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

[Mummyoflittledragon]

New thread. The old one is full…

Ugh yeah that's really unhelpful!!

They have never told my DD (or me unless I ask) her weight at any of the weigh ins which were twice per week..I'm not sure if that will change now she is under outpatient care?

Did they ask whether she wanted to know? I would imagine most ED sufferers would say yes to that.

My DDs obsession is 40kg. She wants to get below that and says once she does, she will eat "normally" again. A 100%wfh would be 60kg so that just ain't happening!!

Thanks both, yes they ask her and she always says yes. I'm going to speak to them alone again and really tell them this is madness.

She is supposed to be going out with friends in a bit. But she hasn't eaten all her lunch. She agrees to butter in her roll which seemed like a massive win but then refused her crisps. Which calories wise leaves her eating less than if she'd done it the other way round. No wonder she didn't seem too upset agreeing to the butter.

We have said she has to eat her crisps before she can go. I'm bracing myself for a battle. I don't want to stop her going out but I can't let her go backwards

The having a weight starting with 3 (kg) is a real toxic tiktok thing!!

@Weightlossworried
You’re doing a really good job. Hopefully your dd has had her crisps now. The ED coach tells me to say things like ‘it would be irresponsible of me as a mum to let you do bla bla’ … ‘so have your crisps real quick and you can get going’.

@Girliefriendlikespuppies
I’ve been thinking about your dd. I hope the bungee jumping and sky diving went well. When does she come home?

Oh my gosh thats ridiculous!

I wish they would come up with a way of stopping that stuff getting on there!

Having said that I distinctly remember being young and pro anorexia stuff being on the internet... I think it was forums and things back then. Scary.

I hate to say it but I’ve seen very pro anorexic stuff on this forum, some of the stuff on the weight loss chat is scary.

Thanks for asking @Mummyoflittledragon she hasn’t done those things yet, think they’re next week sometime. She comes home 7th of July - I really can’t wait as have constant low level anxiety since she went!

She seems very happy when I’ve talked to her, made friends and generally loving it.

She did mention she’s stopped eating fish 🫤 she’s been pescatarian since she was 8yo and I’ve encouraged this as feel it gives her more options. She has been hinting at wanting to stop eating fish for a while but I’ve ignored it tbh. I mean she’s 20yo now so it’s up to her but I don’t agree she’s well enough to cut fish out yet.

@Girliefriendlikespuppies
I’m glad your dd has made friends. That’s the same day as my dd leaves for her week with friends. Your dd will have been away quite a long time. And you’re going to worry about her for food related issues whether she’s 20 or 40.

Going veggie really isn’t the news you’ll have wanted and I imagine you’ll be wondering if it’s a true choice. Going veggie really accelerated the ED for dd. She stopped eating meat and within 2 months, she was eating something like 800/900 calories a day. I imagine that was a lack of B12. So I hope your dd manages to eat well on it and not lose any more weight whilst away. Is she on any supplements?

It is so hard even when they’re recovered or on the way. Idk if your dd forgets to eat when she’s having fun. I know my dd does. She’s in London today with the 2 girls she’s off on holiday with. She hides from them that she’s still ill - well she doesn’t admit to being ill anyway - and they had lunch at 4pm. Idk if anyone bought snacks before that to share But it’s not good at all! I’ve put such a put of effort in to her having food at set times.

i agree about the pro ana stuff on here. Not just in weight loss. The recent Ariane Grande thread was a bit of an eye opener!

Hi everyone, sorry I've not been on here for a while, been a tricky week and weekend. Sorry I've not caught up with the thread yet either, will have a read through later, hope you're all doing ok though. @CuppaTandBicky i did see you're now home, that's great news, hope the transition isn't too stressful and things continue to go well.

