13 year old DD - eating disorder and self harming - what's helped your child?

[SupportWantedPlease]

I'm feeling really low after today's appointment today with my 13 year old daughter at the children's eating disorder unit at the hospital. She has been restricting her food (aiming for 700 cals)/purging. She's lost her period and is suffering with tiredness/headaches. She's also been self-harming. It's really escalated over the past few months, and if she continued at this rate, she could get very unwell.

They've said that I need to make sure she gets 3 meals a day plus 3 snacks. She knows she has a problem, and is engaging at this point in time. But, I'm worried that she won't carry on engaging (and become more secretive), as I feel that she's panicking at the thought of gaining weight and she's become highly fearful of 'bad' foods. Plus, they have suggested she needs 2400 calories a day, which I'm worried is making her panic....

While I'm waiting for info on what support we'll get... I'm hoping to hear positive stories of things that have helped your family navigate through this.

Also, did you inform school? Anyone else?

I would definitely let her sleep with you, anything. To maintain a connection with her. Dd was diagnosed with Anorexia Nov 2020. I would say that we didn’t have anything resembling normality until summer 2024. We still have difficult times, though she is a bloody pleasure at times also! She can have rough times with her younger siblings, who are probably still scared of her. Anorexia is a horrible condition. I can almost 100% say she is over/in remission. I think it could come easy in times of crisis but her preference is self harm.

to her credit she even ended up applying to Cambridge and passed written submission and got to the interview stage. She took rejection well, to think we spent a solid two plus years thinking she was going to kill herself. I mean, it’s pretty remarkable, just hang in there and keep that connection with her x

I have a meeting with school tomorrow. What sorts of things has your school done to support your child? Any thoughts/suggestions would be really helpful to hear.

Between around 12 and 16 we went through self harming and food restrictions with DD. She had ARFID but thankfully never tipped into what I would consider anorexia, she didn't have an issue with being overweight but with food being "safe"
It was a long and heartbreaking journey, CAHMS and GP less than useless but school were supportive (Private) and we could pay for counselling and a Psych.
She is at Uni now and doing really well but I am constantly looking for signs that she isn't eating properly, going vegetarian was a bit of a breakthrough for her and she could decide that the unsafe foods were just meat if that makes sense?
Wishing everyone facing this the best of luck, its tough

Glad your DD's doing much better now. My DD went vegetarian recently, but I think some part of this was wrapped up in restricting some foods, but more for calorie restriction. What time of therapy did she have? We know more about the treatment plan next week, so I'm holding off from booking any private counselling until after that, as I think that would be helpful.

I have just responded on the support thread @SupportWantedPlease.

It’s really common to go vegetarian as part of the restriction. My dd is currently vegetarian and she did that quite soon into the ED, before I realised anything was wrong actually. This was the start of things really going downhill as she stopped getting hunger signals. She is improving, slowly. I dip in and out of these threads depending on how well things are going. It’s a relatively calm time atm.

As for how long someone takes to recover, it’s really individual. Your dd is allowing you to cuddle her and give her affection. That’s actually brilliant and because of this you will hopefully see improvement fast. My dd was the opposite and was regularly wishing me dead. Sustaining lots of non judgmental love, kindness and care is what will help your dd to get better.

I see you’ve been given the link to the Charlie Waller trust. I would get on their 5 part course. It is a different approach to Eva Musby but if your dd has responded to Eva, I think both can work synergistically as you can take the care and the techniques. My dd didn’t engage with Eva so I am doing the Charlie Waller stuff, which is based on the book Caring for a Loved in with an Eating Disorder.

As for private counselling, the NHS won’t accept you to do both. They say they can interfere with one another. I’m not sure I agree. But then dd was signed off from CAMHS for ‘refusing’ to engage. Ie she was too scared to do so and probably neurodivergent. So if you go down that route, I wouldn’t tell them.

Meant to say I hope it goes well with the school. ED and self harm are not uncommon, especially during the refeeding process. So please be aware and the school need to keep an eye on this. Please tell them the self harm may worsen during refeeding.

Dd became a vegetarian about 18 months before she was diagnosed with anorexia. I think this slid into orthorexia, and then anorexia. She is still a vegetarian 8 years later. On a number of occasions, I have had to stop her becoming vegan as I could see this was the ED talking.

i would say there is still a risk of her becoming vegan, which I fear will slide to ED. I cook her food, and I just said I cannot do vegan, I can only cook vegetarian.

On the self harm, one thing that helped my DS was to understand the brain chemistry of it, and to understand it as an addiction. We talked about the endorphins and the dopamine rush, and that it is similar to taking a drug like cocaine, and just as addictive. We didn't take away his blades - gave him everything he needed to keep himself safe. The trust and responsibility meant that he was better able to control the severity of the harm. He gradually reduced from daily harm to now months on end without. I think he is going on 6 months 'clean' at this point - it is 2 years since it was at its worst.

Thank you for these replies - but really sorry to hear your stories with you DC, it's heartbreakingly awful, all of this.

I’ll look at booking onto the Charlie Waller trust 5 part course with my husband. It's difficult 'in the moment' when emotions are running high, to be on the same page as my husband. He prefers rigid rules... e.g. she has to eat everything on her plate. But, he will also put too much on her plate. As I make her meals and see much more of her, I try and take into account everything else that's happened that day when it comes to knowing how much to push her.

But maybe you need to be tough to be kind.... as although she's eating meals but she isn’t eating enough. But, if I really force the issue it results in negative consequences - there was a self harming episode - but also more withdrawal.

That being said, my own mental health can only take so much.

