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

[Curlyhairedassasin]

New thread as old one is filling up

Remember having a zoom call with a psychiatrist and thought for a second Christ who are that traumatised looking couple before realising it was of course us.

Seeing DH sobbing after he had to deal with it alone when I was away to visit family stays with me.

Raspberry read Caitlin Morans latest book can’t remember the name but her daughter developed an ED and reading her account of dealing with it as a parent made me feel less alone.

If it helps we are exactly a year on and Dd is through it and thriving though we will never be complacent. She still follows the magic plate method but does it without prompting.

I never felt guilty about lying to her (granola isn’t fattening!) or pointing out that if she didn’t eat her life would be crap. Would say how sad it was that she would not be well enough for Boardmasters and would have to stay at home with us while all her friends went off to have fun. Yes I became a real bitch but desperate times and all that. Plus it worked

We have all been there. It is shit. It was the darkest year or so of my life.
Take each day at a time. Cry, scream whatever it takes. In private.
Take the abuse, live with their pain and hysteria and know each day that you get food in her at a good level is a win.
The weekly weigh ins were the worst for me, esp if she hadn't gained, which did happen even if she ate the same as the previous weeks..it felt endless.
But you will get through it. Come on here to vent. We have all been there.
Accepting that your life will be shrunk by the illness is v hard. Many do have to give up work.
But it is worth it. You can free your DD from this illness and give her her life back..
My DD is in Canada at uni playing her sport and smashing her academics. If you had asked me if that would have been possible in 2022 I would have laughed and cried!

I was totally the same as you. My advice would be to try and not think too far ahead and take each day at a time at the moment. What helped me was to take a couple of weeks emergency parental leave to process and plan - attend the first lot of appointments and medical checks, inform the school and make a plan with them, get my head around the meal plans and prepping for them and simply being there for my daughter and the early stages are utterly shit. In my case my daughter was allowed to remain in school (on the condition she followed the meal plan, she has a medical card now which means she can eat in lessons) and I remained in work thanks to a very understanding boss who gave me the flexibility I needed. The first few months were the hardest of my life but 4 months in things are easier - clinic appointments are less frequent, we have a routine and little by little things are getting better. I know everyone’s experiences are very different (and I appreciate I’m lucky my daughter has not needed more intensive care) but all I would say is what you’re feeling now is not forever. I remember thinking our entire family life as we knew it was over but it wasn’t, it’s gradually coming back x

Same. Dd doesn’t want to talk about it. She has legions of lovely friends a great boyfriend and is smashing her a levels.

DH took her on a trip last weekend. She had her normal breakfast then a SECOND breakfast. This would have been unthinkable April 2025. Her weight could be better but is low end of normal bmi. Zero weird behaviours . I still won’t have sodding rice cakes in the house though.

My guilt was not spotting it sooner. Her best friends forthright mother actually rang me twice to say she was worried. I fobbed her off as could not believe it. My biggest parenting fail ever.

Totally agree.
I think another thing to remember is AN is an illness. It can be treated. Life can be what it once was. It really can.
That is not to say that for some this won't be the case, or take much much longer.
But if you/ she is able to follow a meal plan, get to a good weight for her (not an arbitary figure but one where her behaviours normalise) and maintain that weight long enough for her brain to recover, then full recovery is possible. My DD is fully recovered.
Hold on to that.

I can very much relate to this. Lots of (well hidden) tears from me too. I am working very hard on remembering that the bad days and moments pass. When you're in them it feels like the end of the world and I feel so very low. But then the next day is often easier.

I'm reassured by everyone saying things settle a bit with time. If not I'll definitely be seeking out some therapy. I'm making the most of friends kind offers to do things or talk though. I've always been an 'I'm fine' person and I'm learning not to be and to at least accept help when it's offered if not ask for it.

