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....

I don’t think anyone at school will be able to supervise her eating. As suggested, it would be better for you to sit in the car with her and encourage her to eat, away from prying eyes at school.

According to my fds the majority of 14 and 15 yesrbolds have esting disorders at least to some degree

Sorry if this has already been said, but would she cope with porridge made with cream instead of milk to really ramp the calories up. Animal fat is good to heal the brain. Loads of butter and cheese on mash too. Reduce the veg size if she eats that first. I would also ask the to pre-warn you about PSCHE and science lesson content that talks about healthy eating so you can balance it at home and help her work through her thoughts.

Our school would allow her to miss PE and work in the learning and resource centre and would work with you to find the most comfortable place for her to eat lunch or allow you to pick her up for lunch. Is there anything she would eat, even a small snack. I think sometimes the lack of food in the day increases anxiety throughout the day and makes teatime harder.

Idk what fds stands for. There’s a difference between disordered eating and eating disorders. Disordered eating isn’t uncommon. Eating disorders are a mental illness. The majority of teens do not have ED. https://www.nationaleatingdisorders.org/what-is-the-difference-between-disordered-eating-and-eating-disorders/

My cousin had anorexia as a teen. I would highly suggest that you don't try to hide anything in your daughter's food. For my cousin, at her worst points, this would mean that any food could be tainted with things that would make her fat, so NO food could be touched at all.

I think the idea of seeing if she could do school in the mornings, but picking her up at lunchtime, making sure she eats lunch and then staying home in the afternoon is good. Will mean you can oversee some food being consumed at lunch and also mean that she doesn't need as many calories to get through the day and so her low consumption has less effect maybe. Good luck

One of my friends has a 14-year-old diagnosed with ARFID. They've arranged with the school for him to come home for lunch so he can eat his safe foods there in peace. If that's not possible, could the school arrange a quiet place where your DD could eat a packed lunch? Perhaps you/your DH could sit with her for the first few days until she feels comfortable. Just a thought, it's so difficult to navigate.

I second the Eva Musby book. Don’t wait for CAMHS to start therapy if you are able to- as someone said previously it is a psychological disease, and that needs addressing first real progress.

Well using those definitions, i eould day op's dd has disordered eating rather than an eating disorder.she has been restricting food intake gor a month. That really is not at all unusual in this age group.

Neither of us are qualified to diagnose, especially not over the internet with sparse information.

And some of us have extensive personal experience of being around and / supporting loved ones with ED or have suffered from ED, to know that this is more serious than the sort of eating a lot of teens dabble in.

And whether or not a person gets mentally from restriction is is a genetic lottery. For example, some people can go on a crash diet and be fine. Others will become mentally unwell.

It's common for teens to think theyre fat and put themselves on diets, which will include days where they don't have anywhere near enough food. I've done that myself. It's stupid but we get over it.

This is not that. This is much deeper and the physical and mental changes are rapid and highly noticeable.

@CuppaTandBicky we totally understand and believe you and are really glad you’re recognising that. As you can see on this thread, people don’t always understand the complexity of an eating disorder and the help needed to recover.

I am glad you started this thread and that you are seeking the hell your daughter needs. You sound like a great Mum xx

For my child, it involved sitting at the table and repeating ‘you eat it here, or eat it in hospital. Not eating it is no longer an option’. She knew that refusing the meal or snack meant a&e and admission. It took a long time to get to that though and until admission was on the cards, I couldn’t make her eat. She ended up on an inpatient regime and bed rest at home as a last ditch attempt to avoid admission.

I think you’re doing well, until you see the ED service. But her intake is still very low. Even an initial meal plan would need to double that.

Psychological therapy generally comes after weight restoration. That is because the brain can’t respond when starving or underweight. It is likely that she will need to establish normal eating and gain weight before therapy is offered. In our ED service, therapy stops of weight drops below 90%, and if didn’t start until she reached 100% wfh.

A pp is right that there is some dangerous advice on this thread!

I do think you might need to be realistic and think about needing time off work. I had six months off during the refeeding process (unpaid!) and then went back on very reduced hours. I ended up stopping work completely but that’s another story. I don’t see how anyone could work during refeeding though, it was 24/7 and we were pretty much round the clock nursing care at home.

You are absolutely right, and unfortunately there is a huge lack of understanding out there, which leads to dismissive and trivialising advice.

