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Support thread 13 for parents of young people with an eating disorder

967 replies

Curlyhairedassasin · 24/09/2024 20:22

New thread as the other one is filling up fast....

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Shanghai101 · 12/05/2025 10:03

I agree @Glitterfarti. I would keep her in school if possible and if it is what she wants. Their worlds shrink so much when they have an ED so I would be trying to avoid that as much as possible. But if she is at a very low weight, she would need to agree to eating lunch or some arrangement that works for you as a family (I used to drive to school and DD would have lunch in the car).
A person centered approach is the only approach that works for us but that may be because we also have ND layered on top of the ED.

wandawaves · 12/05/2025 12:46

Right, day 1 of attempt 1 of refeeding.... 3 meals (of varying sizes) were had! Snacks were all strongly refused except for a sip of orange juice, though I'm still holding out hope for a midnight dessert.
I made one of her favourite dinners, and snuck in so much extra calories that as per my app calculations, one serve was 900 calories! I was pretty proud of myself lol.

That said, I aimed for 50% of her ideal calories for weight gain (50% to start with, to reduce risk of refeeding syndrome), and it was pretty hard work. I don't know how she'll ever be able to stomach enough calories for weight gain....?

There was only 1 moment of anger from her toward me, and i just had to repeat to myself in my head that "this is not her talking, this is the eating disorder". I gave her a kiss on the head as I walked out and told her i loved her and I understand it must be so frustrating.

Every one of us on this thread must have the patience of a saint! It's such an incredibly difficult thing to go through as a parent.

TheaBrandt1 · 12/05/2025 12:57

Can you use school as a threat? The horror of missing school and resitting a year was strong enough to get Dd to comply with our magic plate method.

I pepper our conversations with manipulations about how sad it would be if she missed boardmasters / had to retake year 10. These things are so awful to her they trump the ED. The psychiatrist said it was a good approach. Yes am being a bitch but I’m her mum not her friend and will use anything to get her to eat.

PermanentlyExhaustedPigeon80 · 12/05/2025 16:00

Sorry to hear you've had to come back @Glitterfarti - we're trying desperately to get DD back to school after a couple of short spells in hospital, and it's proving incredibly difficult. She seems to want to go the night before, but when it comes to it she just falls apart. I can really see the ED trying to shrink her world @Shanghai101 and isolate her, so feel strongly she should be at school if at all possible. This morning was a horror show though. She started coming up with reasons as soon as she woke up, and by the time I'd got her to school she was hysterical. We went in to a room with a pastoral member of staff and she just wouldn't let go of me - she was shouting, screaming, begging me not to leave her, hanging on to my clothes (it was like when she was a toddler first at nursery). We ended up back in the car for an hour, and then trying again for the next lesson. In the end I had to walk away, and the pastoral team got her to one lesson, but that was all she would tolerate, and she's then been back home with me for the rest of the day. I tried to insist on some school work, but she's so tired from being distressed and not eating enough, that it feels a bit pointless.

I hated having to leave her, and don't want to damage the trust she has in me, but at the same time she can't just stay at home indefinitely. Later this afternoon she did apologise and said she understood why I had to leave, but she's often calm, reasonable and reflective at this time, but it doesn't last until morning.

Does anyone have any suggestions for transitioning back to school? She's only missed about two weeks, so it's not long-term, but I feel like the longer she is out the harder it will be to go back. This morning we tried everything, including offering for her to just sit in the Library with a member of staff, and she was just adamant she couldn't cope. School have been quite supportive, but really left it up to us in terms of what she needs, and I could do with some more structured suggestions from them tbh. Not sure what would work though... God I'm tired.

PermanentlyExhaustedPigeon80 · 12/05/2025 16:04

@littlemissy12345 - how is your DD getting on?

Glitterfarti · 12/05/2025 16:06

@PermanentlyExhaustedPigeon80 , just keep going, small exposure if needed you walk her to pastoral offices and leave her there for as long as she can tolerate - I’ve worked in a school and did this for nearly half a term with a child, eventually she found her feet and started to thrive.

EDjustdiagnosed · 12/05/2025 22:23

I haven’t written anything on here since DD14 was diagnosed with anorexia back in November, but I’ve looked at the thread from time to time for support and lots of stuff people have written has been so helpful. Thank you! Sorry to read what everyone is going through.

It’s been a really tough 6 months for us, but DD is nearly weight restored and has managed to stay in school the whole time (with me providing all snacks and lunch, and eating with her). She has gained nearly 10kg in the last 3 months and seems very much back to her old self much of the time.

