Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Lottsbiffandsmudge She is 13. Although she’s been restricting we are fortunate that she’s still been having dinner at night with us. Lunch has been almost non existent on school days and breakfast has been “hit and miss”. I’ve not been able to get her in to the gp yet.

A previous poster said about not giving her any choice regarding meals, portions or servings but I had her help pick a few meals for the week when we were meal planning at the weekend and one day I gave her the choice between leftovers from the previous night or a chicken dish. Should I make sure I don’t do that again? None of the meals which were picked were calorie controlled just typical home cooked family dinners.
I watched the Nikki Grahame documentary last night. I didn’t think I had any tears left, I’m even welling up as I type this.

Hey @Cantfindthewordsddstruggling - that was me saying about not allowing input in meal choice, prep or plating. This is because the eating disorder thrives from control. It's part of the wider approach to tackling this which involves seeing the ed as a separate kind of thing to your loved one - a bit like it's got your loved one hostage. I did a course with Beat a while ago, and one of the things I learned that it's not helpful to give the eating disorder an inch, as it fuels it and keeps it going.

Have you got the Eva musby book? If not I would start here as it really explains what the approach is. Some of her chapters are on her website here anorexiafamily.com and she has a lot of useful YouTube videos too.

When we realised my daughter had anorexia she was similar to yours - lunch was clearly being thrown away, breakfast too probably, but she ate a meal with us in the evening. Unfortunately one good meal isn't enough and my dd had lost quite a lot of weight by the time the penny dropped for us.

@Cantfindthewordsddstruggling my DD was 13 when she started restricting too.
Its a terrifying place to be and its normal to feel overwhelmed.
As @greydoor says Beat and Eva Musby are a good place to start. But here is what I wish I had known when I was first in your situation.
AN is a biological based illness brought on in genetically predisposed individuals by weight loss.
It doesn't matter why the weight loss happens. In our case my DD was trying to 'stay fit for football' in lockdown
Once the weight loss has happened (which is always without the carer knowing!) the ED takes hold.
From then on the reasons for continuing to lose weight are the ED
The only cure for an ED is weight gain.
You cannot therapy your way out of it. In fact therapy can be pointless whilst at a very low weight as the brain is starved.
Weight loss hits the brain first. The body protects vital organs. The brain is not vital.
This explains the out of character behaviours, the lying, the totally illogical thinking. There is no reasoning with ED.
I found it helpful to think of her AN as a separate entity. And in fact many sufferers describe ED as a voice in their head.
Often they want to eat but can't. The ED will not let them.
This is why it's best to remove any choice around food. Because every choice you give will be run past the ED and the sufferer will go for what they consider to be the lower cal option. Even if (like my DD) a naivety about cals means they make the 'wrong' choice.
Making and serving food that the sufferer is supported to eat gives her an 'out' with the ED voice- 'mum made me'. They will still have extreme guilt.
If your DD is upset it means you have 'poked' the ED. This is a good thing. It's not possible to treat an ED without the sufferer being upset. Your are saving their life. Anxiety won't kill them an untreated ED will.
ED turns usually compliant, honest DC into lying, hysterical DC you don't recognise.
Never trust the ED.
Try to self refer to your local ED service if poss.
Persist with the GP to get physical obs done.
In the meantime start a meal plan (unless she has been severely restricting and has lost a lot of weight v quickly in which case I would go to A&E to rule out refeeding syndrome)
Plan ALL her food. Breakfast, snack, lunch, snack, dinner, snack
If possible take her out of school to establish this plan.
Read Eva for tips to help you get the food in. The thrust is distress tolerance and compassionate but firm insistence. Use distraction at food times. Anything that helps. Set an expectation that food will be eaten.
She will react badly. That's normal. Keep saying things like 'I know this is hard but this is what you need to eat, please take a bite', if food is thrown replace it.
Take each meal at a time. Some will be OK. Some will be hideous. You can only do your best.
As soon as you get a referral think about meds. Olanzpine helped us.
Most important of all remember that recovery is possible. More than possible. Younger sufferers often do better not least because they stay in children's services and parents naturally have more control.
And please come on here to vent. This is all easy to type..it was hell to live through and I am not going to lie it nearly broke me. The support on here is invaluable. Even if we can't help practically we can listen and most importantly empathise.

