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

123 replies

Mummyoflittledragon · 12/05/2026 19:43

New thread. The old one is full…

OP posts:
Anothersetback · 16/05/2026 08:19

Omhaf,
Dd Tried to get monthly weight checks at gp, took a few months to happen, and certainly not monthly. Gp referred to NHS ED services. Refused to take her on. University refused to take her on as ED is too complex. A voluntary service recommended by a mumsnetter here took her finally in, but they were so busy it took a year for her to be seen.

Uni has been helpful that they have given her priority in accommodation, dd felt non catered suited her better than catered.

MeowBerry · 16/05/2026 08:37

Morning all, we completed the last day of Multi Family Therapy yesterday, and I've found out we're on MFT pathway, so weekly weigh ins and meetings for now. Our therapist spoke to DS yesterday and told him he needed to eat more this week and we would be taking more control over his meals. He's really reticent, I've added a banana to his usual breakfast and he's got really upset and cried so much he's given himself a nosebleed. The Eva Musby book recommended by others is arriving today!! Good luck today everyone x

Libre2 · 16/05/2026 08:49

So sorry everyone is struggling so much. It is such a hard road. I realise we have been very fortunate that DD has been so compliant so far. She is now at around 92% wfh but is feeling very sad that she doesn’t recognise her body any more. She said it’s not the eating that causes her distress but that none of her year 9 clothes fit and there shouldn’t be that much of a difference between year 9 and 10. She had to take her Nike Pros off at school yesterday because they were too tight (she wears them under her skirt. Her skirt is also getting too tight).

She looks back to normal to me but I wonder therefore if she was always underweight. Her periods still haven’t started.

She also would like to start running again but is very self aware as she said she doesn’t feel like she can start because she doesn’t know how to do it without feeling like she she has to do it - if that makes sense.

Girliefriendlikespuppies · 16/05/2026 08:55

@Libre2 I’d explain that it’s normal to be growing and getting bigger at her age and then buy new clothes. Some of the ED was definitely triggered by my DDs fear of growing up and that was just another thing to work through.

Girliefriendlikespuppies · 16/05/2026 09:00

My dd is going to uni in sept and im worried about how she’ll manage, she is well at the moment and completely independent with food but i still support by doing the bulk of the shopping, making sure theres enough food in and cooking most of the dinners. I am trying to prepare her by getting her to cook once or twice a week…

Mummyoflittledragon · 16/05/2026 09:00

@Anothersetback
Dd is year 13. It would be safest for her to live at home next year or at least to be within easy reach. Not because I want to control her or clip her wings, but because she won’t admit to a problem and I’m constantly pulling her back from relapse. She’s absolutely sick to the back teeth of me, because I am constantly at her to eat, which she sees as control. And she is desperate to get away from me. So desperate she may just leave, especially if things go wrong… See below holiday.

It’s not control. I am doing this so that she can live her life. And so that she can live autonomously when ready. If I weren’t doing this, it’s very possible she would deteriorate to where she was 2 years ago, red on MEEDS. And she can’t go into hospital due to her seizure condition. The ED coach (who has decades of in patient care experience in ED) told me after dd was no longer in the potential at moderate risk of death (due to refusing medical observations so we didn't know where she was) that she would have come out of in patient care unrecognisable or in a box.

And the coach was very clear to me. I saved dd’s life. Dd point blank refuses to talk to the coach. If she would engage with the coach, I could back away a considerable amount and be a lot more like just mum again. Every time she get anxious she restricts. And if I’m not there to tell her, God knows what will happen. Well, unless she copies the other students around her, she will slowly restrict more and more. If she progresses this summer, she’s more likely, not less to stay at home next year as she will recognise her needs.

And she needs an inordinate amount of support. Yet she doesn’t see it at all. Looking after her in the absence of her looking after herself and all the admin I need to do to nudge her slowly forward is almost a full time job. I’m now stepping in to help get her on track for her one of her A levels as I have a degree in it. She wouldn’t have let me before.

