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

@Girliefriendlikespuppies
Also was going to say that my daughter went through a stage of lying, especially about food, but other things as well. It took a long time to change, but just kept talking about honesty, and how I cant help/support her if she wasnt telling me the truth. It's part of the ED - it's so manipulative. But things did get better, partly due to getting bit older and maturing a bit more. Hope it improves for you x

@Bluebuddha10 it's so tough knowing what is right.
I've been to my gp today as I've been having headaches. I'm sure stress is a major factor and my blood pressure is really high. I've gone into panic overdrive (which I know won't help) and read all about how to lower it quickly. Well no Sherlock, the foods I've been eating for the last 18 months aren't exactly helping. So now I have to decide what the priority is. I'm still cooking higher than normal calorie meals for dd but refuse to do different so we've all been eating them. Diet yogurts etc are a thing of the past in our house but if I want a snack I really need to be having these rather than a mullerrice one.
Exercise starts in earnest tomorrow as well.

Hope your GP was helpful @NCTDN and sorry to read your post @Girliefriendlikespuppies

We've taken quite a big step here - we've decided to withdraw DD from 6th form - as you know she was due to take her A-levels last year but we off rolled yr 13 and she re-started yr 12 in September. The school have been utterly fantastic but sadly it is the place where DD's anorexic thoughts are strongest (not just the eating but the horrible self abuse/destructive thoughts too). Her cognition was really really damaged by her anorexia and its taken a while to build that back and although its improving it is still such a challenge for her - it literally wipes out all the energy she has.

She raised it last weekend and after chatting through we agreed that 'holding on in there' in the hope of a magic lifting of the cloud at the risk of the "holding on in there" period doing more damage doesn't seem fair to DD. Plus, even if she did just about get by and university was next, she (in her assertion) would not be safe away from home just yet.

So, for the moment no A-levels. She's been working part time in a restaurant and really loves it - she can be 'herself' rather than "X with anorexia" (although some of her friends at work know she has it but didn't see her with iyswim.) So she's going to increase her hours there, focus on her mental health and actually being happy rather than battling everything.

We've agreed that she will be engaging in therapy (privately after the awful awful experience at adults the other week) and we'll see where we all are in 6/9/12 months.

It is a bit odd that our (including her) plans for university etc are shelved (again) but I do think this gives her the space she needs now. She's just taking a scenic route to where she'll end up in life. So a tough decision but it has already made a difference to her demeanour - and she's booked two short summer holidays with friends which both terrifies and delights me!

So, new beginnings...

@myrtleWilson her mental health is the most I important thing isn't it (along with physical). Qualifications can be done at any point.
Is she comfortable working around food?

She is actually @NCTDN - I posted on the doomed "menus with calories" thread and another poster mentioned how triggering it was being wait staff in a restaurant listening to other customers talking about calories but DD has never mentioned that. She works in a bar/restaurant (with a name nodding to the overthrow of regimes) with focus on cocktails and bottomless brunches so I assume if you go there you know its not a light calorie option so perhaps no-one mentions it.

She is fine eating work food at work but can't eat at school which I guess goes to show how much the wider environment/or the different manifestations of their personalities work in different contexts if that makes sense?

Myrtle** I dropped out of A levels, my mental health at that time was awful (I had severe anxiety which looking back was related to weight loss) I got a job in a clothes store and loved it. It took a year to get myself on track, I regained the weight I'd lost, regained my confidence and ended up travelling to America and doing camp America!

I sort of fell into nursing when I ran out of other things to do 🤣 I had absolutely no idea what nurses even did but enjoyed it and here I am still nursing 20 years later! Finally got my degree in my 30s.

There is certainly more than one way to get to where you want to be.

I really can't see dd being ready for uni in a couple of years.

I'm leaving dd this weekend to go on a hen do 😬 my dad is going to teenage sit. I've given him the low down on do's and donts so hopefully they'll be okay....

@myrtleWilson our thoughts about education for our DD (and to be honest our thoughts about her whole life) have shifted tremendously. The traditional path of GCSE, A Level and Degree aren’t now the typical education journey for many, our friends daughter suffered a neurological condition in her late teens, now at University in her 20’s she has a maturer approach to learning than younger ones on her course.

