Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

@magnummum my D went to a private inpatient that the NHS funded however only for 4 days as it became clear that her autism meant it was more damaging and she has proven she is better at recovering at home so after probably the worst 4 days ever she came home. Although if it was not for her Austism I do think I would have been very good all the nurses and doctors were very nice and seemed well trained on how to coach though meals, it was very strict though so many rules some seemed absurd to me if I’m honest and also a lot of time doing nothing.

@Girliefriendlikespuppies I believe it stands for eating disorder not otherwise specified but don’t quote me on that !

@NanFlanders my D has been however was referred twice when she was in primary school well before the ED but we never did it because we didn’t want to label her when she was young and naively didn’t think she was as we held the stereotypical mainly ‘male’ representation of autism

@Girliefriendlikespuppies im sorry to hear about the bullying, it is awful she has to deal with this as well as the ED. Is she talking to you ? That is always a good sign she isn’t bottling it up. Is it a big college/school is it possible to move to some other friends or does she do anything out of school ? To help build her confidence and find some proper friends. I really emphasises as my D has always struggled with friends but she is so gentle and sweet I think she just doesn’t understand all the cliches etc but It’s so hard hearing her crying saying all she wants is a proper friend.

i know this sounds awful but does anyone get annoyed at other parents complaing/moaning to them I know you never know what is happening but when a friend complained that her daughter was always out with friends or another one saying she can’t find her daughter a prom dress I would be over the moon if my d just had one friend or didn’t burst into tears every time she looked in the mirror . Sorry I know this sounds awful and I know I am incredibly grateful and privileged and many people have it so much worse. But I guess I’m just tired it’s been a long day

Yes @Girliefriendlikespuppies love is right!

Would have previously been called a-typical anorexia. But to DD it was described as a restrictive eating disorder.

Love our dds sound so similar! I'm keeping her off tomorrow, she's currently doing an animal management type course at a college which is an hour away on the bus. Tomorrow I'll contact the local 6th form and see if it would be possible to move her there, she wants to do A levels so we can look in to that.

She's always been a target for bullies and I don't understand it, she's really very pretty (I know I'm biased but think tall, blonde, blue eyes etc!) This week she's been called a troll and a witch 🤯 it's crazy and heartbreaking.

At least at the 6th form she'll have her friends from school and hopefully it will generally just be a bit of a nicer environment.

Thank you Nan. We are currently under an enhanced care team with CAMHS but they indicated this week that she may not be able to stay at home….Putting all my energy into trying to make FBT work as I know it’s the best thing but….

Girliefriendlikespuppies So sorry your dd is going through bullying on top of her illness 😞
You think once they get to college that the nasty ones get filtered out or grow the fuck up, but sadly I know there's some nasty ones at dds college but she's managing to stay under the radar.

Lovewinter Yes it's hard when your own child isn't off doing the 'normal' teen stuff. I'm on a whatsapp group with old NCT friends and find it hard going sometimes hearing about achievements and when they complain how mich their food bill is because their teen eats so much.

That sounds awful. My dd is achieving great things. She's just missing out on doing a lot of 'normal' teen things.

@Girliefriendlikespuppies So sorry to hear about the bullying. That's just awful. Who even does that to someone who has already been through so much.
@magnummum - Glad to hear that CAMHS are on the case. Don't beat yourself up if FBT isn't working. It doesn't for everyone, and I do sometimes wonder if my daughter would have made quicker progress if she had been an inpatient. Her friend's (who was in a Unit) has really changed her mindset and is at a maintenance weight, whereas my daughter told me this morning that she'd rather be thin than have kids, go to uni or work, so...
@lovewinter @Girliefriendlikespuppies - thanks for the feedback on autism.

How on earth do you/they cope when they actually put on weight? DD is beside herself at the idea that she has to show an increase by next week or the meal plan increases again. She can't cope with the idea of it, let alone it actually happening. I know every bite is going to be a struggle between now and then. And God knows what will happen when they then put it up.

I think I've said it here before, but it's worth bearing in mind that lots of the odd or apparently neurodivergent behaviour might be a temporary symptom of anorexia.

