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

[Mummyoflittledragon]

New thread. The old one is full…

I don’t have personal experience of having a child in a unit, but I know people on here do so they will be along to help.

Having 24/7 help sounds like he is very poorly and the unit will be able to help him. We will always want to do this at home, but sometimes it’s necessary to accept in patient. My daughter was in hospital and I was desperate to get her home. Looking back it was so necessary and I’m so glad I listened to advice. We are here to listen and help as much as we can. Thinking of you.

@CuppaTandBicky I hope today is a better day for both of you.

@sum12luv I don't have experience of units either but I'm sending you lots of strength and best wishes

Hi everyone. Struggling to deal with a fiercely independent DD who literally won’t accept getting out of the kitchen. She’s determined to do it herself. Make her own breakfast and lunch etc. she’s loosely following the meal plan given to us but it’s the first week and things are tough. Yesterday she threw a baby bel at me when I said she must add it to her lunch and today she’s said she won’t eat anything I make her after seeing me make some energy balls out of nut butter. I’m literally trying to make anything she’ll eat as she hates milk and isn’t having full enough snacks. I have been signed off work now for four weeks to take control but she’s not having it. I don’t know how to make her eat anything she’s not in control of. She’s ok with a plan (as long as on her terms). She’s ok eating family dinners. We suspect she is ND and I know magic plate will never work in a million years. I am trying all the lines ‘I know this is hard for you’ etc. she just gets mad.

@Raspberrysins it’s really hard but worth the battle imo to get her out of the kitchen. My dd threw various foods at me and at one point ran out of the house in her socks because I made her a sandwich.

I did find after a major meltdown the next meal would be slightly easier. It was like the ED had to throw (literally) everything at me and when I didn’t back down it was a bit quieter.

I would be calm but firm, ‘go and sit in the living room I will bring your breakfast out to you.’

Id say things like ‘you are not well enough to make a decision about food right now, out you go, I’ll bring the food to you.’

The minute you put food in front of her make sure there are lots of distractions, put the telly on, talk to her about anything other than food, show her silly videos on your phone. Anything to distract her.

I am in a very similar situation with my DS. Lots of shouting, refusing, running out of room etc, obsessively interested in what everyone else is eating. We are a few weeks in and I am trying to take control after another loss last week, he said yesterday it felt better when I took some control but today he's refusing everything. Out of interest, what did you say to GP to enable getting signed off? I think this may be my next step if he has another loss but I have no idea what to say! Wishing you lots of luck today x

Thanks @MeowBerry im sorry you’re going through this too. Since we’ve been involved with camhs in the last two weeks they advised she shouldn’t be at school but said it was our decision. We tried for another week but she still didn’t gain weight so I asked our camhs key worker to send me an email (saying they recommend no school) and I showed my employer and asked for flexible working. Luckily my work made the decision to sign me off with four weeks compassionate leave. I’m very lucky , but also it will likely be our one / best chance to improve things as I’m not sure how long work will be supportive as I’m a full time secondary teacher.

I spoke to DD when she was calm today and asked her about wanting to do everything herself. She is convinced that ‘she got herself into this and therefore she can get herself out’ but did accept that she needs lots of support. I don’t know, maybe it can work? We will see at the next weigh in.

@MeowBerry I said to my GP my dd is seriously ill and I need you to sign me off with stress 🤷‍♀️ I don’t even know if I actually spoke to a Dr, I think I sent a message in and they emailed a sick note later that day!

My dd said the same about wanting me to be in control but fighting it at the same time. They are fighting an internal battle, part of them knows they are not in control the ED is which terrifies them.

However the ED has such a hold on them that giving up that control feels impossible.

You have to contain their anxiety and distress for them and hold the line really firmly.

My dd says now I only ate because you made me eat, now I’m not that scary (or formidable 😉) but I will not let my dd starve herself to death. I had to be very strong and firm because what’s the alternative 🤷‍♀️

@MeowBerry @Raspberrysins
All of the above isn’t unusual behaviour. My dd still shouts and throws food amongst other stuff. Using words like must, have to, take control send her the opposite way. With her, we need to be gentle but at the same time firm. And working together as a team with her dad / another parental figure if they’re around has been vital for my dd as she’s not a straightforward case.