@Girliefriendlikespuppies hope the hen do went well. I’m still living in crisis mode and haven’t socialised for six months since this started - I’ve missed quite a few events due to me not being in the frame of mind, feeling of guilt leaving DH with DD alone - even if DH and I went for a meal I know all that we would talk about is DD, it feels like anorexia steals all my time and thoughts - do these feelings ease?

I must admit home life dominates my thoughts, DD hasn’t spoken to DH nor me for a week now, just shrugs and gives yes / no answers when pushed. This is the same week that some activities have been ‘unlocked’ as she is now 93% wfh - logically we thought this would create a positive shift of mood, but I realise that rationality and eating disorders don’t go hand in hand. This is hard, the whole mood of the house and everyone in it is affected, and how do you communicate with the sufferer when she doesn’t speak - I’m bit lost.

Hope everyone had a better bank holiday weekend than we did!

D1 I've only recently felt able to leave dd, she's now over 100% wfh and things are a bit easier. That said it is still stressful and takes a fair bit of organising. I don't enjoy socialising like I used to, for a start I've gained a stone and don't feel great about it.

Had a small breakthrough last night, dd didn't come on the evening dog walk. She was playing an online game with friends and didn't want to come with me. I nearly fainted! First time in two years she's said no to the opportunity to exercise. There was some repercussions at bedtime and she suddenly became very anxious but I'm hoping she worked through it and I distracted her as much as I could.

@Girliefriendlikespuppies - I watched a lived experience video where a sufferer explained that they would ritually walk around the block a couple of times with her father after dinner time - one day he asked if she wanted to go around again and she said no; she knew then it was the anorexic voice in her head that was telling her to keep walking, she said at that moment she realised that AN was not her friend. Here’s hoping that this exercise behaviour is starting to fade for your DD.

We have a very angry DD to deal with at present. Any tips on opening up communication when getting the silent treatment, tonight we will push this as it is not civil and is very rude, all the family pick up on it, grandparents included.

D1 I remember the angry phase, dd was vile to everyone. She was particularly horrible to my mum which was heartbreaking as they've always been very close.

I'm not sure re punishing her as I sort of accepted it wasn't really her, she was angry at being ill and having all control taken away from her. In a way I could understand her anger. I think everyone has their line in the sand though in terms of what behaviours they will and won't put up with ED or not!

In terms of opening up communication you have to pick your timings I found, so in the evenings when things were calmer. Dd was very against any physical contact for ages but she would sometimes let me massage her feet.

Dd did self harm last night which I assume was her 'punishment' for missing the walk 😕

@Girliefriendlikespuppies I’m sorry to hear your DD self harmed to compensate for not having the walk - I have never before been faced with anything as complex as this cruel illness, feeling as though being constantly in a boxing ring not knowing what is coming next. I take comfort what you say about the angry phase hoping the phase will pass and similarly dear PIL are subject to DD’s mood swings.

We are constantly looking for common ground and an ‘in’ to open communication and know if we push it then the barriers go up.. The breakdown in communication is graduating to refusal to do usual things and obstinance to even agreeing to medical examinations, I would never have thought this behaviour of my daughter 12 months ago.

What I would say for those who are close or at WFH it can be extremely linked to the strongest feelings of self hate. Their heads can be screaming with fat thoughts and unable to be open about them. I know we had to remove DD whole wardrobe and start again. she has to wear clothes especially jeans a size bigger. DD still suffers but she can communicate better now, she cried alone in her room for 12 months after she first weight restored just feeling so overwhelmed with her body and the anorexia.

@Boulshired thank you for the insight, the return of DD period this week has no doubt added to her distress. Her school friend came for dinner this evening and they were laughing and having a good time upstairs - seems the angst is saved only for DH, DS and me and the PIL. I get confused, is it the AN or the teenager striking out for independence from her parents.

@Girliefriendlikespuppies I can see what I think are opportunities for communicating and finding common ground, will endeavour to break the silence this weekend.

How's everyone doing?

We're plodding on as always, dds anxiety is high as exams start next week.

