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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

OP posts:
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7
greydoor · 14/08/2025 13:47

@Shedqueendays like this can be so hard, it's easier on the 'normal' days when you can just celebrate the little wins and progress. sending you a solidarity hug xx I follow a person on insta called Fi Hollings who is in recovery from anorexia and is autistic. She graduated recently with a degree, despite being told as a teenager and an inpatient that she would never manage education. She is hugely inspiring to me, particularly in helping me to see that the traditional path isn't always the only one.

@Proseccoismyfriend - loved your update! So pleased that things are going well!

@Iknowdino - hope today is going ok. It sounds like your dd is very unwell. When we were referred to the ed team we were also asked to go for an ecg within a couple of days I remember driving across to the hospital weeping behind my sunglasses because I was so worried. Anorexia is very scary physically as it can affect their heart so drastically. Agree with all of the advice on here about asking proactively for a heart trace, and looking up the meeds guidance. Your dd will not be able to advocate for herself just now, she is unlikely to believe that she is ill, that's actually one of the criteria for anorexia diagnosis. So you will need to drive this forward assertively. And she is likely to react very extremely to this - and as @Girliefriendlikespuppies says you can see this as a good thing - the ed is being called out and is coming back against this. I learned to be suspicious when my dd seemed compliant, because it often meant she was discarding food (wiping butter, peanut butter, jam etc under my breakfast bar, 'pouching' food in her cheek and spitting it out later, hiding it up her sleeves, quickly throwing out of an open window or door, giving it to the dog, putting it in the wash basket, etc etc). Ed's are supremely inventive, and it can be a huge learning curve spotting it. Loads of great and wise advice on here, keep posting for anything you need, support, advice, whatever you need x

Shanghai101 · 14/08/2025 16:31

Shedqueen · 14/08/2025 08:32

Saying this here because I can’t say it out loud : seeing her friends getting their a levels and university places is hard. Another milestone missed.

Just wanted to send solidarity. You are not alone. Her day will come, we just have to be so patient. Autism has turned our parenting journey on its head 😢

Iknowdino · 14/08/2025 21:18

Been to a and e today. Bloods and ECG all ok. Some slight issues with bloods but nothing too serious. Seems to have shocked her into accepting there is a problem though and she was scared she has done some real damage to her body. Should see the ed team soon.

Shedqueen · 14/08/2025 21:26

Thank you @greydoor and @Shanghai101 . I’ve got it out of my system and ready to face another day. She was very brave congratulating her friends but she was very sad. (That’s actually progress because a while ago she wouldn’t have said that because she could not see/admit all the things she lost by being ill). Her sisters have taken her out this evening which was really nice of them.

@Iknowdino I hope you get the help she needs and urgently.

Girliefriendlikespuppies · 14/08/2025 21:59

Iknowdino · 14/08/2025 21:18

Been to a and e today. Bloods and ECG all ok. Some slight issues with bloods but nothing too serious. Seems to have shocked her into accepting there is a problem though and she was scared she has done some real damage to her body. Should see the ed team soon.

You need an ED dr to look at the bloods and ecg as they look for very specific things, slight issues with bloods worries me tbh…

Have they given guidance on a feeding plan? Have they told you to implement 3 meals and 3 snacks from now?

It’s good your dd has had a wake up call but the reality is she needs a huge amount of food to go in to turn this around.

Mylittlelove · 15/08/2025 20:41
Dog Grooming GIF by MOODMAN

Hi I’ve lurked for a while on here but finally need some advice. My DD15 has anorexia binge purge subtype and has since she was 12. I don’t normally look through her phone but I seen a message of hers pop up the other day referring to an EDSF. I’m not sure what it is though. (May not be anything to do with eating disorders but it was included in a message of hers talking about some eating disorders behaviours hence my concern). It may be nothing but thought I’d just ask here in case. I did look on the App Store on my phone as I thought it may have been a calorie counting app but couldn’t find anything
Tia

