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...

Sounds like everyone's having a shit couple of days, me included.

I'm so sorry for all of us.

DD has been ill in bed for the past few days but has been eating. Something has happened this evening that's made her mood spiral downwards and she's cut herself, and has no refused snack and said she's going to stop eating full stop tomorrow.

It's so so hard to find the strength to keep going

I find it very hard not to get pulled down with dd's moods. She is eating to her plan which I'm thankful for daily, but she's very low and talks about not wanting to be here. She wasn't too bad before Christmas but I think Christmas just magnified to her what she was missing out on and how small her life has become.

When I try to talk she tells me I'm not a good mum and I don't care. It kills me, we used to be so close and do so much together. She's always in her room endlessly scrolling her phone and spending hours doing her make up. She rarely goes out and I think her friends are starting to pull away. Dh is very low and worried she'll be like this forever. I try to be more positive and think some of it must be teen hormones and she'll grow out of it?

We are trying to carry on with our own lives and role model getting out and about, but how can we be normal when our dd is just a ghost in her room? We went to the cinema yesterday and I just sat in the dark crying worrying about her being home alone. I have some really dark thoughts as well.
I need my dd back 😞

Hi everyone, 5 weeks into supporting AN 10 year old.

I have been reading through the thread and I'm scared but also feeling less alone - I had simply no idea how utterly horrendous AN could be. @Bagpuss sending you love and support.

We are absolutely poleaxed by it all. We were working really hard over Xmas to get onto the meal plan but it's clear not enough as she has put on 200g in that time. I can see every single one of her ribs and spine. We have had some bad blood results and after a bit of back and forth it seems diagnosis is complicated by Reynauds and possible coeliacs/peptic duodentitis. Or they may have been caused by the AN but it's kind of irrelevant as she is really really ill, low points have included her slamming her head against the floor during a tantrum, and spitting out blood when she bit her lip in case it increased her calorie count.

CAMHS have been supportive (except over Xmas which I understand) and on Wednesday everyone was a bit shocked by the lack of weight gain, particularly as we know she's not over exercising/throwing up etc, she is essentially never alone. Since then have managed to increase her calories and she's now put on another 400g but she is eating 6-7 hours a day as it is so slow. Her W4H is 82.

CAMHS has offered us an Enhanced Care Pathway team assessment next Friday and I was wondering if anyone could tell me anything about what to expect in the assessment? We can (kind of) handle the tantrums but is so very sad and says that she just wants it 'all' to be over.

Also I know this is a nuts question but is there any kind of timeline on this level of AN? Anecdotal is fine. My older daughter struggled with disordered eating but wanted to be better; this is something else.

Welcome @WhatHo, although as ever our customary addition to that welcome is that we're sorry you've had to find yourself here. Please do post any questions, rants, triumphs - there will usually be someone around to offer some advice or mainly just a listening ear and nod of recognition.

Goodness, your DD is just a baby really - am so sorry she (and you) are going through this.

In terms of enhanced care pathway - I didn't hear that term used at our CAMHS (although one of the learnings from these threads is that each CAMHS seem to operate differently).

I've googled and found this booklet on ECP www.oxfordhealth.nhs.uk/wp-content/uploads/2020/03/OH-343.22-Enhanced-care-pathway-Oxon-CAMHS-Eating-Disorder-Services.pdf. My reading of the assessment is that its like a multi disciplinary team working to assess what is best for your DD - so they may draw upon CAMHS expertise in addition to the ED team. It reads like intensive/intervene early and hard/approach from all angles with an expectation that this delivers improvement. We had a similar 'throw the kitchen sink' at us approach but that was because DD was almost 18 and we all wanted to avoid a cliff edge.

My experience in CAMHS was to make sure they knew the rock bottom but it did take us a while to realise that - so be explicit about the extent of your DD's delusions (spitting out blood because it may have calories) - I'd be going into the assessment process setting out that rock bottom rather than sugar coating it. I hope it goes well and you get a productive outcome.