She isn’t diagnosed and therefore not under ED services as she was too anxious to engage. I got a private coach involved 2 years ago and by threatening not to go on a holiday she desperately wanted to go on, we got her on meal plan, 3 meals and 3 snacks. We meant it btw and that was 2 days before departure. And she put on a little weight whilst away and started to get hungry again, much of that was because we took a really good friend with us, who helped dd a lot.

Then as soon as she was 16 and 3.5 weeks after getting her on meal plan, she signed herself off from CAMHS. She pulled the wool over the eyes of the psychiatrist, who told her she doesn’t have an ED. That was awful and took 4 months to deprogramme dd from it.

She still isn’t admitting an issue. And she’s not properly been on meal plan since January, when she declared she’s an adult and can eat what she wants, when she wants. She halved her intake overnight on that one, but has since increased, however, that was me turning her around. It’s always me turning her around. The coach and I really hoped she’d learn something from that relapse, but sadly not.

She’s also booked a holiday in less than 2 months without dh and I okaying it. She said she tried to discuss it with us, but the only discussion was I am going. I am an adult - she will be by then, but isn’t yet. Dh and I are refusing to pay. But her friend’s family is loaded, so I presume they’re lending her the money until her trust fund comes through. There’s 3 of them.

If it were just the one other friend, it would be less of an issue. Being just 2, they’d possibly be ok. Dd went away with her for 3 nights last year and they were ok. And the girl says she isn’t going to get drunk (dd doesn’t drink much), but I’m figuring she will end up doing so, as the 3rd girl drinks a lot. What I didn’t like is they didn’t always stick together on those 3 nights. Not an issue at a festival, but would be at a party resort. Dd is very vulnerable and naive. Open to exploitation. She was groomed by a guy last year. I got her away from him now with dh’s help.

The 3rd friend is pretty dependent on dd, in the year below and has bulemia. She and dd went on a ski trip with school last year and spent a lot of time together. Dd came back from the ski trip in a real state, hadn’t eaten anywhere near enough in very early stage relapse and I turned her around. But dd isn’t letting me do that anymore.

The girl has no concept of dd’s needs. It was all about the girl, who medical needs. And dd has a seizure if she goes to hospital. Dd says the girl has now stopped vomiting over food, but she does regularly over alcohol. And vomiting over alcohol is just another way to purge the food. So the behaviour is absolutely still there.

The girl also has ARFID. Dd has ARFID tendencies albeit not diagnosed. So 2 eating disorders. And we all know that anyone with an Eating Disorder should stay away from anyone else with ED as the EDs work together to make the sufferers worse.

Dd says these 2 girls are her besties, yet she’s hiding from them that she’s still very mentally unwell. There’s only 2 friends, who are allowed to know. And it’s not them. And even if the friends she’s booked to go away with knew, they aren’t equipped to help her. One suffering from ED herself, the other just loves to have fun and party, which is what dd likes about her.

I figure I am not going to be able to stop dd from going. It’s a massive worry. The only hope is that dd thinks the boy I mentioned before is going to the same resort at roughly the same time. They are now tentative… well sort of more than that. I will be hopefully see him at some stage. And I will be asking if he is going to be around. And I will hopefully have the opportunity to ask hi, if he will check in on her every day, see if she’s eating enough. I know he really cares about her. She needs to be having at least 3000 calories, especially as I bet she will be on the go a lot, so eating at least the same amount of an active lad of their age. Such a worry.

OP posts:
Mummyoflittledragon · 16/05/2026 09:03

Girliefriendlikespuppies · 16/05/2026 09:00

My dd is going to uni in sept and im worried about how she’ll manage, she is well at the moment and completely independent with food but i still support by doing the bulk of the shopping, making sure theres enough food in and cooking most of the dinners. I am trying to prepare her by getting her to cook once or twice a week…

I hope your dd will be ok. She’s recovered now, but I see you’re still concerned. She has a good chance of being ok I think.

My dd has just started cooking once or twice a week for herself. I do all the shopping. Her food comes from at least 4 different places. I gave her the list. She told me I was forcing her to eat like this (I’m not) and she’d be fine. She has no concept of how a day goes or how to look after herself and has a lot of magical thinking.

