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

[Curlyhairedassasin]

New thread as old one is filling up

Thanks everyone for your kind replies, it has helped so much and I really appreciate it.

I have spoken to beat today and also to lifeline for myself as I have realised I am very overwhelmed at the moment, not just about this but other stuff as well.

I’ve decided to leave it a few days until I get myself more on an even keel and then will tackle it with her again.

So DD has now been in inpatient treatment for six weeks. She is doing well physically, gaining weight and not having too much trouble with her meal plan etc. She is however struggling mentally. Hates the unit, just wants to be home. We had 24 hours of home leave this weekend and it went so much better than two weeks ago when she couldn’t stand to be in the house for more than an hour. We have redecorated her bedroom since she’s been away (it’s now her dream room), and this weekend we put up our Christmas tree, so being at home felt significantly ‘different’ so it wasn’t too triggering for her. As soon as she got her phone this afternoon (they’re allowed to have them from about 3pm onwards) she was messaging me begging me to discharge her and allow her home. She is still on an informal admission so legally I can do that, but I don’t really feel that it’s the best thing to do. There is still the possibility they could turn around and say they’re going to put her on a section, I think it’s unlikely as she’s doing everything she needs to do, she’s complying with her meal plan and engaging in school sessions and has started some psychotherapy stuff. And she’s still only around 75% wfh. She has around 10-15kg to gain to hit 100% wfh. My head is just a mess right now because I desperately want her home, I want her to be happy and not stuck in a place she hates. But equally I want to do what is best for her future and what is going to give her the best chance to make a full and lasting recovery. She wants to come home and basically be ‘normal’. She’s happy to comply with 3 meals and 3 snacks but doesn’t want me obsessing over what she has to eat and watching her every move. I literally don’t know what is the right thing to do. I feel like once she’s recovered this is probably a phase of her life she will never talk about again. She just wants to act like it’s never happened. She doesn’t want any CAMHS input from the eating disorder service once she’s out. She says it will just give the voice in her head a reason to stick around as they are a constant reminder of it all.

sorry for the mind-dump, I’m just so lost and drained right now and I need to get it all out of my head.

@SendTheNextOneIn six weeks, you’ve all done so well.
I don’t think I’m the best to offer advice, as I’m as torn as you are with what I would do.
I do know others will be along to help.
What I would say is how fabulous you have been and what a great mum you are. Your daughter is in safe hands and you will make the right choice for her.

@SendTheNextOneIn
My dd has never been inpatient. I had to move heaven and earth for that not to happen because for her it wouldn’t have ended well due to a separate medical condition. She cannot cope with hospitals and anything medics at all. So I’m not speaking from personal experience but from everything I’ve read on these threads over the time dd has been ill and from working with an ED coach, who is a mental health nurse with 35 years working in ED.

The advice from this is: don’t sign your dd from CAMHS. Take everything she is offered. If she’s not wanting to see them, this is her running away. If she’s not wanting to talk about her illness, she isn’t fully recovered because she hasn’t yet learned how to safeguard herself against future

My dd was 16 when she discharged herself from CAMHS and I had no choice because at 16, she got to decide, not me. I was devastated and it set her back for several months and this was working weekly and in some cases twice weekly with the ED coach.

Your dd is only 13 and she doesn’t get to decide what’s going to happen in her future because she’s the child and you’re her mum, who’s been around a lot longer than her. And if she were mine, the answer would be: I love you and I’m going to go along with what they’re telling me right now because they’ve worked with a lot of people like you and I know it’s hard and you’ve been so brave. I’m with you, supporting you and doing everything I can to help you towards full recovery. And part of that right now is doing what they are saying rather than trying to do it alone because that didn’t go too well last time and because we want to make sure we are moving forward rather than going back to where we were before.

The hospital will get her to a stage, where she is no longer medically at risk. However, full and proper recovery takes a long time, maybe years. CAMHS likely will discharge her before this stage. But until they do discharge her, you should take everything offered.

Edit : to add, my 17 yo dd is obviously very different from your dd. However, just over a year on from discharging herself from CAMHS she still can’t buy herself food properly. Dh zipped to M&S with her Sunday just before closing and he decided to wait in the car. Dd chose to buy herself the dip she normally eats but the reduced calorie version. She thinks I haven’t worked it out yet but she hid the packaging, idk where it is. I haven’t spoken to her about it because she’s still getting over this flu that’s going round. And because dd is so sensitive atm - upper 6th anxious time - even I with all my experience am not quite sure what to say and I can talk to the ED coach about it today… I’ve already said to dh he should have gone in as then it wouldn’t have happened. This is just a tiny, simple thing of myriad little things I deal with daily.

