Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include 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!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

Nc you need to take her to a&e, are you on the fb group? They have an a&e file with everything you need to insist is done before you leave. On that level of restriction her internal organs could be really struggling plus shes now at risk of refeeding syndrome.

I'd want her admitted and not discharged until she's eating 3 plus 3 equivalent to 2500-3000 calories to get you started on FBT.

@NCnora I'm so sorry it must be very traumatic for you to watch her not eating and feel that nobody's listening.

A&E was helpful for us one time, not at all the other time (and now gets thrown in our face). But I agree with everyone else that you need to go armed with the MARSIPAN checklist. Weight loss/restriction is much more important than actual weight.

Thanks to those above for the affirmation/mantra suggestions. Very useful.

Two weeks ago we had a 23-hour hunger strike (because she'd got weighed, didn't actually know her weight but just being weighed was enough). A week ago we had a terrible review at the clinic where she sulked and responded really badly to the director. Said she was planning to stop eating at the end of term.

But since then, gosh she's been fantastic. Every meal eaten, told me off for stealing one of her sweet potato cubes, full of energy, singing, joking. She said to me today, apropos of nothing, 'I'm not going to stop eating at the end of term'. I asked why not and she said 'it's not worth it'. She recognises that doing that at the end of the summer term just had terrible and also boring consequences and she doesn't want to do it again (despite it making her a 'skinny legend').

I hesitate to say that I feel we've turned a corner as we can turn a dark one in an instant. But I hope that she's reached that point that others have told me about when something clicks and they realise that life can give them so much more than the eating disorder. Recovered adults I know said they just woke up one morning and felt monumentally bored of it all.

Yes I'm on the fb group so have the files re a&e. We're there now but CAMHS has arranged admission with a gastro doc so hopefully all will be ok. Will make sure they are clued up re refeeding syndrome.

That sounds really positive valley I really hope it continues. I wish I could get some hint of wanting to recover from my dd, it feels v much like Groundhog Day here 😕

@NCnora how did it go?

Still in a&e after 7 hours and this was a planned admission! But she will be admitted shortly. Blood glucose v low and some issues with heart rate &BP. Glad we're here. Hopefully this is the crisis she needed to get to to start getting better....

Well done @NCnora. DD1 was seen in A&E at around 6.30pm and not admitted until around 10.30pm when we went in. In fact I think we only got the bed when we did because the unit she was seen on closes at night. DD1 was told she was being kept in for 'tests', and we didn't get a proper 'plan' until the next morning, at which point her consultant said that she had to stay in at least a week until she was eating properly. She lost 800g in the first few days after discharge, so he nearly readmitted her again but realised that she'd been sent home on a 1500 calorie plan and needed at least 2000 to gain due to her height. Fortunately, I had kept a meticulous diary using calories, so could show that I'd been giving her 1700-1900 per day!

Thinking of you @NCnora. I remember being in hospital swathed in disbelief, I just couldn't believe it had come to this.

@ncnora please please please take her to A and E. And take the Marsipan checklist with you. It was the thing that started my DD's recovery and she was eating more than 500 cals a day, but they admitted her for re-feeding and she was there nearly 3 weeks! I was told to go lots of times on here and I wish I had gone sooner.

www.researchgate.net/figure/The-MARSIPAN-checklist-this-should-be-used-in-conjunction-with-the-full-MARSIPAN-report_fig1_322346043

Don't leave unless they put IN WRITING they will take responsibility for the consequences if she deteriorates. Have a look at the Eating Disorders UK Facebook group too - they have a fantastic resource on what to do/say at A and E. Once you join you can see in the files sectioin

OOPS sorry @NCnora I can see you are there now THANK GOODNESS. Hope it's going ok.

@NCnora I'm glad they have admitted her. Like others, I was in utter despair and disbelief when dd was admitted but looking back it was the best thing for her. It was the turning point and the start of her recovery. I know I kept going on to @DarkBlueEyes about taking her dd to hospital - sorry if I sounded bolshy!
Hope you get the support you need.

Hi there. Just found this thread. After months of battling CAHMS and asking for help with my daughters eating disorder, they have now agreed to assess her. She weighed 78kg in March and now is 50kg. Eats about 500 cals per day. Looks ill. Having blood tests tomorrow and a 3 hour assessment next Wednesday. Any idea what will happen in the assessment?
What is the Facebook group?