Ours said no way were they supervising or doing anything. So would manage your expectations unless maybe it’s a private school.

I was allowed to go in to supervise lunch. This so horrified dd then year 11 she agreed to eat lunch witnessed by her sensible friend who would text me if she didn’t eat it.

Make a nuisance of yourself in chasing the referral. Keep checking. We have had so many incidences of referrals going missing, not being accepted and nobody lets us know, etc. Keep chasing.

@CuppaTandBickywhereabouts in the country are you? I think the ED services can vary wildly. We were very lucky. Hope you can get good professional support very soon.

Thankyou that's all so helpful to know.
I hope your child is doing ok?

It's a very fine balance. I have been saying similar things at mealtimes but also I don't want to scare her too much about the assessment with the ED team incase she refuses to go thinking they might admit her etc. Such a fine balance and tricky to know what to do for the best.

I have been reading up on the things suggested on here though and all really helpful.

Is it normal to still kind of expect/hope you will wake up one day and they'll be suddenly completely back to normal and ask for a croissant for breakfast or have I gone insane?

Absolutely have hope. Many of us are only on here to give advice. We have been where you are and now try not to lol too excited when they ask for take away for Friday night dinner.

I think you’re doing the right thing about the assessment. Has the ED team been in touch?

You just have to find the motivation that works for your particular child. Dd is NT and very sociable a harsh jolt from professionals and us that if she carried on not eating she could forget her fun life and would have to stay back a school year was horrifying enough to get her to cooperate. Cruel to be kind I’m afraid.

We also went in hard with the musby magic plate method. A year on she is thriving albeit low end of healthy bmi. But no weirdness and her routine is so engrained she comes in and has her snack unprompted (sourdough toast or bagel and avocado no rice cake nonsense) whether hungry or not. Then dinner with us without fuss. Hope you get the same outcome - good luck xx

@CuppaTandBicky you absolutely can hope! Being realistic it won’t happen overnight. Watching our daughter recover was a bit like watching a plant grow. You don’t necessarily notice it day to day but then realise how much it has changed over a week or a month. And with ED recovery the progress is not linear, it can be very very bumpy. We were in the thick of it just over 2 years ago. It was the move to y10 that seemed to trigger it. My daughter was eating under 500 calories a day, her hair was falling out, her period had stopped and she was constantly freezing. 2 years later she is fully recovered, happy and thriving. It almost feels like a bad dream. I do still get a weird feeling of gratitude when she bursts in and asks what’s for dinner. There were times when I thought she would never again say she was hungry, when she was sobbing for an hour over a rice cake and cream cheese. There are a couple of names on this chat that I remember from posting here all that time ago, and I’m really grateful for their support. This forum was a huge help, but you do have to be careful where you take advice from. The earlier linked thread is good.

Definitely haven’t gone insane! I did spend a while hoping she would just pick up. She is ok though, she was at the point of admission with a scarily low body weight and unable to walk upstairs unsupported, but she has been at target weight for almost 2 years now and is much more independent, hoping to return to mainstream education for sixth form in September. It is hideous for a while but recovery is very possible.

That's great news. I bet you couldn't imagine that at one point.

Thanks so much this gives us so much hope. I hope after this we never see a rice cake again!!!

Sorry bit late to this one! Just to say the Teenage ED thread has moved on to here, as the old one has filled up, if you want to join
www.mumsnet.com/talk/eating_disorders/5528988-support-thread-15-for-parents-of-young-people-with-an-eating-disorder?utm_campaign=thread&utm_medium=share

Yeah there are certain things now that we don’t have in the house because they remind us of the recovery. I used to make these little date and peanut balls for her. Never again. And one of her first ‘safe’ full meals was salmon, sweet potato and asparagus. I think if I put that on the table now, my other daughter would burst into tears!
We tackled food by making a list of fear foods and she had to introduce a new one every couple of days. We made the list together, and I insisted on certain things going on there… pasta, chips etc.. She got to choose the order in which she tackled them.
Also a list of eating situations… picnic in the park, tea and cake with a close friend, lunch at granny’s house, a bowl of chips at the pub. It was really difficult for her but we slowly ticked them off, and then repeating them helps rewire the brain for it to be normal again.
We were lucky in that, although she was very unwell, she desperately wanted to recover, so was reasonably compliant. The distress it caused her was heartbreaking.