I can relate too, but it does get better. For me the dread was worse, the realisation of what could happen, the unknown.
When camhs put DD on bed rest and school and work did stop, and people had to know, we could get on a deal with it and that gave me strength.
And that period was brief, didn't feel like it at the time but it was. I know we were lucky, but some people do get some level of recovery quickly.
Missing school was bad, but seeing it as a period of dealing with a serious illness helped.
It is undeniably tough so keep talking and go easy on yourself, everything but helping your DD recover can wait for now and making it wait might give you the headspace you all need
Sending hugs

We all totally get that feeling of doom. It’s awful and you play things over and over in your head. I think you will feel better after the appointment, whatever the outcome as you have a plan.

You might not have to stop school, I would say take each hour and it comes. Most of us definitely felt better when other people were involved and everything didn’t fall on our shoulders. We’re here xx

Totally agree with all of this! The stuff I thought was important and was panicking about (work, school etc) had to be parked and deprioritised for a while - but it was just for a while (again I recognise this was lucky). Once I got over the shock and grief (I admit I spent many hours crying and even looking at past photos of my happy child and feeling like I’d lost her) I then viewed it as a fight…me versus the ED and I found strength in that. You’re in the worst phase at the moment and it will be tough but once you’ve got a plan then it helps x

I just wanted to let you know @Raspberrysins that as your dd is aware and wants to recover, chances are in her favour that will make good progress. There is a massive difference. And you have already done, what we still can’t do with dd. Ie go on holiday and eat out all the time, not having access a kitchen.

My dd is mentally ill. She was very very mentally unwell and it isn’t possible to recover from severe mental illness in a few months. Dd started to become ill in September 2023 and I’ve been at this 2 years now. She is a lot improved, but still lacks the awareness that she is ill, albeit she knows at a subconscious level. Then I look at the posts from@TheaBrandt1. She arrived on the threads what seems like 5 minutes ago and she pretty much immediately talked about big strides forward and her dd has been recovered for a little while now. She talks of banned foods, which are eaten daily or twice daily in my house - cucumber, rice cakes etc. So there is a massive difference in recovery rates.

My dd is one of the very difficult and complex cases btw, because of neurodivergence, demand avoidance and having 2 eating disorders. We have a private ED coach on board, following every minutiae detail of every day life and every significant conversation I have with my dd. I couldn’t possibly do with my dd what she has with hers, because dd would have run away (and has done so a few times) and gone nil by mouth.

So do just steal yourself a little, take every day as it comes and know that as a parent, you’ve already done quite a lot and can do this.

Thank you everyone for your encouraging advice or just understanding how it feels. It really helps to know that you all know how it feels. I need to have hope or I won’t get through. I thought I was strong but I’m very tearful. I will try my best to hide that though. My DD already feels intensely guilty for the impact this has had. She wants to help by doing extra chores and making her sisters packed lunch etc. I told her that if she had another illness like cancer it would be the same- it’s not her fault! As parents our job is to protect and help, so that’s just what we need to do.

Yes they are all so different there are no rules are there - we just have to blunder around get all the information and support we can and then do what we hope works for our own child.

Hi - we are nearly a month into this, and I am still waking up every day with a horrible knot in my stomach. I first weighed DD (15) on 23rd March after noticing her weight loss and the fact that she hadn't had a period for 2 months, whereupon she admitted she had been restricting what she ate and was very tearful about it. I immediately put in place 3 meals 3 snacks a day (so thanks to everyone on here for that advice), and we saw the GP 10 days later, which was the soonest we could get an appointment, who gave us a CAMHS referral. CAMHS saw her straight away and did obs and were worried about her low weight. Saw her twice more in which time she'd put on nearly 3 kilos. They signed her off to do her D of E silver expedition over two nights, which I was very nervous about. Anyway, she did it and came back OK, we had another weigh in again this morning (last one was Thursday - so only 4 days ago) and she has put on another 700g despite three days out on the moor walking 14 miles a day. She is now at 88.09% wfh.

We have an initial assessment with CAMHS on 1st May. Are they likely to say that she doesn't need help given that she has done so well with eating? I cannot believe that it will carry on like this - she will push back at some point, I know. She says currently that she can eat if someone else gives her the food (as in makes all the decisions) and she is generally a rule follower, so when CAMHS told her she needed a hot pudding and a hot chocolate each evening, she just went with it.