C4 sorry you've had to find us but welcome to the group.

How olds your dd? The fb group is the EDSUK one.

On Wednesday all your dds physical obs will be checked and they will talk you through FBT - family based treatment. This means you will take full control over what you dd eats, she will be expected to eat 3 meals and 3 snacks a day all high calorie and high fat.

Your dd will probably respond with complete denial and disbelief that there's anything wrong with her.

If she's been having less than 500 calories a day for more than 3 days you should take her to a&e to be checked out, she will be at risk of refeeding syndrome so may need to start refeeding in hospital.

NCnora I hope you're doing okay.

I had a pretty depressing conversation with dd tonight which just reminds me how far we still have to go. She said she holds onto a wee for as long as possible as she likes to feel 'lighter' once she's gone... she also has to sleep with a blanket between her legs as the thought of her thighs touching disgusts her so much. She also can't sleep on her side incase she feels her stomach touch the mattress. The weirdest thought she admitted was not wanting to stay in the shower too long incase it some how makes her heavier

I honestly thought she was doing well but clearly we still have a way to go ☹️

She also admitted to some competitive thoughts with some of her friends who also have mental health issues. I said but these friends are miserable why on earth would you want to be more like them?!!

In other news I have booked a holiday in Portugal for next summer! It will be for when dd finishes her exams, we'll both be more than ready for a holiday 🥴

@Girliefriendlikespuppies I like to think that in the summer, your DD's exams will have gone brilliantly and she'll be stuffing her face with those little Portuguese custard tarts. You would deserve nothing less.

@Girliefriendlikespuppies my DD was worried at a weigh-in last week that her wet hair would have made her heavier! It really is disordered thinking isn't it.
Thanks to all of you for the support. Today is day 3 in hospital (under the gastro team) and some progress has been made - physically if not mentally. She's having a mix of the actual meals, supplement drinks and feeds via NG tube. She's v low today though and unhappy at the 3+3; it's so much more than she's used to. Also the thought of being here for 2-3 weeks is awful. My heart breaks to see her like this but I'm trying my best to support her, she just gets so distressed talking about it, so it's hard.

@NCnora it is so hard, do you have support to lean on? Also, my advice would be to make sure before discharge that you have a firm plan in place for support outside of hospital. Unfortunately, my DD yoyo'd in and out of hospital because the support on discharge wasn't there.

Dd's dysmorphia is soooo strong at the moment - I've told her that it is the ED trying to find a way back in to control her as she is doing so much better on eating now. The dysmorphia is leading her to disassociate at school but tbh school are fab and just happy to have her in each day. We've never been given any support really to tackle the dysmorphia so all the other tools/techniques aren't really working here. I may go back to the Tabitha book to see if any suggestions but if anyone has any I'm all ears!

Just quickly popping in to say to @NCnora I’m near you and we’ve been told to always go to BCH as they have a CAHMS base there. Think once you’re in under the ED team the care is pretty good but getting in is tricky

Hi everyone

I don't come on here very often, and find it hard to keep up to date with everyones situation. But have scanned through the posts and my heart goes out to you all, it's such a hard relentless, dominating illness . Your posts are all too familiar, have had so many trips to A&E, so many admissions, so many times where weight has been manipulated (once even sewed weights into her underwear!). I'm feeling a bit flat with it all at the moment. My daughter has started to have bone marrow failure and such low blood sugars that she now has to check them twice a day. Still around 65% wfh. Such a worry. Yet outwardly she looks like shes doing ok, managing uni etc, but so so thin and still too scared to think about recovery. I feel exhausted with it, 8+ years and still such a battle. Its never ending. Hope all your situations begin/continue to improve x

Oh @Bluebuddha10 that sounds so exhausting 
I hope everyone can enjoy the run up to Christmas. @NCnora take the respite while you can and let someone else do battle. She will come out from hospital stronger both physically and mentally.
There are positives to grab onto. DD has eaten the chocolate from her two advent calendars every day I never ever thought that was something so insignificant would be such an achievement. How things change.