I've been very stressed trying to find a prom dress. Dd has very set idea on what she wants but unfortunately my budget isn't £££s!

I can see dd is still putting on weight, I don't know what she weighs but I'm guessing we're well over 100% wfh probably closer to 110% wfh now. Can't say mentally she's seen the light yet although most of the ocd behaviours have gone (massive difference going for a walk with her this year compared to last year when she was jumping around touching signs constantly.)

She has a few stretch marks which have upset her but not caused any further restriction. I'm wondering if the stretch marks are because she didn't grow for almost a year at the beginning of the ED and then grew quickly to catch up.

She missed another evening walk and there was no self harm which is actually massive as that would never of happened even a few months ago.

She's still not able to eat freely though, I still make and prepare all her food and she still leaves small bits of food constantly so still a way to go in that respect.

@Girliefriendlikespuppies breaking the ritual of the evening walk would I guess be a big step in the right direction. So many habits we have had to tackle, from using different plates and spoons to wiping hands on the table cloth etc etc - not exercise compulsions I know but ED habits that need to be tackled.

We’re having a rough time, DD not communicating with us, when addressing this behaviour we received a torrent of verbal expletives, months ago it broke my heart when DD wished me and DH to ‘F’in Die!’ - now we are sadly battle weary - phone and computer are banned for a week (punishment increased for not handing the equipment over when asked). Bad language still continues, really considering never giving these back and pulling DD from school where there are bad influences.

Anyway me and DH not speaking now, not his fault but it seems DD explodes with rage against me when he’s not around (either at work or looking after DS) and I’ve just now unfairly taken it out on DH - feels like anorexia is winning splitting the family apart. Decided not to go abroad on holiday this year, DD would only ruin it for us all.

DD is back in the dining hall at school, seated next to the teachers table (she was not happy about the proposal but has no choice).

Hope others are having a better time!

@Girliefriendlikespuppies great news about breaking the walk cycle. DD looked at me in horror the other day when I suggested a walk, but a year ago she was obsessed with them. So habits can be broken.
@D1ANA22 my marriage was at breaking point last year. Everything was due to the ED though lockdown didn't help and made everything ten times worse. I think what made me stick at it more than ever was that DD knew it was because of her we were arguing all the time. If we had actually split it, it would have compounded her guilt and made her mental health even worse than it already was.

D1 I really feel for you, I can remember the absolute hell of the early days. Dd was full of hatred, hated everything and it felt hopeless.

For us the mental state has improved bit by bit with weight gain. So my advice is just keep getting the food in, I literally channelled all the despair into feeding dd and getting the calories in. When dd had been particularly vile it was quite satisfying to add half a tub of double cream to her dinner, like sticking two fingers up at the anorexia!!

It also helps to separate them from the ED, they feel like they have no choice but to behave like this. The ED is holding a gun to their head 😕

We've had a good week I think, dds been offered a job! Just one day a week at a big garden and household store but will be a good chance to get some experience and hopefully good for her confidence.

Last night she was at her induction which was from 5pm - 8pm and I was getting stressed trying to work out how to fit dinner around that. Dd suggested she have her pudding after school and dinner when she gets in from the induction which worked brilliantly. In fact after her dinner she asked if we had any crème eggs!! I nearly fainted (although obviously kept a good poker face!)

Annoyingly we didn't have any crème eggs left but I found some other chocolate which she ate instead.

First time in over two years she's asked and eaten something 'extra' 😲

@Girliefriendlikespuppies that’s really positive news - the chocolate and the job, I remember my first job and it really boosted my confidence and got me out of my shell - at 15 my world was really only school friends and family, my part time job working with others in an adult environment broadened my outlook, and that was pre social media, going into the real world can only help your DD.

Matters have escalated at home, DD raged this morning - expletives and smashing up the house room by room. The fear and anxiety have manifested into pure anger, DD now in her room.Yes, we’re focussed on getting the food in, it really is food is medicine.

D1 have the ED team suggested meds? We managed to swerve them by the skin of our teeth but I know a lot of posters on here have found meds to be a game changer. Either olanzipine or something for the anxiety such as anti depressant.

