Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

@Mummyoflittledragon I’ve sent you a message. 🎉

Finally!! 😄

@Mummyoflittledragon the email is the letters and numbers(@gmail.com) at the end. Not sure if it was clear or not in my dm
there are no brackets in the address

@Curlyhairedassasin How's it going? Thinking of you

Thanks for asking @NanFlanders. the short and long is: I don't really know. She is managing some of her meals orally but there is no improvement in the number of meals/snacks she is having (usually about half), the rest is via NG tube. Maybe I am too impatient but I would have thought that within 10 days, we see a little progress but there is absolutely nothing. She is still on the general ward. They are holding off referring to tier 4. They hinted she may be on the general ward a long time. Tbh, I am not coping that well esp with the practicalities. I worked the last 2 weeks from the ward but will have to go a few days a week back to the office now. DH is actually pulling his weight now but his work isn't suitable for remote working, we have DD1 who needs someone with her when she isn't in school. I have a few appointments next week so combined with going back to my office, DD will spend most of the week all by herself in a single room on the ward. Nobody is setting school work (she used to be in a PRU but still on roll in mainstream) but now the PRU and mainstream are pointing fingers at each other as to who is responsible. We are caught in the middle with no education anymore at all. Her EHCP should have been finalised by now but the LA is stalling and incommunicado. It's all such a mess and so many people involved at various fronts. I cannot see the wood for the trees really and don't know where to push and for what (or even if - maybe we just need to sit back and wait a bit more patiently). We are having another MDT next week. I know she is finding the NG tube and the lack of control really hard. Tbh, I just want her in tier 4 to take the weight off us but I know it doesn't work that way. The team are saying they are happy that she is eating some meals.

I am sorry there’s no improvement with your dd @Curlyhairedassasin. Would your dd be eligible to attend hospital school?

@Mummyoflittledragon there isn't a one where we are.

Curly can you get signed off with stress for a bit? I think trying to work and juggle all the other stuff is actually impossible. I can’t believe they’ve not referred her to a tier 4 😡 who on earth not? She should have been referred a year ago and maybe you wouldn’t be in this situation now! I’m not sure what they’re waiting for?!

@Girliefriendlikespuppies they are waiting to see if she improves on the general ward. I dont understand it either. She clearly isn't. They seem to be reasonably happy with the way things are going. I feel like they are in a parallel universe. Sick note not an option for various reasons. I can cope somehow.

@Curlyhairedassasin I'm glad your DH is stepping up. The work sounds like an extra pressure though. I also tried to keep it going from the ward, but I did have t get signed off with stress for four months. - would that be an option? I mean, you MUST be stressed. (I know that I was relatively lucky that my employer had pretty good sick leave policies).

Ah. Sorry - cross posted with your post about sick pay. Hopefully you are getting all you are entitled to with Pip?. Your situation does sound infuriating. Apparently the best predictor of whether someone will improve in the community is whether they make progress in the first few weeks - yet they persisted with my DD for 18 months of going in and out of hospital with her mental health getting worse and worse. I hope you either get a turnaround or a referral soon.

We have been doing this crap for 2.5 years now @NanFlanders :( She gets DLA but it's not a lot and certainly not enough to enable me to give up work. I am already only part time on a low wage. But DLA helps a bit with all the extra costs. I think things will come to a head soon, and either she will come home or move to tier 4 at some point so the current problem of having to support her in a general ward will go away (if that makes sense). Just hanging in there really until that point.

@Curlyhairedassasin You've done amazingly. I can't believe this hasn't been escalated sooner. (Hope that my post didn't come over as suggesting you could live on PiP/DLA. I know it's nowhere near enough. I just know that we didn't even find out about it until months and months in, when there are huge costs associated with all this).

@NanFlanders I didn't understand it like that. I know a lot of people aren't aware of DLA/PIP. I also keep pointing it out to others. ☺️

Hi, just been catching up on the thread - I used to post on here about my DS (with ASD) under a different name but I deleted my MN account and stepped away for a while.
My thoughts are with everyone struggling.

DS has been discharged from CAMHS due to lack of engagement. I was told (in front of DS) that as he is 17 he can make his own choices and the fact I disagree with his choices is irrelevant. I raised the issue of capacity - they asked DS if he understood the meaning of the word ‘discharge’ he told them he did not. They told him it meant no more CAMHS, DS said great. They then said that showed he has capacity! WTF?

He’s eating around 1200-1500 calories a day and is very slowly gaining weight. He will only drink 660mls a day. His latest weight (although he did refuse to remove his large dressing gown) puts him at 79% wfh up from 72% at his lowest.

He still refuses any form of medication - even vitamins which were prescribed as his bloods showed deficiencies. He doesn’t attend college at all, I’ve requested an emergency review of his EHCP but have heard nothing - every time I chase it I’m told someone will get back to me within 3 working days but they never do.

His life is basically sitting alone in his bedroom doing nothing - I feel like he’s just been written off. There’s no help, no support. And I’m supposed to just leave him to it as this is how he’s chosen to live his life?

They see it won’t engage. I see it as can’t engage. To me that’s an important difference.

I remember your previous posts @SmokeyPink and I am really sorry that you are still not getting the help you need. For the last two years @myrtleWilson and I have gone to the #DumpTheScales march in London to argue for better treatment for EDs. If anyone would like to attend the 2025 march on 21 June, please do DM me. It would be great to see you.

