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

Great advice (not) from a professional

Hi @BeethovenNinth @NanFlanders - sending solidarity infused hugs. It is horrific and I don't think anyone can really understand unless you've been through it - it is just such an alien, extreme situation.

Reviewing meds is a great option Nan We had a head banger too - we still have some of the marks on the walls now. When DD was at head banging stage we knew she was in her "red" moment - what really helped for us was working together to help her identify & say when she was in amber and then we could put in place diversionary activity - so at amber we would play catch or we'd get her some ice cubes to hold whilst she lapped the room. Do you think your DD is able to draw up her own safety plan?

@Girliefriendlikespuppies Thanks. I am on the Facebook group, and got some good advice from there - and also got good advice from Eva Musby book and seminar. But what do you do when she just refuses?? I've confiscated phone, no school since Jan, sat in her room trying to persuade her to eat until she falls asleep. I replaced three lunches the other day as she kept throwing them in the bin. Tried replacing crumbs with a piece of another bar and she starts banging her head - forehead is all bruised. Great news about your DD getting a job - and well done on turning it around with the snack!

I think on the fb group they'd say wake her up and kept going with the food but in rl I'm not sure I could do that.

I know I definitely got to a place where I gave up as it's so mentally and physically exhausting. In the end I focused on getting the three meals in, and took the morning snack out as it was just too hard to get dd to eat it. She has an afternoon snack and a big pudding which I consider her evening snack.

I also compromised on letting dd leave some food although I regret that now tbh as I feel like it's going to an impossible habit to break.

Are you able to load up everything she does eat with extra calories? Double cream in the porridge was a game changer.

My dd also head banged, it's so distressing.

I was tempted with the waking up thing, but it was an olanzapibe sleep, so that wasn't going to happen! We've been given strict instructions by hospital not to load as it will increase the distrust she feels anyway: she mainly eats prepackaged because I added butter to mash once! ( I actually find the prepackaged thing disproportionately upsetting, as I've always cooked from scratch and we did used to set time aside as a family to eat together.)

Oh God Nan I know it can be controversial to load up their food but I honestly don't think you'll get anywhere just giving her pre packaged food.

Your dd can absolutely trust you to give her what she needs, what she needs is butter, cream, lots of fats and calories to repair her poor brain.

If the ED doesn't trust you then fine I can live with that.

I personally would completely ignore the hospitals advice, go back to home cooking and ramp up the calories. Your dd is going to be distressed regardless so it might as well be for something worth fighting for.

If the anxiety is off the scale they might need to add in an antidepressant as well?

@NanFlanders is she actually eating? Does the threat of going into hospital work when she refuses?

@NCTDN We did have a plan in place that if she refused a meal we went to hospital for a NG feed. Used it three times, but then hospital said it was doing more harm than good - long hours in A&E etc. Then refusing more food because full of Fortisip.

@Girliefriendlikespuppies @NanFlanders
I think its probably divided opinions about loading. I felt that if my daughter gained weight on what she thought she was eating, she would restrict even more . And if I told her that no it's because I added cream/butter whatever to it, she would stop eating altogether and never trust me again, which would cause more issues really. I guess it's not one size fits all. Maybe loading works for some but not others. We also went through a head banging stage and other self harming. It's really hard. I personally wouldnt be waking my daughter up to eat. The more tired they are the more irrational they will become. But really there is no right or wrong, it might be the right approach for you. I do remember being sat at the dinner table for many hours coaxing my daughter to eat - often unsuccessfully.
It's just a really difficult situation to handle, and every day is a new challenge.
Hope things improve.

@NanFlanders so sorry this is so hard for you all right now.
when she refuses to eat or gets upset that is the phrase to use. ‘I am so sorry this is so hard for you right now’’ Or ‘I can see this is really difficult for you’ or ‘I am so sorry this is so difficult for you’ but.....’this is what you need right now’. And nothing else. Just sit there and be present physically but say little. The same applies if she is in a rage or hysterical. My DD calmed down so much faster if I said very little but made it clear by my physical presence that I wasn’t going anywhere. I learnt this ‘distress tolerance’ when I had reached breaking point and it is enormously helpful. I was getting distressed myself which was making everything worse.
distress tolerance is the best thing to learn at the moment, for your sanity. There are good videos on line about it (FEAST have a good one) but essentially that is it. Don’t make the distress yours. Remember it is the ED that is distressed. Remember the more angry she is the more you are poking the ED and the more therefore you are doing right. You have to poke the beast you can’t appease it as that isn’t getting your DD better,
Your Dd is terrified. She is being held hostage by her illness. She is being screamed at constantly in her head. Being told she is fat, ugly, a coward etc etc.
at the height of my DD illness I never left her side. Outwardly she hated it (well the ED did) but she has since said that it helped as it gave her the courage to stand up to the ED little by little. It’s exhausting, I was hit, sworn at spat on etc etc.
I hid calories. DD is now pretty much recovered and has a mostly normal relationship with food. And I have stopped. This wasn't about trust for me. The quicker they put weight on the better really. It’s so distressing anyway for them.
my advice is to go back to home cooking. Especially if that is what you do as a family.anyway. The ED will kick off but eventually it will settle.
take each meal one at a time. Eventually you will be able to take each day at a a time. It feels interminable.
But please know that recovery IS possible. You can get your DD out from the grip of this monster and back to a life.
She may need more olanzapine can I ask what dose she is on?

