teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

Heartily agree with finding joy where we can these days Myrtle - I'm just getting my 'Advent corner' sorted for tomorrow

Dd's first full day back at school today - she claims to have eaten everything in her lunch box, but who knows Frankly I'm sceptical after a weekend of her rejecting virtually all snacks and breaking down in tears several times Really not sure she's ready for this, but I guess we have to give it a go

Hope everyone has had positive starts to their week

@myrtleWilson thanks for asking.
She seems a lot happier since having the tube in but she’s still not gaining weight so they need to increase the meal plan until she does. Just feels like we’re never going to get her out of here! I’m amazed she’s not gaining to be honest as she’s eating a lot! They’re using the tube for anything she doesn’t finish.
She sent me home today because she wanted a break 🤣 - not complaining!!

Hi, I hope you don't mind me gatecrashing. DD1 (15 this week) reduced her eating over lockdown and was very withdrawn. She has always been very slight and a picky eater, but her BMI over the last year or so has gone from 2nd-9th centile down to

oh @Lougle that sounds really hard and you've been (imo) badly served by the health service. I don't think you're worry about nothing at all - her lack of eating, loss of periods and weight/BMI sounds really really worrying.

Does she have any other physical symptoms - hair growing on body, dizziness, heart rate, blue nail beds?

I'd push for another referral/view - I hope you're able to take some support from this thread although I'm sorry you've had to join.

Please do (if you're able) stay with us.

I've read the whole thread, thank you.

She's always got blue/purple toes. She comes home from school and lays in bed watching youtube videos all afternoon (just slime videos, normally. She's developmentally about half her age) as she's really tired from school. She gets dizzy at times. She's trying to get them to let her use her inhaler at school a lot, which of course makes it worse.

She's not restricting in the sense of 'this has calories'. She'll happily eat chocolate brownies, etc., it's just that she eats so little and gets full so quickly, and can't be bothered to eat.

Lougle you def are not worrying over nothing, how old is your dd? I think you need to go back to the GP and ask for another referral to the Camhs ED service. She sounds significantly underweight and quite unwell bless her.

Bella it will probably take a while for your dd to gain weight and she will need to be eating a lot (3000-4000 calories.) My dd eats around 2000-2500 a day now but has not really gained much weight 😕

She 15 this week. I do think that if she didn't have a learning disability they'd take it more seriously

Have you tried taking complete control of the food? So putting in in front of her and finding any which way of getting her to eat it?

I agree they've used the LD as an excuse to not get involved.

My dd also on ASD pathway and young for her age (she's also nearly 15yo but more like 12yo) has responded fairly well to me taking control of all food choices. Although I now feel like she'll never be able to choose her own meals again!

We haven't gone that far, yet. DH will sometimes feed her dinner if she's just sitting staring at it. Perhaps I need to get more strict about it.

Hi Lougle, no such thing as gatecrashing on this thread, hope it is helpful for you

Your dd's weight and symptoms do sound concerning to me as well - your dd is same age and height as my dd, who has only just been allowed to go back to school full time at (not quite) 45kg

If she'd gone down to your dd's weight I think they'd have been looking at hospitalisation - so yes, it does sound very fishy and as if they are using the LD to take it less seriously

Also, for context, my dd was eating 3 meals throughout (but was over-exercising and making sure her breakfast and lunch were v low calorie) - the ED team didn't think this made her case any less serious

All the best of luck getting help for your dd

That's basically all Camhs have told me to do, so I insist on dd eating 3 meals and 3 snacks every day. As dd is routine and rule focused it has worked fairly well, she does still try it on sometimes and I'm not convinced she eats everything she's meant to at school but generally she's better than she was.

Dd had a weight check today 53.3kgs, I should be happy as that's a 500 gram increase but I'm not really. I have a feeling dd filled up on water before the weigh in and she looked really upset at the gain so I imagine there will be some restricting going on now 😕

I'm going to speak to her support worker tomorrow about blind weighing to see if they think this would be better. I can't see any benefit to dd knowing at the moment but she will kick off if she's not told.

Top paragraph of last post for louge.

Really despondent today, as I went into dd's room to put clean bedding away and saw she'd chucked half her packed lunch in the bin

Spoke to one of her support workers who said she thought it was positive, as it looked as if she'd wanted me to find out - but I'm willing to bet she didn't eat half of it yesterday either, as lunch box was suspiciously un-crumby

Sometimes I can't see this ever ending

I know exactly how you feel they ☹️** i can't see any end it.

I have to remind myself that kids do recover from EDs and it won't be like this forever, even though it feels never ending atm.

