Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@wandawaves I'm not dealing very well with it emotionally. I'm extremely anxious and finding it hard to think about anything else. I've immersed myself in ED books, research, courses and support groups - trying to become an expert so that I can help DD I guess, given we're mostly being left to our own devices. I'm also on low dose ADs, and have been for a while. I talked to the GP about increasing these, but she advised against this as she said the anxiety I was experiencing was a normal response to a very difficult situation, so they wouldn't necessarily help. She basically prescribed time off work, and trying to look after myself in other ways - walks, exercise, reading, interests, seeing friends - in the small windows when DD is at school or doesn't need me. Trying to do some of that, but finding it hard to relax. Planning anything is hard too because this illness is so unpredictable. I feel like I'm in an ED bubble and have lost track of the normal rhythm of life. Any tips on staying sane for those who've been doing this longer would be much appreciated!

@wandawaves In the early days, it was mainly sheer panic. I remember that lost quite a bit of weight from the stress (all back now esp when I eat alongside DD and want to encourage her). These days (about 2.5 years into this journey) I am a lot more flat. I get upset when she doesn't eat or gets violent, of course, but on the whole, things don't get to me that much anymore. Neither the good things (I am always suspicious about it's lasting power) nor the really bad periods. I just mainly 'function' and carry on as good as I can. I found DDs second admission really hard (the first time on NH feed) but I noticed I was a lot more level headed than during the first admission when I couldn't really function out of sheer angst and panic. I think you adjust after a while. I just recon the human brain works like that. I don't really get time to look after myself (DC1 has also complex needs too, DH and I do not get on and I do not find him supportive, plus I work and have no family support) but if you can carve out some time for yourself away from the ED crap, I think this is something really important to do.

@PermanentlyExhaustedPigeon80We are in SW London so I think that helps - we've definitely hit it lucky but that also reinforces how much our NHS needs more funding. I find having work to go to is a relief but I'm also worried about that as I'm having a lot of time off school too.

@PermanentlyExhaustedPigeon80 my DD is also yr 8. We did half days most of yr 7 as she will miss less academic sessions that way (as opposed to two full days in school and three out) however this intensive management has had a huge affect on our mental and physical health (not to mention thrown spanners in at work), and in our case has done sweet f.a to resolve her weight. We both worked (DH mostly at home) through it, and we are potentially looking at this requirement again. This time I will take leave/consider a career break as work already pushing me to take on an extra day to cover my extended lunch breaks and I work til 1830 anyway which means dinner is always so late. Can’t win!

That sounds really hard @Glitterfarti - I don't know how anyone continues to work while supporting a young person with an ED. It's so all-encompassing.

We've actually had a really good 24 hours. Dietician appointment yesterday morning was very helpful, and we've now got a personalised meal plan for DD, which she seems much happier with. It's still lower calorie than she needs for weight maintenance, but I think the plan is to build up to that gradually and avoid scaring her into cutting back again. The Dietician was very good with her, and talked a lot about how the starve-eat-starve cycle was damaging her metabolism, which I think has had an impact on DD's motivation. So far, since yesterday lunchtime she's had all the meals and snacks on the plan, which is obviously amazing, but feels too good to be true. I want to be happy, but I'm just waiting for the ED to bite back, as it were. Even DD said something along the lines of 'I may as well eat what I can now because it's only a matter of time before it comes back'. Is this kind of pattern common (a few good days followed by more bad ones to sort of make up for it), or is this my DD's own special flavour of ED? I don't know how to help her break the cycle, which is so hard. She's actually always been a bit like this (without the associated eating behaviours) - a few positive, constructive, happy days, followed by a lower period. Beginning to wonder if there might be some bipolar stuff going on...

I'm pretty sure things will continue to be okay until she starts to worry about school tomorrow evening, and then everything will fall off a cliff. We have a good plan in place for next week, which DD has agreed to - half days mainly - but it seems to be that even the thought of school an be a trigger to set off restricting.

Thanks everyone for the tips and the solidarity, it's just the hardest thing as a parent isn't it. I do have 'me time' that I stick to quite strictly... about 18 months ago she had her first mental health admission in hospital and I did NOT cope with that at all... again I think it was that I saw it as a huge step back... I just cried and cried for weeks, months actually (not in front of her), so I finally tried counselling, and when that didn't work, antidepressants, and I also put in place all my 'me time', which is exercise, so helpful in several ways really. So because I don't want to go back to that terrible, teary place, I do prioritise time for me as well as looking after DD.
I've also had a google of support forums in my country so have found a FB page, and the organisation also has a counselling service so I could try that too I guess.

