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....

You can sneak extra calories and protein into her cereal milk by mixing in marvel dried milk powder. I have to do it as I'm underweight for other reasons, but if you mix it into the milk and put it back in the bottle you can't tell. At this point every extra calorie is a bonus, so if she's just having cereal in the morning I'd try that.

It is such a hard situation. Understanding that it was a part of our child neurodivergence did help - especially when I started to research how common this is. If she is neurodivergent then bargaining and other such things that can work with neurotypical brains - become a lot harder and the approach sometimes needs to be different.
with the drinks, she didn’t drink a whole one at first, we used mini glasses to begin with - so she felt a sense of accomplishment when it was empty. It took weeks of them just being in the kitchen before she felt brave / comfortable enough to even try one.
The driver for our child wasn’t a fear of calories, so I don’t have advice, just experience. For us it was part of burnout and a period of crisis.
school slipped right down our list of priorities, it was a lightbulb moment (albeit not a moment at all and really upsetting and stressful) that reminded us that physical and mental health come before anything.
Our GP was fantastic and still is, so were the ARFID team at our hospital - and that really helped us. What we did do, no matter how scared and frustrated we were - is surround her with gentle love and kindness. We did have to give her some of the facts about lack of nutrition on the body etc, but in a gentle, supportive way.

So true.
When you read up about eating disorders and it says "try to encourage them to eat x,y,z x times per day etc etc" how? She is absolutely rigid in her views. She always has been with everything throughout her life and the eating disorder and lack of eating is supposed to contribute to a rigid mindset...so that on top of an already rigid mindset is virtually impossible to get through to her.

I totally get that. My dd has a lot of demand avoidance. And yes, it’s very common to be ND and have an eating disorder. We had a hell of a job to get her onto 3 meals and 3 snacks. Almost 2 years ago, we put our holiday on the line 2 days before we went. And we meant it. Dd complied. It was a big risk. But this was to save her life. Her rigid rule was eat once a day and not before 8pm. That was hard to crack.

i think this

can she make her own meal plans for a start, giving her control

I don't have an eating disorder so I am not soaking from experience there. But I am someone who can eat nothing up until mid afternoon if I'm not in the mood.
My take from that is if you can get the right number of calories in her later in the day then don't stress too much about breakfast and lunch if they are particular triggers for her at the moment.

Our daughter came home for lunch with me for a few weeks, or we had lunch in the park. I got signed off work by the doctor for a month, and then did a phased return which helped. My work were incredibly supportive. After about half a term, she then started having lunch in the office of one of the safeguarding team which worked well. It’s a large London state school. They were great and were prepared to offer whatever support they could manage. It’s worth asking.

When DD was really unwell with her ED, we kept her off school with a letter from the GP. If she's stressed at school, that's really not helping her. She had 6 weeks off initially, and then we did a phased return missing things like PE and meeting her for lunch in the car so she didn't have to eat in front of her friends.

I agree that in the short term, it is important to get calories into her asap. However, to actually regain the weight, she will need to eat regularly throughout the day. Someone, who has lost a significant amount of weight and suffering from an eating disorder does not have the same calorie / energy requirements of someone, who has not. Therefore the amount required to put on weight far exceeds what the average teen her age should eat. If not eating regularly throughout the day, the only way to restore weight will be to eat an unordinarily large amount of food ie binge. And this can lead to a binge or binge / restrict eating disorder. Binging can also lead to purging.

Completely agree @Mummyoflittledragon
I was just thinking in the short term to reduce pressure enough to be able to move on.

Oh yes, I totally agree with you there @BecauseofyouIlearntnottotrust . This is what we did with my dd initially. She ate a particular meal every day at 8pm and that was that. So I very slowly increased the quantity of food by an imperceptible amount and used all sorts of tricks to get dd to eat more. I managed to increase it from about 500 to 800 calories that way. Then tackled lunch…

We tried that yesterday and her meal plan would consist of diet coke, boiled egg and 10 calorie jelly. At the moment we are negotiating any other stuff on top of that.

Thanks that may be what our plan will end up being. It's all uncertain at the moment whilst we await our appointment with the Eating Disorder team. I do worry so much of how supportive work will be.

@CuppaTandBicky has the GP
put in an urgent referral? We all
know the service is overstretched, but you getting support earlier rather than later is really helpful.

Yeah I assume they did it urgent as the team were in touch to arrange an appointment the same day. We have to wait two weeks for the appointment but that's not as long as I was expecting to be honest (I guess we all now have pretty low expectations of the NHS!)

Still unsure how school is going to work going forward. Half term is coming up which is a relief!

You really need proper support from an eating disorder team asap. You have to take control of what she’s eating and she needs to be eating regularly, ideally 3 meals plus snacks per day. She needs absolutely loads of calories to start to recover. It’s not easy. I’m really sorry you are going through this. You might want to join the ongoing thread for parents of teens with eating disorders.

Sorry OP I see you are waiting for your referral. I hope they contact you soon. While we were waiting for our assessment I found the Eva Musby book incredibly helpful while we were coping on our own, completely clueless and terrified https://amzn.eu/d/037Yg4vT

Thankyou. I will join.

Is this just if they're underweight? She isn't actually technically underweight at the moment. Obviously with what she is having currently she will still be losing weight, but our aim is always to get her to just eat a "normal" amount as she would be medically ok at the weight she is at (just not any lower!)

Sorry for my ignorance I'm new to all this!

Diet drinks are an absolute no no. It will fill her with no calories, you need to get anything ‘diet’ or low calorie out of the house

if shes 88 percent weight to height unless she’s always followed a very low weight, she would be identified as underweight by the ED team.

@CuppaTandBicky A teen with an eating disorder can become seriously medically compromised long before they look underweight. Skipping regular meals can slow heart rate, disrupt brain function and hormones, weaken bones, damage growth and development, and push the body into starvation mode incredibly quickly even when weight appears “normal.” I am sorry to scare you but this can become dangerous really quickly, which is why consistent meals and adequate calories are considered medically necessary, not optional.
I am not an expert but I have been through this with my own daughter and I know how quickly they can spiral if you don’t act fast. Feel free to DM me. In the meantime I’ll link that thread.

https://www.mumsnet.com/talk/eating_disorders/5334326-support-thread-14-for-parents-of-young-people-with-an-eating-disorder?utm_campaign=thread&utm_medium=app_share

Ok thanks. It's so confusing as the GP said she was on the 50th centile but when I put her weight and height into chat GPT to work out the weight height percentage that's what it said. The GP used the same chart as is in the red books we get when they are babies.

She looks visibly thin, has always looked tall and slim.

Weight for height used to be alien to me, and now I know far more than I ever wanted to. It’s good you have the red book, take it with you to the ED appointment. Most will be asked to get back to at least 100 percent weight to height.

GP’s as helpful as they someone’s are aren’t experts and can often make things worse by saying the wrong thing. Your daughter hearing she’s ok could be an issue for many reasons, she may not wish to be an ok weight and she may react to hearing that. I really hope the ED team are in touch soon. You do need to GP to push for an appointment.