I do think DD has always had some rigidity of thinking, but she's not autuistic. However, her behaviour in the depths of anorexia would have got her diagnosed with something I think. She had so many ticks and obsessive behaviours. Yesterday she told DH he didn't need to bother washing her fruit. This would have been unheard of at her worst. She was like Donald Trump or Howard Hughes about hygiene - handwashing, food prep etc. And so many rules about the order in which food was eaten, whether it could touch other items, whether the bagel was perfectly round. She refused to go into cafes or restaurants if they didn't have the highest hygiene rating - I never knew anyone even looked at those certificates.

This has pretty much disappeared now. But in the middle of it, it was so entrenched that it felt very integral to her personality.

SwattyPie My dd is blind weighed and doesn't know her weight and neither do I.
I only know her wfh. Telling her to eat more food hasn't worked for her. She shuts down and refuses and tbh it's just too much for me to cope with. We just keep on with the 3+3 that she's comfortable with and I add as much fat as I can. It works for us and she's very slowly gaining and at the least maintaining. I'm just hoping and praying that weight gain = brain repair and as she improves mentally she'll be more accepting of her body and her looks.

@why Sounds very similar. DD doesn't know her weight, but camhs tell her whether she's lost/maintained each week. We are trying to increase the meal plan as instructed but she won't just "eat more", like you say. I'm not quite sure how camhs expect them to. Big sigh. Keep going.

We are 12 months since diagnosis and DD is weight restored at 107% - we are in phase three of FBT and slowly allowing DD some independence for eating. DD's obs will be taken monthly, and CAMH's are looking to discharge her in February '23 if all goes to plan. I'm anxious as whilst DD has never engaged with CAMH's and stopped attending the meetings six months ago (they were counter productive) - they were observing her health - for those DD's who have been discharged from CAMH's how do you check on your DC's weight, do you continue to blind weigh or do you keep a light touch and observe. How would I know if DD was dropping weight without weighing her? It feels like we are trying to move on from the weighing associated with DD's anorexia but is that advisable?

@SwattyPie My DD was initially blind weighed, but sees her weight now. She is distressed if she has increased substantially and it does lead to a difficult week with more attempted refusals. Overall though, the meal plan has increased and become substantially more varied, and her weight is on a general upward curve, so two steps forward, one step back, I guess.

@Valleyofthedollymix - That's encouraging news - glad your DD is doing better. I had just suspected depression before the AN started, so I was thinking the pressure of 'masking' might have been one possible reason.

It's quite chicken and egg @NanFlanders - I found it helpful to recognise that anorexia was giving her something that she needed and that if we took it away, we'd also need to find alternative ways to give her those things. So the anorexia might be a response to depression or the other way round. Or they both could be a response to how scary and unsettling puberty is, especially after all the pandemic stuff.

It's why I'm at slight odds with other people on the idea that weight restoration is a magic trigger to better mental health. DD's mental equilibrium came a long time before she put on a substantial amount of weight. In fact you could argue that she still hasn't, but she has unsupervised meals and makes her own choices now. Although we're still super paranoid about relapses.

@D1ANA22 - we don't weigh or have DD weighed. When we last went the clinic, she said she didn't want to be weighed and I couldn't see any benefit to it so they didn't. I think she was last weighed in July, but neither she nor us have been told her weight since May or something. In the same way that she needed to let go of her obsession with food and weight, we too needed to relinquish attaching all our sense of her recovery to the numbers. She looks well to me - I think she looks like she always should have looked, no bones jutting out and finally a reason to wear a bra. It helps that she wears a lot of crop tops (with voluminous track suit bottoms) so I get a window straight onto her stomach.

D1 similar to valley we stopped weighing at the point where it didn't seem to serve any purpose anymore other than to stress dd (and me) out. I keep a watchful eye but dd looks about right to me, her clothes fit her okay and she more or less eats what I give her. I think eventually you have to go with state not weight and that will naturally vary massively between individuals.

Weighing herself daily was one of the things that triggered the ED in the first place so it makes sense to me to step away from the numbers. Even dd recognises now that knowing her weight would be massively unhelpful.