@PermanentlyExhaustedPigeon80 how long did you get off work? My GP has just done 2 weeks to start, but is happy to do more. I only have 4 weeks of personal leave accrued though. I could probably use my annual leave too if I needed, I've got a month or more of that too. But then I don't really want to use it all now, because what if DD gets worse again in the future? Then I'd need paid leave. I can't do unpaid leave, I don't have any financial back up.
I'm so glad to hear your DD is eating at the moment, I really really hope it continues.

Well my DD continues to refuse the refeeding process. She said she is happy to go back to one meal a day (rather than no food, or just a snack a day, which has been her intake for the last month or so). I told her I'd like for her to try for 2 meals a day, and possibly one snack. I don't know. But for the moment, I am making the food she does have, and piling in the calories. I am scouring the supermarket shelves and reading nutritional labels to try and find food that is 1) acceptable to her and 2) high in calories.

On the light-hearted side, my boys are super happy because they get so much of her yummy leftovers 🤣. And I swear I'm going to put on weight also because she has so many yummy snacks in the pantry and late at night sometimes I can't resist! 🤣

@wandawaves I had 8 days initially, then a review with my GP, who signed me off for 4 weeks. Her rationale was that I could always go back sooner if things got easier, but at least that gave me time where I could focus on DD and not worry about work as well. My boss is being very understanding, and I'm lucky that I work in the public sector in the UK so have a generous amount of sick pay. Sorry to hear you're more limited in what you can take - that is an extra worry / pressure you don't need at the moment. Can your workplace offer more flexibility, e.g. reduced or compressed hours, working from home etc. to help you be more available for your DD when she needs you?

This whole experience has made me reflect on what I do for work more generally, and I'm going to do some sums to see if I could take a step down in order to prioritise other areas of my life for a while. Having had some time away from work has made me realise there are lots of other things I want to do!

@PermanentlyExhaustedPigeon80 yeah I actually WFH already, so I am very lucky there, as my team manager lets me do whatever I need to do. If upper management knew though, I'd be screwed! And DD is the reason I started WFH too; a few years ago during a particularly bad depressive stage, her psych called me and advised not to leave her unsupervised due to risk of suicide. 😞 And I've stayed WFH ever since, as she's never really picked back up from there.

Just checking in. I hope the school return has been smooth for your dd @Curlyhairedassasin. How’s it going with your dd @Shedqueen?

I hope you’ve managed to get your dd eating more since you posted @wandawaves. In answer to your question, I cope as we have a private ED coach, who I speak to weekly so she helps me and I also have my own zoom therapy. No meds here unfortunately as I react badly to anything. Dd was signed off from CAMHS last August, never diagnosed, and we were told she didn’t have an eating disorder, which is absolutely disgusting as she was very ill and still quite mentally ill one year on. The psychiatrist told us we should allow dd to choose what and when she ate. Had we followed that to the letter, dd would be dead.

My dd is also similar to yours @ExistentialistCat. Always done her own thing. Extreme stubbornness born of anxiety.

As for the sessions, @PermanentlyExhaustedPigeon80 it will take time for your dd. I think they’re actually being really sensible with her so as not to scare her. The ED coach is still working on getting to a therapeutic relationship with dd. It won’t be long and dd can only stand 1-1.5 every few weeks.

Things are going well with dd in some ways. But I’m absolutely exhausted from it all, stretched completely to the limit and beyond. I have chronic fatigue, fibromyalgia, chronic pain.

She is struggling at school atm, lower 6th. She is in private school and not enjoying it at all. Friendships to her are everything and she can’t function if her relationships aren’t right, which they aren’t atm. Problem is, I can’t put her elsewhere as she wouldn’t cope in mainstream - likely autistic with PDA profile and she’d have to start again. It’s a very small school and the 2 girls she is hanging round with sound difficult and one is pretty catty, two-faced etc, which just isn’t dd at all.

The year 11s and 13s that she’s friends with are now on exam leave so she is crying every day, not wanting to go in, very withdrawn. She’s only in for exams this week and last, so she is spending lots of time at home. The crying is good in some ways because it means she is now feeling emotions, which she wasn’t before, being numbed by lack of intake. But her resilience is really really low. And she doesn’t want much comfort from me, which is hard for her and for me.

She also wants things all her own way, which I’m doing when I can and pushing back when I can’t. Like today, she wanted to go to the gym to study during the day between her 2 exams, which would have meant me driving an extra hour and having almost no down time and I felt too wobbly, needed to eat as I have a headache. There is no compromise as I did suggest taking her at 4/5 and dh picking her up at 6.30. Or going together to the cinema. Or seeing a friend. But she is just so shut down and wants to be alone in her bedroom. She didn’t even want to watch tv with me.