That’s a good point about the NHS not letting you do both. I’ll just see what they say next week and go from there. She’s been given a male nurse to handle her case and I’m worried that she’s less likely to engage with the service on that basis. Not dismissing male nurses, but just thinking that it’s maybe not ideal in her case. Not sure. Obviously I’m looking for the best outcome for her, so it’s something that I’m thinking about.

DD's friends don't know about her ED. She hasn't wanted to confide in any of them (I have suggested several times) and she's actually withdrawn from them. At this rate, she's going to lose the friendships beyond having Snapchat messages and the 'forced' contact at school (where social norms say you should have friends and see them at breaks / lunch).

I've thought about contacting one or two of the friends' mums, but I'm not sure how best to deal with it. I really want her to have support from her friends but... well, I don't know... for many reasons. Plus, social things involve food and she's definitely not wanting to be involved in those.

I am a bit late to this but wanted to share our story which may help.
DD was 13 too and became anorexic in the second lockdown in 2020 (diagnosed Dec 2020).
The two things that helped me the most are:
I thought of the anorexia (AN) as a separate entity to DD. Like a terrorist in her head. The AN had a single purpose, to stop her eating. DD knew she should eat and wanted to eat but was unable to eat as the AN voice in her head was so loud. Once I accepted that any rules and upset and deprivation of privacy etc were aimed at the AN and not DD it helped me enormously.
I was not removing privileges from DD but doing what I needed to do to be louder than her AN voice.
It helped that we were in lockdown so no school or much going on anyway. But if she had been at school I would have pulled her out.
Secondly I learnt distress tolerance. The ability to sit beside her during her distress but not participate in it. (Which obvs i wasn't 100% with all the time, this illness is so hard to deal with).
FEAST have a great video on it on their website.
We had a meal plan. 3 meals and 3 snacks. We started with 'safer' foods and about 1500 cals a day and then gradually (but not too slowly) upped it and introduced more difficult meals and foods. Eventually she was on at lesat 3000 cals a day.
I also hid calories in everything. Double cream in mashed potato. Double cream in smoothies. Butter in mash and oil in pasta sauces etc etc. It is imperative she is not involved in cooking or preparing food and is distracted and oit of the way. If asked what is in the food I used to say " the food is safe and what you need to eat, please eat it"
The only way to get better is to put on weight.
Blind weigh. It's hard for them to put weight on, best they don't know.
Say "I know this is scary but we know what you need, please eat." On repeat
Going vegetarian is a classic AN synptom, knock it on the head. Animal fats are key to recovery. If you don't want to force meat, push full fat diary. A lot.
My DD purged by exercising. We had to be with her 24/7. The AN is not trustworthy. The AN will hide food, exercise, vomit, etc etc. Your DD will lie. It isn't her it's the AN.
Distraction at meal and snack times helped us. TV meals. Others find playing cards helps. And lots of distraction after food.
Try your best each day. Try to remain calm but compassionate. Accept that you will fail. Scream into a pillow. Sleep with her if it helps.
My DD benefitted from Olanzapine. It quietened the AN voice a little and slightly reduced her stress.
Be prepared for aggression and even violence.
My DD weight restored by the Aug of 2021. It took another year for her brain to fully recover and another year for me to trust her again around food.
She is now totally well and turns 18 in July and leaves for Canada to go to Uni.
Younger patients have a much better prognosis. She is still a child. She is very ill. Ylu and your Dah need to be in charge and wrest the control back from the AN.
Self harm is scary and worrying but the self harm you describe wont kill her, AN could. So yes remove sharps etc but get her eating. the self harm may well resolve with weight gain. Sometimes doing the thing that feels right (allowing her to make meals, choose foods, be involved in food shopping ) are exactly the wrong things to do.
Hope some of that is helpful.

Thank you for replying @Namechangedasouting987 - really good to hear a positive outcome and hear what worked for you.

I feel DD is making progress - even if the blips along the way feel like minor punches to the gut each time. (I definitely need to learn distress tolerance to be able to cope with it all better). Since getting the diagnosis and her case has been properly assigned, she’s been doing pretty well on the 3+3 plan. She’s put on weight since her last weigh-in, and has been allowed to walk to/from school again and resume activities.

She had her psychoeducation Zoom yesterday (which are delivered by the ED team), and they seem to be v triggering. I think she could benefit therapy, as it’s a way to explore these feelings on a 1:1 level rather than the bad news broadcast of these sessions.

Generally, I feel really quite worn out though - and have had days of feeling pretty depressed. Not just this, but other family stresses at the moment. But, hopefully it’s onwards and upwards - and this too shall pass.

Hi folks. Son 13 was diagnosed with anorexia about a month ago. He is now being treated by CAMHS and is making good progress with his weight on the 3-3 programme. I’m just lost though. Struggling to deal with it. He is constantly talking about his weight and fears of being fat. I know it’s a good sign he is communicating but it’s so hard hearing it over and over and nothing seems to help. How do parents get through it?

I am not sure you do get through it, as such. It’s very traumatic, but perhaps I am confusing all the self harm that accompanied ED for our daughter. But we got through it, and are getting through it. Definitely a very strong relationship with as a part of it, but it was a very long road. DD’s anorexia came in two waves also, so very long lasting.

Thank you for your response imip. I’m so sorry you have gone through such a difficult time and continue to do so. I’m glad your daughter has you to lean on.

My advice would be to see if you can meet up with other parents going through the same journey. There is a support group on mn but I used some FB groups. There really isn’t much there for parents and it’s helpful to have something to lean on for when the ED fights back.

Thank you so much- I will see what’s out there