I struggle with crowds but I would be interested in joining the #DumpTheScales march if I feel confident enough. At the risk of outing myself I do happen to know an MP - I might be able to persuade them to get involved

@SmokeyPink Brilliant. I'll DM you. My DD is hoping to join this time for the first time: happily she is no doing well now, but her experience of adult services was woeful.

@SmokeyPink i remember your posts too and I am so sorry that you are still not getting effective help. It was very much the same for us, being discharged because of lack of engagement when really the problem was that the help an offer was not ASD friendly. I don’t know what to suggest except to keep trying and to reach out to Jenny Langley who was most helpful to me and others on this thread. She runs a workshop on autism and eating disorders from time to time so it’s worth looking that up too.
@Curlyhairedassasin it sounds to me as though your daughter is doing as well as she can under the circumstances. I know it would be better if she was having all her meals normally but the fact that she’s having half of them is a big improvement from where she was a couple of weeks ago. I have been told time and time again that I need to adjust my expectations as I always tend to be ahead of where my daughter is. Possibly, she is doing. the maximum she can at present given how everything is stacked against her, especially school, which is so important to her. I would be trying to find some form of tutoring for her. Have you spoken to your MP? The governors of her previous school, the PRU. Her ED team. I would be shouting from the rooftops that she needs education as a form of motivation to engage with recovery. Without her education, everything is impossibly hard for her. It is so unfair that we have to fight so hard for our children with this illness.
@NanFlanders @myrtleWilson I will join you this year on the march. X

@Curlyhairedassasin I do hope there will be progress this week . Mine was on a general ward for two weeks before a decision was made to look at a tier 4 referral. Then things moved quickly. It felt like box ticking though as, frankly, she was not going to eat but needed to ‘prove’ it in a general hospital.

On school, I think there is an entitlement to education once a child has been in hospital for two weeks or is likely to be in hospital for two weeks. It depends which part of the UK you are in though.

@SmokeyPink it makes me mad that services treat our young people as if they won’t engage when they can’t engage or are ambivalent about treatment as a feature of the disease. No advice other than stay strong. He has a right to good treatment and education. Just like any other child.

I have a meeting with school tomorrow about DD to discuss support for her. She was diagnosed with atypical anorexia a couple of weeks ago. What sorts of things has your school done to support your child? Any thoughts/suggestions would be really helpful to hear.

@SupportWantedPlease Sorry you find yourself here - but welcome! I assume by 'atypical' anorexia, you mean that she is not (yet) underweight, but is restricting and showing other anorexic behaviours. To get the best chance of turning this around before her health is further affected, I'd say the most important thing is to ensure that your DD is eating sufficiently. Some schools offer supervision at lunch. If not, could you or her dad go in and ensure she is eating - or wait outside in the car.

In terms of exams, my DD got extra time and breaks because of her physical weakness and intrusive thoughts - her psychologist wrote a very helpful letter.

If she does become underweight, then she will need to stop PE.

What other support are you getting? Are you under an ED team? Also, I'd suggest you look at the BEAT and FEAST websites.

Hi school can arrange a quiet room with a staff member to monitor your dds eating her lunch, this is in an ideal world and a lot of schools will refuse to do this unfortunately.

Depending on your dds weight I’d say no PE until there’s been consistent weight gain.

I thought atypical anorexia was weight loss but not linked to wanting to be thin?

Hi @SupportWantedPlease. Welcome if that’s the right terminology. Depending on your dd’s personality, she may seek support and advice so it would be useful if the school knows who that person may be - your dd may have already talked to them. And if your dd is aware you’re speaking to the school, the DSL or other figure could touch base with her and say they’re there if she needs support from them or another teacher. Anyone approaching her shouldn’t talk about her eating as she may be in denial or get upset so the DSL / teacher would just say they’re there for a chat if she needs anything.

As for anything else, she should stop PE and if possible for her to be monitored at lunch time and break if possible to see how much she is eating either by you or the school. The school may not be able to offer this. Is she purging? Because if she is, that’s something the school would struggle to monitor.

As for atypical anorexia @Girliefriendlikespuppies that’s what I thought a while back. But it’s someone, who has previously been overweight and may be within ‘normal’ weight parameters but because of the rapidity of weight loss, their current weight is just as dangerous as a low bmi / WFH, periods have probably stopped etc.

@NanFlanders yes, she’s not yet underweight, but is definitely restricting and has anorexic behaviours. She will likely be underweight in the near future at this rate. She’s under an ED team, yes, but had her initial evaluation so far - that was about a month ago. She’s adamant that she doesn’t want supervision at lunch, and so far I’ve suggested this is the ‘next step’ if she doesn’t eat her evening meal. This 'stick' has helped a bit, but it's also been v distressing so not sure. I’ll see if school can potentially offer this if she’s lost weight at her next appointment (likely). Plus, discuss possibility of stopping P.E.

@Girliefriendlikespuppies just not underweight (YET) but exhibiting the same anorexia behaviour. Also, her periods have stopped, she’s pale as anything, cold hands/dizzy etc.

@Mummyoflittledragon thanks also for posting on my thread. She has purged (3 times total, I think) but I don't believe she'd do it in school as there's no way she can't make it obvious what's going on. It's not a private environment really and her school is extremely busy.