And use distraction at meal times. Put the TV on whilst eating, play a card game anything that helps. We did a lot of colouring, Lego etc.

@NanFlanders that sounds so hard. Olanzapine was miraculous for DD1 but it doesn't work for everyone. Aripiprazole is an alternative which works for some young people.

Loading is controversial. For DD1 it was slightly different. She wasn't fussed about putting on weight, she just had a notion that food was bad. So anything we could do to increase the value of every bite was worth it, so she was having to eat less.

Do you mean building Lego as you eat? I like that idea. Last night we got through dinner thanks for the great British sewing bee on TV. But I’m wondering if something else better instead.

we had some good days but since meeting her counsellor and dietician (we are new to this) she has got worse with the anxiety. It’s perhaps as simple as not liking opening up to new adults

the distress tolerance tips above are brilliant and thank you. I am making this my distress and I need to undo that

Aaargh.
Daughter found half a pot of mousse in the fridge and realized I'd been serving her a pot and a half rather than one pot (I'd never told her it was one pot, but she'd assumed). Says she'll never eat anything I give her again.
Grateful for any advice on how to handle this.

Another newbie here.
DD is 13, and has not at all liked being bigger and more developed than her friends. Started periods while still at primary school; little breasts from Yr 3/4.

She's been eating badly for 2-3 months now. She started not to eat breakfast, and I now realise she seldom eats lunch at school either (she's meant to have school lunches, but doesn't... goes to the library and hides away instead).
I'm in a total panic about it all, which isn't helping. I don't know where to turn, or what to do. Nobody is going to worry about her clinically at the moment - she's fine weight wise, and she does still eat a reasonable meal most evenings.

What do I do? She absolutely won't tell me what's going on - she's an intensely private person. Won't tell DH. Not a chance she'll tell her brothers, one of whom is being pretty vile to her (he's having his own struggles). I feel that things are suddenly escalating and spinning out of everyone's control and understanding, and I don't know where to look.
I feel a total fraud at the moment, reading other people's far more acute struggles, and also utterly terrified that this will be us in a few months time.

@NanFlanders allow her her distress. Allow her to sit with that anxiety. Then firmly let her know she will be eating what you provide as food is medicine and you have her back. You need to be her courage against the illness. You can say that if it helps. You can say that you will not let the ED 'win' or keep her ill a day longer than neccesary and when she feels like she cannot fight you will do it for her.
Anxiety is like a wave. It rises quickly and then eventually subsides. It's impossible to stay at the peak. At the peak there is no reasoning with them. So don't try. But use every tiny hurdle as evidence of her ability to live with the anxiety and survive. Write them down then next time she is really anxious (prob next meal/snack!) remind her with specific examples that she has got through such feelings before and survived. It's about survival and eating at the mo. Don't add any other pressure such as feeling happy, smiling, enjoyment. That can all wait (for everyone involved sadly...)
The reason her anxiety is higher after seeing the dietician etc is because the ED knows it is being attacked. The ED has redoubled its efforts to get control back. Its screaming at her. It's prob nothing to do with seeing new adults. She is scared of her ED.
I can't say it enough that being calm, implacable and boringly repetitive is the way forwards. Imagine she is a toddler. Having a tantrum. Make her safe and wait it out. She has to learn to live with the anxiety herself. She has to build evidence that it will not kill her. She currently believes it will. But reassurance will not help her. Reassure once (you are safe, this will pass, you have done this before when x happened) and then don't again.
However you will make mistakes, lose the plot, shout in frustration, cry, lash out. We are human. This illness is so hard to deal with. Find times to hand her to someone else. Join a support group (Beats on line support groups were my 1.5 hours of me time a week for months and months). But allow yourself to get it wrong. Then admit it to her and apologise.
Sorry if that sounds a bit preachy but this worked for me. (Very very slowly and after I had made a massive amount of mistakes and not without a high personal cost).
And yes lego whilst eating. Or the promise of lego once finished. (I spent a fortune on a disney princess castle). ... Find a series you both like (we watched Anne with an E which is lovely and wholesome) and watch an episode a meal. Anything that helps.

