What support is reasonable to ask from school for an eating disorder?

[CuppaTandBicky]

We are currently at the very start of dealing with DD eating disorder.

Just wondering what support is reasonable to ask of school. It's a large secondary school.

At the moment she has been severely restricting food for a month. She is very tired and her mood is low but has had a week off school to allow her to rest and for us to monitor and persuade her to eat all whilst seeing the doctor and having tests, awaiting a referral for some help.

So she isn't at a point where she is dangerously ill... She just may struggle with concentration and energy levels. She also won't eat at all at school.

School are aware, but we haven't had a meeting yet to discuss her return, just a brief conversation over the phone. Eager for her to have some normality to her day but worried about her energy levels and having 6 hours with potentially no food....

My son started doing this. After a biology lesson in 2nd year at high school, so they were all around 13 years old. Part of the lesson was BMI (I do not understand why) so all the kids weighed themselves. And he was heaviest by quite a bit. He is also a foot taller than everyone, and incredibly broad. He definitely isn’t skinny and was probably carrying extra weight but it wasn’t noticeable in a “chunky” way if you see what I mean. When he hit puberty, he just grew and his shoulders and back just got very broad. So he stopped eating.

I dealt with it but having a chat about his family and genetics, look at his dad and how tall and broad and muscular he is. My son takes after that shape. His friends are all really skinny kids. Once has ADHD so doesn’t eat and is severely underweight. A few have very short parents so they’re just differently shaped. We talked about how he is a larger person, and he could become very heavy or he could become very strong. But if he doesn’t eat then all he will become is very unwell. I said if he is worried about his body then the only real option is to focus on health. I took him to the gym and got him a trainer and he now takes that seriously, and it includes diet work - not dieting, but correct nutrition. So he is great with macros and eating good sized meals with everything he needs, loads of veg and protein and enough carbs.

But it took an honest conversation about body shapes and body image and that it takes work. I didn’t once say “but you’re fine” because saying that doesn’t work, and he didn’t feel fine. He wanted to be healthy and strong, rather than skinny and unwell after I laid out what would happen if he chose not to eat. And it has taken a lot of support from me for him to eat right, and not worry about the calories and not obsess over his look because he knows he is putting the work in so it’s ok.

Hilary Duff is doing a whole campaign at the moment about strength for women. Don’t get thin, get strong. Your daughter is far too young to remember Hilary Duff! But if you can bring her up, and show her photos of Hillary from the cheaper by the dozen 2 era… she is very very thin and unwell looking as she was struggling with eating. Then look at her now; she is svelte, healthy, strong and toned. Because she switched her focus to health and strength after having kids, rather than food restriction and being skinny.

Maybe a conversation around that might help? Get her into strength training?

Oh yes she was distraught when she heard she was on the 50th centile and it made it even harder.

The GP has referred us when pushed. I don't think he was going to until he had re-weighed her which he planned on doing "in a few weeks". I'm glad I pushed because i can't imagine a few more weeks of this with no support!

I will look in to this thankyou. I think reforming as being healthy rather than gaining weight/not being skinny is a good idea.

If she doesn’t like the idea of toiling away in the gym, then maybe check out climbing centres. They always have clubs for teens and the toning and strength women get from that is unreal. And she’ll have to eat to have the energy to do it.

I could be talking out of my backside and exercise might make it worse, she could pair it with starving herself. I don’t know. But I’d try talking with her, the difference between skinny and wear and svelte and strong. And how you food is a tool and a fuel to get the body she wants, have the energy she needs and the life she wants.

@CuppaTandBicky I totally get you needing support. It’s so difficult to navigate this on your own. You need to keep pushing for help. Go back to the GP if necessary. We’re here help too. This isn’t easy at all.

I would advise not taking about weight training or exercise until the ed team has been consulted. My friends child had ARFID and became exercise obsessed. He declined very rapidly. Please speak the experts. Take time off if you need to.

Thanks, yes I think that's sensible. The current plan is just trying to get her to eat whatever I can manage to get her to eat until that appointment!

I don't think many anorexics would willingly eat soup with butter and cheese in it. If she tries to press her too much to eat high calorie foods she could end up purging.

I wish she would! We are at the stage of her checking ingredients and cals closely before eating. When I try to push back she eats nothing, so at the moment I'm just being thankful for the stuff she does have and trying to get her to have more of it. Not sure of that's right or wrong but it's all I have at the moment!