Sorry @WhatHo I meant to add - additional support the ECP may offer could be at home meal support - DD's CAMHS worker would come out to the house at a meal time to get her to eat (it was helpful for us to watch and learn as no-one at CAMHS had given us any real guidance on mealtimes - ie. only allow 30 mins for evening meal, if not eaten move onto Fortisip/Ensure) or they may provide support from anxiety/mental health teams who will work with issues relating to that, I suppose other services could be things like therapeutic art/play etc...

Sorry (again) - I just saw that you daughter is eating for 6-7 hours a day. This is something that meal support (as referenced above) can help you with. The advice we (finally got) was to put a time limit on each meal but to be on it with distractions etc. Part of the psychology behind it was that the eating disorder wants to be in control and to make your DD's world just the two of them. The more you can create non AN space in your DD's life (by limiting meal times) the less power the AN has.
We had to divide the day up into 30 minute slots and fill each slot with an activity so there was constant 'noise' to drown out the eating disorder.

At the assessment, ask about how you can be supported to get those hours down -I'd push for meal support definitely.

Hi WhatHo so sorry you're here. Your poor dd, only 10 years old 😞

Everyone's assessment seems to be slightly different. In our case we went to the gp for the physical checks and our camhs assessment was over zoom. It was around 2 hours and involved dd and I together talking to a therapist answering lots of questions about how it started and general stuff about family medical history, school, her friendships etc. Then we spoke to a dietitian who took details of what dd was eating and talked a bit about adding value to meals and tried to get dd engaged. Then dd and I each talked to the therapist alone. It's quite an exhausting process but essential for the camhs team to put together a picture of exactly what is going on so they can (hopefully) give you the best service. Afterwards I was emailed lots of info and a diet sheet. Weekly appointments then started quite quickly.

I found Eva Musby bite size invaluable anorexiafamily.com/bitesize-public/ particularly her soothing voice telling me to show compassion. I was a bit clueless when I discovered what was going on and I got cross and thought she just needed railroading into eating and back to normality. That approach just doesn't work and set us back a lot. Once I pulled myself together and heaped on compassion and understanding she did start to respond and started eating. We're way off recovery but it feels like we've got some control over it and when the meltdowns and bad days happen I know its not completely the end of the world and we can get back on track.

You'll need to look after your own mental health too. Easier said then done I know as this illness is devastating for parents. There's loads of support here from parents who know exactly what you're going through. I wish I'd found this forum earlier.

Timeline wise, I don't think there is one. It's a very up and down illness. In our case we're about a year in. It took 2/3 months to get a good grip on the diet plan and eating in a fairly normal way. She still has a lot of ED rules though and many issues with her mental health. It's just a case of arming yourself with as much knowledge as possible to get your dd on the road to recovery.

Sending you lots of love x

Hi whatho I'm sorry you're here though, I work in the NHS and 'enhanced careplan' to me sounds like they've probably come up with a new care plan or approach to try.

How much food are you getting in at the moment? Generally the quicker you can get weight on the quicker the recovery, the easiest (!) way to get the weight on and brain recovered is to add fats to every mouthful. Double cream, butter, oils, lard etc.

In a best case scenario I think you'd be looking at a minimum of 6-9 months to get weight restored and see an improvement in thoughts/behaviours. The mental work is ongoing though and can take years....

The good news for you is that you're dd is young and the outlook is generally better the younger they are.

@WhatHo Like others have said: Welcome, but sorry you are here. I feel for you - mine also head bangs, and once got concerned that swimming pool water would be absorbed by her body... This is a lovely, supportive group. If you haven't already, you might want to look at the Beat website and Eva Musby's book and YouTube channel - I think Eva Musby's scripts are particularly helpful for younger children. Love and hugs.

Hi just catching up.
So sorry to hear about your DD @NanFlanders I can't add anything to what has already been said but my heart goes out to you and your DD
@lovewinter How old is your younger DD? I am so sorry to hear she has also become ill. Please don't beat yourself up about 'not noticing' - everyone does it. When I saw my dd naked for first time after diagnosis I couldn't believe i hadn't seen the weight loss. And you have another DD you are caring for. I hope your older DD can get back on track and model that behaviour for her younger sister. Is your younger DD banned from gym? That might be an incentive?
@BagpussSaggyOldClothCat hold on in there. With weight gain you will get your DD back. The endless distress tolerance is so hard I know.