Both of your dcs have admitted they have issues, unlike my dd (it will be 3 years in September since her ED started) and I would recommend you try @Girliefriendlikespuppies approach and see how you get on. I think Girlie is more of the Eva Musby approach. And I did buy and read the EM book, but that isn’t right for my dd. I am recommending this, because when it works, it gets really good results.

In any case, a lot of this stuff is about earning the right to do things. You mentioned school Raspberry. It’s like a glorified sticker chart. They have to want to do something more than they want to restrict. It is very hard when you’re talking about teens, who want to do what they want to do. And feels so unfair for them. ❤️

Because dd had other food issues anyway - ARFID type eating, what worked with dd was to eat the same thing every day to help with predictability. If this has never been an issue, you’ll be wanting to go for variety and tackle fear foods as soon as you are able, whereas with my dd, she just won’t eat like that.

Dd regularly threatens not to eat. If I go head on challenging that, she really won’t eat, so I’m constantly side stepping. If you want to learn any of these sort of techniques, look at the Jenny Langley stuff etc I posted upthread. Jenny is great with tricky cases and people, who are likely ND. And the techniques are good as part of a tool box.

@CuppaTandBicky @10YellowTulips
How are you doing? I hope it’s been a better day today. If your dds don’t eat 500 calories today, you need to be going to A&E. I get they may not have eaten yet today. My dd had a rule of nothing before 8pm. But time is getting on, so I’d recommend trying to get cooperation, by saying if they haven’t eaten x and y, then you’re going to need to go their own safety, to see how they’re actually doing, to get medical obvs.

Sorry to bang on.

Thanks things got a little better and she managed a few bits of food before bed and had a better day today and have managed around 900. Not ideal but we are just doing our best until we see the specialists.
Another very stubborn, controlling young girl we have to tread so carefully!!

Oh I can relate to the threatening not to eat. This is my dd's latest thing. 'If you do X I just won't eat'. I'm not getting into a battle with an anorexic when they threaten that. We both know who will win - and enjoy feeling like I have 'made' her not eat. It's very difficult. It's like the ultimate trump card

Thankyou so much thats such good advice

I wouldn’t be blackmailed like this, as parents you have a lot more power than you think.

Id ignore those type of threats completely, that’s the ED talking and not your child 🤷‍♀️

If she doesn’t eat then follow through with the plan B which is plate it up, put her in the car and go to A&e. I’ve done that a couple of times and usually dd cracked pretty quickly however I absolutely would have seen it through if she’d continued to refuse.

I ignore them in the sense I don't argue or get into a discussion. In the moment I don't offer her anything else either, we just move on to the next snack/meal or find a different way round it.

For example, CAHMs have said we need to get her up earlier to get her to have a morning snack. Her response was that she wouldn't eat breakfast if we did that. And I absolutely believe she wouldn't. We would lose the breakfast for the sake of a 200 calorie snack that I have been adding into lunch without her realising.

I think my daughter's ED is rooted in anxiety and the harder I push the more anxious she gets and the less she is able to eat.

I will never know if i just have not tried enough to enforce meals or whether i am right that my dc would be worse if I did. Potentially for younger kids having the adult take control is the only way. My dc was 18 at diagnosis. They have never recovered but also are no worse (and probably slightly better) left to their own devices. We can only do what we can do. Perhaps i am a wet lettuce but I can't get mine to eat or drink or go to a hospital when they've decided they're not going

It's so difficult to know what to do for the best isn't it? All the different advice on here is so valuable, even if it doesn't necessarily work for your own child, someone else will read it and it'll work for them.

It’s definitely harder when they’re older, it’s much easier to take control when they’re under 16yo imo but post 16 it’s much more difficult and the services seem to want to work against you as well.

That said there’s ways around it, I did similiar @Weightlossworried Dd found snacks really hard so I added extra to lunch and then spread lunch out a bit, she also had her 3rd snack as a pudding and the other snack she accepted as she was only having one snack a day 😉

Agree with @Girliefriendlikespuppies , it’s much harder at 16 plus, and the NHS allowing kids at 16 to make choices about their care when it comes to anorexia is ridiculous.