In some ways this feels as hard as the eating one meal a day as I am concerned she will react and regress again. I’m still not physically over turning her round after the ski trip a month ago. The ED coach agreed with me that this is a crucial stage in her recovery and it’s really important to koko. Not to have any disruptions at all. She’s just edging into taking responsibility for her recovery. But the friendship issues are added stresses are really holding her back. Plus she is in full on people please / rescue mode for another friend and she doesn’t have the resources.

I am also trying to get dh to focus on the very basic things he agreed to do with dd. Ie provide meals and snacks at the weekend, which bar when he’s taken her away, he has done about 3 or 4 times in the past year. He created and agreed the plan with the ED coach btw. I’m sure it’s deliberate now. Dd is often out with friends Saturday evening. But Sunday, he watches football then at about 6.15 he calls his dad. And oh whoops, responsible Mummy has made all the food again… He’s in full on PDA refusal I think. It’s so bloody hard having 2 of them in that mindset.

Thanks @Mummyoflittledragon. Return to school went well. She was really looking forward to it and all good.

Eating is becoming much more stressful. a few refused snacks everyday but she is eating home cooked food so I try to enrich this with all sorts of things to make up for it. Last week, she lost about 1.5kg to the week before. Will see what the weight check tomorrow shows. I am just so tired of it. I was so happy eating was going better and it seems to be going all back again. I spent so much time every day to support her meals and have been doing for 2.5 years and I really noticed I had enough. I am not even upset or angry anymore just running out of steam. Really thought today for the first time that I just don't want to do this anymore no matter the outcome. arguing with DH again too. He thinks I am too controlling and we should let DD eat what she wants. So if she cries and says she will not have this or that, he has goes at me in front of her that I need to be less pressuring and let her decide for herself as she is eating 'enough' (she isn't). How are we supposed to make her better if she refused food and her dad is backing her up?

That sounds really tough @Curlyhairedassasin and I’m so pleased for your dd that it went well with school. It’s really hard when your dh isn’t on board. Mine only is, sort of, because he has an hour with the ED coach every week. But he doesn’t challenge dd at all. He wanted to take her away at half term again and I was horrified. As was the coach. Dd is at a really crucial stage.

It sounds as if your dd is also at a crucial stage. Starting her periods is a big thing and pretty destabilising. Not having periods can feel like a good thing and I’m guessing this could be the continuing reason your dd is choosing to restrict, so she can go backwards and benefit from them stopping. I’m figuring she’s also had a flood of emotions and the realisation that her body is working properly. Has she talked to you how she feels about her periods? The ED coach wants me to talk to my dd when hers restart again. Dripping bits of conversation at a time to find out how she feels, if it is triggering, her emotions etc.

It seems as though your dd is tipping into relapse or perhaps even in relapse from what you’ve said. 1.5kg is a massive amount to lose in a week. If anything, you have to be more regimented, not less. You know that. You can turn this around. You really can. You’ve done it before. If it helps to get your dh on board, tomorrow can you give him some bullshit? eg ‘I spoke to the psychiatrist / psychologist. They’ve told me we urgently need to get things under control because they can see dd is spiralling downhill. They said she needs both of us as parents to be a strong team to help her to eat. I get it’s hard to see her in distress. Please back me up. We can do this.’ A text is perhaps better as he can reread hopefully. If you need to cover your tracks as he may quiz your dd if you didn’t speak to them separately, you could perhaps say you had a phone call with them whilst your dd was at school or something…

@Mummyoflittledragon we usually see the psychiatrist together but it's more marriage counselling these days as we often just argue. Will see what the weight is tomorrow. Initially after discharge, DD ate crazy amounts of foods- far more than the meal plan which explained a very fast weight gain. I sort of hope that the weight drop is just the weight correcting itself after returning to a more normal intake and that we stabilise at a healthy point.

She is really upset about the periods as everyone harped on about the lack of periods being due underweight. She knows why her periods started.

Hi, I saw this post pop up on my home page. I just wanted to post a quick note. I'm 33 now, I had an ED for around four years as a teen and it consumed my whole life at the time. I've now fully recovered and I could never imagine being back in that mindset and sad lonely place. There is hope what I will say is it did ruin my teeth and apart from maybe 6 teeth they're all full of fillings which is deeply embarrassing for me.

