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Eating disorders

Teen Eating Disorders - Thread 6

1000 replies

myrtleWilson · 03/02/2022 23:06

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

Here is a link to 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!







OP posts:
NCTDN · 26/03/2022 09:04

@koalacliphugs I've no experience of them being sick but didn't want to read this and leave with no comment. All I would suggest is to keep going back to a&e and your gp. Because of her age I think the only way you could override her is to push to get her sectioned and argue that her mental health means she doesn't have the capacity to make rational decisions?

Rustnot · 26/03/2022 14:16

@koalacliphugs adult services are very different to CAMHS and without consent you probably won't get very much information.

Behaviour change and recovery take time. You might not see any improvement for a while.

I think some of the questions you need to ask are

  • how often is she binging and purging?

If this is frequent enough, she should be offered weekly medical monitoring - bloods, weight and ECG.
  • is she attempting regular eating? This is hard to do on your own but it's the first key step in recovery. Start with one regular meal a day and build up.
  • what support is she getting from her care coordinators? I would expect this to be additional to involvement from the ED service and would mean twice weekly contact.

From what you've posted I think it's unlikely she would be sectioned. If her BMI is not below 15, if she is not suicidal or experiencing symptoms of psychosis, I imagine her team will continue to try and treat her in the community. Having capacity doesn't necessarily mean always making decisions that are good for your health, but that you understand the decisions you are making.

I am not sure what presenting at A and E will achieve. The most important thing is that she is getting regular medical monitoring. Try to encourage her to keep hydrated and to eat something small after a binge and purge episode, as that will help to stabilise her blood sugar.
DarkBlueEyes · 28/03/2022 17:05

Oh boy @koalacliphugs that is a whole lot to deal with - I am so sorry and wish I could say something to make it better. I have a good friend who is currently struggling with her 18 year old and it really is a minefield. Have you heard of Orri? I think they take that age, and I think the NHS can refer.

I have no idea what to suggest to you as it sounds so very hard with your own issues.

DD14 was purging for a bit, and the only way I could think to handle it was to not let her out of my sight after she'd eaten. She hated it, Ran away, locked herself in the bathroom (I unlocked it and followed her round calmly while she was ranting and raving). She has a youth worker and told the youth worker who luckily backed me up telling her I was keeping her safe. In the end she gave up, but we were lucky in that she's young AND she'd only just started so it didn't become ingrained.

The most important thing is that you get help. Are you on medication? Not ever been a fan of SSIRs but basically they have saved my life as I was suicidal in August/September last year and I am so much better now, which impacts on how I deal with DD. i cannot face the thought of counselling as I don't want to relive things but everyone is different and maybe you need someone to talk to? Also second the EDSUK facebook page as many of those women are badass warriors with great advice.

Girliefriendlikespuppies · 30/03/2022 09:34

How's everyone doing?

Things have been up and down as always here! Dd had a sleepover last weekend and invited 4 of her friends. I actually went out and left them to it 😬 she had a really good time, they were (mostly) well behaved and dd even joined in with pancakes and croissants with her friends for breakfast.

Unfortunately by Sunday evening the come down had well and truly kicked in, she had a huge meltdown about how greedy she was. This cumulated in her punching a wall and self harming quite badly 😥😥

The only positive was after she had calmed down she did talk a bit about how she was feeling. She said generally the ED 'voice' has been much quieter recently but when he does kick off it's worse. She described it as he hides behind a closed door but occasionally he pokes his head around to remind her he's still about.

I was away at a conference Monday and Tuesday and left my mum in charge, they seem to have muddled through and even though the conference was full on it still felt like a break for me just to have to worry about myself for two days!!

Anyway I hope everyone is okay and the silence is just indicative of everyone plodding on.

D1ANA22 · 30/03/2022 10:53

Hi All, I have read all the posts from thread 1 to 6 and it is reassuring to see the support that you all provide as parents / carers for your DC, my experience is that this illness isolates families and only those who have been / are going through this really understand and empathise.

Our position is DD 15 and looking back she was restricting dairy from Sept 2020, then lost weight, three visits to GP from April 2021 to August 2021 and told to keep monitoring her weight. Loss even more apparent after school half term October 2021, locum GP made an urgent referral to CAHM’s and we instigated FBT at home. Despite our best efforts our daughter was very resistant eating to plan for two weeks so further weight loss lead to subsequent inpatient admission at 68% wfh at the beginning of December 2021. Discharged after two weeks, continued FBT at home and now 88% wfh, returned to school (no PE). 3 meals and 3 snacks are eaten with some flexibility, although main meals never completed - small bits left on plate to appease the ED voice which is loud. Behaviour appears to have improved slightly, no longer banging head on walls and damaging household items however verbal assaults and lashing out continue.

