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?

It’s really good your dd is engaging. Yes, you need to inform the school. Your dd may need adjustments or watching after lunch to ensure she eats and doesn’t purge. If you can go to school to be with her, that may be needed etc. I suggest you go on the support thread. You will probably get more answers and ongoing information.

As for what helps, lots and lots of love. No judgment. As your dd seems to be engaging, she will probably respond to Eva Musby. She also has a website. https://www.amazon.co.uk/Anorexia-other-Eating-Disorders-compassionate/dp/0993059805/ref=sr_1_1?dib=eyJ2IjoiMSJ9.Un2KSqncmkko28xFDYK2OA.yMYvW-Xr4hAuL1zxGCN4sA5epDVaOKCU-a_zZhd3Ip8&dib_tag=se&qid=1740512702&refinements=p_27%3AEva+Musby&s=books&sr=1-1

Thank you for your reply. I really appreciate it. Thanks for the recommendation. I've downloaded the Kindle book, and I can see there's some very useful advice in there about the things to say and do at mealtimes. This is the day after and I will like I've been in a boxing match already...

You’re welcome. I really would recommend the thread. I can’t give you the level of support you would get on there. Some posters have children, who are recovered. My dd is not. Eva Musby is just one way of dealing with Ed and the methods don’t work for everyone. The reason I recommended it is because your dd has a lot of awareness so in my experience of being around a while it is more likely to work for her.

https://www.mumsnet.com/talk/eating_disorders/5172972-support-thread-13-for-parents-of-young-people-with-an-eating-disorder?page=6&reply=142450182

A horrendously difficult journey for us during Covid that involved virtually no CAMHS support. We are still very traumatised but dd is not 18 and not anorexic.

what ended up working was just sitting with her insisting the meal had to be eaten. Food was flung everywhere, its was fucking horrible.we also got a mood board of what she wanted the most as a ‘reward’ for eating. It was to go to Greece. She had a board of pictures up in her room. We went when she got a certain weight to an all inclusive (she was out of school at the time) - upon reflection she was still finding things very had and so was I (not helped by getting Covid there), but it did seem to the the trigger. She also returned to school and she wanted this. We had the narrative of when you start restoring weight you will have your life back, which I think is the recommended narrative. Not eating to put on weight but to keep your brain working l, to be able to go out and have the energy to socialise.

You might also wish to consider if she is autistic? There is a high correlation between autism and EDs. Amazingly dd, can look back and laugh about the ED and how she would do things like run out of therapy appts over eating a teaspoon of food!

because we initially did it have CAMHS support, dd extremely self harmed and attempted suicide, was in a tier 4 hospital. She finally got the CAMHS support and that was what we all needed. So if you don’t feel you are being supported well enough, complain! I wish I had done this rather than accepted shoddy support (which I informally complained about at the time).

Thank you, I have hopped onto that thread and read a few pages. She does have awareness that it's problematic but I am worried that she’ll push back and stop engaging. Plus, I think she flushed her pasta lunch down the toilet....

Part of me hopes, that with dramatic intervention and support, we can reverse the worst of this quickly... that it's a phase - albeit quite an extreme one. Deluded??? Hmmm, perhaps that's not likely, I don't know.

I did email school this morning to let them know.

I'm so, so sorry to hear about your DD. My heart goes out to you. It's so, so hard. And it's just new for us. Can't imagine the burden of dealing with this for a long, long time.

I’m sorry to hear your story @imip. That sounds awful. Thank you for your advice. I don’t feel she has ASD, although I understand there is a correlation.

CAMHS referred her to CEDS, not sure if we still have anything to do with CAMHS… that bit isn’t clear at all?

I don't really have any advice, we are 12 years in and still struggling. But there are lots of positives stories out there. It's just a really hard illness to deal with , but lots of love, support and non judgments go a long way to help. Getting the school involved is imperative, you won't be able to watch her 24/7. Good luck xx

These may be useful
https://www.charliewaller.org/what-we-offer/eating-disorder-workshops-for-parents-and-carers
I think this is a different approach to the Eva Musby approach, but worth having lots of options maybe.

@SupportWantedPlease As a teenager, I lived in a place where there were girls who suffered Anorexia/ Bulimia, and they were massively competitive.

Self Harming, too ( tons of shallow scratches on forearms where they could be hidden but also shown to an anxious visiting parent.

Is your daughter following online groups “ Pro Ana?” These can be massively destructive.

Has she been bullied at school?

We used to live near a very expensive private hospital for Anorexic people-
Our dogs used to run around the grounds adjacent- and the amount of hidden and dumprd food was ridiculous to see.

