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Support thread 14 for parents of young people with an eating disorder

1000 replies

Curlyhairedassasin · 13/05/2025 18:40

New thread as old one is filling up

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Mummyoflittledragon · 04/12/2025 00:15

@Spendthrifting
That’s all really positive stuff. And it’s fantastic you were brave enough to have done this. Did you prepare your dd by going to restaurants and things? I can’t imagine doing that with my dd. She didn’t cope well with set foods being served even before the ED. She has managed stuff like this at a smaller scale such as going out for a set meal. Dh has a friend, who for the past 3 years has invited dd and dh once a year to some swish corporate style hospitality (football so not one for me!). She’s managed that twice now as the first year she was in the thick of it and it’s been really important to her recovery. She needed to be well prepared, especially the first time.

Dd (as a reminder shes 17) has started eating chicken again, which is a major step. Firstly it was at a restaurant with a friend (friend gave me the head’s up). Then I wangled it so that we went to the same restaurant for our wedding anniversary meal out (she will only go out for special occasions with us) and I told dh we were going to both order the same meal and see if dd did the same. She did but unfortunately it was dark meat and she didn’t like it. Then a pause of about 2 months and one day she said she wanted a piece of breaded chicken. She’s now been eating that 2-3 times a week for a fortnight. She has been compensating by restricting in other areas even though ironically the meal is much lower in calories than the two vegetarian options she eats… because she’s not a calorie counter. I’m gently nudging her out of that mindset.

@SendTheNextOneIn @Pearl97
As for how we are spending Christmas. Last year and this year at home. Last year my mum, brother and his ds came. Having a kid, who eats at the table encourages her to eat. She only manages 2 meals a week with us. The rest is in her room or out with friends. This year my nephew is at his mum’s and my brother is invited there so it’s just my mum, her partner, dh, dd and me.

Last year the ED went really wild and dd gorged herself just for the one day only, including chocolate, which she wasn’t eating at all back then and had terrible tummy pains as a result. She used to get a lot of pains from restricting in the day then over eating in the evenings but I’ve managed to get her out of that. So I’m going to be more mindful of that potentially happening.

As for what I’m going to serve. I’ve decided to buy a chicken and a joint of beef rather than a turkey. Idk if dd will eat the chicken. But I’ve got more chance of her than with a turkey. We are then off to my brother’s. I’ll be organising the food for that too and I’ll buy a turkey because she is more likely to relax with her cousin. She is only currently eating the breaded chicken but may go for these things in company. TBC.

I am quietly confident we are pushing into end stages here with dd. She is showing signs that she wants to get better, which is amazing as she had anasognosia for much of 2024. It took the near relapse of 3 / 4 weeks ago plus some gentle nudging to change the mindset. That doesn’t mean she’s nice with me by a long shot. But the ED is being quietened and albeit reacts angrily to me, the anger is of shorter duration. Each relapse or near miss has brought progress. And I’ve learned that relapses are scary stuff, but they can also be learning processes for dd as well as me even if for her that learning hasn’t been at a conscious level.

Mummyoflittledragon · 04/12/2025 00:18

Thisnowtoo · 03/12/2025 21:18

This resonates. Dd was diagnoised shortly before the summer and we almost didnt go on our holiday as her heart rate was low, but it was beneficial.
After that we ate out a lot - for most of september.

Yes, we went on holiday with a friend last year. That helped loads. And at one stage when things were really bad in 2023, dd was only eating (and eating once a day) if she ate out with friends. And last year she ate out loads with friends. It’s slowly reduced this year and she doesn’t eat out much anymore.

unbuckle · 04/12/2025 00:54

@Shedqueen my dc has only been referred for 7 months and has just been discharged, no weight gain, no follow up, no reason given to carers. I am trying complaining to the CEO, in theory this should send them scrambling to resolve, in pratice I've just had a holding email. I have no idea what to do. They think they have been discharged because they are well and their BMI is sufficient. It isn't and they aren't

