Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@Weightlossworried You’re doing great. To get your dd to come back and eat was quite an achievement. Yes, I’m sure a normal amount of food can trigger the feelings of guilt. My dd was also restricting herself to around 500 calories, so I know what that looks like.

Are you monitoring her toilet use after eating? I’m just wondering how you are ensuring she’s not vomiting. I didn’t really have to deal with this with my dd as I nipped it straight in the bud within a few days of realising she had deliberately vomited.

@Girliefriendlikespuppies Wow that's restraint for you. It’s amazing how similar they are. Hating on us and wishing us dead as soon as they restrict. I also wonder how much dd will remember when she finally comes out of it. A lot of the time it’s a milder form now, so she’s telling me she just doesn’t like me. We just don’t get on. Then when she’s eaten enough, we get on amazingly and are so close again… just for that moment.

@CuppaTandBicky
You’re sounding a bit more positive today. I hope you managed to sleep better.

@Mummyoflittledragon yes, I'm monitoring her toilet use. I try and persuade her to stay with us after meals so we can distract her from what are probably some very difficult feelings. She sometimes will do that and other times wants to be alone..when she wants to be alone I hang out in my room which is opposite the bathroom.

We did this in the beginning too but got complacent over time as she didn't seem to be even attempting the loo after eating. We reinstated it after her blood tests.

I actually remember very well what the signs were when my sister was anorexic so I often 'use the loo' after her too outside of the immediate post meal danger times to check for them.

That sounds positive at least. The things we have to do, eh! My dh is absolutely clueless to everything I do to maximise what dd will eat and monitor her intake, trying to nudge her to eat enough to keep her blood sugars stable to prevent evening binging etc.

To add - idk what to say about your dsis. It’s kind of good that you know the signs. But how awful for you that you do. I hope your dsis is recovered.

@Mummyoflittledragon I had a decent night's sleep here, the ward was quiet (volume wise, not busy wise!) so even though today has probably been the worst day in terms of her eating, I feel like I can cope!

How are things with you today?

I'm so glad you got some sleep @CuppaTandBicky.

It must be very hard carrying the weight of it alone @Mummyoflittledragon And still you manage to come on here and help us. You're pretty incredible.

My sister is recovered thankfully. She was anorexic from around 12-14. I'm the older sis so couldn't help looking out for her.

For those of you who've posted about siblings of anorexics, I can reassure you that whilst I remember some things clearly, a bit like girliefriendlikespuppies' daughter, I don't actually remember a lot of it. I expect it is etched far more clearly into my parents minds than mine.

That's so reassuring to know thankyou

Hi everyone. Wow thank you all so much for your reassuring words. I was in a very dark place earlier. After everything calmed down my DD was very loving which often happens. She so desperately wants to get better. She said she’s leaving it all up to me now. She said it’s so weird how she turns into this person she doesn’t recognise. I said it’s not her. The facts at the end of today are that she did indeed eat what she needed to (in the end). And therefore we won and the ED didn’t. I am hoping that each day we win the ED may get quieter ..

@Weightlossworried i have been beating myself up for weeks due to not being ‘tough’ enough. I’ve been dancing around this stupid ED and trying to appease it almost. Avoiding conflict and negotiating with it. Today after our weigh in disaster I decided to face it head on and it was scary and fiercer than i ever imagined. I phoned my husband in tears and said I’m not cut out for this I can’t do it. But maybe that’s not true. Maybe standing up to this awful monster is all that’s needed. But god we have to be stronger than it. And it’s an awful awful beast. When you see the beast it’s scary and awful and it tells you hurtful things. @Mummyoflittledragon I love that saying- to slay the beast you have to see the beast!! Yes! Let’s all slay this awful evil monster. Every day is a new battle but we have no option other than to fight.

You did win! That's a great way of looking at it. Your strength is amazing.

I think the problem I have is my DD has never said she wants to get better - quite the opposite. There is nothing that incentivises her and nothing that scares her more than weight gain. I fear we'll never make progress, even if I get tougher, until that changes.