So, nearly 4 weeks into our hospital stay dd's weight has stalled again, despite her continuing to eat everything asked of her. So so frustrating, and making her very sad. It didn't help that the ward doctor came in and announced her weight to her this morning with a level of disappointment like it was her fault, she's obviously not meant to know her weight so I was so annoyed!!
They've now upped her plan again so every snack is a double snack, plus she has to have a fat portion with every meal, regardless of if you would normally, eg butter on her potatoes yesterday in her roast dinner, with gravy! The changes are giving her a lot of stress, I just have to cling onto the bigger picture of the goal of getting home and better.

As she's now on 6 snacks a day, i really need some inspiration of things to ask the dietician of options to add, she's been having smoothie with her 1 double snack so far but we can't do that each time. Would be grateful for any suggestions, I also want to ask about a big snack such as flapjacks that might cover both, again any suggestions most welcome! Thankyou x

Hi. Just wanted to respond @Mummyoflittledragon to say that i was determined on sunday to be breezy and the day did go better. 3 meals and some sweets. It's a reminder to me keep treading lightly. i re read all your vocab tips as the risk of alienating my dd is also a thing. It reminded me of Jenny Langley's two ballon ecplanation. I sure you know it, but if you don't, I'll share it.

I hope your daughter has fun on the holidays. It's important they regain a bit of a life. And maybe push themselves a bit. Though it's a fine line.

Thanks @Girliefriendlikespuppies . Its good to hear your experience re work. A few hours in the morning would be ideal.
I'll see how this week goes and maybe suggest looking for part time work.

@ThatSparklyOliveBird its good to hear from you. The 6 snacks sounds very tough. They’re double snacks so sever day the same time? Will she go savoury so cheese and biscuits?

Are they looking for a particular weight before discharge? What is her weight to height?

We increased calories rather than doubling snacks. I think it’s wrong of them to change meals so they become not something we would eat or they would eat before the ED. Butter swimming in gravy sounds awful and my daughter would get really upset. @CuppaTandBicky will be worried about that on her walks 😉😬

I would definitely investe cheese, and ask about the flapjack and other bigger snacks. Can she have a more calorific biscuit for example or a chocolate bar? Thinking of you. 4 weeks in hospital feels like forever but I promise you will be home soon xx

@ThatSparklyOliveBird that must be so frustrating that she's eating everything and not putting on weight. Has she always had a really high metabolism or something? DD has been in for almost five weeks now and has out on no weight at all, but that's because they can't get her beyond half portions at the most.

Does she like peanut butter, that's usually good for an energy dense snack? Nuts in general are quite good, maybe a flapjack with nuts and dried fruit added if she'd accept that.

Mine's not on tiktok but I worry this is the sort of target she's got in her head - she's 40.6kg at the moment. She did tell me before that 100 pounds became a goal and then 90, it just keeps getting lower.

I thought going in to inpatient care would motivate her to eat. She lives for the summer and the idea of her being shut up in there, in a wheelchair, now that the exams are finished and the sun's out is awful. But she's just getting more depressed and making very little progress with the eating.

Glad your daughter is enjoying @Girliefriendlikespuppies, hopefully the desire to not eat fish isn't anything to worry about but I can see why it would set off alarms.

@ThatSparklyOliveBird your poor daughter. It must be incredibly hard to follow the meal plan and still see no progress. Incredibly unhelpful of the doctor to announce her weight like that. Honestly, that's so basic to be careful about things like that, I despair that they can get it wrong. I second the suggestion of nuts if she'll eat them. They're so high calorie, you don't need a lot to make a difference. My DD won't eat them of course but if yours is wanting recovery they'd be ideal.

That sounds so tough @StressedANmum. I hope something changes for her soon.

I ended up giving in on the crisps yesterday - although we'd given her biscuits, fruit and the crisps as snack and she'd eaten the rest. She was horrible yesterday. Rude, sarcastic. She had me so angry I just wanted her out of the house and away from me. I know it's the ed making her like that but, I lost patience with her. Anyway, her trip out worked like magic on her attitude. She came back a different kid and ate all her dinner and evening snack. She wants to go out today as well and has agreed she'll eat her morning snack to be allowed out - she's never eaten her morning snack. We'll see.

