Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

hi everyone!

How is everyone?

LOVE reading your posts @Mummyoflittledragon yoi really are one in a million.

@Weightlossworried how are you doing? You really do remind me of how I felt a few years ago. Happy things aren’t worse, but not sure what the future holds. Have the ED team given you some ideas of what they are looking for?

@littlebabycheeses99 as we keep saying it’s ok not to be ok. A lot of us have felt like calling CAMHs to tell them what we think of them. The whole thing is so crazy for you, and it’s impossible to not care or switch off. I reallt don’t know what I would do if I was you, but please know we are here for you. It is such a crazy time. Like others have said, I would consider trying to get him sectioned. If people could see all of his behaviour they would definitely have to help. Please feel the strength we are sending your way.

@Whooopthereitis another welcome to a fab group that we wish we didn’t ever have to be part of! You will find great support here. Has your daughter lost weight or said she wants to? She seems to be engaging well and I hope she continues to with the ED team. The initial assesment really is your opportunity to make sure you say everything. Don’t hold back, tell them your concerns etc as they may not accept her into their service if they don’t think she has issues. She will no doubt tell them she is fine. Please ask if you have any questions about Monday. It lasts around 2 hours.

Thinking of everyone and sending love to all xx

Thanks @Pearl97 My daughter has lost weight (maybe 3-4kg) - and was slim/athletic to begin with. She will admit there is a problem with her eating as she was skipping meals (breakfast and lunch) and has started avoiding “unhealthy” foods altogether. she has been good so far in engaging with mealtimes properly again, and says she feels better for it, But I know she still thinks her weight is not as big a problem as she thinks I’m making out. That said, having been to see the nurse and GP this week for physical checks and blood tests ahead of her assessment, she’s starting to realise that other people are taking it seriously too.

its hard to say what her motivation is. I’m confident it’s not to do with body image in terms of thinking she needs to be slimmer. Rather, I think it stems from anxiety (she has OCD symptoms that have come and gone over the last 6 months) and a desire to be “healthy” which has blown out of control. She mentioned to me that she avoids eating too much or sweet things because she know that later she would worry about having been unhealthy.

she journals a lot, and since we first saw the GP a couple of weeks ago has been writing down how she’s felt about each meal. She plans to take that with her on Monday, I’ve also suggested she write down other anxiety symptoms and worries she’s experiencing - so she can be sure to discuss them and get the help she needs. I have my own list and timeline on my phone!

the ED unit have warned us that Monday will take up to 3 hours, which will include conversations together (us and daughter) and separately with the team. Then a break for us while they put together a treatment plan, which they will then discuss with us on the day. The nurse at our GP surgery only had glowing things to say about the ED team, so although some apprehension am going into it with optimism that this will be the change and starting point we need!

@Whooopthereitis it sounds like you are prepared, which is excellent. You are also acknowledging you would like help, which is also great. I really hope Monday goes well. It is a long and exhausting process, but it is eye opening too - as saying everything out loud really does help. Please keep us updated. We have all done the initial assessment and it is great you have a quick appointment.

@unbuckle
i think our dc are similar in some respects. Dd didn’t engage unless it was to demand something. All of the stuff from the books and engaging with professionals is likewise very alien. She ignored us mostly and was very rude. She put her nose in her phone or hung with her friends. We were just a resource. The eating together was only instigated once we got the ED coach on board. And dd could only cope with dinner twice a week together. And from 17.5, that dropped off completely. We had a brief time over the summer, where she and I went out for 4pm late lunch perhaps 3 times. Since university, she has again refused to eat with us.

Timing for dd was just fortunate. It was just before Easter in the run up to GCSEs when she reduced her eating to a couple of hundred calories to nothing. And her friends rallied, taking her to a restaurant every day over Easter. Once they dropped off to study, things went severely backwards. In my naivety, I thought things were heading in the right direction. And by the time I got CAMHS involved, they could only do dates on exam days. So we muddled through. But they didn’t help anyway, because dd was too anxious to engage.

It’s interesting that you say your dc can only eat closed packets. I didn’t realise that could be the case. But I imagine, therefore, that individual packs of food work well, like the babybel above? Your posts do seem more relaxed these days. I hope better things are on the horizon.

And I totally agree with you about discharging people, who can’t engage. I get the reasoning. However, if they only ever willing participants, they’re ignoring a lot of ND people and only doing half a job. It’s almost as if there should be a different department for them. Whereas the safety net of sorts then becomes MEED red and possible hospitalisation.

@littlebabycheeses99
Thanks. Yes it was lovely ☺️. The one I helped with eating a while back has had lots of support from me over the years. Her mum had a very strict upbringing abroad and can’t relate to teenage stuff, boyfriends etc. For a long time, that was actually the only support my dd would accept from me (as in dd would ask me to come to her room to talk to this friend or if she was on FaceTime etc). And thinking back, this was something dd and I could bond over a little actually. I hadn’t really thought about it so much. But yes, dd was still in there. As is your ds.