If she’s diagnosed with anorexia nervosa, I expect their dietician will immediately put her on a high calorie meal plan with 3 meals plus snacks a day, with very high calorie content. She needs to put weight on quickly. She needs far more calories than the average teen. I was putting cream, butter, coconut oil in at every opportunity. The motto is that ‘food is medicine’ . And all exercise will stop until they are happy she has gained enough weight.

It’s really important to understand that anorexia isn’t just a preference for eating less — it’s a very serious psychiatric disorder that distorts how a person sees food, weight and danger. Then starvation itself affects brain function and judgement. Letting her avoid fear foods reinforces the disorder by teaching the brain those foods really are dangerous. Recovery is not possible while the illness remains in control of what the person is allowed to eat. It’s a complex illness and it’s very easy to do completely the wrong thing, even if well meaning. Take all the professional advice you can get, and while you are waiting, educate yourself with books and recommended resources.
Eva Musby is good and the FEAST community https://feast-ed.org/

Just let her eat her safe foods. I know it's hard but if you try and sneak butter into soup etc she'll notice and stop trusting you. I hope things improve x

Disagree strongly that six hours without food isn’t an issue. ED recovery requires regular, structured eating, not just any calories at any time. Otherwise you set up a chaotic eating pattern that leaves them vulnerable to bingeing and purging.

The rule of threes is a useful guide - 3 meals, 3 snacks, no more than 3 hours in between.

I wouldn’t send her back until you’ve got advice from the ED team.

Definitely don’t hide calories in food etc.

@CuppaTandBickyit's really crucial to reduce food pressure as much as possible. IMHO supervising lunch would be disastrous for her.
If she has breakfast try to get some protein into it if at all possible - either a shake or adding protein powder to milk for cereal.
Get her to take a really good multivitamin for teenage girls with iron which is crucial for appetite.
If she doesn't eat the food she takes to school try not to comment.
And then let her eat whatever she likes after school with gentle encouragement but no pressure.
No PE sounds a good idea too to reduce calorie expenditure.
It's a tightrope but hopefully things will improve for her if she feels in control of her food.

Thankyou. This is helpful. All the posts telling me to get her to have 3 high calorie meals and 3 snacks per day I'm sure that's what we are supposed to be doing and we will hopefully get to that after we have had the eating disorder service input but at the moment it's simply not possible..she hasn't eaten anything at all for most days of the week for 4 weeks so the fact that she has built up to 6-800 cals I think seems huge for her

Im surprised given the lack of intake and the amount she is underweight the GP didnt suggest taking her to A+E.

She may need a MHA assessment to consider detainment, her life is at risk if you're saying she is not eating most days, or do you mean she has just started over the last few days to increase her intake

What did she have today and yesterday for example?

She has eaten every day since I found out

have you looked at the Beat website?

Yes been in touch with beat and they sent me some info to read. They weren't especially helpful to be honest

Cereal with whole milk in the morning is fine, not everyone is an early eater, but a high calorie snack after school then a proper dinner would be great. With dd I know where her weaknesses are, she’ll skip food given a chance but a custard tart is always eaten

There's some quite dangerous advice on this thread! Definitely NO exercise. Your GP is clueless.

I'm really glad you've got a referral, in the meantime I would recommend Eva Musby- she has great videos that are manageable to watch even when your brain is boiling with stress. The MN thread linked on here for teens with ED is good as people will totally understand but it can be quite depressing unfortunately. Feast website is also good. I found the BEAT parent training good, it's online. The title is something about dolphins.

Thankyou I will look in to those.

I could do with something that covers tips on HOW to get someone to eat rather than what and when. And I get that's not an easy thing to advise on because everyone is different. Especially when you bring neurodiversity in to the picture.

Everything says to keep calm and by keeping calm I have managed to persuade/come to a joint decision with her about having bits of food here and there but nothing substantial.

I'm assuming CAMHS eating disorder service will include some therapy to try and change her mindset to some degree?

The Eva Musby book is good for that. Helps with what to say and what not to say. We went through CAMHS and they usually don’t offer much in the way of therapy at the beginning as the brain is not receptive to therapy while it is starved. They look to focus on weight gain first. They want to see 100% weight for height. It took me a long time to get my head round that but I eventually realised they were right.