Patients must have secreted it about their person to throw into the woods for passing dogs or foxes to get.

Anorexics are very determined and “clever” at hiding-not dissimilar to addicts.

What helped us (with the support of the eating disorder clinic) was shutting everything down when our DD (also then 13) wouldn't eat - stopping school, taking away all screens, no TV, no socializing, none of her usual extra curricular activities. Because it's their choice - anorexia or life. The illness does not listen to logic. It is horrendous. We even threatened to take her bedroom door off its hinges so the illness had nowhere to hide. It didn't come to that, thankfully.

She also self harmed. We learned never to minimise - took her to A&E every time until it became, again, a huge impingement on her life. After the last time, when we were there until 3am, she stopped doing it.

Of course you also need love but in our case that was not enough.

She's still quite rigid about food but she's alive and a healthy weight.

Thanks everyone for the latest replies, it’s really appreciated. I had a call yesterday to say that DD has been diagnosed with atypical anorexia nervosa. I’m grateful that she’ll get some form of treatment.

It’s been quite rough since our hospital visit. The tension around meal times has been unpleasant at best - and just plain exhausting at worst.

I’ve been trying to talk to her about things… and I’ve said that certain things won’t be possible until she’s eating better. I think she’s listening - but I’m also worried that she putting on a show of eating more normally (but is secretly still restricting and counting calories) outside of these displays of normality. Her meals are still pretty small, but at least she’s not skipping any of the meals at home.

@Bluebuddha10 I’m so sorry to hear you’re still struggling 12 years in. What age did it start?

@oakleaffy yes, I’ve seen cuts on her arms that are quite shallow. I just don’t understand why it’s seemingly become quite commonplace to do this. I asked her why she does it... doesn't it hurt???! And she said of course it hurts (as in, that's kind of the point)... I don’t believe she’s following these online groups, but she’s definitely getting her ‘tips’ from somewhere. No bullying at school, no. She has nice friends but she doesn’t seem to be speaking to outside of school at the moment, which is def a change for her. She hasn't invited any of her friends over for ages.

@Brandyb I’m so glad things have improved. How long did it take for her to get better?

@SupportWantedPlease diagnosed with anorexia aged 12 but was going on a few years before (was previously mistakenly diagnosed with something else). In and out of hospital, self harm and one suicide attempt. Definitely some improvements over last few years, but still very much dominated by the ED, still very underweight and still monitored by ED team. It's relentless. And very sad. Such a bright beautiful young lady but so tormented by this awful illness. Sadly I now view it as a long term condition that she has learned to live with.

In my daughter's case, a couple of her friends were self harming, she was feeling depressed and tried it. It then became habitual. I think it's similar to not eating - it's a horrible but powerful sensation that gives them a sense of control. They are both coping mechanisms, but harmful coping mechanisms.
We're in the middle of it, so I don't have any practical tips. We're trying to emphasize the positive, "When you're eating better, we can..."
Make sure you take care of yourself too, if you can, even in little ways, as well as DD.

@Bluebuddha10 that’s horrifying, so so sorry to hear this.

@Loopholedout I’ve read online that about 17% of people will self harm during their lifetime. It’s so sad it’s almost become normalised perhaps?

We have changed a lot of things since the hospital appointment.

• We’ve not allowed her to be alone in the house (I’ve changed my work pattern to ensure this)
• We’ve put limits on her screen time / wifi use.
• She’s also not allowed her to make our family meals without supervision.
• There’s a school trip she likely cannot go on (as she’ll be away for a week).
• Taken away items of hers (sharp items)
• We’re constantly going into her bedroom to check on her.

I don’t know, I can’t help but feel she might feel she’s being punished? What I mean by that is that she loves her independence and we’re giving her hardly any freedom at the moment - plus maybe she feels an invasion of privacy of us constantly going into her room? Not sure if it’s OTT, which can be negative too?

Obviously, we are combining this with lots of love and TLC, but still...

@SupportWantedPlease this is very similar to the approach we took after our DD's first suicide attempt. She did feel very punished, although we explained over and over that the changes are because we love you and need to kept you safe.

The advice we had from CAMHS was to roll it back a bit, like to remove lethal means from her room but not check on her so frequently, as this upset her. With the eating, the advice we got was to watch her for an hour after eating (not let her go to the loo) - they said TV dinners or watching a film straight after are really helpful for this as you can watch them without watching them as such. Obviously the practicality of this varies.

We relatively quickly allowed her to go to close friends' houses (having spoken with parents about locking away lethal means and not for meals as too much to ask) and eg out to the local shopping centre (at times when she was eating enough that that level of activity seemed ok).