Then it becomes especially hard at 18. You did what you were able to do @unbuckle. I wouldn’t have been able to do what I am doing had dd been 18. And she went onto meal plan at 16. And still I can only make food that she will eat. Dd is a complex case and it sounds as if you’re battling with the same. She is very rigid in what she will have. And everything needs to be cooked and prepped in a certain way, otherwise she won’t eat it. My dd’s trump card is ‘I was just about to have x, but because you told me to I’m not going to now.’ It’s all bs. But very frustrating. And it is very difficult to battle with an anorexic, who can’t relinquish any control, ie has demand avoidance issues. So I side step.

As for getting your dd up earlier @Weightlossworried, I spoke to the ED coach this morning. She isn’t concerned about that and prioritises sleep… she was an inpatient MH nurse for over 20 years btw. Dd is amalgamating breakfast and morning snack now that she’s on exam leave and I think this will continue. I have to be realistic, she’s almost 18! When she was on meal plan, if she ate breakfast / snack combined say at 11am, I got her to agree to eat most of the breakfast and snack together and we planned one element from that to have with her lunch. She therefore didn’t drop her intake, she just combined it.

Sometimes you pick your battles. And I would rather use the energy to nudge dd to eat enough, rather than to increase anxiety around breakfast and morning snack, as these are generally the most difficult to eat due to food noise.

I hope your dd has managed to eat ok again today @CuppaTandBicky

Its such a tricky balancing act between being firm and maintaining a good relationship so they trust you.

Thanks we have had an ok day today. I am sticking to the things she will agree to eat and having set times for her to eat.

I have tried being sneaky but had limited success with that as I've been caught out a few times but one success was that as eggs seem to be an acceptable food so I found some "extra large" ones in the supermarket which has added another 30-40 calories without any complaints...

We have broken the 1000cal barrier today for the first time with me sticking to her agreed "acceptable" foods and me dictating times to eat. (And making her meals in the same bowl with small kid sized cutlery for some reason seems to work....maybe it makes it last longer???)

I wish I knew whether I'm doing the right thing as I feel at the moment she is still 90% in control. But today has been a good day.

I know we’ve been told to expect a marathon not a sprint.. but I’m wondering when / how soon into the meal plan might we start to notice physical changes? It’s the little things I notice every day like her bones sticking out of her bottom when she bends down, and that her face looks different these days. It makes me so sad and I find it hard to see anything else. I have heard that the weight first has to go to the tummy and then works its way from there.. it feels like she’s eating well. Today she ate 3 meals and snacks. She’s still not letting me cook breakfast or lunch but with full supervision. She had eggs, avocado etc. cream cheese and lots of yoghurt for snacks with a crumpet.

@CuppaTandBicky duck eggs are even better calorie wise. The cutlery thing is an anorexic behaviour, my dd had a favourite (safe) bowl she’d eat out of.

Wrangling control is really hard but worth it, it’s good you’re setting the times and hopefully you can work on preparing the food as well.

Ooh good tip, do duck eggs taste any different? Never had one!

Yes that's how I feel @Mummyoflittledragon with regards to breakfast, that's her toughest meal. She never had much of an appetite in the morning before the ed so I know it's her toughest meal. I do see the validity in the suggestion from the dietician and we are actually waking her earlier than she would naturally wake up - which would be lunchtime - but I don't think battling her to go earlier is helpful.

I agree @CuppaTandBicky it is hard to get the balance of being firm but maintaining trust and closeness. My DD is so socially isolated at the moment that I feel she really needs a good relationship with us.

Had a crappy lunchtime yesterday. I'm away with work for 1 night and supervised lunch before I went. DD was being a typical eating disordered teen and picking at the food so I gently said something like 'come on, you need to eat it properly'. She responded with a sarky comment - again not unexpected - but what upset me was DH laughing with her/at her comment. We're normally a team but I felt like he completely undermined me. He knows how helpless I feel when she won't eat because no prompts really work so him laughing at my attempt felt so hurtful. The only good thing was I actually didn't feel guilty when I left.

I don’t think duck eggs taste any different, especially good if you’re making scrambled eggs or omelette.

@Weightlossworried did you pull your dh up on that afterwards? Yy to having a break at work!

Very much same here about social isolation. I feel I'm her only "friend" at the moment.
I know I read it's part of the illness but it really does make it feel like this eating disorder is their whole life.

Try to enjoy the time away as a bit of a distraction. Can be a good thing...