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Eating disorders

Teen Eating Disorders - Thread 6

1000 replies

myrtleWilson · 03/02/2022 23:06

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!







OP posts:
threestars · 07/03/2022 21:48

Thank you for the advice. Plenty to think about.

Good news about the ice cream. It's a step past the fear.

Yes, I guess DD wants to keep it secret so her friends aren't telling her to eat. Work is aware and is very accommodating and one colleague has been through similar with her daughter.
Weigh in and appointment tomorrow so I'll ask about next steps if there's no progress. (After the distress after I asked her to eat some Greek salad(!!) with her toast and houmous yesterday, I'm not holding out for much progress.)

Girliefriendlikespuppies · 07/03/2022 22:04

Tbh threestars you'll get the same distress if it's salad or biscuits ime so you might as well go for the higher calorie option. She has to eat, stand your ground.

The quicker you can get the weight on the better chance you have of getting your dd back. The quickest way to get the weight back on is by making every mouthful count.

The distress is completely normal, my dd used to bang her head on the wall, scratched her arms and use elastic bands to tourniquet her arm 😥 it's awful but normal. You have to push past it, if you don't believe they can manage their anxiety there's no hope of them believing they can.

Ask the team about school, she doesn't sound well enough to be there.

Are you on the fb page? There's lots of useful resources on there.

threestars · 07/03/2022 22:19

Thanks @Girliefriendlikespuppies , that makes sense.
Is this the normal Mumsnet fb or something else? M

Girliefriendlikespuppies · 07/03/2022 22:58

It's a fb group EDSUK, this one...

Teen Eating Disorders - Thread 6
threestars · 07/03/2022 23:45

Thank you 👍

myrtleWilson · 08/03/2022 18:09

Just popping by as saw Ro Recovering had a new YT video out including announcement she's moved out of home. Some of what she said definitely resonated with feelings/comments that DD has said - that home was a safe haven, with supportive parents and yet that safe haven can be almost smothering because the home represents you at your most ill and can almost 'hold' you in that space. DD (and Ro) have mentioned their bedrooms triggering anorexic thoughts insofar as they see the space where they would compulsively exercise and a little voice whispers "go on..."
Anyhow, thought I'd share in case of use for those in/edging towards recovery about how to think about transitioning the home space away from 'overly' safe haven - practical changes could be to redecorate a bedroom or rearrange lay out etc.

That sense of needing to redefine who they are and crucially for others and places/spaces to adapt to the redefinition seems to be a strong element of recovery.

Sending love!

OP posts:
Girliefriendlikespuppies · 08/03/2022 20:47

I have a dilemma re dd, she's asked about joining the army cadets. She has two friends that do it hence her interest.

It's for two hours twice a week and will I assume involve a lot of exercise. When I spoke to dd about it and said well you'll need extra food if you're going to do that it was a flat no.

It just feels so rubbish as I think something like this could be really good for her but the ED just holds her back 🙁

I don't know whether to let her try it and see or stand firm that she can only do it if she eats more...

myrtleWilson · 08/03/2022 20:56

To be honest @Girliefriendlikespuppies I'd say yes. This could be a big opportunity for her recovery -she'll see people doing hard/physical activity and re-fuelling (or fuelling in advance for it).She'll hopefully see how a body can be strong and do good. It could be an amazing re-set for her. I completely understand your fears (see my post a few days ago about my recognition that my trauma shaped decision making process was actually holding DD back). You'll see soon enough if its not a positive move for her - but I totally get your hesitation - it does take a leap of faith

OP posts:
cantthinkofabetterusername · 09/03/2022 06:22

Morning all
@Girliefriendlikespuppies I agree maybe it could be a good thing for her, I understand your dilemma though.
We've had a rough few days with dd, she's mostly sticking to the eating plan of breakfast and evening meal but the anger has started. She's not coping well in school with regular breakdowns and refusing to go to lessons.
Last night she said she's not going to school today, we'll see if she does but I'm working today so don't want her home alone and can't really take today off. I searched her room yesterday and found scissors and razor blades

Girliefriendlikespuppies · 09/03/2022 08:58

Oh God can't that sounds hard, can you get signed off work for a bit? It might be that some time out of school and just focusing on 3 plus 3 is what's needed for a few weeks. I had to take two lots of time off work to get dd started and then again when she went backwards.

It's worth remembering that ED have a similar (and in fact worse in some cases) mortality rate to cancer. When I felt guilty about taking time off work I thought well I wouldn't feel bad if it was cancer or any other potentially life threatening illness so why is this any different.