I’m sorry you’re not doing so well. I just want to say (sorry to be kind of negative) that you weren’t getting any support from CAMHS. And it sounds as if your ds didn’t either, because he wasn’t able to. I imagine this is due to fear of loss of control, even if that looks like anger and bravado. I would urge you therefore to put your energy elsewhere. And I think @unbuckle has a great idea to seek GP support.

As for leaving food out, maybe have packets of unopened stuff as well. In case your ds is different from my dd in that regards.

I’ve gtg now. But I just wanted to say @Whooopthereitis, it’s great your dd listened to the nurse. And good luck for Monday.

And @Pearl97 thank you ❤️. Your messages always brighten up my day. I’ve been wondering where you’d got to.

Hello everyone,

There is such a lot going on in all our lives at the moment, but it is great to have such a supportive thread to turn to. Everything seems to be happening at once in my family. My son has been offered supported living accommodation in our local area, but he has also been advised to go back to the ED unit voluntarily (a place is arranged for him on Monday) due to his current danger of refeeding syndrome and for symptom interruption.

My son does not know whether to accept the inpatient offer. I am also unsure if it would help. The unit is some way from where we live and would not really help with his transition to supported accommodation, yet it could lead to a temporary physical improvement, but it would not furnish him with eating behaviours that he is likely to continue on his own in the supported accommodation. He has to give the ED unit a decision tomorrow.

I think a change of environment and more support from a holistic team will help my son. I also know that I need live within easy travelling distance to continue the emotional and practical support. On top of that, my husband is moving from the care home to a supported living complex in another part of the town where I live. This will be a positive step for us all.

At the moment, I feel a bit overwhelmed, so I do not know how my son must feel

@sum12luv
I don’t remember what you’ve said about your dh’s health in the past. And I hope hope the move will be positive for all of you. I can imagine having him closer and in a more home like setting will be a relief for you both.

I can understand why you are overwhelmed by it all. I think this is a very difficult situation to know what is best for your ds. Ultimately, of course, it is his choice. However, that choice has a very large impact on you, with the history of him discharging himself. And not listening to medical advice. And then the pressure on you of having him back, living with you in a very poorly state, and all that this entails.

If he’s so emaciated that there is a danger of refeeding syndrome and he’s being offered in patient, I’m guessing current eating support is the most important aspect to consider. And I agree that until he is in a place mentally to be able to support himself, any changes made in hospital will be short lived.

I do wonder if he struggles with hospital, because it’s the aspect of being ‘caged’ that he doesn’t like / can’t handle. From what you wrote, he didn’t seem to be able to accept the help last time, even though he was adamant he would before going in.

You seem calmer than you have been in the past. And if he goes to inpatient, I’m figuring you won’t be around much to support him. You have yourself and your dh to also think about and you have another ds. Because you sound calmer, I’m wondering if your ds has made progress mentally, if perhaps not physically. Does he have any thoughts on coping strategies? Or maybe the unit could help him with this? Because ideally, he’d get the support from the unit, rather than from you whilst in their care. And I think this is something for him to weigh up.

I know this must be incredibly hard for you. And I can see that you’re a carer at heart. Supported living will hopefully give him the help he needs and offer some practical support. But will it give him help to eat? You say that you need to be local to give him emotional and practical support. What help does he need that he won’t be able to get from supported living and what do you envisage doing? It’s just I am hoping for all your sakes that he will find a way to support himself more. And lean on you less.

And I say this with love, not to harm, he sounds very dependent on you. And I get what that feels like. The coach gave me the confidence to push dd kicking and screaming to be more independent. And it was independence that she was craving. I had to take so many steps back with my dd to get her where she is now. She needed to be less protected and cocooned. And because of the autism (and ADHD), she hasn’t picked things up. Everything needs to be taught. She has a lot of needs. Even just stuff, like refusing to do her washing, so that she learned to do it herself with confidence by the time she moved to halls. It took several months of doing it together before she was confident to do it alone. And in the end, I had to tell her I am here. However, she doesn’t need my help. She knows what to do.

And ultimately, that self-reliance may have been the kick she needed to start relying on herself and be able to move away in halls. And she’s needed little knocks along the way, to get her to rely on herself more. Nothing that would have been harmful. Just natural consequences. She wanted to come home to have a shower and wash her hair the other day, because the hot water wasn’t working. And I brushed that option to one side and helped her think of ways around it, including having a cold shower. Yes, I’m here when she’s unwell. However, she’s chosen to leave home and coping with something little like no hot water comes with the territory. If she can’t cope with the little stuff, she’s going to struggle with anything big.

