Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

I’m sorry that people are having such a hard time. It keeps me hopeful to hear tales of improvement.

i wanted to ask if anyone has experience of the Mental health act for their child? Without giving too much detail, my daughter was in hospital for a year. She was an involuntary patient for some of the time and has been on leave for a couple of months. She has no desire to eat and was following the meal plan because she didn’t want to go to back to hospital. Being at home allows her to live more normally, even if at a low weight and with a liquid diet.

I realise that this is a rather unusual situation. Obviously ‘too out of the box’ as a locum consultant and new approved social worker discharged her without warning last week. She’s already not following the meal plan saying she doesn’t have to anymore.

I have found a couple of cases where this approach has been used successfully. I wondered if anyone has any experience of something similar that they could share, good or bad.

@shedqueen sounds like a very poor decision by the consultant there and it's obviously put you in a really difficult position. I don't have experience of the mental health act so can't offer specific advice on that, but I'd be getting in touch with the team she was under to tell them what's going on. Sounds as though she's still very unwell and still very much needs the accountability. If you can't get her back into the system, you could also consider a complaint to PALS as it really doesn't sound as though she should have been discharged.

Thank you @GrannyRoberts. The community eating disorder service was caught by surprise too. I have suggested a meeting to discuss her care going forward. However, she is an adult and they have been reluctant to engage with us previously. They reduced their involvement with her the day before she was readmitted to hospital….

The requirements of the section provided a safety net in the community and allowed her to have a bit of normality. I’m looking for examples of more creative treatment so, if she continues to lose weight as I expect, I can put together a strong request for a MHA assessment in a week or so. What I don't want is for her to slowly lose weight until she reaches the point at which adult services intervene because, in practice, that’s much lower than for CAMHS.

@Shedqueen No real advice exactly but just wanted to say we are in the same situation- although still under Camhs as not yet adult. discharged last week from a 9 month hospital stay while on long term leave as she is following the meal plan in the community (also no food -liquid replacement diet only)

predictably with discharge and the section lifted intake has immediately halved, as similar to your DD she doesn’t have a strong enough reason to keep going with the plan.

In my experience (following 4x unsuccessful inpatient stays) each time we have been left to slowly deteriorate and they would not intervene in any meaningful way or do a MHA until severely unwell, admitted to hospital and refusing treatment.

it is heartbreaking and frustrating to be stuck in this cycle, knowing where it is heading yet again but not being able to do anything until hospitalisation is inevitable

I’d request a CTO (community treatment order) it basically means she has to have supervised sessions and follow certain conditions like eating the meal plan. If she doesn’t follow them/doesn’t attend sessions etc, they have grounds to section her which may be more then enough encouragement to comply and mean she doesn’t have the ‘I don’t have to do this anymore’ mindset

I can speak from first hand experience of this. She will always probably have some sort of thought pop in much like emotions do. They won’t be as prominent as they once were but they’ll still make an appearance from time to time most likely. Once she’s at a stage like she is now, it’s important that she’s been taught how to cope with those thoughts and how to see both sides of things.

https://peacepathway.org/about-comorbidity

this is a great website about autism and eating disorders that I think would be worth a read for you

@QuestionsAndAnswers123 I think that a CTO is next step. She’s starting to miss parts of the meal plan so time to start that process going. It is so tiring having to fight for everything but I’m sure everyone here feels the same.

Hi all, I hope you don't mind me joining you, although I wish I didn't have to! Apologies for the brain dump, but my mind is doing overtime here.
My DS17 is being referred for DE by the support team at school and his ASD support workers. He has become obsessed with healthy eating (he takes things very literally and feels the need to be in control of absolutely everything). He has decided that fat (especially saturated) is bad and he can't have any. So he has gradually but persistently started to cut out things like cheese, eggs, chocolate, granola bars. He still eats his main meals with us (leaving out things he suspects of being fatty) and when he eats with us will finish his plate. He eats his lunch no problem, and on weekends eats a good amount of breakfast. I am trying to add cream and cheese to meals where I can, to up the calories/fat, but he actually loves learning to cook and he will have a complete meltdown if he spots me adding 'bad' foods. So I can only do this if he doesn't look.
But over time he has gone from a slim teenager to absolutely heartbreakingly thin. I have calculated with WFH score and it's 81.9%.
School and the ASD team are working on referrals, but I am worried he is damaging himself and probably is short on all sorts of vitamins and nutrients. If I manage to get him to the GP, are there any bloodtests that would be helpful to have? He actually wants to study biology and if I can point out a scientific view of what he is doing to himself, I might stand a chance of getting through to him.

He sounds like he’s developing orthorexia which is one of the lesser spoken about eating disorders. It’s basically an obsession with eating healthy and ‘clean’ foods. I think it may be helpful to point out that all food categories are essential in staying healthly regarding nutrients etc and highlighting that no foods are ‘healthy’ or ‘unhealthy’
are there any multivitamins he could possibly take?
as for the weight part , would he eat nuts or something like avocado , EVOO? they’re unsaturated fats and high in calories which he may be more open too by your description
im sorry you’ve found yourself here :(

I need some advice please about how to get DD 21 to open up to me about her disordered eating and go to the GP. She has been restricting food intake for over a year but I also discovered appetite suppressant tablets and spoke to her friend who said she thinks she's fat. She has always been super skinny and had lost weight in the last few months

Hi everyone - hope everyone is as good as can be. I’ve not posted in a while. It all got a bit much and I felt I needed to take a step back.

