Teen Eating Disorders - Thread 6

[myrtleWilson]

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

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-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!

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

@NanFlanders that sounds really tough and I can only echo what PP have said about being super firm. Easier said than done and when we do it, things often escalate.

We are having a bad day today with refusal of meals, threats to jump out the window, threats to run away. Rang the duty line which was a waste of my time… long conversation for them to say - do I have any friends/family that could sit with her for some mealtimes. The answer to that is NO. She is utterly foul and even her grandparents came to visit at the weekend and she had a meltdown because “they looked at her”.

I’m just so done with it all and the massive realisation that we are totally on our fucking own with this shit. Not person can help… so we see CAHMS but it doesn’t actually achieve anything.. we are just another patient in the hamster wheel.

Sorry for the shitty post.

It is shit though @C4tintherug - I described on a previous thread that even a good experience of CAMHS is the equivalent of a surgeon saying to you,

" So myrtle you need to take out your daughter's appendix, on this tray is a range of tools - some may work for your daughters body, some may work better on a mouse. Have a play around, give it a go and see how you get on and I'll pop by next week to see have a wee chat with how you thought it went"

Sorry @Girliefriendlikespuppies @Valleyofthedollymix that you've both landed on a snakes square. But well done on the Subway - not having had on in so long and she ate most of it - the ED can't undo that so chalk it up as a win.

Thanks for stamina and resilience comments, they're not attributes I particularly recognised in myself prior to this shitshow 🤪 you definitely have to have the mindset that recovery is a marathon not a sprint.

We're almost at the two year mark of when dd started restricting 😕 My mum did dd a photo book for dds bday and the photos of pre ED vs post ED break my heart. Dd looks like a ghost in some of the post pics and looked ridiculously care free and well in the pre pics.

Sorry you're getting the brunt of it valley, i wonder if you're hitting a bit of the extinction burst where the ED gets seriously pissed off and takes it out on those closest to them.

C4 that sounds so shit, I had similar with dd running out of the house in her socks at one point. Thought I was going to have to call the police to bring her back 😩 I know other posters have said their child has displayed some very extreme behaviours, the memorable ones are; putting a foot through a windscreen, being physically restrained so they won't jump out of an upstairs window and smashing an oven door 😱

The hatred and violence the ED can spew is shocking and you can see how terrified our kids must be underneath it all.

Oh well, all we can do is keep going, keep feeding and keep hoping for the magic switch to click in their brains!

@myrtleWilson I absolutely loved your description of the surgeon waving his hands vaguely in the direction of some tools and telling us to get on with the surgery ourselves. It is so true and I have shamelessly stolen the metaphor to use in real life.

Things were further complicated for us by being in the middle of the early 2021 lockdown when DD was diagnosed. They all muttered the 'Family Based Therapy' as some sort of magic mantra without ever explaining what it actually meant or the reality of it. And the reality of it is that they're subcontracting all the responsibility for feeding your child to the parents in the form of three meals and three snacks and half an hour supervision after each one. In other words more than a full-time job. We were sent a meal plan and told to get on with it with absolutely no guidance as to how. If it were easy for a child to eat a full meal and sponge pudding followed two hours later by a snack two pieces of toast with Nutella, then that child probably isn't in the grips of an eating disorder.

@Girliefriendlikespuppies we've called the police on DD - it was 9pm and we didn't want her wandering about a not-unrough part of London but neither did we want to physically restrain her. The police were absolutely great - super empathetic and didn't make us feel like we wasting their time. I therefore have soft spot for the Met amid all their travails.

@Valleyofthedollymix this is what upsets me- there is no support… basically told to get on with it.
We are currently in the middle of snack refusal… how long do we go on for.. husband has told her he will sit up all night… I think 10pm is reasonable but I know she won’t eat. Can’t bear it. Appointment tomorrow with care co ordination and I’m pretty sure we’re on a weight loss.
I tried to get some support for me… have contacted 4 counsellors now as I am struggling to cope with this all, I can’t sleep, can’t think about anything else, as soon as we get food refusal I am not strong enough, I feel like I’m dying inside… every local counsellor is booked up with a waiting list… no idea where to turn

C4 can you speak to your GP? I know lots of ED mums have needed antidepressants for themselves. It's especially hard as no one (friends and family) in rl understand quite how horrific it is. I think if your dh has the stamina for it then yes keep going! I know some parents of the fb page kept on for 16 hour stints 😳

We've had a bit of a crap day, I was feeling tired and stressed anyway which doesn't help! We fell out over dd pulling the cheese off her cheese on toast for lunch and then she insisted on walking an extra few meters home rather than walk with me. I found both things very triggering and got cross with dd who then turned round and said she can't wait to be dead so at least then she'll be rid of me 😪

I feel so so weary of it all, it just feels like this will go on forever.