@WhatHo welcome (in inverted commas)....
I remember the early weeks after diagnosis (my DD had just turned 13 when she began restricting and obsessively exercising (secretly!) and she was diagnosed about 6 months later when I finally accepted something was seriously wrong. She was 78% wfh at her worst).
Its a very scary time when you feel horribly out of your depth with a child it's hard to recognise.
You have done amazingly to get weight gain and establish the feeding plan. It usually takes a while to get weight gain. I liken it to turning an oil tanker round. First you stop the losses, then weight stabilises, then you get gains. It takes around 500 extra cals a day over 'normal' requirements to put on c 500g a week. Took us weeks to.build up to that.
Everyone else has provided great advice.
Just to say you have many things on your side: an invested care team who seem to be on the ball and your Dd is young.
Getting weight back on as quick as possible and her youth mean full recovery is vv likely. Although it will be a tough road.
Does she have a psychiatrist on board? If not I would push for this as then if meds could help someone is lined up
My DD had low dose of olanzpaine which is an a antipyshcotic and it helped with the extreme behaviours you describe (it doesn't fix it it just takes the edge off).

Oh my goodness. So many messages. Oh thank you so much. I am a bit tearful now. Will read and respond properly.

Thank you thank you

WhatHo it's very overwhelming at first. Please don't feel you always need to respond on here, no one takes it personally if you post and disappear for a while. Reading replies which contain a lot of advice and other people's experiences can be quite overwhelming and you often just need to process everything in your own time. I hope you're OK today.

@BagpussSaggyOldClothCat Thank you very much for your understanding - I fele like I have no time at all. I am freelance with two jobs, neither full time but even replying to emails feels impossible, she needs so much reassurance and as I said the eating takes forever. I think I will probably lose one of the jobs and I don't know how I feel about that.

@Lottsbiffandsmudge Oh god thank you for saying that I've done well. I've just read Eva Musby from cover to cover but I don't think I'm giving nearly enough food. But an extra 500cals just seems impossible, she is struggling with 2000-2100. I feel like I'm on a tightrope and I'm going to fall off at any moment.

Thank you - she gets a bit cross about the 'I know what you need line' and screams 'just tell meee!' about weighing and calories but I hope is starting to get it. I don't tell her calories but she wants me to confirm I've weighed everything.

I am hoping they will give me someone to help build up distress tolerance. She just keeps saying 'she cant do it anymore'.

@myrtleWilson - thank you that is very helpful.
With the time limit I worry that if they set a limit and go straight onto protein shake, she will be eating nothing but protein shakes, and they're still not enough, 1800cals.

@Girliefriendlikespuppies - thank you for link, I think I will push hard, I would love a template I can copy.

@NanFlanders Thank you - she gets a bit cross about the 'I know what you need line' and screams 'just tell meee!' about weighing and calories but I think is starting to get it.

I would love ideas for meals where I can hide cals. Currently mashed potatoes and anything creamy are head-banging levels of fear.

I just feel sick all the time and like i'm failing.

@WhatHo 'I can't do this anymore' was what my DD said all the time when ill. Distress tolerance boils down to helping them sit with the extreme anxiety whilst it reduces. She has a voice in her head berating her constantly. Banning her from the kitchen, all meal decisions, prep and shopping and blind weighing and reducing time eating are a kindness. It doesn't feel like that but it means she has a 'get out' from the ED. Ie 'my mum made me'. it is the ED wanting to know her weight and that you have weighed food. Try to deflect as much as possible. Its not what she needs.
When she gets v distressed (my DD was by turns very violent, self harmed by pacing the garden in bare feet in the snow etc, hysterical sobbing and lots of despair) I tried to make her safe physically (put cushion under her head, gently physically restrain her (a tight hug!)) and then just said things like 'I am so sorry this is so hard for you' or 'this seems so tough for you I am going to help you get well' and not much else. Lots of i love yous. Remain physically present. Not saying much is so powerful
If she allows you, physical stroking helped my DD. I spent hours helping her sleep.
In terms of food, lots of animal fats. Dairy and meat. Best and most useful foods for recovery. Full fat everything (yog, milk etc). Highest percentage meat fat (20% beef mince not 5%). Cook in butter.
My DD drank milk based smoothies which I hid double cream in. Double cream in mash (I know its a fear food but carry on). In fact double cream in anything!
Take comfort from the fact that my DD cannot remember her distress now recovered. She remembers 'being ill' but no details. This is quite common in younger sufferers.