I get services are in crisis but they are creating more work for themselves defending the indefensible than they ever would if they saw patients

unbuckle · 04/12/2025 01:01

@Mummyoflittledragon what you've done is amazing. When your dd wasn't acceptimg she was ill were you still trying to get her to eat to the plan? I have given up with my DC as it seemed to make things worse - the more food I provided the more they hid

Spendthrifting · 04/12/2025 07:13

Restaurants are very difficult for dd - even prior to anorexia she had decision-making paralysis/anxiety. The part of the world where we were they eat the same food for breakfast/lunch/dinner - think noodles/curry for breakfast so everything was different to home. Because it was a serve yourself system there was a lot of choice and she was able to take a small amount of different things- it was almost a game every meal to find something she liked. I also took some control and usually plonked something I knew she could eat on a plate between several of us that she would pick at. She was also exposed to lots of people eating ‘normal’ portions which might have helped with her internal feelings of guilt over what she was eating.
She was a little anxious before we went, about the food I’m sure and also about how she could hide her self-harm marks in the heat. That part was very uncomfortable for her as she was very covered up despite sweltering heat and humidity. I tried to reassure her about the food - that there would be something she could eat even if it was just rice. She did wear shorts and I bought her thin long-sleeved tops so we got a chance to see her body to a certain extent which was somewhat comforting as she normally hides under massively oversized clothing (at home) and refuses to be weighed.
For Christmas- we are hosting - I will try to build on having an array of food that she can like some of and maybe not like others and that’s ok. Also making potato dauphinois as I’ve discovered she likes that and will nibble on leftovers…
At the moment we are benefiting from a relatively long period of higher calorie intake which in turn means she has more appetite so I’m trying to cash in on that!
Overall I’m so glad we did it - we had been banging our heads against a brick wall for so long at least now we have some amazing memories/experiences to talk about together. Even things like my own undiagnosed adhd coming to the fore- I was the one the group had to mind when it came to losing stuff/being frazzled - dd saw that everyone had challenges-even mum!
Dealing with a agrophobic, autistic child with an eating disorder is soul destroying as I’m sure many of you know, it was amazing to have a break from the stress and worry for a while.
@Mummyoflittledragon I don’t know what the endgame looks like yet but have a feeling it involves dd loosening her grip around food and I think we are getting glimpses of that. Fingers crossed.

HappyRainbow123 · 04/12/2025 16:20

Not a lot to report from me. She's just eating less and less (two cereal bars and a bit of juice yesterday, small glass of juice so far today). CAMHS just say to keep on trying and eventually/hopefully it will eventually fall into place. Chewing and spitting out food is the current problem (we have no trouble getting her to sit and try food).

She started olanzapine last night. Hopefully it starts the tide turning. I know it takes a few weeks to work, but I was sort of hoping we might be the exception and have immediate improvement :D

@Spendthrifting right, I'm off to the travel agent to book a safari. I love that this helped your daughter!

Mummyoflittledragon · 04/12/2025 20:01

@unbuckle
So the history is dd dropped lunch at the start of year 11 and slowly reduced. She’d gone vegetarian by the end of October 2023. Then March 2024 she basically all but stopped eating for a fortnight. This was GCSE year. Then came the Easter holidays. Her friends rallied and took her to dinner on a sort of rota or to the cinema as she would also eat there. This was all before we got help.

After Easter, the HOY helped me to get her to eat a sandwich on school days… Although she later admitted to only eating one of the 2 and not the crusts. Once a week or so she went to the cinema and took ‘treat’ food. Doritos and sour cream and chive dip.

I got CAMHS involved and took her there in half term so still during exams period. They didn’t really give any advice. The day after she finished her GCSEs, so mid June 2024, we took her to see the ED coach. Dd at this stage was eating the same thing every day and now that school had ended the rule returned to nothing before 8pm. The coach told me to monitor her intake and slowly increase it by an imperceptible amount every day. This worked wonders and her calorie intake slowly rose. After a couple of weeks maybe, she told me dd had to be kept at home if she didn’t eat any lunch. As dd was eating more calories (maybe 700 in the one meal), she was a tiny bit more amenable and complied.