Hi all. My DD is in the grips of AN (not diagnosed yet), and the only way she will eat some lunch at school is if it's in the car with me. But this is just unsustainable. Because her school is so far away, it means I am having to stay in that town all day - I don't have time to go home and come back. So that's five days a week I'm hanging around to give her lunch. Not able to work or get any rest. I'd like some help from school with her lunchtimes, but not sure what I can reasonably ask for, as she'll need more than just supervision - she'll need to be encouraged to eat, too. There is a health centre on site with school nurses. Any advice much appreciated.

@Cantfindthewordsddstruggling I’m so sorry you have found yourself here. Your story sounds similar to ours. My DD would restrict herself all day but come home and eat a normal dinner with the family. When she’d lost half a stone I took her to the GP who said that she did not meet the criteria for a referral. Another four weeks passed, and another half a stone was lost, then finally the GP referred her. On her first assessment she was admitted to hospital for bed rest and refeeding. Her WFH was 63%. She came home but struggled with the meal plan and lost more weight and we had to make the heartbreaking decision to agree to an inpatient clinic. Although we didn’t want this, we know it’s her best chance of recovery. She has gained nearly 7kg in 6 weeks and is now nearly 80% WFH, and she has her first overnight home leave this weekend. Whilst she is pleased with her progress, the ED is making her feel guilty about doing so well, but intensive therapy is helping with that.
All I would say, is insist that an early referral is made by the GP. Our story could have been very different if my DD was referred on our first GP appointment.

I have been lurking reading all the advice. Apologies for the length of the lost. My DD was diagnosed with AN a year ago. Initially we made slow upwards progress but the summer holidays and loss of school routine have caused a material deterioration. She has now been referred to an intensive day programme but they had said they felt her anxiety levels are so high they didn’t think she could participate and they wanted to refer her back to the community team even though the support they have provided has been far from effective. I managed to get them agree to give her one last chance and she managed to comply with everything today but unsurprisingly tonight has been fraught, plate smashed, thumped me, just howling but did eventually eat most of her dinner. If she doesn’t comply with very strict rules they will remove her from the program. We have been trying for months to get her to take olanzapine but she had ‘researched’ it and has convinced herself the side effects are so scary she won’t take it (or more accurately the AN has decided). I have suggested trying another anti anxiety medication that isn’t so linked to ED’s (and weight gain) as a bridge to get her to take the Olanzapine (but this seems to be viewed as enabling by the ED team - for me repeating the same conversation for months with no progress is the definition of madness) as the team don’t believe she can stay the course without some help and I tend to agree - sheer bloody mindness got her through today. Has anyone had any success at convincing their child to take Olanzapine? X

Olanzapine was v helpful for my DD.
She didn't want to take it either.
I had to threaten to remove her permitted exercise. She either took it or lost something else.
Harsh but I was at the point where cajoling and persuading weren't going to work.
I would have crumbled it up in her food, like for a cat, if I'd had to. I was beyond the point of any scruples.
I was trying to save her life. And everyone else's.
It wasn't a magic bullet but it did take the edge off slightly. And she finally slept well. Which at least meant I did and I didn't have to be up half the night stopping her star jumping.
What is your leverage?

@Brokenpoppet Olanzapine was instrumental to get my DD to eat. She had researched it too but she was an inpatient in hospital, refusing to eat and we came close to the feeding tube so she had to give in. It works pretty quickly (within a couple of days).

Can you try to hide it in food? It's not a cure but it took the edge off of the total panic and anxiety about eating and allowed her to eat again.

My DD's discharge date has been put back to January. I think it's the right decision. She will be having 4 nights a week out, so she'll be going to school Tues-Thursday and out weekends too. She took it pretty well. I think she is starting to accept that she does need to get to a higher weight. But that's not the big news. The big news is that she had a friend (AN but in recovery) stay over last night. They have made themselves a challenge jar of all their fear foods and other challenges like eating in a restaurant - last night they summoned up all their courage and went for a Maccies! So proud of them both. Tears streaming down my face here. I really think she is going to beat this thing. Hang on in there everyone.