OP posts:
Mummyoflittledragon · 16/05/2026 09:10

@Libre2 if your dd’s periods aren’t back yet, they can take time. However, the body recovers a lot quicker than the brain. The rule of thumb to full recovery is 10% over what they were before the start of the ED. But you have to trace it right back to the start. It’s often a lot further than you think. I wouldn’t think your dd is yet where she needs to be at all weight wise.

@MeowBerry
Sorry your ds is struggling. It’s really good he’s willing to eat like this. Even if it is very distressing for you both. Try to see the positives. He’s engaging and prepared to do it when lots of sufferers won’t do that, my dd included.

You’re doing really well. Just keep going.

OP posts:
MeowBerry · 16/05/2026 09:32

Mummyoflittledragon · 16/05/2026 09:03

I hope your dd will be ok. She’s recovered now, but I see you’re still concerned. She has a good chance of being ok I think.

My dd has just started cooking once or twice a week for herself. I do all the shopping. Her food comes from at least 4 different places. I gave her the list. She told me I was forcing her to eat like this (I’m not) and she’d be fine. She has no concept of how a day goes or how to look after herself and has a lot of magical thinking.

I cannot begin to imagine the journey you've been on , wishing you a stress free day!

Anothersetback · 16/05/2026 10:24

For those considering uni.
There is , what I thought useful , information about transitioning to uni:
Freedfromed
And
Something called New maudsley capsule.
I have them as documents so not sure how to do link.

Also, I would still advise to apply for DSA, even if you don't know at this stage what help you need.
Dd has a non medical mentor, to just have a chat with, or a moan. She meets up weekly in person.

Since dd was 16 I have had no contact with Cahms. They discharged her at 18, presumed recovered but she had already lost weight at the time of discharge.

Anothersetback · 16/05/2026 10:33

Mummyoflittledragon
Also a thought, the mentor could definitely help with admin stuff.

You mentioned about the boy checking up on your daughter. I also had simar ideas but then decided against it as I didn't feel I could ask another young person this, to put that responsibility on someone who is so young and not direct family

LurkyLurkyLou · 16/05/2026 12:03

Libre2 · 16/05/2026 08:49

So sorry everyone is struggling so much. It is such a hard road. I realise we have been very fortunate that DD has been so compliant so far. She is now at around 92% wfh but is feeling very sad that she doesn’t recognise her body any more. She said it’s not the eating that causes her distress but that none of her year 9 clothes fit and there shouldn’t be that much of a difference between year 9 and 10. She had to take her Nike Pros off at school yesterday because they were too tight (she wears them under her skirt. Her skirt is also getting too tight).

She looks back to normal to me but I wonder therefore if she was always underweight. Her periods still haven’t started.

She also would like to start running again but is very self aware as she said she doesn’t feel like she can start because she doesn’t know how to do it without feeling like she she has to do it - if that makes sense.

Your DDs path sounds similar to mine. She was compliant, and recovered her weight relatively quickly, but was then very sad about her weight and how she looked. No make up, very limited clothes she was comfortable in, and reluctant to socialise or do any exercise in public. Very sad and hard to see, and for others to understand i know, so sending solidarity
We've taken it slowly, with camhs, and slowly her confidence is improving. We accepted she wasn't comfortable with her looks, so no photos or video calls, covered her bedroom mirror ( just with a scarf so she can remove at will) supported her showering (in the dark, with one of us chatting outside if she wanted or outside her room as she dressed), kept on washing those same few outfits, buying more of the same or similar from vinted. As PP said we reassured her growing was normal and just kept at the eating and slowly introducing exercise and widening her world in terms of school and friends. Slowly each of those scaffolds have reduced, and your DD will get there too. Her camhs therapist has set her homework to get back to liking clothes shopping, first going to the clothes bit of a supermarket with the aim of getting something for me, then a clothes shop, again for me. Then trying something on herself in a non threatening shop, slowly building up to hanging out in p-mark again. Still a work in progress of course
Periods took a while too, a good few months after getting into the "safe" wfh zone, but we got there in the end.