After another few weeks of slow intake increase, the coach got me to try getting dd to eat breakfast. Rule being no going out until she’d eaten that. And dd struggled, breakfast was ridiculously late, often 12pm as dd procrastinated. We then had a session 3 days before going on holiday at the start of August. The coach said that we should put our holiday on the line and if dd would not agree to eat like this then we were cancelling the holiday and mean it. We agreed a meal plan with the foods dd would eat and I made a spreadsheet from that. The next day I collected her from a friend’s house and as I was bringing her home, I made a call with dh and we talked with her about it. She was fuming, screwed up the meal plan. I was absolutely scared witless and decided the best course of action was to go and see the friend we were taking to break the news we weren’t going away. Dd kept on asking where we were going. About 2 miles away the penny dropped and a mile later she agreed to the terms. And that’s how we got onto 3 meals, 3 snacks.

As for how we kept her there, that’s been tough. It’s involved her trying to climb out of windows, running off in the night, her calling the police on us and lots and lots of love and giving from me and lots of anger and hatred from her… interspersed with love.

Dh hates any kind of confrontation and it’s all on me to be strict. And it’s hard to maintain that level with an almost adult. So things are tend to get too lax and that’s how relapses happen. But actually these need to happen as I said upthread so that dd can learn because she staunchly independent. We grounded her for almost a week when she was at the brink of relapse a few weeks ago. Her attitude stank. She’s upping the anti again and I can feel it’s time to rein it all in again. I’ve just had some minor surgery and that hasn’t helped.

She now thinks she’s going to live away at university in September and it increasingly looks unrealistic. She can’t even prioritise feeding herself over doing her makeup.

As for how to get dd to eat, the key has to been firstly to only serve her food she will eat so in the beginning that was the same food every day. Breakfast 2 long life croissants (later added an apple), snack pack Belvita (later added fruit then added a slice of cheese as well - trying to front load the day), lunch egg sandwich and crisps, snack Belvita, dinner carrot sticks and houmous (later added pizza), evening snack her choice as she is able to do this. She is currently eating a bit more flexibly than this and dinner is a choice of 3 meals now. But over a year on breakfast, morning snack and lunch remain the same.

When she’s fallen asleep in the evening, we wake her up, hand her a pack of Belvita and keep waking her up until she eats snack. She complies because we have used carrot and stick. So if she wants something (eg she went away for a couple of nights with friends in the summer), we agree on condition that she does a few basic chores and of course always eats 3+3. Over time the chores she has to do have become more complex. But nothing yet about taking care of herself and she flatly refuses to make food. I use language like ‘we really want you to do x and we can see how much you want to do it too. What we are asking is that you do x, y and z consistently so that it’s going to be possible to do x.

@Spendthrifting
It is nice to see the grip loosening on food and I hope that is how things will be for you. It takes such a long time. End game for us is dd accepting her limitations and not thinking of constantly being perfect and not expecting constant perfections. Dd has always been like this to a certain extent I think I’ve cleared too many difficulties out of her way in an attempt to quash her anxiety. But actually it hasn’t helped in the long run.

Pearl97 · 07/12/2025 08:51

I hope everyone is coping with the Christmas countdown.
A Holiday does sound like a good idea. More opportunity to be together too. @HappyRainbow123 I hope you are getting more support. It’s so hard to know what is the best stance to take.
Sending everyone strength and hope xx

HappyRainbow123 · 07/12/2025 08:58

Pearl97 · 07/12/2025 08:51

I hope everyone is coping with the Christmas countdown.
A Holiday does sound like a good idea. More opportunity to be together too. @HappyRainbow123 I hope you are getting more support. It’s so hard to know what is the best stance to take.
Sending everyone strength and hope xx

Thank you for checking in. I'm not sure what sort of support I can ask for: next week we have booked in x1 psychiatrist, 1x registrar/doc, x1 dietician and x1 psychologist clinic appointments, plus x4 home visits. The doc has discussed with the hospital paeds department about our weekend plan in case she is back into A and E (we took her in on Thursday evening and thought it was very possible she'd be back) - we really appreciated the work he did in keeping everyone on the same page with the plan. I'm feeling well supported, it just isn't flipping working! One of the home visit nurses said on Friday that she could see glimmers of improvement, and that she expects a corner to be turned eventually. So that felt a little positive.