Just signing in, sorry to those of you very much in the trenches with this hideous illness 🌺

Curly you know my thoughts on your husband 🙈 you would be so much better off without him. In some ways being a single parent and managing DDs ED on my own made life much simpler. I made the rules and there was no one to undermine me 🤷‍♀️

Of course the ideal is to have a partner who backs you up and you can take it in turns to manage the meals but having a partner siding with the ED makes an awful situation even worse.

What was he doing when dd attacked you? He should be on hand to safely restrain her until she feels calmer.

Hello everyone. I saw this thread and started to read it because my DD had an ED for a number of years. We are the other side of it now but I thought a couple of things might be worth mentioning to you all.

I saw a therapist when DD was unwell. It really helped to understand in my heart as well as my head that it wasn’t all my fault, I didn’t cause her illness. Now I think it’s an unfortunate series of events and some are just prone to certain illnesses. I wanted absolution if things didn’t turn out well, I think, and it was helpful. You can ask for therapy on the NHS, it’s (or it used to be) one of those things that, if you ask, you can get but no one tells you it’s there so you don’t know to ask.

It’s so important to find your people, isn’t it, to talk amongst those who really get it: you don’t want them to have had the experience that means they get it, but at the same time support from those who really know what it’s like is invaluable. I just wanted to wish you and your children the best and to say how much I admire your resilience and how supportive you each are to others.

@Curlyhairedassasin The info about your dd’s weight loss sounds more positive than your previous posts. I hadn’t realised it could be more of a correction. My dd won’t weigh in or weigh herself so I go on size. And I know what you mean about marriage guidance… the coach has basically done some of this too!

Your response that your dd knows exactly why her periods have restarted really hit home. I wasn’t trying to be patronising by saying what I said so I hope it didn’t feel that way. I was working through my thoughts as I have to work everything out in my head as I am having to do everything CAMHS should be doing with dd. And dd isn’t quite ready to do that work with the ED coach yet. She’s getting there. I’m really sad again now.

Hi @Adrinaxo thank you for coming onto the thread. I’m so pleased you’ve made a full recovery. Please don’t be embarrassed of your teeth. They are part of your journey and who you are today. You are much stronger because of the adversity you faced.

Thank you @Theoscargoesto for your caring and supportive words. I am so pleased that your dd has made a full recovery. This is what we all want for our dcs and I hope it for everyone suffering.

@Girliefriendlikespuppies he is never here for the big attacks. She only does that when she is alone with me. one happened a week ago and I still have bruises. She never goes after him and he takes it as evidence that he is a good dad and that she is attacking me and getting upset with me is a sign that I am an unfit and bad mother. When she has little goes at me, he just blames me for being 'controlling'. he never backs me up. I am fighting DD, AN and DH. Any idea why she would attack me to often and him not at all?
And you are probably right with your thoughts. I just have no idea how to pull this off on my own with 2 highly complex kids and zero support network and a low paid part time job on top which is already way too much I can handle.

My daughter tends to save the worst for me. For a long time I thought it was because I was worse than her dad at managing her. After therapy and a total breakdown, I see it as her being more confident I won’t walk away whatever she does. Her dad still thinks I can’t cope but hey….

there’s probably also something about teenage girls and their mothers. I had tricky times with my older girls while they were nice as pie to their dad. In their twenties, that seems to reverse. My heart goes out to you @Curlyhairedassasin

We seem to be in a calm period at the moment. Following her meal plan (two sandwiches a day and supplements so progress) and engaging with the idea of FE college in September. She has a tutor for her favourite subject who has been instrumental in this. I’m so grateful to her. Crumbs, the days are long though!

Thanks for the reassuring words about the Case Worker sessions @Mummyoflittledragon - I think you're right that taking time to build up a relationship will lead to better outcomes. It's just hard having to wait for that to happen. This week has been easier as DD has been mostly following the meal plan agreed with her Dietician on Friday, so I've not been feeling so frantic.

@Curlyhairedassasin - I agree with @Shedqueen - young people often lash out at those they trust the most. While it may not feel like it, the fact you are getting the brunt of her emotional outburst likely means you are her safe space. This may not make it any easier in the moment, especially with the violence which sounds awful, but she is lucky to have you, and by providing her with that consistency and safety you will be contributing massively to her recovery. Horrible for you though, and I'm sorry you're having to absorb so much. My DD definitely lashes out verbally at me more than DH, and her words can be very harsh and threatening when she's at her worst - making me feel like she blames me more than anyone. It's so hard.