When we went for the weigh in before they signed off on the D of E, she said she would be disappointed to have put on weight, but more disappointed not to be able to do it. She says she feels like there are two parts of her brain fighting each other, one saying it's OK to eat and the other saying she mustn't.

I am also worried that now she is back at school, we will lose momentum.

Sorry for that rather long rant, not sure what I'm hoping for here, I guess just some reassurance that CAMHS will still take it seriously and if they don't, what do we do?

Sounds like she’s making great progress on weight restoration but CAMs should still take seriously - your daughter is only in phase one of what treatment would be (parents make all choices) the next stage is moving towards independence

So she’s not diagnosed. Is that correct? Is your dd able and willing to talk to CAMHS about how she’s doing / feeling? And is she wanting their intervention?

I would talk it through with her. I got my dd on 3 meals 3 snacks and 3.5 weeks later, she went to CAMHS with the sole goal of signing herself off. She was just turned 16 and they have to listen to anyone 16 plus. The psychiatrist was such an idiot and allowed dd to pull the wool over her eyes. She told dd she doesn’t have an ED. That caused a lot of damage, which took 4 months to fix.

I’m not trying to scare you. I’m just suggesting you gently prep your dd and ask how she feels, the sort of things she wants to say to CAMHS etc.

I think she will be, but I take your point. She said initially that she was wanted to speak to someone else. She has already told her nurse associate that she is unable to make decisions about eating and doesn't feel able to eat if she has to choose what to eat. She is, as far as we're aware, very neurotypical, which I hope will make life a bit easier.

It is a really good sign that she understands that her ED voice is too strong for her to have autonomy over her eating.
If she says that at the appointment she will clearly be evidencing ED thoughts.
Be an advocate for her and fight for help. Assuming you will also be at the meeting.

it is such a roller coaster. one minute you think things are improving and then the next you're at rock bottom again. We had a terrible weekend, saturday I told DD she wasn't going for a run and all hell broke loose literally. Screaming, crying for the whole morning. managed to calm it down, and later all went to the cinema. I bought pic 'n mix and she ate a single sweet I think.

Then sunday we were going for a family walk and picnic, so I insisted on making her a sandwich.. she is not used to me doing this yet and hates other people making her stuff.. so I put the tiniest slither of butter in, and she literally snatched the bread from me and put it in the bin, whilst shouting that she was happy as she was and didn't need my help. I'm not proud to say I ended up sobbing in my room and felt I was at the very bottom of a pit of what felt like absolute despair.

Our first CAMHS meeting is this Friday, and I'm just counting the minutes now... somehow I think that will be the beginning of real help, hopefully some rules she will have to follow. I am hoping she will respond to them better than me. I know we are starting to upset the ED voice, my DD admitted she's not been managing 2000 cals. She isn't putting on, but at least has stopped losing weight..

@Libre2 my DD reckons she is 'fine' to do her DofE, but I don't think so. I'm interested in what CAMHS will say, at the moment I'm swaying between 'remove from school' / 'treat at home' / or inpatient ... but I don't know what their criteria are for that.. she is at least eating 3 meals a day so I suspect not serious enough for hospital admission? I just wish friday was hurry up and get here as it's all consuming for me right now

@Raspberrysins Sorry to hear it's been so tough and I can relate. CAMHS totally turned things around for us so I hope you have the same experience.
Having someone else telling my daughter what she had to do and then having weekly sessions to check up really helped. I was telling her exactly the same thing but she obviously didn't listen to me.
I often ended up looking forward to the weekly sessions as it seemed to act as a bit of a reset each week.
I really hope you find CAMHS helpful too