Blue that sounds terrifying, at what point do they start considering sectioning in order to get them treatment? If her bone marrow is failing that sounds really serious, what are her other bloods like? You must be so worried 😟

NC we are winning with the advent calendar as well! After a rocky start where she refused to look at it we have come to a sort of agreement that she can save a few days up and eat them on her chocolate evening! Tonight's chocolate evening was 5 advent calendar chocs, a twirl, a mini toffee crisp and 3 chocolate biscuits 😁 she did really well!

I don't know why but I get the feeling she's really hungry at the moment, maybe extreme hunger? I worry that I need to push to get her to eat again before bed as have a horrible sense that she's hungry again by bedtime. Am loathed to rock the boat though when she's eating generally pretty well.

Tomorrow she is off on a school trip to London, it's going to be a very long day as she's up at 5am and won't be back til 10pm. We've talked about respecting her hunger cues and the likelihood that she will be really hungry. She's taking a packlunch and they're stopping somewhere for dinner on the way back.

I really really hope she has a good day.

@myrtleWilson

Welcome everyone, Our last thread can be found here www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include 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!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

Hello I'm new to Mumsnet and this thread but a mum I know said this was a great thread for support. I sorry I don't know all the shortcuts so apologise if I use the incorrectly 🤦🏻‍♀️ So my DD is currently in hospital at the moment after refusing to eat and hardly drinking. She's currently 38kg and being fed by a tube. Her ED is so strong at the moment and she's too weak to fight it. It's so sad to watch. We've tried everything to try and get her to interact with us but she says she's too tired to concentrate on anything. We feel helpless at the moment and my husband and I are doing shifts at the hospital so we're there 24-7 (she went in on Wednesday) but I'm not sure how long we can do this for. Can anyone share their experience of hospital with me like how long their DD was in for how you managed staying with your DD. Im just so overwhelmed by it all. It's seemed to have happened so rapidly 😢😢

Hi @vagor, I'm sorry that you've had to join us. DD1 is 16. She was admitted last year for 9 days at 37kg. She's now 54kg. Hold on, it will improve.

Thanks @Lougle trying to take every day as it comes. Sometime we get a glimpse of our DD but most of the time the ED has got a tight grip on her.
Doesn't help when general consultants and nurses lecture her about how she should eat and then how she should find other ways of coping rather than starving herself. FFS if it was that easy for her surely she'd do that but at 12 years old she wants to die and this is her way of doing it 😢😢
We need some sort of therapy as well as the hospital admission so I'll speak to the EDC guys on Monday because CAMHS have said they won't see her now because she's sick. They wouldn't see her when she was at home. I'm so frustrated with it all 😡😡

@vagor my DD was admitted at 39.1kg and was in hospital for 2 weeks and 4 days (she was 77% WFH at 14 years old in September). Now she's 91% WFH and 47.4 kg and back at school. She had wanted to go to hospital - validation maybe? But it wasn't the holiday camp she was expecting. And one good thing that came out of it is that we've managed to stick to the time frames they gave us for eating meals which has made life a lot easier.

She's just invited four friends around for, wait for it, A TEA PARTY! She's baked biscuits and says she will eat some. Eating in front of someone is a massive deal, and I am amazed at her asking for this!

But today hasn't been a good day so far. MASSIVE standoff at lunch with hidden food and refusal to swallow. However I kicked ED butt and won that battle by telling her I'd cancel the tea party. AND I would have!

For those asking how I am, thank you. It's been a bit crap as we have been investigated by social services. I am accused of locking DD in the car to force her to eat (actually physically impossible in a relatively new Volvo as the doors just open from the inside FFS) and "howling for hours", amongst other things; my DH has been accused of being "distant" and leaving it all to me, and that my mental health is at risk.

Fuxache. If anyone can get through an ED without shedding a few tears then they are a psychopath.

so I'm pissed off. But apart from that it's ok, though the ED is staging a fight back but I am prepared to withdraw all privileges such as walking home from school if things don't improve. She was on average gaining a kilo a week, now it's around 200 to 300g and it's not enough, we'll be ages before she's weight restored. Physically she looks good but mentally we are SO far away from where we need to be.

Phew. Sorry for the essay.