@Lottsbiffandsmudge That's a brilliant answer. She's doing a GCSE in the dining room now. Rehearsing what to say when she comes out.

@sunshineandsuddenshowers sorry you have had to find us and it sounds like you are in a very scary place. We have all been there. It is terrifying I know.
first things first. If she has been eating less than 500 cals a day for that time or has lost a lot of weight from where she started you need to book her in to see her GP for tests. (Bloods, ecg, height, weight etc). Do not be fobbed off because she is not underweight. It doesn’t matter what weight she is, eating so few cals a day at her age (or any age) can have hidden unseen dangerous consequences. If the GP will refer you on the basis of what you have described to us then great (depends where you live, how good your GP is etc etc). Try hard for that, she has many behaviours of an ED. Is she still getting her periods?
But in the meantime I would suggest you begin FBT on your own. FBT is family based therapy and unless hospitalisation is required then this is the route you would go down with CAMHS/an ED team anyway. The less time she stays in this state the quicker recovery will be, do not wait for a referral to come through.
Essentially take over all her food and provide 3 meals and snacks a day and ensure to the best of your ability that she eats it. As she doesn’t sound like she needs to gain weight I would go back to where she was breakfast wise and pull her out of school lunch and bring her home (work permitting) or if school are any good get her supervised at lunch, you could send a packed lunch in with her and ask someone to watch her or you could do a video call with her. Provide snacks too. It’s about re-establishing a healthy eating pattern for a growing teenager.
It’s half term here next week is it for you? If you work try to get the week off and really focus on upping her calories and re-establishing a solid eating pattern. Meal plans are really helpful I did a weekly one and it allows for fewer ‘surprises’ and is really helpful. I detailed everything (so saying a ‘bowl of cornflakes’ isn’t detailed enough I had to say ‘with milk’!)
she will hate it (or rather the ED will) and she will kick back- see above for all my tips on dealing with the lashing out, expect her to suddenly resist dinner too. It often gets worse when you ‘call it out’.
If she is ‘overweight’ (and I hate to use that term) then I suggest you offer to help her with a sensible diet (not a restrictive diet I mean help with a balanced diet) and an exercise plan BUT ONLY once she is eating properly and regularly again. Maybe use that as an incentive?
well done for catching it early, it took me months to realise my daughter was ill. Which made recovery harder. And I felt such a fool when I hadn’t noticed her wasting away.... it’s an insidious serious mental and biological illness and the quicker you act the better.

Hello! I’m working my way through these threads whilst waiting for some things to swing into action with my 14yo D who is severely underweight. She’s seen the GP for all the requisite tests and been referred to CAMHS who are seeing her in a few weeks but meanwhile obviously we are trying to get her weight up if we possibly can, and she seems to be on board with this.

We have a plan for this and she is (mostly) cooperating but can anyone advise on what we should be aiming for in terms of weight gain? She is OK about weighing herself; is there a standard “kg per month” or similar, that would show it is working? Of course we can work it approximately from calories in and calories burnt but it’s much harder to judge with different metabolism, activity etc? She is quite results-driven and I think seeing numbers go up would really help her (or is it a strict no to weighing? She does want to be healthy but I think is uneasy about it all being so full-on without seeing any outcome)

It would help us as well to see if we could get off high-alert for a couple of weeks and focus on the plan, if it seemed to be working, but that is more about our (mine and my husband’s) state of mind which of course is just a secondary thing. As a newbie to eating issues I’m getting a lot of advice and info from MN and elsewhere and was directed over here @myrtleWilson but I can see there is a lot to learn so thank you for all the experience you’ve all shared

@Lottsbiffandsmudge this is so helpful, and it makes me feel tearful and terrified and supported in equal measure to read it.

So: although we've been worrying and wondering for quite a while, things go up and down and to and from and she's still a completely good weight. Still getting periods. I think she probably is eating over 500 calories most days, and way over that some days. But for example on Sunday she didn't eat a thing. Then felt so faint and frightened by that on Monday morning that she did eat a proper breakfast - which of course after NOT eating for a while made her feel rubbish... I haven't weighed her in forever (I barely weigh myself), but she looks a really healthy weight to me: I've never had to think about her weight either way.

GP appt (phone...) is scheduled for 7th June, which seems ages away, but we're away for half term, so it's not all that far off really. What do I want to push for? Does she need to be seen by an ED team, or do we need to focus on getting help for her with whatever the underlying set of issues driving her unhappiness is? I don't know what to be asking for, particularly as she really doesn't present as someone who is starving herself.

FBT: where do I look for that? I spent lots of this morning going through counselling/psychotherapy websites, and it feels as if there are so many charlatans... how can I tell what's worth pursuing?

I'm talking to school tomorrow. It's very close to home, so she could, in theory, come home for lunch every day (though she would HATE that, she hates doing anything different from others). I don't entirely trust the school (it doesn't have a great reputation for pastoral support), so again I'm not sure what I should be asking for.