Mylittlelove · 15/08/2025 20:42

Mylittlelove · 15/08/2025 20:41

Hi I’ve lurked for a while on here but finally need some advice. My DD15 has anorexia binge purge subtype and has since she was 12. I don’t normally look through her phone but I seen a message of hers pop up the other day referring to an EDSF. I’m not sure what it is though. (May not be anything to do with eating disorders but it was included in a message of hers talking about some eating disorders behaviours hence my concern). It may be nothing but thought I’d just ask here in case. I did look on the App Store on my phone as I thought it may have been a calorie counting app but couldn’t find anything
Tia

Edited

Sorry I’m not sure how I managed to add that image. I really don’t have a clue what I’m doing on this site- still trying to work it out regarding posting so apologies

Proseccoismyfriend · 15/08/2025 21:00

Hi @Mylittlelovejot entirely sure but could it be the eating disorder forum? https://www.edsupportforum.com/

Iknowdino · 18/08/2025 08:41

Hope everyone is doing ok. We are just about to set off for her ed appointment. She has seemed ok the last few days, trying to eat then battling the guilt! Poor kid. Breaking my heart

greydoor · 18/08/2025 13:31

Hope things are going ok@Iknowdino. It is a real battle for them, the guilt following eating can be so intense. If she's eating through you're on the right track. Hope the appointment leads to some helpful support x

Curlyhairedassasin · 18/08/2025 15:28

@Iknowdino DD feels always very guilty after eating. We deal with it with distractions. A very short stroll, watching something, a game. I always make sure I spend about 15-30 mins with her right after every meal snack. It's exhausting but it does help and has been strongly advised by the ED team. I would try to establish this as some sort of routine.

OP posts:
Glitterfarti · 18/08/2025 15:39

How do you deal with illness? DD has had a raging temperature and vomiting over the weekend, and has eaten very little accordingly. We have antibiotics after a&e yesterday and her temperature has been below 40 today but she’s absolutely wiped. She has managed 1/2 a piece of toast and a yogurt today from basically nothing last two days - should I be pushing harder?

Mummyoflittledragon · 18/08/2025 16:55

Glitterfarti · 18/08/2025 15:39

How do you deal with illness? DD has had a raging temperature and vomiting over the weekend, and has eaten very little accordingly. We have antibiotics after a&e yesterday and her temperature has been below 40 today but she’s absolutely wiped. She has managed 1/2 a piece of toast and a yogurt today from basically nothing last two days - should I be pushing harder?

Just ducking out briefly from cover. Exhausted here. Sorry your dd is unwell.

I would try to gradually introduce food to the pre illness levels. Dd used to get a lot of stomach pains and then wouldn’t eat hardly anything for a couple of days until it settled. If dd then just ate normally again her pains would come back much more severely and I learned it was necessary to gradually reintroduce foods.

So for example dd has ARFID and anorexia (not diagnosed but according to ED Coach) so she eats the same every day - 2 croissants and an apple for breakfast. My starting point was one croissant on day one. Then I built this up over 4 days increasing by 1/4 of a croissant and 1/4 apple a day. My dd was aware of this and followed the plan at times and at times not.

It’s a fine balance as your dd isn’t going to eat a great deal if she’s unwell. A person not suffering from an ED won’t either. Then you get your appetite back, which is a toughie for someone like our dds. I get it’s scary as you risk tipping into relapse. However, you have a lot of tools for dealing with that so I shouldn’t be too afraid of gently cajoling your dd to eat and not forcing her.

Hugs to everyone. And welcome newcomers. I hope things start to improve for you all.

greydoor · 18/08/2025 20:04

@Glitterfarti I would try and encourage things people would usually have when they are sick - chicken / whatever they like soup, lots of drinks, toast etc. I always make my kids have salty crisps along with drinks when they are sick, salt is really important to have alongside fluids. And as her temp gradually comes down, I'd be gently encouraging more regular meals - perhaps just very very small ones but in the regular routine so she isn't going for lots of hours without eating.

Glitterfarti · 18/08/2025 21:51

Thanks @greydoor and @Mummyoflittledragon , she’s had a small portion of stew tonight so progress! She had been doing so well on her meal plan but think we’re going to need to go back to day 1 once she’s doing a bit better.

Iknowdino · 19/08/2025 21:59

@Glitterfartihope your DD is feeling better.