@Weightlossworried that's the problem isnt it, and I don't know how they can get to that point while ever they aren't eating enough.

Quick question regarding Fortisip. Has anyone had to use this?
Daughter HATES it and is given it every time she leaves some of her meal. She has tried a couple of flavours. I was wondering if anyone knew of anything similar that exists that tastes different/nicer?

I know ideally she would have the food but sometimes that doesn't go too well.

Hi @CuppaTandBicky my daughter also has the fortisip as the reserve option for food refusal, she's so far completely adamant that she won't have it though, and is managing to eat everything, which I guess is good. I'm dreading the day when she doesn't manage, we've been close to it a few times with the 30 minute deadline despite her eating as quick as she can, I just think her panic and distress will be so much worse if they take the food away and give her the drink :( anyway sorry, no help to you at all, but I hope your daughter manages to find a bearable flavour! How are you getting on, generally? Hope your mood isn't too low in there, I've definitely had an up and down week. The consultant seemed happy enough yesterday though and we had another 0.3kg weight gain, so on we go..... no end in sight yet, but small steps I guess. Sending you solidarity in there! Xx

@Raspberrysins so sorry you had such a tough day yesterday. I often think I can't do this, and have cried and shouted far more than I should, but we're human, and these are our children, we can only do the best we can do. You're doing brilliantly staying strong, as is everyone else on here, really hope for a better weekend for you xx

@Weightlossworried I think you have to work on the assumption they do want to recover even if they insist they don’t. I remember one of the posters on this thread saying you don’t ask a drowning person if they want a life ring you just give it to them.

@Raspberrysins you are doing so well, it’s great your dd has that insight. Tabitha Farrah talks about the extreme reactions being due to the brain (wrongly) believing food is a threat. When ever something (food is our kids case but it can be literally anything) is avoided our brains believe it’s dangerous and then when we try to reprogram the brain it really doesn’t like it!

When faced with the thing we told our brain was dangerous it will chuck every negative emotion at it - anger, fear, guilt, disgust because the brain thinks that it’s helping.

The brain is very literal.

The only way through this is constant exposure and sitting with the difficult emotions which will gradually reduce. This is why distraction can be really useful.

And yy to winning against the ED.

I can remember tipping double cream into dds dinner thinking fuck you anorexia 🙈😂

I love the drowning person analogy. That’s really helpful thank you. I had a few gins last night with my friend and it was so nice to get out of the house and see normal life for an hour or two. Feeling it this morning though! Yes I need to remember small steps, one day at a time. Hoping for less extreme reactions today 🙏. Good luck everyone with your weekend. Sometimes I find weekends are harder.

I’ve been lurking on this thread since last autumn - right through diagnosis, weight restoration (which was awful but quick), into trying to move into independence (still not there, DH and I need to be in control of most meals though she’s managing to choose school lunches).

The thing that helped me most in the early stages was the life ring analogy - would I do this (whatever ‘this’ was) to save dd from drowning? Even if she was screaming and begging me not to? Even if it caused her to self harm? Even if it got physical? In the end, I’d do pretty much anything if her life was in immediate danger, and that’s how DH and I tolerated the awful distress and behaviours, by seeing the need for food as an immediate, life-threatening situation.

We were relentless, refused to bargain or negotiate (most of the time) and backed each other up so she couldn’t play one against the other. And we were lucky enough to have flexible workplaces, so that we could have both of us there for a lot of meals, so we could take turns when it all got too much.

I know that doesn’t work for everyone, but for a NT dd with partial insight into her illness, it got her quickly weight restored (plus about 10%, which she hates but which CAMHS seeem happy with).

I don't so much feel like I'm throwing a life ring to a drowning person as throwing it to someone who is trying to drown themselves. I throw the ring, she ignores it.

I just insisted she stay longer at the breakfast table. Went back to the usual prompts and attempts at distraction. She did stay at the table but she was extremely angry then just shut down and didn't eat any more than usual. I'll keep on with the keeping her at the table. I was prepared to block her way out if necessary but it didn't come to that. I don't really know how I enforce eating more. I can't actually physically force her to eat...