Weightlossworried · 16/05/2026 12:32

@10YellowTulips I'm so sorry you've not had the help you so clearly need. I'm incredulous that they wouldn't offer help to a 15 year old on the basis that they're saying they don't want to change. Is that not classic ed behaviour?! I hope you and she are ok.

My DD has had a light period/some spotting. She's 79% WFH so I'm quite surprised by that. Is it unusual? Is it a hopeful sign? I feel conflicted. It's obviously upset her and she says she feels 'invalidated' and she's also saying that this proves she doesn't need to put on any more weight. She has demanded we don't tell CAMHs.

I find myself wishing again that we had access to some kind of therapy for her so she could work through her feelings about this rather than have me just blundering around desperately trying not to say the wrong thing

Mummyoflittledragon · 16/05/2026 13:15

Anothersetback · 16/05/2026 10:33

Mummyoflittledragon
Also a thought, the mentor could definitely help with admin stuff.

You mentioned about the boy checking up on your daughter. I also had simar ideas but then decided against it as I didn't feel I could ask another young person this, to put that responsibility on someone who is so young and not direct family

Thanks @Anothersetback . Someone mentioned DSA on the other thread. Dd definitely qualifies for help even without the ED. This was also my thought. I need to get dd to give me permission to speak to the university. She needs A LOT of help. How she sees herself and how people, who are in the know see her are very different.

As for the boy, I don’t have any choice if dd goes on holiday... presuming they’re at the same place at the same time. He has the most amazing emotional intelligence for someone his age. He can handle it and I believe he would be up for it if framed correctly. She is vulnerable to serious exploitation. And very beautiful. I am concerned about drugging, maybe even people trafficking.

Thanks @MeowBerry yes, there’s been lots more besides. Maybe I’ll say more another day. 🙈

OP posts:
Mummyoflittledragon · 16/05/2026 13:29

Weightlossworried · 16/05/2026 12:32

@10YellowTulips I'm so sorry you've not had the help you so clearly need. I'm incredulous that they wouldn't offer help to a 15 year old on the basis that they're saying they don't want to change. Is that not classic ed behaviour?! I hope you and she are ok.

My DD has had a light period/some spotting. She's 79% WFH so I'm quite surprised by that. Is it unusual? Is it a hopeful sign? I feel conflicted. It's obviously upset her and she says she feels 'invalidated' and she's also saying that this proves she doesn't need to put on any more weight. She has demanded we don't tell CAMHs.

I find myself wishing again that we had access to some kind of therapy for her so she could work through her feelings about this rather than have me just blundering around desperately trying not to say the wrong thing

Yes this is the start. But it is unlikely to be regular at this stage. So her periods could now come sporadically, every 3 weeks or she may have nothing more for a couple of months.

As for what to say to your dd, not sure. Maybe something like her body knows what it needs to do to recover. That you love her and really do understand this is challenging for her. That you are with her. And whatever she needs, you will be there, right beside her, helping her through this. Motivational stuff.

CAMHS do need to know. But it’s one step at a time, so I wouldn’t push it for perhaps a couple of weeks if she needs that time. She’s recovering and needs to get her head around it. And I wouldn’t argue directly against the putting weight on. You know she’s nowhere near weight restored I imagine. Always best to side step. I’m not terribly good at that though.

OP posts:
Anothersetback · 16/05/2026 13:46

Mummyoflittledragon
"Someone mentioned DSA on the other thread"

Yes me😊

But to again mention, DSA not directly related to uni, you apply through student finance. You do not need to apply for student finance, you can still get DSA. It is a very slow process so really need to be done now.

As I have mentioned to Dd several times... Because she doesn't get student finance she has to apply every year. And she is dragging her feet. Well ,busy with exams and very stressed. So this makes me stressed. And when stressed I go back to mumsnet .......

