options is really poor and not helping those who end up in adult services as it puts more pressure on the limited resources there. I don’t get why my daughter couldn’t have had a child version of what she is having now after 1 year of failed FBT or even after the second or third year!

I completely agree with you there.

EDs have the highest mortality rate of any mental illness and a similar mortality rate to leukaemia. I also wonder if this was illness that affected more boys/men than girls/women if there would be more research and funding.

I have often wondered that too.

I completely agree.

‘Just food’ is certainly not enough. Weight restoration and establishing regular eating should be a first phase of treatment. Without it, therapy won’t be effective. Unfortunately, under resourcing and poor understanding means that weight restoration is seen as a fix, and so people relapse, cycle through other ED’s, etc. ED’s are dangerous at any weight. We also risk leaving people having gained weight but without alternative coping mechanisms to deal with that. ED treatment is woefully inadequate.

Absolutely this.

ALL the evidence is for early intervention, yet services allow ED’s to go untreated for years.

I haven't read your post but child eating services ( when I eventually got an appointment) told us to sit down and make her eat 3 meals and snacks and gave us a food list .
It had meat and yogurt in it and she eats neither and also Einstein don't you think we have tried all that .

Honestly I was shocked , literally is that all you have .

I waited so long and hung on to hope that she would get help and that was it !!!🤦‍♀️🤦‍♀️

Dd also has high functioning ASD and this wasn't even mentioned or considered .

I feel the nhs just look at things so separately and never have a holistic approach to helping mental health issues .

It's useless .

My daughter was diagnosed with ASD at the age of 8. At the age of 10, it was agreed by CAMHS that she has a 'PDA profile', so even typical ASD strategies don't apply.

She's always had restrictive and repetitive eating behaviours because of her ASD, but first developed signs of an eating disorder during lockdown. She's now 15.

She was back under CAMHS (regular clinician, not ED specialist) in 2022, who discharged her after a few months when she gained enough weight so could get out of having to go. She was referred back under an emergency referral at the start of 2023, when she was down to eating one small thing average every 3 or 4 days. They did the usual on her first appointment, tried to scare her into eating, telling her how severe the consequences are, and gave a meal plan of 3 meals, 3 snacks and sent us away. When we went back two days later and her weight had dropped further and she hadn't eaten a thing, they looked at admission. Her potassium levels were so low they said she was hours away from a coma. Her core body temperature was 34.7. No bed could be located for her, so instead she was put on bed rest and we had nurses visiting for 1.5 hours 4 times a day, and started FBT.

As a single parent to her and a more severely autistic young adult, I'm broken. We've experienced things I wouldn't wish on my worst enemy. I can't close my eyes without hearing her screams, without being able to feel her in my arms as I laid night after night cradling her as she sobbed and fought.

On several occasions, she made it clear that she was not comfortable that her main nurse that we saw for our three times a week appointments with CAMHS (usually at home but did progress to clinic) was male. She requested a female. But apparently there was no alternative available.

For six months, we had zero weight restoration. Every so often she'd gain half a lb, but it'd be gone again by next weigh in.

Eventually, she was eating enough salad to raise her energy levels enough to do an event she had been desperately waiting for. CAMHS took this as a sign that she was cured, of course.

She was recently discharged from CAMHS, weight restored, but with their opinion that because she was able to gain enough weight to do the thing she really wanted to do, that this ISN'T an eating disorder, this is for attention, for control, and autism related. Apparently CAMHS isn't the place for her, and we've been encouraged to seek peer autism support (that I've been heavily involved with for the past ten years).

I'm broken enough to smile and nod, knowing that before summer, we'll likely be back.

She's now eating - yay - the same restricted one meal a day, that must be Just Right. But she's purging Every Day. She has damage and erosion on her teeth. Her stomach burns from acid. She is complaining of increasing rib pain every day. Of course, she is getting thinner again.

She is begging me for help, but also doesn't want to recover. She is terrified to gain weight. After weight restoration, she was offered no therapy, no other treatment. Just discharge, because autism.

I just don't even know what to do anymore

Just to say it again DD gained weight when she started cbt-E at her lowest weight, not FBT.
So whatever counselling, talking etc helped her despite her low weight and "starved brain". So to say weight gain before anything else is not always the only way.

Came on to say that I think the medical establishment are yet to wake up to the link between autism and anorexia. Implicit sexism has meant girls with autism have been ignored for decades - I remember anorexia being rife when I was at school among high achievers. It's long been associated with 'perfectionism'. How could they have missed this? 😓 all the best to you and your daughter.

My dd also developed purging behaviours as a response to trying to circumvent FBT. She would stay up all night when I fell asleep and do it then, so even supervision in the day wouldn't help. She still has these, to a lesser extent, but the development of a new strand of ED came out of the problems with FBT and trying to control her eating, she wrestled back control by herself and now as an adult in adult services, this is not possible to contain in the same way. There's almost no help for bulimia and other eating disorders which don't respond to FBT and don't even make sense within it (you can't weight restore if the person doesn't keep the food down, even if you control the food environment and feed them).

That said, I feel we are making progress as she herself sees the damage (to skin, to potassium levels, to her heart, to her energy) that this behaviour is having, and has modified it a lot, so change is possible. We have a very supportive non-ED therapist who she is honest with, and that helps.

I've only read the OP so apologies if I'm repeating any points already made, but thank you for bringing this up.

I've had the bad luck to have 2 dc go through this - one was neurotypical, FBT worked for her and within 2 years she was well and healthy again and I have confidence this will remain the case (it was strongly linked to lockdown and some friendship situations at the time).