Did she run though? If she didn't run, then that is a win v the ED. And you need to give yourself credit for that. Next time the melt down will be a tiny bit shorter. Stay strong.
These extreme reactions are the ED fighting back. Its usual.
Distress tolerance here is key. I found the crying and despair easier to deal with than the rage, but both are usual. Try to distance yourself emotionally..be a physical presence if she allows that. I sat stroking a lot of hair for many hours. Or I sat outside her door just reminding her I was there, loved her and had her back as she fought the ED.
My DD smashed my oven door in her rage, and put her foot through a wall. I did lose it too. I smashed her apple watch with a hammer in front of her, after she policed one of our short family walks, trying to make it longer and constantly checking the damn thing for our pace. I am not proud of that, but it removed another thing that is v unhealthy for ED sufferers.
In response to 'I am happy the way I am' I would just say something like 'I can see you feel that way, but you are actually very ill and I know what you need to stay safe' 'now please leave the kitchen'. Or some such. I used the phrase 'I am sorry this is hard for you' and 'I can see this is very hard for you' on repeat closely followed by 'now eat' or 'I know what you need to get well and stay safe, now eat' or ' this is what you need to get well, now eat' until I was blue in the face.
The desire to run will be eating her up. Keep strong.
And be prepared for her to sneak out to do it, try to make sure that isnt possible.
My DD was allowed a short walk. I let her go alone and she ran laps of my village in secret. A neighbour told me. I then went with her every time she went on her walk. She shouted abuse at me all the way round. People stared. I ignored them.
I never left her alone. It was 24/7.
She would also pace round and round the garden in her socks and a T shirt, once in the snow, as she had read being cold burnt more calories.
Olanzapine helped a tiny bit. At least it made her tired to start with so she slept in. Which meant fewer hours in the day having to police her.
I am giving all these examples to show that this is normal for someone with an ED.
My DD was saved by food, pure and simple. I felt like a mean, tyranical bitch, policing her everyday. Sitting beside her as she sobbed, saying very little. Not participating in her distress.
But it saved her life. Keep that thoight in your head at all times.
And well done for poking the ED, it shows what you are doing is working.

@Raspberrysins it helped me to know this is normal, my dd was exactly the same as your dd. In the middle of winter she ran out of the house in bear feet because I made her a sandwich. I was running around our estate trying to find her and nearly had to call the police.

I also took a hammer to her watch and the weighing scales 🙈

Camhs were very good with us, they see kids like your dd every day and you are doing all of the right things.

I would absolutely say no to DofE though, she sounds far too unwell and it could very easily tip her into a serious medical emergency. My dd wanted to do all sorts of ridiculous challenges when she was ill and tells me now it was a relief when I started saying no to her. She felt dreadful but the illness kept pushing her to do more and more stuff.

A level mocks week here, and back to school / work after a chilled couple of weeks. Needing all my calm vibes and spidey sense to make sure this doesnt tip DD into bad habits or stress her out unnecessarily
This stage of allowing her to get her life back and make some choices whilst keeping her safe is bloomin terrifying. To the outside world she's now "fine" but of course she isn't, and that wakes me up at 4am again and makes the usual post holiday blues somehow worse
Sorry to hear about the tough times people are going through. Sending hugs and solidarity, you're doing a grand job

DD is coming home tomorrow. I’ve been waiting for this day for six months and now it’s here, I’m a nervous wreck! She also wants to move schools due to friendship issues and low level bullying, and basically wanting a complete fresh start where no one knows she’s been off school for all of this academic year. We ended up having to lodge an admissions appeal as the school she wants to go to is full, and we have the appeal hearing on Thursday afternoon. This feels like the last piece of the jigsaw puzzle if we can just get it all in place.
I think she might be expecting to have a bit more input into meals and snacks and I’m not sure if I’m ready for that.
I have, however, been signed off work for four weeks so I can focus on getting her settled back home and hopefully settled in a new school.

@Lottsbiffandsmudge wow, thank you for sharing your experiences. You have encouraged me when I really needed it. I feel we may have more of these experiences to come, but it's reassuring at least to know it's a sign we're doing the right thing. I've heard "You have to see the beast to slay the beast" somewhere.

My DD wrote herself a letter last night, and showed it to me. Quite heartbreaking to read her thoughts. She is still calorie counting and doesn't know how to stop. I happened to see her chatgpt history and she is looking up the calories for everything, calculating all her intake. Even to the last raspberry. I don't know how to stop this, but I know if I blocked her, she would just find another way to do it. She also has an Apple watch - but only just got it for Christmas and I can't imagine taking that away.. but ultimately it could be an option in the short term..?

Sorry just realised I'm at work so have a different google account / username - I am also @Raspberrysins