We've continued to have a good week eating-wise, although couldn't get her into school yesterday as she had a tearful, anxious meltdown in the morning. Amazing, she continued to eat (smaller meals, but still regularly), but she was very low all day, which was hard to see, and difficult to know how to help. When I (finally) spoke to her Case Worker she said they had significant concerns about her mental health, low mood, feelings about herself, and suicidal thoughts. It sounds as though they think the disordered eating is part of this, rather than being a separate condition. They're going to have a 'formulation' meeting after the 3rd Case Worker appointment (2nd tomorrow) and agree a treatment plan. Until then we're just in limbo, trying to keep her as stable as possible.

I feel really tired at the moment, even though I'm not really doing anything (not working, spending a lot of time at home watching films with DD or supporting her to try and do other activities), and am very snappy with DH and DS. I think it's the unpredictability, which makes it impossible to plan ahead. It's almost easier in crisis mode, because it's all encompassing. Now she's eating more, I don't really know what to do with myself or how to feel! Anyone else feel like that?

@Shedqueen @PermanentlyExhaustedPigeon80
thank you. good to know I am not the only one who gets the brunt of it all. Always wondered if I am her safe place.

She lost weight again but psych wouldn't tell us how much. We are tasked with finding a way where we can maintain weight (technically, she is weigh recovered after her fast weight gain), just need to find a way to keep it up. She is so incredibly stubborn and rigid.

The low mood, depression and suicidal ideation have been part of Dd's journey for a long time. Is your DD medicated? That isn't usually the solution but it can help to make a difference. Maybe something to discuss with the team @PermanentlyExhaustedPigeon80 ...

also, sounds like bliss having a bit of a breather. I never managed to get signed off work . Can you fill your days with things that take your mind off it all. I'd go out to park for walks and hikes!

Just catching up with everything. Between appointments and work and spiralling DD I don't have time to think. My brain isn't turning off when I go to bed though. I seem to have the opposite DH problem, he is totally strict with what DD is eating, and she spends all her time moaning to me about him and how strict he is. He's much better at boundaries than me but she will eat 90% of what I give her without losing her mind. So I'm trying to back him up and keep her sain. She gained a few grams last week -which is actually good since she has stopped losing and at her weight she can't loose anything more. Now the focus is getting her back to school and she needs to be gaining for at least two weeks before they will do that. Any tips on what to get her to eat to speed this up?

@littlemissy12345 Does she let you cook or is she one who hovers over you in the kitchen? If she lets you cook, try to focus on creating more calorie denser foods rather than bigger portions. Create stews etc with loads of added oils/fats which adds a lot in terms of calories.

@Curlyhairedassasinthanks - she is a hoverer! Our case worker has said to ban her. I'm thinking stew tonight with jacket potatoes and lots of veg;(with butter).

@Curlyhairedassasin - DD is not currently medicated, but I've wondered for a while now if this is what is needed to stabilise her mood sufficiently for her to engage with therapy and get back into a positive routine / cycle with school. I know CAMHS don't prescribe AD medication to under 18s lightly, but she has such a complex mental health history, with lots of examples of interventions not working, or only working up to a point (CBT, EMDR, art therapy, family therapy) that perhaps now is the time to try something different?

Does anyone else have experience of medication for depression, low mood, suicidal ideation, self-harm? Would be interested to hear how you've found it.

I took your advice @Curly and did something nice this afternoon while DD was in school - went to a cafe and read my book outside in the sunshine! Sometimes it's hard to give yourself a break isn't it, even when you have time? I realise I'm lucky to be off work, but still struggle to give myself permission to relax, even though I would advise others to do the same. Hope you can get a break sometimes too?

@littlemissy12345 - glad to hear your DD is going in the right direction, although it must be stressful trying to maintain that in order to get her back to school. My DD responded really well to the Dietician co-creating a personalised meal plan with her, as I think she felt like she had some control / input, e.g. it took into account her likes/dislikes/preferences, and left out those foods she finds really difficult at the moment, e.g. butter, oil, cheese. Would something like that work for your DD? We wrote it up, printed it and stuck it on the fridge. Now she checks in regularly, and feels empowered to make her own snacks. Not saying this will last, but it's nice for the moment.

@PermanentlyExhaustedPigeon80 Hope you enjoyed the cafe. We have been on medication since she is 12. First Sertraline. did not work, and made her worse, the fluoxetine, not very useful either and we are now on Citalopram which seems to have stabilised things a bit but its not the big game changer for us as some others. I think Sertraline is a common one to try first. We are also on olanzapine (antipsychotic drug that helps in low doses with the extreme anxiety around eating but they dont prescribe that easily). I would definitely ask about ADs to take alongside other therapy. It was never a therapy replacement for us, just something to take on top.