CAMHS talked to us a lot about managed risk taking. However, this was in the context of self harm and suicidal ideation - we haven't had any specialist ED support and where a child is medically dangerously unwell with an ED, I don't think risk taking would apply.

I just sharing what we were told in case helpful in the context of your DD's self harm. It might be that watching her very constantly - other than at food-related times - is OTT.

I'm so sorry you're going through this, it's so much to contend with.

Our situation is different as my son has depression and self harms. Initially we hid anything sharp and were contually checking up on him in his room. He sees a psychologist and we had some separate parents sessions, he advised that whilst it was counter intuitive we shouldn't hide sharp items. He explained that self harm was a mechanism to deal with difficult feelings and made him feel in control. If we then took that away the urge hasn't gone and he was likely to find something else and there was a risk of self harm escalating. He also hated us constantly checking on him and made hom resentful and angry. He also made it clear he had no intention of stopping. We took a step back, I bought platers , bandages, anti septic wipes and had a very practical conversation about infection/ sepsis etc. I don't comment on the actual self harm but after wards try and acknowledge difficult feelings/ gently explore why he wasn't using alternatives he discussed with psychologist. We when he wasn't so low discussed what he found helpful/ didn't and tried to agree a plan for when he felt very down. Ie a set time in room to be alone but then doing something we one of us, ( watching tv/ helping cook/ looking for things to do on holiday/ going for a walk, bike ride etc). It's really difficult to navigate, I constantly question whether we are doing enough. Make sure you look after yourself, take time out for yourself and have supportive people to talk to.

@Loopholedout Thank you, this is useful to hear your thoughts. I guess yours was a very natural parent’s response to a very desperate situation.

I know it’s only been a very short time, but I feel like being so closely monitored and constantly checked is making her feel like we have zero trust in her. Always looking at her, listening to her movements… constant vigilance and anxiety. Like she can’t go upstairs without one of us loitering around upstairs after meals.

Anyway, I think I’ll need to talk to DH about us tonight things down a bit for the sake of all our wellbeings…

@MerrySeal So very sorry to hear about your son. Yes, I do worry that these feelings will come out in other ways. The first night where we went full-on ‘you need to eat every item on your plate’ she cried and cried and then went to her room and broke something. She's never done that before.

I can definitely relate to the constant questioning of yourself. It seems either she’s alright (she’s eaten an amount she's deems is OK, but I feel negligent) or I’m alright (she’s eaten a 'good' amount and I’ve done a 'good' job... but then I feel upset that she's upset). There's a constant tension.

It’s really hard to keep a child safe sometimes, anything can be used for cutting or ligature (Coke can, door knob). However best minimising risk through locking knifes, medication, alcohol, leads away.

Try therapeutic activities, crafts, art. My child had weekly 1:1 jewellery lessons which were a life line when uncooperative with talking therapies.

School was the main issue, sensory overwhelm and pressure.

Please ensure bloods are ok - B12, iron, vitamin D. These impact mood greatly.

Consider medication if things don’t improve. Fluoxetine through the ED/CAHMS psychiatrist.

After a few incredibly difficult years we are now completely out the other side and my child is thriving doing a level 3 animal care apprenticeship in the workplace.

Dd was diagnosed with atypical anorexia also. As we fed her (going through the refeeding programme, daily blood tests then every two days etc etc) and we just sat there as she stuck to it. Then self harm increased as it was just another way of hurting herself. The self harm was not superficial, we were unaware it was happening. Then when we were aware, we were unaware how bad it was (her arms are like the landscape of a relief map - lots of ridges). CAMHS were aware of this and did not tell us. After the suicide attempt, and coming home out of a tier 4 hospital (which offered no ED support and she quickly lost 10 kilos). We watched her 1:1. We did activities as mentioned above, diamond art, puzzles, slowly introducing school work at home. There was definitely no school.

DH and I were on the floor - just exhausted, taking it in turns to sleep in her room, then outside her room. Sitting outside the door when in the bathroom. It was really fucking horrible. This winter gone is the first time we have not camped outside her bedroom door (door always open at all times) for four years.

Ultimately, it was going to Greece (as previously mentioned) and getting back to school that did it.

@HeyDoodie Yes, she’s low on Iron, Vitamin D… so she’s been prescribed supplements. I’ve had low Vitamin D before and it affected me a lot. I’m so glad to hear you’re completely out the other side now, that gives me hope.

@imip Awful.

DD has been distressed over the weekend and came into my bed with me.

How long did it take for your DD to recover? Was it 4 years?