Pearl97 · 07/12/2025 09:04

I am glad you’re well supported. I know when there is a lot of support it takes over your life and you just want thing to improve. Are you seeking improvement yourself? Did you manage any school?
I know you talked about work, that’s what I found the hardest. Not having any to timescales etc really affected me. I kept thinking I would be back to normal in a week or so … I wasn’t! Xx

unbuckle · 07/12/2025 13:28

@HappyRainbow123 it might feel like its the same thing but those are all support/care for your daughter, support for you might feel too hard or not right to access right now, but i would say when you're ready think about things that do not have making your daughter more well as their principal aim

HappyRainbow123 · 07/12/2025 14:03

@Pearl97 Sadly no school :( she's just not well enough. yep, I really thought I'd crack this thing in a couple of weeks. This is really affecting us financially, and working out work is a really stress too.

@unbuckle Sadly, no time for me to access anything. I'm overdue dentist, physio, etc etc. My daughter's ED actually followed 12 months of serious illness in the family, so I'm already quite depleted. Fortunately though, all the CAMHS staff are saying positive things to me. And feeling that they are on my side and are working hard helps a lot.

Pearl97 · 07/12/2025 16:37

@HappyRainbow123 I totally get the I can’t believe we weren’t sorted in a few weeks feeling. I remember organising for family to visit as I thought we would be sorted by then - not so!!
I think one of the main things is that you feel listened to and supported and not that you’re making more of something. Why we would want to make more of this I know, but sometimes professionals don’t see how bad things are.
keep talking. We’re here xx

unbuckle · 08/12/2025 08:29

Does anyone know how to calc weight for height, I have looked for an online calculator but I can't find anything

Pearl97 · 08/12/2025 11:34

I admit to using chat Gpt all the time. It’s really helped me as it works it out for you!

Suppose your height is 170 cm (1.7 m) and your actual weight is 60 kg. If the reference weight for that height is 65 kg:

Formula
Actual weight divided by reference weight times 100

  • Actual weight: your current weight
  • Reference weight: “desirable” weight for your height (can be based on charts from WHO, CDC, or other standard tables)
littlemissy12345 · 08/12/2025 11:41

If you go to the kids BMI calculator you can find out the 50% weight for your child. Then do % of that.

Potatoelephant · 08/12/2025 11:49

Just found this thread. I had just posted in teenagers about DD.

DD is 14. Has some anxiety and on waiting list for ADHD /autism assessment.

I’ve been worried about her eating habits for a while and have very gently talked to her. She has told me previously that she just doesn’t have a big appetite and prefers to graze rather than sit down to a full meal. And told me that she is not deliberately undereating.

My own eating habits aren’t great, I am overweight and use food as an emotional support / stress reliever so I am aware that my own view of what is ok eating wise is probably very much skewed the other way (ie too much!). Her dad also had a very small appetite so I think I’ve been kidding myself for a bit.

this morning I read her diary. It’s clear that she is deliberately undereating - her aim is less than 700 calories a day. Lots of other stuff too about how much she hates her life and how she looks.

what the hell do I do now? Home is very stressful at the moment as DH (her dad) is currently going through an autism assessment and he is also struggling a bit.

I know I need to get her to the GP but she is very very resistant to the idea or doctors etc or talking to anyone.

