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....

Six hours in itself isn't an issue. If you can get a yfood milkshake into her before and after returning from school that's 1000kcal straight off. And then high calorie food from then on e.g. soup with butter and cheese in it if she doesn't want a proper meal.

At the minute she won't have anything with any decent amount of.cals until much later on in the day and that's only small amounts at a time. I can just about get her to agree to have a bowl of cereal with milk in a morning. Just worried that she will struggle to focus and concentrate etc, especially PE

At this point, if there is someone available to be at home with her, I would ask school to support a p/t timetable. She could take work to do at home for either the morning or adternoon session (maybe depending on which subjects she needs to be there for,)
and the family can support her eating in a properly nurturing environment. Unfortunately, ime, large secondary schools find communication amongst staff too complex and fragile pupils can find their situation is made worse by a careless comment by someone who isn't 'in the loop'.

Goodness. I do feel for you trying to support your DD and navigate these types of tricky situation.

We had problems with DS self harming and suicidal when he was 14-15yrs due to being bullied at school. It took months before we found out actual details and who was responsible and I when I did, I had words with this kid’s parents and it stopped immediately. (It was initially reported to school but they were not much use at dealing with it or providing useful advice, to be honest.)

Do you know what triggered her illness? Just wondering if attending school will make it worse?
Sending you solidarity.

Thanks. I have considered this.

It's so hard to know what to do for the best at this stage as we have had no advice other than what to look out for if it becomes an emergency. I'm torn between giving her some normality and wanting to keep a close eye on her 24/7!!

She is managing 600-900 kals per day with us persuading, negotiating etc...

Thankyou.
It was triggered by something that happened at school, but not bullying or anything, cutting a long story short it was basically her noticing someone in PE who was skinny.

It’s good you’ve reached out for help.

Has she lost a lot of weight? Does she enjoy school?

From other threads it seems some schools are very helpful and others aren’t at all.

If you want to, it often helps to know what year she is in. Often Y10 seems a year lots of girls struggle in.

She has visibly lost weight, looks skinny and pale, but we didn't know what she weighed before this so have no base line.

Her weight is currently within normal range which I was surprised about. Her BMI is 17 but the GP explained about BMI not being applicable in children.

She will be in y10 in September so soon to be in an important year.

The ED team use weight to height as a percentage. I can explain how to work it out but if you ask chat gpt you may find it easier.

Has your GP referred you?

I think if she is more likely to eat more later in the day then work around that, can she leave school an hour earlier for example and then use that time later in the day to support her intake.

once you are under the eating disorder service they will recommend what should happen at school. That could be not attending if her weight for height is below a certain level.

in the meantime, it really depends in what her triggers are. Things you could ask for are supervised eating with a teacher to make sure she eats. Going home for supervised lunchtime. Supervised snacks. As it’s exam season, rest breaks/special consideration for exam (which might feed into predicted grades) should also be discussed.

Thanks that's really helpful. As I say we are really early days. I knew she was cutting out eating between meals and I was starting to get concerned...but I only just found out she was also not eating any meals at all and was disposing of them. This has only been happening for a month so I'm hoping we have caught it early.

The GP wanted to monitor things before referring her, and to wait for the results of her blood tests which I do understand...but since I found out and obviously we have been with her when she eats and not allowing her to be sneaky... We have realised we are out of our depth here and we need help. Been in touch with the charity Beat but they didn't help much.

Chat GPT says 88%.

I would ask that she is excused from PE - she’s not eating enough so should rest then instead. You will be advised to give her 3 meals a day plus snacks. Can you go in at lunch time and sit in the car as she eats something? I have heard of schools sometimes having someone supervise eating but that is rare, usually the parents have to come in. Good luck, we went through this when my SD was 16 -18, it was a long difficult road.

Thankyou for your advice. I was wondering what the chances of someone supervising her at lunch were, and not holding out much hope. I also honestly do not know how anyone would get her to eat at the moment. Especially a teacher.
This is going to be very tricky as I work full time!

Great advice from ideal.

I’m a teacher and have a taught only a few students that I know of with ED over the last 25 years or so. It’s really tricky. As a parent I’d really want to see an improvement before she went back. Is she asking to go back? I would say also it depends int he person who supports in school- some are great and some are just not great. They are not medically trained in any way. The best they could hope for is some input from the school nurses so be clear what you want to happen and what support you DD will need and how that is to be accessed. I think for me I’d want half days for the foreseeable. I’d want a plan for the exams too coming up. How does she get to and from school?