While she is physically much better, DD still doesn’t want to talk to anyone about it. Suspected autism, definitely lots of traits. Does anyone have experience of full recovery without ever engaging with a therapist? I’m guessing perhaps not on this thread, because we all have children who are still recovering!

But if anyone has any advice, I’d love to hear it. DD has a couple of lovely teachers at school who have taken the time to get to know her a bit and have a chat, but at the moment the chat is all centred around academics or music/art. DH and I have a session with an ED nurse once a week, who would normally work with the child too. But DD isn’t interested in speaking with her.

wandawaves · 13/05/2025 00:21

@PermanentlyExhaustedPigeon80 oh gosh, that sounds so distressing, for both of you. Does she have anxiety as well and is she medicated?
Would she agree to a graduated return, like just one lesson for a few days, then work up to 2 etc?
Or even smaller exposures like @Glitterfarti said. I do agree with you that the longer she's out, the harder it will be to go back. Stupid Covid lockdowns are a testament to that; they were the worst thing ever for my DD and her mental health.

Mummyoflittledragon · 13/05/2025 05:29

@PermanentlyExhaustedPigeon80
You’re welcome. I just wanted to ensure you’d seen the PM as things have been pretty active on the thread.

I’m sorry to see how distressed your dd is. I agree with persevering as eventually your dd will come to understand that you will be there for her whatever happens, that school isn’t a threat and nothing bad will happen to her. My dd had issues in primary school. It was so much easier at that age I think. I used to keep her distracted until it was almost time to go to school then get her dressed and ready for school in the last 5 minutes, basically creating a whirlwind so that she didn’t have time to think about things, which then kept her anxiety a lot lower. I realise this isn’t possible for an older child. Just wondering if distraction works for your dd in any shape or form. And what sort of things she would do with you / hee younger sibling (I think I’m right in saying you have a younger child?) before school eg crafting, watching tv etc.

As your dd is not eating much, her anxiety is very high and she is lacking resilience to overcome any kind of difficult situation. My dd likewise struggles a lot and yesterday morning she was in tears over something, which wouldn’t have fazed her before the illness. For your dd, this is manifesting through separation anxiety. My 16 yo dd also some separation anxiety herself.

The ED coach has spoken to me recently about using Socratic questioning for dd’s current obsession. It’s a therapeutic tool. I’m wondering if this could be of any use to you. If you google ‘Socratic questioning separation anxiety’, perhaps there will be some useful information. Instead of just reassuring your dd, you would be asking her questions to get her to gently challenge her thinking so that she works through this herself, albeit get that’s harder when her brain is being starved.

@wandawaves
I forgot you’re not in the UK. So the New Maudsley technique is a gentle approach to coax the ED sufferer out of their shell, support them, and nudge them in the right direction. I’ve changed how I speak to dd very much. I speak softly and gently, like she’s a much younger child than her age, as though she’s still a primary aged child. It’s slowly worked with dd albeit it’s taken quite some time. Here’s the Amazon link to the book. https://www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634?ie=UTF8&tag=googhydr-21&hvadid=719417706401&hvpos=&hvexid=&hvnetw=g&hvrand=2980061738185440580&hvpone=&hvptwo=&hvqmt=&hvdev=c&ref=pd_sl_3fqcld3nnr_e&tag=&ref=&adgrpid=170683664778&hvpone=&hvptwo=&hvadid=719417706401&hvpos=&hvnetw=g&hvrand=2980061738185440580&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9046178&hvtargid=dsa-1595363597442&hydadcr=&mcid=&gad_source=1 There is also a lot of information on the website. And a manual (caring for a loved one with an eating disorder), which is more comprehensive and gives you lots of examples, which could be useful if you aren’t able to access the workshops, details here: https://charliewaller.org/mental-health-training-support/parents-and-carers/eating-disorder-workshops ... but I don’t see why you wouldn’t be able to, it’s just timings in relation to your sleep time. A lot of the manual is on the new Maudsley website. https://thenewmaudsleyapproach.co.uk and here’s a link to the manual stuff. https://newmaudsleycarers-kent.co.uk/new-maudsley-carers/

As for snacks, just keep on going. The drinking the orange juice is largely symbolic at this stage and Jenny Langley talks a lot about micro steps. To gently challenge and get that sip of orange juice to be more than a sip. She talks about how someone went from drinking a thimble of milk to a small glass and a larger glass etc… and the milk started off as skimmed btw before changing to semi skimmed then full fat. I have tried this with my dd and thus far haven’t had much success due to suspected PDA. But it may work for your dd. Ie starting on what to us seems like a ridiculously small amount of something and gently, slowly working upwards.