Just to get things clear in my own mind, and to make sure I'm not saying the wrong things: what I need to be saying is - this isn't a battle of wills between her and me, it's between us and the ED. And my job is to make sure that she eats what she needs to eat, in a regular, social, pattern.

Half term: yes, it's ours too, and we're going away all together. With another family. Self-catering cottage. I will need to talk to the other parents, won't I. Maybe joint meals and picnics will make this all easier? Or not? I can't work out if I'm telling myself fairy stories - honestly, I can't believe I'm here...

Thank all the stars in heaven for generous people online. Thank you thank you.

@TheHorrorOfIt @sunshineandsuddenshowers - welcome. Sunshine - my daughter sounds like yours - for her it was the amount of weight loss in a very short time that was of concern - she was admitted to hospital for "re-feeding" following her first appointment at CAMHS. I know you won't but don't underestimate the damage that can be done by effectively a rapid starvation event- two years on DD still has ongoing gastric issues, cognitive challenges and other stuff. We were fortunate in that the private counsellor she was seeing for restricted eating/body dysmorphia was well integrated into GP system etc so when she red flagged DD it was taken seriously.

Horror re your question about weight gain - I guess it really depends on your DD's state of mind re numbers. Is there a sweet spot that shows progress rather than rapid gain which may trigger distress and restrictive eating, or the reverse - do you think DD is able to cope with larger gains knowing it gives her more freedom etc. Would she be okay with blind weigh ins with you giving her a general "trajectory" discussion?

@Lottsbiffandsmudge has given great wise advice on relating to your DD and the ED. The only thing I'd add to that is I found it (belatedly) important to recognise and acknowledge that the ED is giving DD something she wasn't getting elsewhere. Yes, the ED was a cruel, vicious voice, but at times DD felt it was also the voice that really knew her. Once I'd got over my ego on that point and recognised that the ED was giving her something she needed, it helped change my mindset. Previously I was logic based - the ED wants to destroy you (this was true) and I couldn't understand why DD didn't at some level understanding that. Recognising and telling DD that I understood what the ED "gave" her was an important part of our journey...

@TheHorrorOfIt a quick rule of thumb re weight gain is an extra 500 cals a day over that needed for weight maintenance leads to around 500g gain a week. Obviously the absolute level of cals depends on so many things! You can get average cal requirements for a teenage girl on line as a start point. But if your dd is still growing, is going through puberty or is active (or in our case was all 3!) more cals will be needed. My dd was on 3500 a day to gain 500g a week (btw some weeks will be more and some less even if cals stay the same!). I'd suggest starting a lot lower than that. We worked up to it, starting with stopping weight loss, and I only got to that level by adding cals through double cream etc

@sunshineandsuddenshowers Hi there - I am so sorry you are going through this. I have experience with a situation which is very similar. My advice would be to push for lunch at home but be discreet about it with your DD (I think you mentioned that she hides anyway so would people notice?). As well as using that time for eating, I would also work on bringing your DD out of her shell and trying to get her to articulate why she is unhappy. This will take time but should help.

Also, have a look through these videos vimeo.com/orriuk - they are very good at explaining EDs.

Also, for everyone, these free resources might help DDs/DSs with affirmations / mindfulness etc as good grounding techniques zannakeithley.com/resources/

Our DD is so angry - she can’t be pleasant and tells us to f* off and die, doesn’t communicate just grunts and is thoroughly awful to sibling (hitting and punching). We are at weight restoration and refeeding and I’ve read that this anger is to be expected, is that other people’s experience? I guess we’re looking for support on MN and that we are on the right track.

Just had breakfast and been told to ‘get out of my face’ - everyday starts like this and it is wearing me down tbh.

Well, things are (sort of) moving here. I don't know if DD ate dinner last night - I was back late from work, and she wouldn't say/nobody knew, but she certainly didn't eat breakfast - despite making bread for it...

Have just spoken to school, who agree she can come home for lunch, starting tomorrow. I am a bit terrified about this, tbh. This sounds so ridiculous, but what do I do - have lunch ready for her to eat? Not let her go back to school until she's eaten it? What happens if she eats some but not all?

And what about breakfast? Do I say she can't go to school if she hasn't eaten breakfast? (This is easier said than done - she can just walk out of the house, after all...)

And (sorry, lots of ands): 3 meals 3 snacks - this doesn't mirror how we eat as a family (we aren't snackers), so is this essential?

I've also been casting around for support for DD. School will refer her to the Mental Health team - they say this will be quicker than going for a CAMHS referral. Local teen psychotherapy centre were pretty vague, saying they have a course about families and food which will run 'some time', so I don't hold out huge hope there. Where do I go? Which doors should I be knocking on?