How is everyone doing? I’ve been thinking of you all xx

Went to see DD last night and I was expecting a lot of upset and tears and begging to come home after her messages the other evening. Instead she was actually quite bright and chatty and managed to only get upset right at the end of the visit after I’d been there two hours and was about to go home. They took three of the girls (including DD) out yesterday afternoon to a garden centre cafe and they all had to choose a cake to have for their afternoon snack. DD struggled a bit and got upset initially but she said she managed it, and chose a shortbread biscuit that was ‘massive’ apparently.
We’ve got two nights home leave approved for this weekend so I’m picking her up at lunch time on Friday and she doesn’t need to go back until Sunday evening. Slightly apprehensive as I need to make sure we’re ’Doing Things’ over the weekend as she gets frustrated with just sitting around the house but I’m sure I’ll think of something. We’re also going out for a pub lunch with my parents on Sunday, already pre-arranged with them before we knew DD would be home, but she’s willing to give it a go and we’ve already picked something off the menu for her to have so she doesn’t have to choose when we’re there.

I loved reading your update @SendTheNextOneIn Home leave sounds fab, how lovely for you all. Have the best weekend xx

Oh how lovely @SendTheNextOneIn. My dd seems to eat better with people, who care about her. Idk if it will be the same for your dd. I hope you have a wonderful weekend.

@Theoscargoesto thanl you. That’s just what I needed to hear. I have given up hope a quick turnaround but I believe she can have a good life and eventually get better enough. And, after dark moments, that her dad and I can have a good life too.

@SendTheNextOneIn I hope you enjoy the weekend. If it doesn’t go entirely smoothly, don’t worry too much, there will be another time. I remember being very excited when my daughter came home and putting quite a lot of pressure on me for everything to be perfect.

Hi. Sad to be here but thought I’d intro myself before reading though. 12yo daughter has been struggling and I’ve been supporting her ”intuitive eating” for a while but her body image struggles have ramped up and I found her throwing up today (I’ve wondered for a few weeks)
I suspect she’s also ND (AuDHD) and has had huge school based anxiety, EBSA etc, not in small part due to bullying either some comments about her weight - she’s short and curvy (and healthy).
Ive been very gentle and supportive today but I’m so scared.
Ill read back though this thread to see what’s what. Any pointers very warmly received
as I say I’m sorry I’m here but it is good to have found this thread 💖

This sounds so very similar to where I’m at. Nothing helpful to share but sending you solidarity 🫂

How is everyone?
I’m sorry you find yourself here @Potatoelephant.
I hope you are finding help in real life too.

@SendTheNextOneIn I hope the weekend went well for you all.

how are you @HappyRainbow123?

I contacted my GP yesterday, about being concerned about DS not eating much and his weightloss. They gave me an appointment which is a month away. Does anyone have any advice for where we could get support in the meantime?

Beat website. Do you also know your DS’s weight and height. It’s worth contacting your local children’s eating disorder clinic. They will ask their weight and height. Good luck. It’s a very difficult time when you feel you’re not being heard.

How much is he actually eating? If less than 500 cals a day then take him straight to a&e.

Id also be contacting the surgery and requesting a much earlier appointment.

That said dont be scared to start getting strict about making him eat now, i think there’s a fear early on that by pushing them to eat more you’ll make it worse but actually the quicker you start shining light on the issue the better.

He has to eat, 3 meals and 3 snacks a day and nothing else happens unless he eats.

When you say 'getting strict' - what does that look like? If I say we are having X for breakfast he will say I don't want that and refuse, but if I ask him what he wants he just says 'I don't know'. Have tried giving him a choice of two things and he will just say no to both of them.

He's already saying he doesn't want a big meal on Christmas Day, because he's not going to eat much.

@christmastreesyndromeisathing so sorry you find yourself here. I have a 13 year old DD with anorexia. She has been in a CAMHS eating disorder residential unit for seven weeks.

look up Eva Musby on YouTube. She has lots of videos explaining how to help your young person to eat.