@NanFlanders I'm crying with you, that's absolutely amazing!!

@NanFlanders thats a massive step - I am so pleased for you and your DD.

First birthday for DD post AN diagnosis is coming up.

What do others do on birthdays? DD doesn't want cake, eats a very restricted meal plan, we have to be at home for every meal and snack as DD finds eating outside the house impossible - so cannot really do something either. And she is generally miserable on top. Help!

@Curlyhairedassasin I'm not sure how much activity your DD is allowed, but if she is off school, how about a balloon arch in the living room with presents under (and sing happy birthday then, rather than round a cake), a facial/nails done or similar with you, if she's not hanging out with friends much, and an escape room with the family - with meal plan food incidental to the day instead of the focus.

nan she is in school full time. Just isn't allowed additional sport.

I like the facials etc idea! She would love that. Thanks.

Bowling, crazy golf? I'm trying to think of things where she wouldn't move around too much!
Would she like something instead of a cake? It's a hard one as I suspect it's the ed saying no cake, we'll be approaching the first birthday in February and it'll be very different to previous ones, similar to Christmas. It makes me sad and I'm really not looking forward to it.

@NanFlanders fabulous to read this

@Curlyhairedassasin some lovely suggestions to mark your DDs birthday.
I do find it really hard around missing so many food focussed holidays we used to enjoy w friends and family (DH and I are from 2 different cultures that have a lot of high days marked by food)

prosecco, bowling may also work :)

@NanFlanders lovely update from you. Your DD has come so far in the last few months! It's so uplifting to hear.
@Curlyhairedassasin I think you've had some great suggestions for your DDs birthday. Maybe a cinema trip with friends, if you can fit it around meals etc? Or some kind of salon based pampering if she's into that kind of thing - my DD loves getting her hair and nails done in a salon and would consider it a real treat. We have DDs birthday end of Jan, so been starting to brainstorm a bit myself too.

@Curlyhairedassasin we find birthday celebrations really tough too, as my daughter won't eat anything that's off a highly restricted mealplan, and will only eat at home (sadly this has been going on for more than 2 years).

Bowling is a good birthday celebration activity, as is going to the cinema. I'm hoping to try crazy golf soon. I think the nail salon suggestion is a good one too.

Such a miserable joy-sucking illness

This nightmare just continues to get worse. More info came to light today.
Lots of phone calls to make tomorrow and thinking of having her off school for the week and keeping her away from tech as her and her friends all seem to be “feeding off” her each other with their talk of restricting/purging and self harm.

How do you all manage to stay emotionally attached? It seems most of DD's fury and hatred is directed at me, and honestly I am finding myself checking out emotionally. I do tell myself it's the ED talking but at times find it so hard to stay warm and loving in the face of it all. I know I need to, but my own self preservation is kicking in and it's so hard!

Nan** that's wonderful to hear 🥰

Curly could you incorporate the bday cake into the meal plan somehow? That's how I used to try and do it. When dd was in the midst of it I focused on lots of pamper stuff, warm, cosy clothes, and craft stuff to distract her.

Granny I think you have to recognise when you need a break and find some time for your own well being. I do a weekly pilates class which is like therapy for me. I also do things like make time to meet friends for a coffee, go for a nice dog walk or have a long bath. If you can afford it I think some counselling for you would also be money well spent.

Cantfind yy to taking all her internet access/phone away, it's absolutely toxic at the best of times so definitely trust your instincts.

@Curlyhairedassasin Thank you. I do pilates weekly, plus a couple of walks/gym etc. It does help. Overall I think I'm pretty good at making time for myself, and I'm fortunate that my DH works from home 3 days and is generally very good at holding the reins so I can go off for a bit - we both need time to ourselves and recognise when it's needed. I think what I'm struggling with is that after I've had abuse and insults hurled at me, my DD often comes to me to apologise and wants affection and reassuring, and I'm finding it really hard to let go of what she's said and pretend like nothing happened. I know on some level she is testing me, and wants that reassurance that I will love her whatever, and I go through the motions of showing her that, but sometimes I feel like my emotions are just shutting down. Hard to explain. I feel like the ED is gaslighting me!