My DD has been given refeeding vitamins and will have weekly appointments. Her WFH is 68% which is scary when we were shown the rainbow chart. DD is up and down but doing ok and trying do hard. She isn't taking well to bring told she needs rest and to do less though. And gutted she has been told to stop work and all the actives she enjoys- they are all very physical!!

Girliefriendlikespuppies · 24/08/2025 08:23

How’s everyone doing?

I’ve been ill the last week which is tricky with dd as she finds it very triggering if I eat less than she does 😕

Glitterfarti · 24/08/2025 13:17

Sorry you’ve been ill @Girliefriendlikespuppies , I hope you’re feeling a bit more sprightly soon. Yes, I think DD clocks everything we eat and it can be hard to manage (we’ve all gained weight since she’s been ill and now I’m trying to tackle mine!)

DD has been on antibiotics and off plan, so now the course is finished trying to get her back onto regular meals and introduce snacks. She’s eating about half her meal (this is her pattern) and has accepted a snack this morning but is really pushing back on proteins (think she’s bored of cheese and she isn’t a big meat eater) - any sandwich suggestions greatly appreciated (won’t eat tofu)!

Curlyhairedassasin · 24/08/2025 13:30

Hope you feel better soon girlie. DD is also watching what I eat and I and I put on weight too. Seems a common scenario.

@Glitterfarti would she have tuna (with mayo mixed in to add some cals). Or a different cheese like fried halloumi. Falafel (they are quite 'rich'). Hummus and veg (maybe grilled/fried veg to add some oils).

OP posts:
Thisnowtoo · 28/08/2025 22:56

Hey.
Ive been reading this thread for a while and it's been such a help. Thank you.
My 17 year old was diagnosed with anorexia in June. We are getting family therapy twice a week with CAMHS which has been good. I think she's a bit better, mood and wieght have stablised but she is still really struggling.
She turns 18 soon and they want to move her to adult services when she has her birthday. Have any of you had experience of this? Im worried that the support will drop off.

Shedqueen · 29/08/2025 19:22

Service arrangements at 18 differ across the Uk and between local areas. Some areas manage this transition better than others. My daughter was in hospital when she turned 18 which added complications. had a caseworker who was supposed to stay with her as she moved to adult services. That didn’t happen in the end but it would have been good if it had.

The threshold for intervention is much higher/lower in adult services which can be a shock. I’ve also found that physical health monitoring is less good in adult services but I think arrangements where I live are particularly bad. Currently she has good support (allowing for an astonishingly high staff absence) but it took a crisis and us making an almighty amount of fuss to get that.

A big difference is that parents are not as included in care planning. Astonishingly the EDS refused to talk to us before she 18. I don’t think that happens everywhere though.

Thisnowtoo · 29/08/2025 22:52

Thanks @Shedqueen for the response.

The timing is not great as I'm worried what effect going back to school will have. DD has lost motivation to study and I hope anxiety doesn't build up. But maybe school routine will help.

I hope your DD's return to FE goes well.

Shedqueen · 30/08/2025 09:24

@Thisnowtoo I may have sounded negative. Adult services do have a wider range of approaches as well as FBT so that can offer more personalised treatment over time. The advice I’d give is to try and get to meet the adult services staff in advance to agree transition arrangements or else there can be a period of hiatus which doesn’t help the poor, anxious patient. Especially if you've achieved a steady state now.

i imagine we’re all wondering how the return to school/ education will go. I’m really nervous but also really excited at the thought of her going to college part time & me getting a couple of hours off duty! Trying not to get my hopes up…

Girliefriendlikespuppies · 30/08/2025 10:12

My understanding is there should be a transitional approach to transferring care to adult services but yes unfortunately there will be less family involvement and more emphasis on the young person to engage with help.

My advice is to skill yourself up as much as possible so you can continue the care she needs @Thisnowtoo. Is she doing A levels? Would a break from studying to allow for full recovery be an option?

Thisnowtoo · 31/08/2025 10:36

Thank you. @Girliefriendlikespuppies @Shedqueen I'll ask about transition.
And am feeling more optimistic. A different approach to FBT might be good. DD has never been OK with me telling her what to eat.

I'd rather she didnt go back to school, I'm worried about the stress! But she is keen. Agree it could be a nice break for us parents! Hopefully!

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