Yeah I totally understand school aren't in a position where they can keep a very close eye on her or provide any medical assistance. She thinks she's fine to go back and thinks she will be ok. Of course if she had the option to be off school she would be happy to be off. She isn't a massive fan of school but is in denial that her food restriction is actually having any medical impact.

She can't do PE. She isn't eating enough to be burning any additional calories safely.
Are you working ? She could do a part time timetable. You could pick her up at lunch and ensure she eats something. Or she could start late so she's had time to eat. If she is going to be at school for lunch, she could spend time with her friends at lunch time and then have an extended lunch so she can eat away from her friends- at my school we would supervise this.
Cognitively, low calorie intake will have an effect. Reduced workload eg homework etc might be appropriate.

Speak to the school nurse team too who can meet with key pastoral staff and make a plan.

Thanks to all for your help. I'm really grateful.

I would also possibly not send her tomorrow. There needs to be a plan in place. She sounds to be really struggling and going to school and not eating isn’t going to help.

We totally get how daunting this is for you. We are here to offer advice. It’s not easy for you, if she isn’t eating I think the GO should refer her. They will decide what helps she needs. The GP can’t really offer support like the ED team can. At least now you have her weight so you can see if she loses any etc. You’ve done really well so far xx

Our school required a doctor to sign out of PE. We never had to for eating, but for other issues.

how badly does your family need you or the other parent working full time? One thing that has made helping our dd much easier is being able to make a parent available and just bypass the school.

Unfortunately one of us not working would not be an option anymore. Possibly before the mortgage rates and bills went up we could just about manage if we cut back a lot, but not now.

High pressure job too so its going to be very tough if this escalates.

I really feel for all those who have been through or are going through this.

This is a very hard situation to be in, as a parent of a child with ARFID and AuDHD - during burnout we watched her almost fade away and it was heartbreaking. We found that the more we pushed the less she ate, so it was little and often, grazing as much as possible. Sometimes it would be one strawberry cut into quarters in one bowl, a marshmallow in another and a couple of almonds in another (we bought fancy tiny bowls so it looked nice) and she quite likes having these, and ever so slowly over a huge amount of time, her appetite began to return. The GP gave us special drinks full of calories and all vitamins - these worked well, she liked them best with loads of ice - it tastes like a chocolate milkshake. She still struggles in the mornings,

Thankyou so much for the advice. I do suspect my daughter may also have AuDHD. She certainly ticks a lot of the boxes, and has always had a very very narrow amount of foods she liked, but thankfully the quantity she eats of the food she likes has been normal.... until now.

The shakes sound like a good idea although at the moment she is following me in to the kitchen and checking calories on things.

We have been doing similar things, like boiling an egg and slicing it up and putting in a tiny bowl. It sounds daft but what a relief when that egg has been eaten! I may buy some little fancy bowls tomorrow. Hey I'll try anything!!

When I have suggested small amounts of sweets/choc etc she has refused, saying if she has a little bit she knows she won't be able to stop.

It's difficult. I feel for you too. It must feel like your whole life revolves around the amount of food you've seen your child eat! Stressful!

Your dd absolutely must not do PE anymore. It isn’t medically safe for her to do that and you will get a doctor’s note if needed. But until then, if the school is insisting she participates, you need to tell them they are putting her at medical risk and you’re sure they don’t want to do that. She is seriously restricting her food intake and 600-900 calories is dangerously low. I get it, I really do.

As for eating in general, it looks as if your dd would be happy not to go to school unfortunately so you can’t use going in as bargaining tool. With my dd, I met with the HOY, then dd joined the meeting and got her to agree to eat a sandwich at lunchtime. I would then check the school account and collect her if she didn’t buy one. Dd later told me she only ate one of the two and she didn’t eat the crust. But it was a symbolic something.

As for eating in general, we were told the rule needs to be dd doesn’t leave the house until she’s eaten something.

As for your dd and chocolate / sweets, right now all food is food. You can tell her it is ok to honour her hunger. If she’s hungry, it is ok to eat the chocolate. The only thing I would be concerned about though is that she’s already voicing guilt around certain food groups, so I would be wary of purging, especially if she eats a lot all in one go, which is why the gold standard treatment for ED is 3 meals and 3 snacks. The way round that is to stay with her for half an hour after she’s eaten.