I think dd being off school (half term) is why it feels so hard again but I've felt so upset about that comment she made, thought I might get an apology but no...

@C4tintherug I'm so sorry you're having such a horrible time. We've all been there at different times. I don't think friends and family have any understanding of the relentlessness and grimness of it. I know I didn't when my kids' cousin was going through it.

@Girliefriendlikespuppies as ever I guess you have to try to separate the awful things they say from their true selves but god it's hard sometimes.

@Girliefriendlikespuppies my dd also tells me she would rather be dead, I should just leave her to die etc.

We had weigh in today and no surprises she has lost weight. In fact she’s lost so much we are at a lower weight than when we started this journey. She has no motivation to gain weight or get rid of eating disorder. I am just done.

@C4tintherug no advice but total solidarity- we are pretty much exactly where you are. Another loss at weight check today and steadily heading back to where we were at the beginning of all this except now I don’t even have the hope that I had when we were first referred.

It’s just too much. I’m exhausted after six months of it and don’t have anything left in me to climb out of this nightmare

@AskAlexanotme @C4tintherug - sending you both oodles of love and energy - it is the most soul destroying, energy sapping, brain frying experience I've ever known. When DD first relapsed I literally didn't know what to do as I had been out of "battle rhythm" for a couple of months. It is impossible to maintain that intensity of thought and action for any length of time. But don't be scared (not saying you are) of showing your exhaustion to your DC - its important that they know you're not super human and you can't do it all. For us, DD's first attempt at recovery was because she - in her non ED moments - could see us breaking down as a family.

keep sharing on the thread - it was my lifeline for a very long time

Ask and C4 I'm sorry things are so hard, I can remember the complete despair and desperation I felt in the first few months of FBT.

It's hell.

All you can do is keep feeding, keep pushing and know that your child is in there and desperate to be rescued.

I know have posted a long time back asking about treatment centres. Slightly at end of tether and looking at Orri. Yes it costs a lot but I am willing. I just want to know if anyone knows anymore about it? I don’t know anyone first hand that has had experience with Orri. Let me know thanks

Hi @afewtoomanychoices no direct experience of Orri in terms of treatment but I did contact them with a view to possibly DD accessing online services and was impressed with range of services (including for example yoga) and their approach in talking with me. Are you on twitter - you may be able to find people who have used Orri that way...?

@afewtoomanychoices
Have just popped on twitter and have seen they were recently rated outstanding by CQC - I attended an online event & it was good - have you signed up to any of them to get a sense of them as an organisation?

So, today DD was readmitted less then two weeks after being discharged. On Monday, her heart rate (following refusing snacks and Fortisip) was less then when she was originally admitted. The ED team were on the fence about admitting her, but gave us 24 hours to turn things around. She did comply with the meal plan for the first time over those 24 hours, and her heart had improved by her Wednesday appointment. Unfortunately, the ED disorder then gave her hell. Directly after the appointment, DD refused afternoon snack and dinner, wouldn't drink any soy milk, and wouldn't have Fortisip either. She did eat some biscuits for supper but got upset when I tried to get her to eat the crumbs (she tends to eat the biscuits in miniscule pieces so there are lots of crumbs). Then Thursday she refused to eat anything and rejected her Forceval (vitamin tablets) and Fortisip. Worryingly, she also started to refuse fluids - this is new and terrifying. I called the ED team who have readmitted her, and I'm sitting next to her on a heart monitor. I think the plan is to feed her up - she is eating snacks (as fewer calories than a Fortisip), but refusing meals in favour of Fortisip, and then release when her heart is stable. I'm just terrified that if she gets discharged on Monday, the whole cycle starts again - with her poor heart having more and more strain put on it every time.