I have said that if she's lost weight tomorrow then we'll need to rethink her trips out with friends - she can still see them but it'll have to be here at home or cinema trips.

@CuppaTandBicky
I completely missed that you’re home. I hope you’re doing ok and that you have enough support from CAMHS. Fingers crossed for you.

@ThatSparklyOliveBird
It does sound as if your dd’s metabolism may be super fast. Some sufferers need 4000/5000 calories to put on weight.

When you say double snacks, I wasn't sure if you meant do you mean double the quantity or 6 snacks plus meals.

Before things went wrong, dd’s morning snack was (the only fruit she would eat) 4 small easy peelers plus a decent portion of grapes, a 27g slice of cheese and a pack of belvita. That’s the best part of 500 calories and is balanced if you’re looking at that side of things. As for a flapjack, I would imagine it is double if it’s a good size. It’s very nutrient dense and has carbs, fats, fibre and some fibre. Anything nutrient dense is good and look for larger if your dd only accepts one or 2 things.

i know you’re in hospital so these may be totally useless atm. I shopped around for stuff dd will eat - it’s quite limited so unfortunately not nut based or dried fruit etc. It’s surprising how much of a difference it makes on what you buy pre packed. Granola bars - Nature Valley (2 in a pack but count as one item). The belvita 4 pack are really popular with anorexics, also 1 item, I eat Nairns oatcakes (to have with some form of protein) and Nairns biscuits both come in little packs (mostly of 4) and would count as one thing, so these could be good. Any biscuit with chocolate on adds calories, the highest ones if your dd will only accept individual biscuits are the extremely chocolatey ones, otherwise go for packed bars with / of chocolate. And if she wants crisps, the individual packs of crisps, that go with meal deals weigh considerably more than the multipacks. Doritos or Wotsits rather than sensations crisps. The St Pierre long life croissants and pain anu chocolate are slightly higher then any other brand I’ve seen, but they don’t have butter. Swings. Roundabouts. The most nutrient dense Greek yoghurt I found is Yeo valley. If your dd will eat meat, pork pies and sausage rolls. Idk if that helps.

@StressedANmum
I'm sorry your dd is struggling so much. Poor love. How is she finding the environment? I’m just wondering if there’s anything she needs to help her on that front as you said she is ND. It will be overwhelming for anyone autistic. On the plus side, you haven’t said she’s losing weight. So that is good. And how are you doing with it?

@Weightlossworried
I totally get you on the crisps. It’s a fine balance. And I’ve reneged on stuff with dd. My dd comes back completely different when she’s been out with friends. It’s like a fog has lifted and she can eat.

I’m hoping it will last into today for your dd so she can eat her snack. And it would perhaps be useful to explain to your dd why you let her out yesterday as it willl be confusing and the ED will capitalise on that. Maybe something like you could see she really wanted to go even though she was struggling with her eating and you know that it would be good for her to see her friends. However it would be irresponsible of you as her mum to keep letting her do that, because she needs enough fuel to be able to do the things she wants.

And please don’t take this as a criticism. I just wanted to let you know that you’re talking to your about her weight when you want her to be blind weighed. I am wondering if talking about it regularly is going to make her want to know it iyswim. My dd won’t get on the scale, wouldn’t engage with CAMHS, so idk what that is all really like. I’m thinking perhaps play the weigh in down? Idk.

@Thisnowtoo
You did really well there. It makes a massive difference. Hard to keep up. So give yourself a pat on the back. Yes I know about the balloons. Jenny also does an autism series with 3 balloons.

As for the holiday, I’m hoping my dd will have a good time. She’s eating more or less to plan. I’m hopeful I can keep her on plan whilst there as she’s is such a good mood having her freedom from passing her driving test.