Dds 'state' is still not great but I think that's less to do with the ED and more to do with the underlying reasons why she developed an ED in the first place. Low self esteem, fear of being different, not fitting in, being bullied which are all likely linked to being (undiagnosed) autistic.

Feeling a bit hopeless about how I move that forward though! After I sent a shitty email to her college about the total lack of support they have now set a few things up so just have to hope that it's enough. If she decides to come out of college I may have a nervous breakdown 😢

I'm really missing our old life. Will dd ever be happy again? Will she ever be free of this and independent? Will I ever be able to relax around her or to be free of worrying about her? She's pushing back and hating herself and telling me that I'm the ill one. She just wants me to leave her alone and to maintain how she looks now. Every day is just a battle of wits with me trying to get as much food in as possible. Elderly in laws are needing help as well. Dh is trying to help them downsize and there's a big house and finances to sort out, plus their health issues and hosp appointments etc. We're being pulled from all directions. Work is a huge issue too. We were hit massively because of covid and had just started getting going again and now this. I just feel so resentful that dd has brought this to our door. Then I feel guilty because it's not her fault.

Sorry for the self pity. It's really hard when dd blames me for everything. I wish Christmas would fuck off this year tbh.

I think weighing dd is causing more problems as well. Camhs appointments are excruciating. Neither of us want to go and we both feel worse afterwards. Camhs are kind and want to help but I don't feel like they're listening and they fixate on something like the type of yogurt she eats when that's something I can work on with her myself. There have been times they've said something that doesn't relate to dd at all and I think they're getting her mixed up with someone else. I know they're crazy busy but dd is extremely sensitive to everything that she hears re food and weigh, and I sit there cringing wondering what they're going to say next. Then I get the fallout at home - a couple of bad days until we get back into routine.
So sorry for the moaning. Pity party for one hear. Shame it's too early for 🍷

Self pity party for one HERE! I'm not on the wine yet I promise. Love to everyone going through this shit ❤️ xx

@why So similar here. It's shit. I'll join you in a pity party. DD off school today. Not sure she'll ever get back now. I've got to spend the morning on a BEAT course about coping with Christmas (online). Literally can't think of anything I want to do less.

I hear you both @SwattyPie and @Whyisthishappeningtous

DD has been doing ok since Mondays assessment and we've been increasing the mouthfuls at each meal daily, using the leverage of stuff she wants to do over the coming weeks with her friends.

However her mood since yesterday evening has been really low. She won't let me touch her. She keeps wailing 'you don't understand' but then not telling me what's wrong. I've tried to find out, but then tells me it's not something I know about so I won't be able to guess. But then getting cross with me because I don't understand 😖

I know it's probably a massive internal conflict for her knowing she has to increase food. It's just me and her this weekend and I'm dreading trying to keep things light and cheerful in the face of this.

Thank you for sharing your experiences with weighing - that has helped me.

We switched to parent only appointments with CAMH's and arranged for the GP / school nurse to provide health observations. DD hated going to the CAMH's appointments and as she recover's we see those appointments as part of DD's anorexic self; we are moving to improving her quality of life (state not weight as you say) and the trauma of CAMH's disrupts this and DD wants to move on.

Coping with Xmas - in our home Xmas has become just like any other day of the year but with gifts, we treat the day as nothing special and the kids spend much of it in their rooms. I can imagine if you have family get togethers based around food then I see the issues, for us just another day so hopefully DD will cope OK.

@D1ANA22 I want to treat it like any other day. But I'm sad for my other daughter.

Christmas has always been a really big deal revolving around family get together, lots of games and laughter, and of course food.

DD wants this year to be a great Christmas, wants to get together with family, but I just can't get my head around the food side and I'm worried the reality will be far too overwhelming.

I'm prepared to scale it back but we're supposed to be going away to stay with family and currently DD is adamant it will still happen

However we tackle Christmas I just know I'm going to spend the entire time trying to keep everyone happy. I'm exhausted just thinking about it.

Hi @LittlePickleHead - you might find the below helpful -

website link - www.orri-uk.com/coping-with-the-festive-season-tips-from-our-social-media-community/
booklet - www.orri-uk.com/wp-content/uploads/2020/12/Coping-with-Christmas.pdf