@NanFlanders and others out there in despair, hold on. It will get better trust me. I remember the utter feeling of hopelessness last year. The feeling of failure as a parent was overwhelming and I couldn't see a way forward.
DD was officially discharged from the ED service this week. I would have liked her to stay on their books as it were, but she's now 18 so officially would be adult services. She's put on 14kg and gone from 68% wfh to 96%. The cbt team are confident she is mentally and physically stable enough for university in September.
There is light at the end of the very long, dark tunnel

@NCTDN - Fantastic news about your DD! Hope she has all the fun and success in the world at uni.

Oh Nan I'm so sorry to hear that, I think I'd be asking for a robust plan if they start talking about discharge. Otherwise they're just sending you home to fail surely? On the fb page someone mentioned (after multiple admissions) the hospital agreed that as soon as a meal or snack was missed their dd could come back and they would give the equivalent by NG. They only had to follow through once.

I feel a bit all over the place at the moment, in the last 48 hours I've randomly burst into tears for no real reason. I'm wondering if it's a combination of being burnt out after two years of stress and peri menopause hormones! I also keep feeling really angry, like I want to scream.

Hi @Girliefriendlikespuppies Can't even imagine how burnt out you must be after 2 years - we only realised DD had an ED on 21 Dec, and it's been pretty much a full-time job since then. Hope having a good cry helped you get rid of some of the stress. Thanks for the link to the FB group btw - some good stuff there

I cry all the time. I remember a friend saying to me, 'have you thought about crying as that might jolt her into to realising how it's affecting you'. And I thought, god you've no idea what it's like. And this is a really close friend who I've been very open with.

@NanFlanders it does sound really bad but at least it's unequivocally bad, if you see what I mean. They will have to readmit her.

@NCTDN that's fantastic news! 14kg, that's amazing, how did you do it? I've seen you on the higher education boards (son is off this year) - gosh it's stressful, isn't it, the system whereby offers come in dribs and drabs with no logic. Hope she's got somewhere she's excited about it.

@Girliefriendlikespuppies I'm not sleeping at the moment because of hot flushes. I'm going to try HRT. I just can't be doing with it and the ED.

PS what do people reckon as to menstruation? DD has had three periods on the trot - returned in December, then 28 days then 25 days or something (so a bit irregular). She of course is saying that means she's a healthy weight. I'd like her to put on at least a few more kilos but regular menstruation is a sign that she's not a million miles off isn't it?

@Valleyofthedollymix where your fds looking at? I'd like dd closer to home than her favourites but can't force her. She's reluctantly agreed that the uni will need to know her medical history. To be fair, from her hospital admission in May, weight gain has been slow but steady with no relapses. So I know we've been very lucky.
Her periods haven't returned though. Spoke to the gynaecologist who said there's nothing to worry about and it could be another year. There's no long term effects that would be detrimental to her which was a relief.

Valley I think you have to go on the state not weight theory ie are they thinking more rationally? Are they eating a wide range of foods including fear foods? Is their anxiety/depression manageable?

That will give you a better idea of if they're nearing their 'normal' weight. Fwiw by dds periods came back ages ago (a good 8 plus kgs ago) and her state is lots better than it was although there's still a bit of a way to go.

I remember you saying your dd gained some weight at the start of lock down which I suspect was her body gearing up for a growth spurt plus puberty leap and my guess is she will need to get back to at least that weight if not a bit more - sorry I appreciate that's not what you want to hear.

My mental health is definitely struggling atm, I had a panic attack today which I've not had for ages 😕

I think I'm just exhausted tbh.

Hi @NanFlanders - we went through the exact same cycle - admission, discharge, readmission within 2 weeks and then had a few swerved re-admissions including avoiding Christmas 2020 in hospital. It is awful and you feel like a pinball - however, it was useful evidence in getting CAMHS to increase the level of support we were given. We were adamant that we needed CAMHS to see her in hospital and for better coordination. All I can say is keep going

Brilliant news @NCTDN and best of luck with a-levels! I'd agree @Valleyofthedollymix - state not weight is a good mantra to live by.

Things going well here (trying not to jinx!) DD is embracing a new relationship with her body via her PT/weights work - still very tired due to anaemia but hopefully iron supplements are squirrelling away on the inside. Can't believe she's going to be 19 next month - last of her teen years - oh my!