Thanks for the thoughts on cadets, I'm still mulling it over today. It's hard as she is a good weight now and does eat okay most days but there is still no freedom with any of it. She will not eat over her 'normal' amount and still has lots of behaviours such as leaving some food on the plate and having to walk after lunch and dinner.

That said it would be a good opportunity to socialise with her peers and am assuming the emphasis would be on strength and fitness rather than anything to do with looking a certain way.

NanFlanders · 09/03/2022 09:35

Hi all. Just checking in. Interested to hear the debate about army cadets. DD is in navy cadets and was looking forward to some trips away. It's a definite no at the moment, as her heart rate was very low at Monday's review (came out of hospital on Friday). We are currently working on getting 'something' in her at every meal as one of AN's stupid toxic rules is that if she skips a meal or snack one day, she can't have it the next. A new development is exercise. Found out she did >1000 star jumps yesterday. Freaked me out, given the heart condition, but I'm also hoping it hasn't undermined the eating too much, as have a review on Friday, which could result in a 3rd admission. I'm really hoping she can stay out so she can do GCSEs. I'm worried if she can't do them, she'll lose all incentive to recover.

cantthinkofabetterusername · 10/03/2022 07:19

@Girliefriendlikespuppies I think if it continues like this then I'll have to be signed off. She went into school yesterday and had a good day, thankfully school a very supportive.
We're at the ED clinic this morning and she said she wants to go to school afterwards so that's promising

NanFlanders · 14/03/2022 20:41

Hi all. Just saw this on the FB group: It’s a really inspiring story about breaking all the stupid toxic anorexia rules –
Watched with DD and had a really good conversation after. Might be of interest?

Girliefriendlikespuppies · 15/03/2022 20:51

It's quiet on here atm, not sure if that's a good sign or not?!

I watched that video Nan I'm not sure I'll let dd watch it though, also not convinced by the control theory. It may start off as a desire to be in control but anorexia very quickly turns the table so the sufferer is completely out of control.

Things here have been difficult this week, dd has been doing her mocks and her mood has been awful. She's also been talking a lot about wanting to die/wishing she was dead 😢 Has also been SH more, awful scratches all over her wrists and arms.

Food wise she seems to be doing okay, she looks good weight wise (needs new bras as has gone up a size!)

So not sure what's going on, hopefully it's just the pressure of exams bringing her down.

How's everyone else doing?

cantthinkofabetterusername · 16/03/2022 08:25

Difficult week here too. DD is really pushing back with the eating but I'm persevering. Her mood has been quite low this week, we're back at the ED clinic tomorrow morning.
I'm exhausted

NanFlanders · 16/03/2022 11:04

Hi @Girliefriendlikespuppies. Yeah, DD was very keen on the video as it explained to us her thought processes - but i do tend to think those thought processes are biologically driven. And I'm not sure it did her any good to watch it. Sorry to hear about the SH - though weight gain obviously good. Well done on that. Had a pretty horrible weekend - lots of refusals and a few meltdowns (quite a new thing). Another weight loss and heart rate had fallen to 42 at yesterday's hospital appointment.

myrtleWilson · 17/03/2022 21:41

@NanFlanders - a few months before my DD was ready to try recovery she started watching a couple of YouTube/tiktok accounts about ED recovery - she was open with us and we'd often watch together. It felt to me like she was rehearsing recovery - seeing someone a bit further down the line trying it if that makes sense? I remember we talked about it in one of our family therapy sessions. Anyway, one of the accounts is "Ro recovering" - I would recommend it as a watch. She's now 20/21 and is a full year into recovery - her you tube channel starts just over a year ago as she started to go "all in" for recovery - she'd had anorexia since about 14/15. I saw a lot of DD in Ro's videos so found it really helpful, both in terms of seeing what DD was experiencing in someone else but also hearing her parents talk to her etc. I think her channel is really honest about anorexia, about recovery and it really helped me - her first YT video is here if you're ever interested

OP posts:
myrtleWilson · 17/03/2022 21:43

Should also say, I know its not everyone's cup of tea and there are definitely some ED accounts which I think are dodgy but this felt like Dd in another person iyswim?

OP posts:
Boulshired · 17/03/2022 23:03

It is difficult when the anorexia developed as a young teenager to find an inspiration that connects and doesn’t influence in the wrong way. My DD is nineteen, she has managed her GCSES, her A levels, driving license and now away at university. She is an adult but emotional she was stunted at 13 for 3 years. She didn’t restart her puberty until she was over 16. She can only relate to a year at a time and cannot express how her anorexia started or why. Her video inspiration used exercise for recovery, she tried and got addicted to running. Whilst after a blip she is weight restored again she is still very much anorexic. She’s having therapy but she can watch the most inspirational recovered anorexic and find the smallest comment and a new red line (rule) forms and yes she also interprets their story into her own as it’s easier than unpicking hers.