I optimistically bought dd a chocolate advent calendar which she had very suspiciously 'eaten already' when I walked into the living room this morning

I've had to phone the dietetics service today, because the GP hasn't received DD1's supplement prescription request. Apparently, the secretary is away this week, but should be back next week, so it might be done then . I pointed out that last night I had to feed DD1 her dumpling and a tiny spoonful of casserole, so, given that she won't eat breakfast, I think it's quite important that we start the supplement soon...

lougle I really feel for you, once the chemist hadn't chased a delayed order of supplement (at the time DD was happy-ish to drink the supplement, oh how times have changed) and were very blasé about it. I had to spell it out what a lack of supplement could do to a child with an eating disorder I hope they can get some to you asap. We had to buy an emergency stock from Amazon as a back up - not at all cheap...

Meal support day here - went okay as she finished lunch and we have managed so far to swerve the guilt induced anger by a shopping trip to buy more decorations for the house. A finished meal will mean dinner is harder though but onwards we plough

Lougle I think you need to go back to your GP and ask for an urgent review, have your dds obs been checked recently? It's really bad the ED team just discharged her the first time tbh. Usually at the weight your dd is currently at they would be looking at admission for tube feeding.

That's good the meal support went well myrtle.

Dd had her zoom session with her key worker from Camhs this morning, it seemed to go okay. She mentioned that Ystd in science all the children had to weigh and measure themselves 🙄 she did at least seem to accept her BMI was too low (18) but also pointed out her friends was lower than hers!

The school are as unhelpful as ever

DD1 has never been under ED teams. We had an urgent referral to paeds in the summer, but as they (and I) didn't feel it was psychologically restricting food, they let her go and said that as her mood improves, so will her eating. But it isn't improving.

Is skipping lunch a common thing for most teenage girls in secondary school? Asking because I have an issue with my 13 yr old DD not wanting to eat breakfast then barely touching her packed lunch. I have found her sneaking the snacks back into the cupboard and have found 3 days worth of last week's mouldy sandwiches under her desk in her bedroom today. I have asked her about it before and she doesn't really talk about it. She just says she's not hungry. She's not really lost weight, she doesn't like exercise and her skin isn't great. I'm just concerned that it's the start of a slippery slope. When she comes home from school she usually helps herself to other snacks such as a big bowl of ice-cream. She eats fine at weekends and during lockdown she ate normally. She is generally happier at home but quite reclusive, staying in her room and watching YouTube /Tiktok etc. DH wants to tackle it by banning her access to Tiktok as he feels it's the peer pressure and winds her up about her clothing choices as they are often seasonally inappropriate (eg. furry coat and shorts for a bike ride in summer), crop tops, trainers and no socks in winter. Asking "Is that what they wear in California?" Not really sure where to start with her, it's the deceit that I find the biggest issue.

Welcome help I would be concerned re the skipping breakfast and hiding lunches tbh 😕 that's how things started with my dd. I would start by ringing your dds GP and explaining what's going on. I didn't really notice my dd losing weight to start with but when she did get to the point that the weight started dropping psychologically she got so much worse.

Lougle in that case I'd go back to the GP and ask for an urgent referral to the Camhs ED service, it doesn't matter what the reason is for your dd restricting but you and your dd will need support on getting back on track.

Day that's crap, I really feel for you, the service you're getting sound so unhelpful. I totally agree about the meds, I'd feel the same. That said I don't think them suggesting you stop work for a bit means they think you're unhinged. It's probably more about the difficulty trying to manage an unwell child who needs constant support and supervision alongside working.

Day - my heart goes out to you. Has your daughter been tested for POTS? High heart rate is one of the main symptoms.
We’re not moving anywhere fast. Still in hospital, it was 2 weeks yesterday. I thought things weee going ok. She was eating a bit and drinking the fortisip... or not. She text last night saying they’d caught her chucking it down the sink - she’s been doing it for a few days. Ffs. Could happily kill her myself but trying to remember it’s not her it’s the anorexia. She says she’d rather die than get fat.
Read some stats on anorexia which I shouldn’t have done because they’re grim and it’s such a long road.
I get so mad at her! I’m literally living between the hospital and home and juggling my whole life and she can’t even drink her bloody milkshake.

Oh Bella - my DD did this in hospital too - have no idea how as someone was always with her... I was when we found out but also mildly impressed at her ingenuity - if only it could be put to better use.

Are you still having contact with the ED team from CAMHS in hospital?

help - welcome, and yes I'd be a little concerned about the possible trajectory of that behaviour to be honest.

theyseeher - did your DD say anything about the lack of hiding of the lunchbox contents?

day - I hear you - the frustration and overwhelming relentlessness of this disease is exhausting and to be honest I look back at my understanding of ED's before was woeful. But do take a look at greygirl post if you can - it does give us some hope to hold on to that a better future is possible even if it doesn't feel like it right now.