Maybe you’ve been through all this stuff already with your ds’s. And I don’t want to patronise you, because I’m aware you’re a mum with a lot more parenting experience than me. I’m just wondering if this is something that you haven’t yet done with him, because of his long term ED. I know I wouldn’t have had the confidence to do all this stuff with dd without the coach on my case. I’ve been working on dd’s independence for many months now, and it’s really worked out for us.

@sum12luv absolutely sound advice there from @Mummyoflittledragon
I would second how much the assisted living would support the eating? Do you think that being happier etc and feeling more independent and in control may trigger better eating?

As @Mummyoflittledragon said, ultimately it is his choice, but you have a lot on, so you do definitely have a say.

It is great to read about DH, I don’t know or need to know the back story, but I liked to read the positivity in your post. I really do feel that typing feelings can really help, so whilst the decision is DS’s, thinking of what you think is best is a good idea. We’re here xx

Half term and us being around and encouraging three meals and three snacks including few meals out has meant my dd has gained 1.5lbs this week, she has been having around 1800-1900 calories. Next week will be challenging with back to sixth form

@Worriedmum2026 thats great news. How did DD take the news?

@Pearl97 she was pleased I think. We have just had the call for the eating disorders appointment one on Monday for physical assessment and Tuesday for choice assessment, does anyone know what this will entail?

@Mummyoflittledragon we tried to encourage her to center recovery, but she's too fixated on the idea that she's falling behind her peer group, so we're trying to balance both, but it's really difficult. She struggles with anything online so needs in person teaching, but that's harder to access because none of the sixth forms would take her with only 3 GCSEs, so she's doing a couple more by night classes. That's hard, because she's anticipating them all day so struggles to do anything else and also because she's tired by the evening. She's also doing one a level with her tutor. I just wish she could believe how capable she is, she's bright but she's convinced she isn't because it's been so hard for her to access secondary education.

Generally she's finding it all very tricky at the moment. Making the transition to adult services so soon after coming out of in patient care has been very destabilising. The new people seem nice, but she has to start building up relationships with them so she's gone from a very intensive support environment to one that feels very precarious. She hates her body and is very reluctant to stick to the maintenance meal plan. Add in that I have to go back to work in the next few weeks and it all feels a lot!

I am always in awe of the amount of work that you have put into trying to help your DD and even more so when I hear you've been helping her friends as well. You're a fantastic support to everyone here, so knowledgeable and willing to share. I really hope uni continues to suit your DD, and that her new friends influence her positively.

@Worriedmum2026
It’s great your dd has gained some weight. I hope she continues to cooperate. Good luck with the appointments tomorrow and Tuesday.

@StressedANmum
Bless her, self esteem is such a tricky thing with ED. It’s great you’re managing to get your dd to study in the evenings and the one A level with a tutor. Hopefully next year, things will look very different. As for your dd not believing she’s bright, would looking over old tests / school reports help? Or any friends in education or a teacher at her old school to have a chat with her about that?

My dd had these issues a lot and I used to tell her she’s really quite smart and she’s going to get good grades. She regularly wanted to quit and run away and I did ask school to keep an eye on her, but mainly it was all me. They really had no idea what went into getting dd into school every day.

I can imagine the change to adults is difficult for some. It sounds very different from CAMHS. Hopefully these things will settle for her. Hating your body isn’t uncommon. My dd has never expressed her dysmorphia, but I know it’s there. If this was my dd I’d be having 3 conversations (at different times).

1. This is a time period in her life of feeling this way. She will feel very differently in the future.
2. Talk about eating like this to keep her strength up to do all of the things that she wants to do. That you can see how hard she’s trying. And you’re here loving and supporting her.
3. Her exams are only 7 months away and once she gets her exams she will be able to follow her path. And be where she wants to be. She can do it. You know she can.

Thanks for your lovely message. Dd is doing really well and it seems she has some great support. She’s even got a boy, who sounds really nice taking an interest in her. Getting a boyfriend is the next step on her journey. She’s not had a proper grown up one just yet.

You’re doing really well and are offering your dd amazing support. Just keep on doing what you’re doing. It will all be worth it in the end. I get it’s so tough right now.

Does anyone else’s child struggle with temperature control? When she was eating nothing she was understandably always cold. However now she’s eating more she fluctuates from cold to hot. It’s almost like she’s having hot flushes. Anyone else experienced this?

@StressedANmum must be difficult for your DD getting used to adult services and worrying about her education at the same time. It sounds like the emphasising recovery right now is the key. She will be able to do whatever she wants when she’s better. It’s so hard to reassure our young people they are capable and bright when the ED has destroyed their confidence. Mine is very similar and withdraws from studying because she’s afraid of failing and thinks she doesn’t deserve a good life or good outcomes. Convincing her otherwise and to keep going is a full time job.