Pearl97 · 08/12/2025 12:09

Hi @Potatoelephant it sounds like you are dealing with a lot
Have you looked on the BEAT website. Give them a call, they are really helpful and will help you get over the shock and get a plan together xx

Potatoelephant · 08/12/2025 12:17

Thanks for the reply. Yes I have been on the Beat website this morning, their helpline isn’t open until 3pm so will call then.

I feel ill and been in the verge of tears all morning.

Do I tell her I have read her diary?

Pearl97 · 08/12/2025 12:24

Rather than saying you’ve read her diary, could you say you’re worried about her in another way. Like you noticed her eating less etc. I think if you say about the diary you’ve lost all trust?

Potatoelephant · 08/12/2025 12:27

Yeah I think you are right.

I feel so stupid. I actually talked to her last night about this. But I guess I can carry it on from that rather than mentioning her diary.

Pearl97 · 08/12/2025 12:54

I think so. Beat will help you with the practical side of things - what to say to GP etc.

it’s a shock to us all when we join this group that we never expected to be part of!
Keep talking and don’t feel alone. We may not be always able to help, but we are here.

Anothersetback · 08/12/2025 15:43

Potatoelephant, I have read both my dd's diaries and never told them. It's a way to find out what they are really feeling, because when you chat with them it's all "fine".
Found out one dd had suicidal thoughts..
Other purging a lot more than I thought..
With this sneaky disease one has to be sneaky yourself.

I am coming back to this thread as not sure what to think of dd. She is at uni, and seems to be enjoying herself with good friends. Has however not been home since beginning of term. I did visit once but with baggy clothes difficult to judge.
Has issues with at times dizzyness and now also constipation....she had these issues when her weight was low.
She says her GP keeps an eye on her blood pressure and weight etc.
I have contacted her GP in the past but not sure they took any notice.
Adult ED services earlier this year turned her down (purging is the issue, and she only starts loosing weight when her vomiting becomes more frequent).

Currently just waiting for her to come home for Xmas,and hope for the best....

Theoscargoesto · 08/12/2025 18:41

I’ve popped in to say that my DD is in her thirties. At 13 she was unwell. At 15 admitted to a unit, discharged herself 6 months later when a bit weight restored, terrible 2 months of exercise and no food, readmitted for 6 months. A levels difficult. Uni difficult. Got her doctorate in her late 20ies and moved abroad. Early 30s met her husband. Has had regular periods for maybe the last 4 years. But now, she is happy and she is pregnant. Not an outcome I ever foresaw.

It’s gone on so bloody long, and if I’d known we would be living with this dreadful illness for this long at the beginning, I don’t know that I would have coped. All that hope, all that hope dashed, over and over. But here we now are. Happy, healthy. Please keep on going. Please believe things can and do change. Please don’t give up hope. And in the meantime, get support for you because you deserve that. I wish you and your children the very best.

HappyRainbow123 · 08/12/2025 19:46

Potatoelephant · 08/12/2025 11:49

Just found this thread. I had just posted in teenagers about DD.

DD is 14. Has some anxiety and on waiting list for ADHD /autism assessment.

I’ve been worried about her eating habits for a while and have very gently talked to her. She has told me previously that she just doesn’t have a big appetite and prefers to graze rather than sit down to a full meal. And told me that she is not deliberately undereating.

My own eating habits aren’t great, I am overweight and use food as an emotional support / stress reliever so I am aware that my own view of what is ok eating wise is probably very much skewed the other way (ie too much!). Her dad also had a very small appetite so I think I’ve been kidding myself for a bit.

this morning I read her diary. It’s clear that she is deliberately undereating - her aim is less than 700 calories a day. Lots of other stuff too about how much she hates her life and how she looks.

what the hell do I do now? Home is very stressful at the moment as DH (her dad) is currently going through an autism assessment and he is also struggling a bit.

I know I need to get her to the GP but she is very very resistant to the idea or doctors etc or talking to anyone.

I’m really sorry to hear you’re going through this.

Eva Musby’s website might be helpful. CAMHS + many more have recommended it to me. anorexiafamily.com/start-eating-disorder/

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