DS is doing okay. There was talk before Christmas of him going on the dynamic support register and having a CTR but DS did not consent and after being told it would go ahead regardless nothing happened. The ED team felt it was best they withdrew and we have not had any contact for a month. They did say they wanted him to continue with monthly weight checks but he refused and I’ve heard nothing since.

DS had started to gain weight and increase his intake in the few weeks before everyone stepped back. Obviously I don’t know if he has continued to gain as he’s not been weighed in 6 weeks. His intake is not too bad for him though. Around 1200-1500 calories daily as an estimate. His mood is a little brighter but he still never leaves the house or really engages with anything.

Meanwhile DS15 is looking noticeably thinner (and taller) and has lost 3kg over the past couple of months. His portions have gotten smaller and every meal is critiqued on carb/protein/fat content. Which is really not helpful when I’m trying to maximise calories for DS!!
And DS12 also autistic will now pretty much only eat cheese and pasta. Mealtimes have just become so stressful.

@woodentrain sorry to hear about your other DCs struggles. It is hard being an ASD family. But glad to hear that DS is eating better. We’ve had to take a similar approach and give our DD autonomy, apparently this is not uncommon with ND kids where control is a huge factor.
@Sahiba2024 im not sure how you get a young person to open up. In our case you have to be very kind and empathetic and not criticise or ‘lecture’.
@EllaSaturday Jenny Langley recommended a book to me called Answers to Anorexia. I haven’t bought it yet but it might appeal to your child’s interest in biology and more scientific approach.

@Sahiba2024 I’m sorry to hear about your daughter. No advice really from me if only because I’ve no success in helping my child. However at the start what I did was to create an opening in conversation for her to tell me. I mentioned several times that was I had noticed her eating had changed and that I was worried about her weight loss. She said she was relieved it wasn’t a secret anymore. One of her sisters tackled her directly. TBH, that was what got her talking to me so perhaps there’s nothing wrong with being direct.

@Sahiba2024 oh, her dad went to the GP with her and had phoned first to tell them about the concerns

Thank you. Did she engage with treatment after the GP visit?

@Sahiba2024 the GP referred her to specialist services and she ate with me during the 12 weeks until she had an appointment with specialist ED service. Looking back I should have gone harder with a proper meal plan (there’s lots on line). I also regret that we didn’t use a private dietitian or‘ therapist during that time as she was motivated to get better at the start and the disease was much more entrenched by the time she was seen by the NHS. She did engage at the start poor lamb. It was only later that things went really badly.

@shedqueen thank you for sharing. I'm sorry to hear things have got worse

Hi it's really difficult once they're over 18, your dd sounds very seriously ill do I would do whatever you have to do to get her to a Dr. She needs bloods, basic observations and an ecg.

You could ring BEAT for some ideas and support.

Unfortunately denial is a part of the illness so she will likely tell you there's nothing wrong, she feels fine, you're over reacting etc.

Does she live at home?

Ella your ds sounds like he's really unwell as well, to me it sounds like anorexia has sneaked in and he's now under its spell.

As above he also needs to see a Dr and I'd ask for a referral to the ED team.

If you can use the autism to your advantage so give him as much information about the benefits of fats in his diet how fat is essential for brain development etc. If you can find a dietitian who is willing to work on a meal plan with you who also understands autism and anorexia that would be perfect.

In the meantime cram as much double cream into everything as you can.

She didn’t end up at Arc. They assessed her and decided it would not be a good fit. She’s very quiet and self contained. They felt the cohort they had at the time would mean it wasn’t a good environment for her and she might learn behaviours that we’ve avoided so far.

CAMHS have had her in a number of times a week to try and replicate some of the intensity of day hospital. She sees her keyworker and nurse and we have family therapy every week. She’s also had ad-hoc sessions with the dietician and OT.

But she was readmitted to the children’s ward for refeeding last week. A month after last time. I can’t bear to leave her there, so I’ve been in again too, sleeping on those awful chairs in a room full of poorly kids.

She’s now been read the riot act and told they’re on the verge of referring for an inpatient bed and will section her if necessary. They’re also looking at prescribing, probably olanzapine. They did a sensory profile which showed some significant differences and are rushing through an autism assessment.

She’s home now and is following the hospital meal plan ok.

I’m in bed crying which is where I keep finding myself.

Oh JoyousCyanCat, I’m so sorry. We’ve been there and it is so hard when you’re trying to help somebody so poorly. But in our case staying out of hospital was the right decision for our autistic.DD. So if your daughter is sticking to the meal plan then that is a really good sign and hopefully she can continue to do so. It may take longer to recover but hopefully her recovery will be sustainable.

If you haven’t got it already, I would recommend reading “skills based caring for a loved one with an eating disorder” by Janet treasure. And maybe sign up for some workshops at the Charlie Waller website. They have some on autism and perfectionism which are very helpful. You also meet people in the same situation as yourself, which I found helpful.
@Curlyhairedassasin how are you and @Mummyoflittledragon and everyone else? X

Thank you.

Does that book take a different approach to Eva Musby? Her approach has been entirely unsuccessful for us and just put pressure on our relationships.

@JoyousCyanCat I'm so sorry to hear that. I do hope you find the help and support you need.

Haven’t been on for a while, everything was a bit overwhelming. Just seen my post from a year ago and we’re still in exactly the same place. Sorry to see many new names here, hope things are getting better for the ones I remember.