It's ok, I wondered about that too. It's how I justified letting her out with friends. She actually did weight restore last week. I honestly don't believe CAMHs are going to change their mind on her seeing her weight. So I suppose I was thinking if she has to see it then how can I turn her from thinking losing weight=good and restoring=bad. If she makes progress in recovery she gets freedom and if she loses then I have to be more careful about what activity she's doing and she has less freedom.

It probably won't work, nothing does. But with the thought of weight gain hanging over her, I wanted to plant a seed that, actually, it's loss that will have the biggest impact on her life right now.

She had me all turned around yesterday so my thinking probably was muddled.

@ThatSparklyOliveBird we had a few wiegh ins where no wieght was gained but dd had eaten well. I used to think the that the nutrituion was used for organ repair. Each time she eats well is a step forward. I hope you see the change soon.

It is really hard. And I totally get your reasoning. You’ve said it now and hopefully it will have planted a seed. And I don’t think it’s a bad thing you said it either, because your reasoning was solid.

What I tend to then do is overkill it by reiterating the message, which is part of my anxiety. And the ED coach has told me reiterating will water down the message. So fingers crossed your dd will process what you have said.

And I do sometimes highlight to my dd when she’s lost weight. As it’s done by sight rather than the scales, it isn’t something I talk about regularly and only when she’s relapsing. The pressure on weigh in day must be enormous for everyone.

I definitely don't plan to talk about it regularly, and I have the same concerns really that I may be being dragged into her weight obsession! Definitely something for me to watch out for.

Thanks mummyoflittledragon..I hope the holiday goes well for your daughter

I do know Jenny, but not the balloons - can anyone explain the metaphor?

I got a factsheet from Jenny recently on restrictive intake self harm. Its not a formal diagnosis but I found it interesting and maybe some of you with DC who do not accept fbt, magic plate or reassurance might also.

Agree about the disordered eating on here
The AG thread is crazy. People falling over themselves to say how healthy AG looks and to say otherwise is either misogyny or an insult to her singing.

It must also be so hard for our DC to see how vicious social media is about AG, as if her very existence is a danger to children. That being said - I do think some of the publicity shots do seem to deliberately highlight her size, whatever has caused it, and I do think this is quite unhelpful/irresponsible all round

@unbuckle
It’s a way of categorising / explaining what is going on for a sufferers in simple form. The blue balloon represents the happy, fun, well adjusted part of the person. The red balloon represents their insecurities and worries. Usually the blue balloon is much bigger and easily inflated. In people, who are depressed / mentally unwell, the red balloon inflates more and the blue balloon deflates. And the red balloon contains all of the ED behaviours.

We need to talk to the blue balloon, ie the person and who they are, their interests and things, that are fun and less to the red ballon part of the person and the eating disorder behaviours. An example of talking to the red balloon (paraphrased from the new Maudsley website); if you don’t eat, you’ll wind up in hospital / might die.

Yes a lot of stuff online is so toxic. had to literally sit on my hands with that AG thread so that I didn’t comment.

I need to re-read the balloon metaphor, it makes so much sense.

I might pass it along to some of the CAMHs staff next time they give the hospital lecture!

https://m.youtube.com/watch?v=qlEBXwOOZmQ#bottom-sheet
@unbuckle I hope this link works.

Thanks all, really appreciate the suggestions, definitely some to try. Sadly nuts are a no go while we're in hospital, but would be good once out. Just to clarify it's 6 snacks from her list but 2 at a time, so double for now, although im working on that with better ideas to put to the dietician! Her WFH is still under 70 (she was very poorly when we came in) so I'm not honestly sure how high they want her to get before discharge, I definitely sense that the consultant is annoyed with the ward staff/ dietician/ kitchen for not providing the correct amounts from the meal plan to dd though, especially as she's being so compliant, with the expectation of being further on now than we are. Taking comfort that at least it's going the right way and she's getting healthier over all, eg HR not dropping below 60 at night now, but obviously so fed up of being here!! Thankyou everyone x