@Glitterfarti
I am sorry that your dd is struggling so much for so long. I kept my dd at school. There were a couple of weeks, when she ate only 1200 calories the whole time and she was too ill to go and just went for certain lessons (I now know she should have been at hospital not school) but apart from that, she went in. She was GCSE year and desperately wanted to sit her exams. I used this to ensure she ate something at lunchtime otherwise I said I’d need to come and collect her.

I sent her a text every day varying the message about how much I love her / am proud of her etc reminding her each time to ‘please remember to eat something’. This was enough and a lot less direct than saying it to her, which would have elicited a PDA response. She admitted a long time after the fact that she only ate one of the 2 sandwiches and discarded the crust but it was symbolic. The main way that dd ate more, especially in the earlier days was to eat with her friends and they went out for lots of meals. At one point, this was the only way she’d eat at all. I know it’s common for parents to go to school at break / lunchtime. That simply wasn’t an option with dd. That would push her the other way. She’s admitted to the ED coach that she can only manage 3 meals a week eating with dh and me.

Dd has had a lot more time off than if she were well. If your dd is able to manage a whole day at school and physically well enough, it is also probably better for her to be in school. Direct threats, as you’re likely very aware, simply don’t work for a lot of sufferers, particularly if they’re neurodivergent. With dd it’s always been consequences and explanations. Asking her to please remember to eat to keep herself safe and that I’m going to need to pick her up if she’s not able to eat something at lunchtime because if she isn’t fuelling her body, she doesn’t have the energy to be there.

@EDjustdiagnosed
It sounds as if your dd’s anxiety is possibly very high and if this is the case, she simply cannot engage. My dd is only now starting to engage with the ED coach, almost one year on and that’s taken monumental amounts of work and involved the coach borrowing a dog to go on walks with dd. It’s been dh and me, mainly me, who has been getting dd to eat and to try to build her resilience up, but it’s very long and hard. Jenny Langley (her contact details are on the New Maudsley website I just linked above) has talked in her workshops about how some ED sufferers can recover without accessing therapy. Once the brain has recovered, the anxiety reduces and this can take up to a couple of years. You’ve done absolutely brilliantly to get your dd to regain so much weight. It is only natural that her anxiety is high as she’s been through a lot of changes quite quickly. To compare to my dd, who from the lowest point to now has gained 5 kilos in 9 months and there have been many challenges along the way. Tabitha Farrar healed herself and doesn’t believe in therapy. Her stuff is only for adults and she’s written about her journey as well as recovery books. Here’s a link to her website https://tabithafarrar.com.

The New Maudsley Approach – A resource for professionals and carers of people with eating disorders

https://thenewmaudsleyapproach.co.uk

Mummyoflittledragon · 13/05/2025 05:32

@PermanentlyExhaustedPigeon80
I forgot to say that the holiday seems like a long way away. Just keep on going with that one. She seems indifferent probably because it is so overwhelming. If there’s anything more immediate she’d like to do that you could work on that would be useful. It’s all stepping stones in the process.

EDjustdiagnosed · 13/05/2025 07:24

Thank you @Mummyoflittledragon. That’s so useful.

PermanentlyExhaustedPigeon80 · 13/05/2025 17:36

Thanks @Mummyoflittledragon - that's so helpful. Will try the Socratic questioning approach, in the hope it might help when she shuts down. It was definitely a form of separation anxiety, which seems odd when so often she treats me like the enemy! I suppose I still must be a safe place too.

@wandawaves DD definitely has anxiety, and suspected autism too, so that is an additional factor in all of this. We haven't tried medication, but I think that might be a next step tbh as she just isn't able to engage with the treatment programme / meal plans / therapeutic conversations at the moment. Amazingly she managed a whole morning in school today. We talked about it last night, and she felt that would be manageable, as long as I promised to pick her up at lunchtime. I was really surprised (in a good way) that she managed it, but we also tried the 'whirlwind' approach suggested by @Mummyoflittledragon and got her out of the house as soon as possible, which I think helped as there was less time for the anxiety to build up. Going to meet school on Friday to talk about a more structured reduced timetable, to help build back up to full-time school.