@Weightlossworried no you can't force anyone to eat, and so we are left to find any way possible.. I wish so much that there was a magic pill, or even something like hypnosis that could work!

Does a carrot / or stick work best for your DD? Ours is better with a carrot, so saying she will be able to do something when she's eaten, instead of a punishment. For example my DD doesn't care much about her phone, or seeing her friends.. but she does like to go out to places and wants to get out of the house, so I can use that as a bargaining tool.. eventually hopefuly your DD will just get sick of the whole process and decide to get better.. I am praying that happens for you soon xx

I was thinking about it and actually she's less like someone who wants to drown and more like someone who is stuck in a Riptide but thinks she's just having a nice swim. I'm throwing the life ring and she's tossing it back, telling me I'm being dramatic and she'll come out of the sea when she's ready.

We haven't found any stick or carrot that works yet. She's lost her beloved horse riding. She's lost a holiday. She's very socially isolated so I can't use going out with friends as an incentive. She would happily just stay in her room if we let her, it's us persuading her to come out places, to play a board game, watch a film or whatever.

She's not spoken to us all day because I made her sit with us for the whole mealtime at breakfast. I'm not underestimating how hard it must be for those of you who are confronted with 'the beast' when you push back against the ED, but I think I'd prefer it to the way DD shuts down. When a kid rages they tend to get all their emotions out and then be open to moving on. When they shut down like DD does it's like you can't reach her.

@Weightlossworried have any medications been mentioned? I think when you’re hitting a brick wall meds such as antidepressants or olanzipine can be really useful.

My dd had periods of completely shutting down, it was like she was empty and void of any emotion. That was more heartbreaking than when she was screaming obscenities at me 😢

No they haven't mentioned medication at all. I'll continue to push her and make sure I explain her reaction in our next appointment.

I've always found it easier to deal with her anger than her depression. It's almost like she has some internal shut off where if the feelings are too big she powers off like an overheated laptop. She's like it in every CAMHs appointment. She won't look at or speak to them at all.

Yes shutting down is awful. It’s happened to us a few times when I’ve tried to make ‘suggestions’ such as - have some humus , or have a babybel. My DD just completely blanked me as if I was invisible. I’m sorry I have no ideas how to help with that. @Weightlossworried Does your DD accept that she’s ill ? Our team suggested getting them to draw a time line of their future- a visual to show the way their life could go if they recovered, but then also to do a parallel one which shows life with anorexia. It can help them look forward rather than at what’s in front of them only. To focus on the ‘vision’ and not the immediate view.

another thing I’ve been trying is getting dd to try and explain her thoughts. Especially when they get loud. Like what’s actually going on in her head when she has to eat. What is her thought telling her? One technique is to try and start putting a distance beteeen the thoughts and themselves to create a separation. So when a thought comes, they can ‘notice’ it and start to put them into different ‘compartments’ in their brain- “oh I’ve noticed a thought about restriction” so can put it to one side.

also @Weightlossworried im not sure if your DD uses TikTok but I’d be interested in seeing what comes up on her ‘for you’ feed as I’ve seen some quite disturbing content. I was initially pleased with some of the powerful recovery content - there’s a great girl called ‘healing hattie’ which is a very good person to follow. However I was following it myself and started to see the occasional pro -ana content- which I must have viewed because pretty quickly my algorithm changed and I was seeing some awful stuff all the time. Like really emaciated girls , showing off fashion. And the comments were really encouraging them and saying they looked great 😓. Since then I’ve deleted tiktok and my dd isn’t using it now either.

you can follow healing hattie on instagram instead which seems to be a less toxic platform so far.

Thank you, yes we try and do a lot of that stuff with her. The beat course we're on is great at encouraging us to do that. I think that's why I worry about her shutting down, those conversations feel really important. They're an opportunity to challenge the ed.