Her sister is autistic and falls prey to anorexia at times when she is feeling particularly vulnerable. Both times in childhood YPEDS cleared up the behaviours but did nothing to look at the triggers. Only now, as an adult, has adult ED services made some inroads into this and I feel somewhat hopeful that she has some better tools and strategies to cope with the feelings that overwhelm her into starving herself. But why has she had to wait until adulthood for this? And yes, FBT was torture for everyone concerned.

I have spent a lot of time working on children's wards and it feels like there is an epidemic of anorexia amongst teenage girls (very often comorbid with usually undiagnosed / late diagnosed ASD).

The care is rubbish (not because people don't care). Paediatric staff working on a general paediatric ward have minimal training in mental health, we're supposed to be there to support acute physical health and that's what we're trained to do, what we have the resources to do. But these girls are essentially getting dumped with us "to keep them safe" because the services that should exist to specifically treat/manage anorexia/ED don't exist or are stripped back to bare bones. They get so bad they become seriously medically unwell and end up in hospital. So we can put in an NG, monitor electrolytes, enforce bedrest etc. But are we helping these girls to recover from anorexia? I actually think the ward environment traumatises/institutionalises them and possibly makes them worse, especially when we have several admitted at once as anorexia is socially contagious.

General paediatric wards should be at most providing a few days of urgent physical recovery, closely supervised by a specialist eating disorder service until they patient can be transferred into a specialist inpatient unit (or better yet, receive intense support at home). Instead, they wait weeks or even months effectively as prisoners in a totally unsuitable paediatric ward, with minimal input from overstretched specialist liaison services and whilst we don't allow them to lose weight I believe they often become more psychologically embedded in their anorexia in that time.

We see every patient on a ward round every day but there is literally nothing to say to the parents of an anorexic interminably waiting for an inpatient bed. It's just inadequate.

Adding to this depressing picture is the awareness that they may then just be abandoned to die as adults. The outlook for some of these (usually highly intelligent, promising) girls is so bleak it's absolutely tragic and a scandal. There are paediatric nurses leaving the profession because they cannot cope with the moral injury this situation (and more broadly the situation with adolescent mental healthcare) is causing.

I don't know what to say OP only that it's not in your head. Honestly if my daughter showed signs of anorexia I would be considering remortgaging the house to pay for aggressive early intervention from a private provider (do they even exist?). Obviously I'm a bit biased only going to see the worst / most failed, and I think possibly some get good early intervention supported by their GP, but it's a postcode lottery. I don't know what to suggest, there is absolutely no parity of physical and mental health. The situation with anorexics is like trying to treat diabetics with no insulin.

Please at least research this.

once I viewed anorexia as a disorder of a starving brain, it changed everything. I stopped trying to use logic and pleading

https://journalofmetabolichealth.org/index.php/jmh/article/view/84

@BeethovenNinth thanks for posting that, it's very interesting and I can see how (for some, not my vegetarian daughter, that has been going on since she was about 8) it could work. I also agree that eating lots of healthy fats, increasing protein etc is effective, that's been good for us (so easy to end up eating carby stuff if people are threatened by 'tasty' food).

I think the point is that there is not excellent evidence in any part of AN or ED treatment, FBT was trialled with intensive support and in a particular way and I am not convinced this then translates to lots of other situations, as I say, as a lone parent, being the 'baddie' and wresting control of the kitchen back off a 15 year old was nigh on impossible, not least because as the sole income provider, I had to work and look after my other child; it also created a very negative dynamic which again isn't helpful when you don't have another parent or therapist or someone the teen can turn to. In the face of everyone being 'against her', she proceeded to more extreme behaviours which have ultimately proved harder to shift and no amount of feeding changes (as they are just undone days later).

More research on all the different approaches- FBT, keto, exercise/positive body based approaches, intensive inpatient treatments, would really help- what we have is a lot of unsupported parents with a book telling them to do FBT stuff (or printed sheets in our case) and not much else when that fails. We are building from the ground up and it is HARD but in our case there are a lot of other MH issues anyway, and I understand the ED to be a form of self-harm amongst other types of self-harm/trauma.

My family has no experience of anorexia but my chest hurts from just reading this thread. to you all - seems perverse that adults have treatment options that younger patients don’t (but I have zero expertise).

I should just say (in case that all seems too negative) we have had good support from adult services, regular health checks (between once a month and a few times a week if anything goes wrong) as well as therapy/psychiatric support, so if you have a younger child, in our area at least, they are working on the transition from child to adult services and they have been pretty good. My dd is stable and able to participate in college and for the most part, we have a handle on the thing, even if she is not fully recovered.

This. 💯 I gave up counting my DD’s long admissions on paeds after the 20th time. What exactly are you supposed to do in FBT for kids like this after each admission? The cost to the NHS is huge. Every meal and snack(6 in total) needs a member of staff for support for a fairly long time. They also have to do round the clock physical observations and ensure they’re not exercising in toilets . They then need several members of staff and security for an NG feed if the whole lot of unappetising large portions of hospital food isn’t consumed in it’s entirety. It’s traumatic, they try and bolt and it’s poor nursing staff left to manage this with sometimes several vulnerable teenagers on an admission at once whilst they’re supposed to be treating very sick babies and children.

Why are CAMHS not allowed to try other methods of treatment for young people going through this on a loop? Would it not make more economic sense to research other methods? The trauma of going through the above over and again unsupported by proper therapy has a massive long term economic impact to the NHS. It’s so utterly barbaric and outdated particularly when you consider that so many of these young girls have autism, can’t help being difficult to treat and the treatment methods are hugely traumatic for them as autistic young people.