Omhaf · 16/05/2026 14:06

@Mummyoflittledragon on the subject of uni / mentors: DS is ASD and has a student loan and DSA for ASD including 2 hours of mentoring a week. Student disability services have been amazing; and once DS accepted mentoring might help (not til Jan of Y1) everything changed for the better. We’ve found (not food related) support at uni in a v different (positive) league compared to school. And yes, make sure your DD puts in writing to disability services that they can talk to you.

Mummyoflittledragon · 16/05/2026 14:09

Ah it was you @Anothersetback 🤗. Thanks. Agreed about going back to Mumsnet. I’m so stressed right now it’s unreal. And giving advice to others is very soothing, reassuring that I can do this even when dd becomes so vile. I am strong. I am powerful and all that malarkey. Wink

Thats reassuring somewhat @Omhaf. I just don’t know if they will say dd’s needs are too great. And how to approach that. I will need a little time to think.

Is DSA applied for against a specific university or university in general?

OP posts:
Omhaf · 16/05/2026 14:33

DSA is associated with student funding so you apply from March (?) before you know where you are going. You can also add your DSA application to your SFE finance application later in the process.

We did them in two parts: March/April of Y13 for DS was when his ability to mask / hold it together all fell apart and although we’d known DS was ASD since he was about 5, DH was v against diagnosis b/c he didn’t “need” it. By Y13 it became v evident he did need it; there was no way he was going to manage uni without significant scaffolding. We didn’t get diagnosis til August, but uni, DASS, student finance pulled out all the stops to make sure everything was in place before he started mid September. I was blown away. So I don’t know anything about ED support at uni, but ND support we have found really good. (DS does have food challenges but not currently life limiting ones).

Mummyoflittledragon · 16/05/2026 14:57

Ok fab, thanks! Idk if dd will engage in ED support tbh. The other stuff is in a way more important.

OP posts:
Anothersetback · 16/05/2026 15:33

Sorry to go on about it.
At this stage you don't need to decide what support you want or need.

Just apply for DSA, just get the form completed. Now....
It might take a few months before the next step happens. By then you may have a better idea where dd is going, what support is needed.
I felt very much DSA people were offering rather than we having to ask for it.

Dd didn't get any specific ED support, DSA mentors are not health care professionals.

Mummyoflittledragon · 16/05/2026 16:43

Ok thanks yes, I can’t imagine there would be any specific ED support. It’s the other stuff that dd needs that I’m focusing on. Like the basics of how to look after herself that she’s blithely ignoring, despite my trying. I will need the ED coach to tell me how to say this to dd first as I haven’t been overtly explicit. That’s going to be fun... 😩

OP posts:
CuppaTandBicky · 16/05/2026 18:57

Just posting for cathartic purposes really.

Today is a bad day.

Lots of sadness, depression, saying awful things, DD has only eaten 300 cals and that took some persuading.

Today was supposed to be a good day, we were looking forward to it for various reasons. But it was not a good day.

Ready to go to bed and start a new day!

LurkyLurkyLou · 16/05/2026 21:08

CuppaTandBicky · 16/05/2026 18:57

Just posting for cathartic purposes really.

Today is a bad day.

Lots of sadness, depression, saying awful things, DD has only eaten 300 cals and that took some persuading.

Today was supposed to be a good day, we were looking forward to it for various reasons. But it was not a good day.

Ready to go to bed and start a new day!

Sorry to hear that. Tomorrow is a new day x

sum12luv · 17/05/2026 08:26

Just a quick message. My son is on a nasogastric tube and being monitored in hospital. He has a mental health support worker with him 24/7. I visit, with other family members, every afternoon.

My son keeps insisting that he wants to come 'home' to recover. Yet, a place on an ED unit 80 miles from our home has been arranged to start on Thursday.

I know he will have to go to the unit. I would love his dream of recovering at home to be a reality, but the risk is too high.

Has anyone any experience of loved ones being on ED units that you would be able to share? They did not exist when I had my ED (40+ years ago), rather, I was placed on an acute psychiatric ward. The unit is for adults (17.5 years +).