We do keep an eye on what she's looking at. I think even the recovery accounts are problematic actually. We have good discussions about it. I think anyone who is fully, properly recovered wouldn't be posting about their ed.

I'm pleased to report she did come round this evening. And she has eaten her usual amounts. That gives me strength to keep pushing. If she goes very quiet for a few hours that's ok as long as she comes out of it.

DD does accept she has an ed. However she believes if we just left her alone she'd recover by herself. Which is obviously nonsense. Her constant refrain is that me and CAMHs are making her worse. Obviously we have said that the ed voice will get louder when we challenge it but she thinks the answer to that is to not challenge it and at some point she'll just magically get better...

Thanks @Weightlossworried. I do actually have a dh. But I am doing this for the most part on my own as he has no real understanding of the level of detail involved in pushing dd forward. He just can’t see or understand it.

My dd also shuts down. Two reasons. Firstly, when she was restricting so heavily that she was completely out of it, like she was stoned or something and couldn’t follow a conversation. The second reason is shut down, which for dd I imagine to be caused by burn out and / or demand avoidance anxiety.

Dd was like this with CAMHS and won’t speak to the ED coach anymore. She said she won’t go and see her face to face and will simply not say anything if I try to get her to participate in an online zoom session. My dh also shuts down when overwhelmed, which is why I can’t rely on him for so much with dd. This also feels horrible, like complete rejection.

As for how to handle your dd, it is just with kid gloves and so much love. Perhaps send her little texts when she’s in her room? We have a WhatsApp group chat, the 3 of us, and when dd was coming out of her last relapse, I went through a phase of sending silly AI videos of Donald Trump. The first one, she watched and ignored. The next, she sent some emojis. After the 3rd, she added an AI video of her own of Epstein. It takes time for dd to warm up. It’s gentle, gentle nudging and any way I can think of to connect with her.

It’s great your dd ate this evening. The emotional rollercoaster is so hard, especially as our job is to keep super cool and breezy. You said you think your dd may be ND with demand avoidance. My dd won’t eat with everyone. We have no choice, it’s the only way she will eat. Twice a week with us. The ED coach calls it modified FBT.

@CuppaTandBicky
It’s fantastic you got some sleep. You do sound brighter. Fingers crossed for tonight. I’m doing ok. Very occupied with dd. Getting her ready for paper 2 French A level on Monday. So much of her mind is preoccupied with the ED and unless she has someone 121, she just doesn’t get it.

I really thought she’d pull it out of the bag like she did for GCSE. But it’s far more difficult to concentrate, because she is eating, whereas 2 years ago, she was living most days on 500 calories and her mind was far sharper.

This is why they like restricting. The food noise goes and is replaced by a sense of euphoria. She will be a lot further back than I’d have liked, but at least she will know how to break the questions and texts down and what they’re looking for now.

This is what I’m talking about in reference to food noise. It’s a Ted Talk on Ed by Laura Hill. The video has been posted on previous threads.

@Raspberrysins
I have to squish the beast out with dd. Nudging a little at a time unfortunately. From what you've said about your dd it sounds more likely she is NT, so you can go in a lot harder.

You are a wonderful woman @Mummyoflittledragon

Thanks ☺️. But I’m not all that really. I suppose I am and I’m not, like most people. I don’t mean to only show my best bits on here. But I suppose that just naturally happens. I regularly get too tired and grumpy with the strain of it all. And am far too argumentative with dh. And that’s exactly what the ED wants, to cause as much chaos and family strain as possible and split families up. Not that this is dh and my intention…

And apart from some self employment, I don’t do that much in the way of work due to my health. So I have far more time than most parents to look after dd, even if not that much energy. And it’s a good job actually as dd has so many needs that at times, it has been almost a full time job. And this is why I’ve been able to be driving instructor, taxi driver, ED coach, personal tutor etc.

So I really hope people aren’t comparing themselves to me in a negative way, because we are all doing the very best we can. Because I have to stop myself from comparing myself negatively to all you working parents, who are still managing to show up for their unwell children, often with more than one child to consider and your families as well!