NCTDN · 18/03/2022 05:34

@Boulshired how is she doing at uni? DD will be going in September- just hope she has enough strategies to cope.

Boulshired · 18/03/2022 09:36

She is doing fine, still needs support after a brief restriction period, but she asked for help very quickly. The hardest part as a parent for me was knowing it was not going to be as easy as DD thought but DDs personality is such that I had to stand back. Her motivation for weight restoration was university and living away from home. She did her part of the deal and I have been asked why I let her move away from home but for her I have to let Anorexia be the reason if she didn’t get her dream and not me. I need her to be able to trust me so I can intervene quickly and pick her back up. This is how her personality works. CAMHs signed her off without the promised individual therapy, but she is getting some now. We spent from the end of A level exams till October working on meal/ budget plans and eating in places that a uni student would. FaceTime has been her saviour.

koalacliphugs · 21/03/2022 00:29

Hi everyone, ive lurked on and off this thread for a while but think it's now time to ask for some support.

My DD turned 18 a couple of months ago. She started with bulimia behaviours almost 3 years ago however we didn't pick up on it until a few months later. Took her to the GP who referred to CAMHS and a specialist ED service for adolescents.

She turned 16 shortly after the referral and being taken on board. We took her to weekly appointments and took on board all of the advice, and her behaviour became extremely volatile around that time, plus she started refusing to go to school. Despite the purging, her bloods always returned within normal limits and her weight wasnt worryingly low. We took part in FBT but due to her age she decided she didn't want to take part in this anymore, and this was taken on board. In the eyes of the NHS she was an adult and we couldn't do anything about it. We were having therapy sessions together via the ED service as our relationship had broken down, and she put a stop to that too.

She started refusing to go to her CAMHS appointments, and was eventually discharged from them which left us with no support at all. We struggled on (I am a single parent and her dad is remarried with other children). After a few months she decided to be rereferred back to CAMHS. Bloods still ok, obs all fine etc.

About 9 months ago she began to restrict her food and the weight dropped off rapidly. I begged CAMHS for more support but all that happened was that I was signposted for MH support for myself, and even ended up with the police at my door to check on my well fair after a particularly tearful call to the service.

At the start of the year she was transferred to adult services. They monitored her weekly for 3 weeks then advised her she needed to be admitted to a specialist unit. Que days of her refusing and then begging her until eventually she admitted she did in fact need the help.

Overjoyed is an understatement. I felt that this would be the answer to our prayers and provide the support she so desperately needed. Bloods ok on admission except for raised amylase. BMI 15.something.

Because of her age we weren't getting proper updates when we phoned the ward, or when we were visiting. They needed her permission for everything and sometimes she'd refuse it. She didn't allow permission for us to present at ward rounds via Teams, so we'd often be in the dark as to her progress and the plan. 3 weeks ago it was decided she could have a 4 day pass...I was gobsmacked! The staff had been able to tell us she wasn't ready for it as she'd been struggling but they felt pressured by her and didn't want to risk her discharging herself. Her consultant was on annual leave so I phoned the registrar and explained that as her mother, who knew her best and had watched her health decline for almost 3 years, she wasn't well enough for this. I was told "As her CLINICIAN i feel she's ready for this pass". This was despite the fact that a home pass wasn't on their agenda until my DD started pushing for it and threatening to discharge herself. (As told to me by the charge nurse).

She got home and basically refused to eat. I wfh so can't always monitor her (bearing in mind I had 5 hours notice of her return home for pass and the nature of my job means I can't just take a day off without sufficient notice). I found food hidden in her room and evidence of vomiting. Called the ward for help after 2 days of this, only to be told that they couldn't help as she was an informal patient (not sectioned). Despite being in there for weeks at that point, her MH capacity hadn't been assessed. However I'd argue that someone who would rather die than gain weight (her words) isn't exactly capable of making certain decisions. When she returned to the ward she'd lost almost a kilo (in 4 days).

The following week it was decided she would have a 2 day pass. Again, without any discussion with family. She did eat a little better but then refused to go back. Told again when we called the ward, informal patient so can't help. Eventually, she decided to go back.

5 days ago she decided to discharge herself, and this was allowed. Despite nurses telling me they'd tried all day to convince her not to, that she was making a huge mistake etc etc. She still hadn't had a capacity assessment carried out, so on the absence of this she was allowed to leave.

In the 5 days she's been home she has missed so many meals, hidden food, vomited, went out drinking alcohol and also sacked her social worker because she was putting in support for both households.