@Girliefriendlikespuppies thank you for the advice. We raised the question of meds for anxiety with the eating disorder service - instead they offered 8 weeks of CBT for anxiety. Given that DD doesn’t communicate at any of the medical appointments we have put this on hold anticipating that it will be a waste of time for both DD and CAMH at this point in recovery. I have experience of sertraline for myself and find it beneficial - I have taken antipsychotics (not olanzipine though) previously and they left me feeling drowsy. We are not averse to meds for DD - what is everyone’s experience with their DC?

@D1ANA22 my daughter was prescribed olanzapine but it didnt work for her at all . But I know of others that she was in hospital with who took it and it seemed to be like a miracle drug for them. My daughter takes an anti depressant though, which does help with the low mood but has little effect on the eating

@Bluebuddha10 thank you for sharing your experience. DD’s rage seems to centre on boundaries, we have taken her phone due to bad language. She eats 3x3 OK, the rages stem from saying no to demands for computer and phone. I rationalise this as her having feelings of anger that she can’t emotionally process and that manifest into rage, swearing and smashing up the house as well as a continued silence. I expected DD to despise us as we refeed,, this is another level than earlier behaviours. She is 93% wfh and periods have resumed (one) in the last fortnight. I do wonder if this has anything to do with the escalation of bad behaviour. Her mood can be fine with her friends and her brother, it is us as parents who are on the receiving end of the rage.

i am probably asking is this what to expect as we go though recovery at this stage? DD diagnosed in October 2021 at 68% wfh, 10 days hospital and FBT at home since December 2021.

@D1ANA22 it's really a hard to know but I think the rage gets all mixed up with normal teenage behaviour, hormones etc along with the ED behaviour. My daughter went through a stage where she threw things (at me too) but mainly hurt herself more than anything else. Not sure how old your daughter is, but mine is now 21, and her behaviours/frustrations have matured a bit - though the ED is still very dominant. I dont know what her wfh is, we've only ever talked about BMI with her ED team over the years, we still stuck on BMI of around 14. But shes not gone through puberty so maybe I still have that hormonal phase to come yet! But I think the rage is part of it all. Even though their brains are supposed to work better when they are weight restored, from my experience, that stage is really difficult for my daughter, she really hates herself so much whenever she gains weight. Which is why shes not recovered so far We've never really cracked that side of things.
It's tough, hope things improve for you x

@Bluebuddha10 Thank you for the insight. I imagine this is a mix of hormones and the ED voice as you say; confiscating a phone from a 15 year old is normally probably met with defiance, and for an anorexic the rage is amplified. Yes at 93% wfh and having restarted her period last week then a perfect storm for hormones and the ED.

Great news about the job @Girliefriendlikespuppies - anything that opens up our DC's worlds is less space for the ED to operate in - hope she really enjoys it!

@D1ANA22 - am so sorry you're experiencing such a ballooning of emotions/anger - we used to say that when DD got to that state it was like she had gone Dark Willow (reference only really helpful to the Buffy fans!) Has her CBT talked about a 'safety plan' in terms of managing her green/amber/red phases? Dd did one with her IHT (intensive home support team) and actually was really helpful - I've shared ours before on this thread and more than happy to do so again...

Mainly popping on to offer some hope (and am keeping my fingers crossed so I don't jinx this!) - I started the first of these threads almost two years ago and am currently looking at a very different daughter. It has been hell -no denying that and we've had to make some difficult decisions about future paths along the way.

However, as of today, DD is eating well, is developing a positive relationship to her body thanks to her PT/gym work (I was v anxious about this but hold my hands up - she was right), has left school/uni path - I saw a meme that said 'you can't heal if you spend your time in a place where you had trauma' and I think school definitely fell into that category. She's doing really well at work - where they know about her ED but she isn't known by her ED and in a month she's off on holiday with her best friend and my worries are about a 19yr old losing her passport abroad, or getting hassle from men rather than anything ED related.

It really does feel like we're getting our girl back and we missed her so much

So, I hope for those who are at earlier stages in this journey this may give you some crumb of comfort because I know exactly the despair that you may be facing.

I'll stick around and will offer support where I can - you're all amazing and your DC know that - they're just not always in a place where they can say it out loud - but they will.