Fundamentally, the basis of family based treatment is that parents take full responsibility and control of all meals, shopping, food prep. He has no say. At this stage he doesn’t even have the mental capacity to chose between two options you give him. My daughter was really not able to let us have that control, and that led to two months of continued weight loss before she was admitted to the ED unit. She’s now gaining weight and has started to have home leave (and is eating better at home than she was before her admission but still won’t allow me full control over her meals and snacks). It’s better than it was though.

So the treatment for restrictive ED is family based treatment (FBT) and this means the parents t as less full control of what the child eats.

You decide what they eat, you plate it up, you put it in front of them with the expectation they will eat it.

The child has no involvement with buying food, preparing food or any aspect of what they eat.

Its basically like having a toddler again, you do not give them any choices as they are not well enough to make sensible decisions.

You use whatever leverage you have so I took my DDs phone and she could have it back at the end of the day if she’d eaten her food. Theres no seeing friends, going to school or clubs unless they eat.

When the foods in front of them distraction is your friend, so keep their minds off eating, watch tv, play games etc.

As a parent you have a lot more power than you realise and your child does want to eat, they’re probably starving hungry! You have to be the louder, firmer voice than the ED telling them all the terrible things that will happen if they eat.

It’s normal for your child to get very distressed when being told they have to eat, it was like my dd was possessed tbh. The behaviour was completely out of character and she screamed, banged her head against the wall, threatened to jump out of windows. This is horrendous to witness as a mum but it is also normal.

You need to stay calm and persistent, you have to contain whatever the ED throws at you and still insist the food gets eaten.

I went with smaller but calorie dense portions which worked well for my dd so added double cream and/or butter to everything she ate.

Ugh. So frustrating. The last two weekends DD has had home leave from the unit. I have tried my absolute hardest to make sure we’re hitting her meal plan, but both Mondays she’s been weighed and she’s lost weight over the weekend. Last week was -200g and today was -400g. She’s following her meal plan perfectly in the unit and is gaining 500g - 1kg per week there.

So they’ve said she can only come home for Christmas from lunchtime on Wednesday until Boxing Day evening. Rather than the Wednesday to Sunday we’d requested. I’m not sure if she knows yet, she’s going to be gutted.

That does sound so frustrating. How often is she weighed? I know weighing is a way of tracking improvement, but it all starts to get a bit obsessive if they are weighing her just before the weekend and just after. If she is still gaining a little each week I would take that as a positive. Is there a target weight she has to reach before she can come home?

(I don’t post on here often, but my DD14 has been struggling with this for a year. No hospitalisation, but lost a huge amount of weight very quickly. We managed to get her to put on about 6kg in 3 months and then she hasn’t gained any more weight since May despite eating well. It’s very frustrating!)

@SendTheNextOneIn how disappointing for you all. I agree that it is a lot to weigh her every time she comes home, I suppose they are trying to prove to her that she has to stick with what they say. They may think she’s over exercising etc, I’m not in any way saying she is.
Have you asked for them to reconsider? I know that upsetting her at Christmas could be something she remembers for a long time. Showing that they trust her but want to see progress on her return might help. We are here for you to talk, this is a difficult time for you and we know you just wanted some ‘normality’ for everyone over Christmas. I hope the reconsider xx

They weigh every Monday and Thursday, so she’s always weighed the day after a weekend at home.
She’s not a secret exerciser, basically her current situation didn’t come about because she wanted to lose weight and be skinny. It was always more about healthy eating, and cutting out junk food and higher fat foods. So at the beginning it was more orthorexia that led us down this path. She just naturally tipped into a calorie deficit as she was a gymnast and was training 15/16 hours a week. So the weight loss almost happened ‘by accident’. It’s taken me this long to get the staff at the unit to understand this, as she tells me she gets frustrated in her therapy and 121 sessions as the staff are always talking to her about things as if it’s more anorexia-typical thoughts in her head about body image and weight loss etc, when for her it’s not about that, it’s about eating ‘healthily’ and her very rigid food rules about what’s ‘healthy’ and ‘unhealthy’.
I went to visit her last night and she was a bit upset about only having 48 hours at home for Christmas but she wasn’t too bad. I managed to have a chat with one of the more switched on staff members about the whole anorexia vs orthorexia thing and she said she’d feed it back to DD’s key worker team so they could do some work with her on good vs bad food etc, so I think I’m finally getting through to them.

Merry Christmas everyone. I hope things go ok for you all today. Things have been tough here. Love to all ❤️ xx

What @Mummyoflittledragon said xx