What do others do when you get an extreme reaction to an otherwise reasonable parenting request / comment? E.g. I've just asked DD to have water instead of another fizzy drink (as she's had several today, and I think she uses them to help her feel fuller) and she's had a very strong reaction. Saying 'I can't drink anything now', refusing to speak to me, and now refusing to accept any suggestions for dinner. I feel like this is a way of punishing me, but not sure how to bring her out of this ED state, and back to reality. She wants me to apologise and say I got it wrong, but I'm not sure this would be helpful either, as I don't think I did! Maybe the tone could have been gentler, but the request was fine.

Urgh, this is all such a minefield, with trip wires at every turn.

PermanentlyExhaustedPigeon80 · 13/05/2025 17:47

Mummyoflittledragon · 13/05/2025 05:32

@PermanentlyExhaustedPigeon80
I forgot to say that the holiday seems like a long way away. Just keep on going with that one. She seems indifferent probably because it is so overwhelming. If there’s anything more immediate she’d like to do that you could work on that would be useful. It’s all stepping stones in the process.

Good point - will try and book in some fun stuff a bit sooner, although it's hard to know what she wants to do at the moment, as she's got very little enthusiasm for anything.

Mummyoflittledragon · 13/05/2025 18:06

PermanentlyExhaustedPigeon80 · 13/05/2025 17:36

Thanks @Mummyoflittledragon - that's so helpful. Will try the Socratic questioning approach, in the hope it might help when she shuts down. It was definitely a form of separation anxiety, which seems odd when so often she treats me like the enemy! I suppose I still must be a safe place too.

@wandawaves DD definitely has anxiety, and suspected autism too, so that is an additional factor in all of this. We haven't tried medication, but I think that might be a next step tbh as she just isn't able to engage with the treatment programme / meal plans / therapeutic conversations at the moment. Amazingly she managed a whole morning in school today. We talked about it last night, and she felt that would be manageable, as long as I promised to pick her up at lunchtime. I was really surprised (in a good way) that she managed it, but we also tried the 'whirlwind' approach suggested by @Mummyoflittledragon and got her out of the house as soon as possible, which I think helped as there was less time for the anxiety to build up. Going to meet school on Friday to talk about a more structured reduced timetable, to help build back up to full-time school.

What do others do when you get an extreme reaction to an otherwise reasonable parenting request / comment? E.g. I've just asked DD to have water instead of another fizzy drink (as she's had several today, and I think she uses them to help her feel fuller) and she's had a very strong reaction. Saying 'I can't drink anything now', refusing to speak to me, and now refusing to accept any suggestions for dinner. I feel like this is a way of punishing me, but not sure how to bring her out of this ED state, and back to reality. She wants me to apologise and say I got it wrong, but I'm not sure this would be helpful either, as I don't think I did! Maybe the tone could have been gentler, but the request was fine.

Urgh, this is all such a minefield, with trip wires at every turn.

Edited

I’d go for the approach of ‘sweetheart I’m sorry that I upset you when I talked about fizzy drinks. I can see how hard this is for you and I only said this because I love you very much and because I want you to have the energy to go to school tomorrow because you did so well today. Because you really want to be able to keep going to school, it’s important to ensure your nutritional needs are met so I was thinking we could perhaps talk about what I could make you for dinner.’ She may scream and shout. But you may find if you leave her she will come to you. Leave her in her room or wherever and say something like ‘I’m downstairs if you need anything my lovely girl.’

OP posts:
Shanghai101 · 13/05/2025 18:56

@PermanentlyExhaustedPigeon80 you describe my DD exactly (she is diagnosed with ADHD without hyperactivity, and autistic traits). In my experience there is no point in trying to reason with her when she is upset. Whilst tone is important, I don’t think it would matter how gentle you were with her when she is emotionally dysregulated. When she is calmer, use Mummy’s approach to gently explain your reasoning to her.
I think you had a great win this morning with school. And I agree that her meltdowns are most likely extreme anxiety. Like everyone with an ED, her self esteem is probably low and by listening to her and finding manageable solutions you are helping her build resilience. Jenny Langley advises love bombing to build their self esteem “pennies in the piggy bank”.
@EDjustdiagnosed some people recover from an ED without therapy. Weight restoring was enough to get them back on track. However, if you think that your DD might have autism then I would recommend speaking to somebody with a specialism in autism and eating disorders for advice. Being neurodivergent makes recovery more difficult. She will almost certainly need a person centred approach as many ED traits can be confused with pre-existing autistic traits For my DD, we had to build trust and then let her take control of her recovery (she is now 21 so was an older teen when diagnosed). .Having choice was extremely important to her.

Katewashere · 28/07/2025 18:35

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