The SW had been involved almost since the start due to other reasons (behavioural) so knew our family very well and the entire situation inside our. She specialises in adolescents, however my DD had the power to "sack" her and request an Adult SW instead. We've been told this can take weeks despite an urgent referral.

Basically, I don't know where we go from here. She's under the outpatient adult ED team, however they've said they can only be involved if she is engaging with them. If she doesn't engage then they'll discharge her from their service too, and transfer her to the community MH team. Apparently they're aware of her and will pick up her case immediately.

Tonight she went to her grans for dinner then spent 25 minutes being sick once she returned home. I've been told to let her get on with things. Not to try to force her to eat or stop her being sick. They say she's an adult and it's her own responsibility. But I can't just sit back and watch her decline even further. I have no right to be in appointments. They'll not give me any information without DDs consent, and she's unlikely to give it. I don't know where to turn to for help and support, or how to support DD. I keep thinking I'm going to find her one morning, unresponsive Sad She's around the same weight as she was when admitted to hospital and in exactly the same position....restricting, and what she does eat she's vomiting it back up.

I feel utterly helpless Sad

(I haven't read all of the thread, just dipped in and out over a period of time, so forgive me for not offering advice to anyone. I feel like an utter failure as a mum so I doubt anyone would want my advice anyway Sad).

Havehope21 · 21/03/2022 05:46

Hi @koalacliphugs - I am so sorry that you are here. Firstly, you most certainly are NOT a failure - you must remember that. I would suggest giving Orri a call and explaining your situation - they specialise in over 16s. Although they are private, there might be options for NHS funding. They also have lots of helpful resources for parents and carers (including a vimeo channel and instagram lives).
Remember to take care of yourself too.

Girliefriendlikespuppies · 21/03/2022 15:35

Omg Koa that all sounds horrific and I'm so sorry you've been consistently let down by the professionals.

Are you on the fb page? I think they will be able to advise you better than I can about where to go from here. I personally would take the view of she's living under my roof she will have to eat what I give her - however my dd is only 16 so maybe I'll feel different when she's 18.

It's so frustrating that they didn't section her when she was in hospital, did they give a reason why they didn't do that?

You're definitely not a failure but you have been failed by the services meant to help you 🙁

koalacliphugs · 24/03/2022 23:00

Thank you both for your kind replies.

I'll have a little look at the suggestions you've made. What's the FB page called?

I emailed her team on Monday and got a long response today covering a lot of my points. I was told that the assessment of her capacity is an ongoing one, and that she is being assessed at every appointment with them. They also explained that because of "clinical reasons" observed as an inpatient, she had been allocated 2 key workers instead of 1 but they said that because of confidentiality they couldn't disclose what Sad I know she's 18 but I can't understand why she's being allowed so much control. I don't mean this as a criticism but she's definitely not NT. I have had 3 different clinicians involved in her care point out their thoughts on this but because of other issues such as previous self harming and now the EDs, she was never fully assessed. The suspicion was Aspergers.

She had spent the week at her dads and meant to come back to my house on Saturday. This was part of our initial plan we had made with her specialist nurse and previous SW. Plan was 2 weeks with me and 2 weeks with him in order to give each family respite. (I have anxiety and also about to be assessed for ADHD, and I really struggle to cope with stressful situations...I just crumble. As for at dads house, her younger siblings who are age 7 and 4 were found to be copying her behaviour by playing games of being sick "just like -dd's name-"

Anyway, she has pushed back against this throughout the week, bombarding me with messages to let her stay at mine. Today she messaged asking if she could come over to see me for a couple of hours then go back to dads later. Her gran dropped her round but only after stopping off at Costa for a huge cup of flavoured coffee and a muffin. Plus a box of fudge. Hmm Unknown to me at the time. While I was working downstairs she binged the lot and I heard her throwing up. She wouldn't let me in the toilet as it was locked, and she stayed there for almost an hour throwing up Sad She'd basically taken advantage of her gran's caring (but really quite naive) nature, and also me by coming here to vomit as her dad is a bit stricter. I spent about 40 minutes scrubbing the toilet, floor, walls and radiator. She'd also left her toothbrush lying which was covered in vomit. Plus she'd blocked the toilet with a tonne of toilet roll and food Sad I feel at breaking point.

I don't know how others are being managed in the community but she'll be seen once weekly for an hour (in what the call "intensive treatment" Confused) and at last week's appointment she was apparently asked to write a letter to her eating disorder. I just feel it's not intensive enough.

Spoke with her dad and she's barely eaten all week. She looked more gaunt when I saw her today. And selfishly, I feel as though my respite has been shattered. My nerves are jangling and I've had to take a few propranolol to settle myself again.

Sorry for the massive rant Sad

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