@Lottsbiffandsmudge that's reassuring that your dd doesn't remember the distress part. I've never asked my dd but she was older to start with.

@NCTDN I on the other hand remember everything.... I think that is why its so hard for me to properly let go of her eating. She really is better. But I can't trust that yet.
I guess I still need to process what happened. It was so traumatic. I feel for you all still in the throes of this illness and pray for recovery for your DC.

Hi everyone. Thanks for all your support. Just to update - after refusing to attend an emergency appointment on Monday, DD did attend her regular appointment on Tuesday. She had lost 3 kilos in a week and was admitted immediately. I'm massively relieved that she is safe (ECG monitoring overnight), but she did pull the NG tube out. Her psychologist and specialist nurse were amazing - they persuaded her to let them hold her hands tightly so she didn't have the.option to pull it out (alternative was a section today), then talked to her for half an hour afterwards about Taylor Swift (her obsession!) to calm her down. I know everyone hasn't been as lucky with their ED support team, but care has been exemplary.

Ah Nan I'm sorry but also relieved your dd is back in hospital, i really hope this is the admission d as he needs to turn it around.

Whatho I hid calories in;

soups, any veggies plus double cream,
Scrambled eggs - they soak up butter and double cream
Porridge- use double cream rather than milk
Anything with a white sauce so fish pie or pasta - white sauce made with flour, butter and double cream.
You can add butter to baked beans
Smoothies - fruit and double cream
If she eats meat then cook meat in lard

The other side of distress tolerance is distraction, any distraction is good so talking about anything other than the food, watching a film or series on the telly, playing a game, crafts, telling jokes - whatever works but keeping her mind off the fact she's eating.

WhatHo

Unsalted butter blends well into soup, baked beans, tinned spaghetti, gravy, pasta sauce, curry sauce, scrambled eggs etc. Keep stirring until it stops looking greasy. I have a little sauce pan that I decant dds portion into before adding.

Double cream into yogurt, mash, baked potatoes, milk.

If your dd will eat porridge it's a great way to add lots of double cream. Dd has 50g of the big rolled oats with 100ml double cream and 200ml milk - with sliced banana and honey drizzled on top. It doesn't look too creamy once cooked. You can also do it as overnight oats.

Dd has had a hard week here, she told someone at college she had anorexia and they said well you don't look it <sigh>

That's triggered self harming and self loathing. She told me she feels out of control every time she eats and has felt suicidal this week 😢

Some of it I think is hormonal as her period is due and the week before her period her mental health does seem to nose dive. Her skin has also broken out badly which makes her feel even worse about herself.

I don't know if I should be talking to her Dr as she has no mental health support at all now the ED team discharged her. College don't seem to help at all.

I don't know what to do.

@WhatHo on the distraction front DD and I had a series on Netflix (Anne with an e) which we watched 1 episode a time for meals..it really helped.
@NanFlanders so sorry your DD is in hospital again but glad the care is good.
@Girliefriendlikespuppies how tough. Being discharged and having no safety jet is really hard. Maybe trying to get some MH support is the way forward.

@Girliefriendlikespuppies That's so tough. I'd say try to get another referral to CAMHS given the self-harm.

NanFlanders sending lots of love to you and your dd. The staff sound amazing.

Girliefriendlikespuppies

That sounds so hard. I think my dd is on the brink of discharge from ED team as they've mentioned it a couple of times as she's eating and has periods. Despite all that her MH is awful, particularly as you say when her period is due. She spends hours getting ready then cannot leave the house. She's not been out now since 2 days before Christmas, apart from to her camhs appointment. Her ED behaviours are still very strong. She won't engage at appointments so it just all seems so pointless. But I'm resisting discharge until something else is put in place for her.

Spoke to gp last week who advised vitamin d.. 🤷‍♀️