My question is how do you deal with your DC’s socialising and the meals and snacks, particularly as the school holidays approach. Meeting her friends provides a mental boost, although whilst snacks and drinks are taken out with DD we cannot monitor if they are consumed, any food purchased for lunch then we ask for receipts and statements. This is by no means foolproof but provides some level of monitoring. DD obviously hates this, at a time of life when she should be having greater independence the ED means more monitoring, supervision and control from parents (I would have hated this at 15 years old).

We were due to go abroad for two weeks which would have allowed us to control meals on holiday, however DH has covid so we can’t travel. I am planning days out over Easter where we can be in charge of food, however for the days in between DD will want to meet her friends - from your experiences I would appreciate your advice how to manage these situations as best we can. Do you limit your DC meeting friends? Perhaps have them all over to our house? How to confirm that snacks and lunches have been eaten outside of the house? At 89% wfh how often should she be going out, if at all (given the weather there has not been much socialising before now - however I foresee the Easter holidays presenting challenges).

Your comments and advice would be appreciated, we are still relatively new to this and struggle to decide what to do for the best.

Thank you.

balzamico · 30/03/2022 11:50

@D1ANA22 my dd has a couple of friends who've had/ got eating disorders. When they've been out locally, they've had to go home to eat their snack/ meal and then can come out again. All totally accepted by the friends who were really concerned by their friends appearance and just wanted her to get better.
Be really careful when they start drinking though - it's stating the obvious that a girl with a very low body weight who hasn't eaten will not have a good experience with alcohol but they've had some tricky times

D1ANA22 · 30/03/2022 12:38

Thank you Balzamico for your comments - I hadn’t thought that far ahead for when my DD is old enough to start drinking alcohol, a reminder of what a minefield EDs are. Sadly DD’s friends whilst they are aware of DD’s illness, they are not very thoughtful or considerate (I’ll stop there as I could rant on about situations that have occurred when they are together).

Rollergirl11 · 30/03/2022 13:44

@D1ANA22 my DD would either quickly FaceTime me whilst eating her snack or another good tip that worked well for DD is that she would film herself eating using the time lapse function on her phone and then send the video to me. It’s a bit less unobtrusive then FaceTiming and allowed her to just continue whatever she was doing at the time with her friends rather then having to speak to me. And I was fully assured that she’d eaten.

D1ANA22 · 30/03/2022 16:07

Thank you Rollergirl11 for the suggestion, I’m going to implement your time lapse recording suggestion - I expect resistance but making it conditional for DD to go out with her friends should overcome her reluctance.

Girliefriendlikespuppies · 30/03/2022 20:29

For us freedom with eating at school and when out with friends was allowed as long as dd continued to gain weight. Any weight loss resulted in immediate loss of those 'privileges.'

Unfortunately though I think unless you see them eat you can't trust that they have. Even video calls etc can be manipulated if they really wanted to. I suppose you have to gauge whereabouts they are with eating generally and how much resistance you're seeing at home. If there's still lots of ED behaviours then I would suggest full supervision is still needed.

D1ANA22 · 30/03/2022 20:50

School meals are supervised and the staff have been great; I have my doubts regards to DD eating with friends and although meals at home have been going well, coincidently we had our first refusal of dessert with dinner this evening for a long time (now waiting for DD to clear the jam sponge off the kitchen floor) - I think it maybe too soon for any autonomy of food with friends. School has finished today for this term, I feel that this is going to be a long Easter ‘break’ …

DarkBlueEyes · 31/03/2022 16:27

@D1ANA22 I'm afraid having an ED does limit what your daughter can do - and finding the balance is really hard - because you want them to see what they are missing out on!

We initially did the filming thing but as it got worse that just didnt' work. So we had to do snack before she went and time it so that food was eaten either side of a visit OR better still, friends came to us and I fed them all!

Now, thankfully, I can trust her more but we still insist on 3+3. She's just gone to the movies with a friend and usually snack would be 4pm, so we had it at 3.15.

For those of you who have been supporting me so wonderfully over the past year please can I shout to the rooftops DD IS 100% WFH!!!!

And is transformed mentally as well as physically. I wasn't sure about taking her away skiing after the violence etc but it turns out to have been just what we all needed. On the outward journey it was such a nightmare - plane delayed, skis didn't arrive, had to wait for the taxi, traffic jam to Tignes and it took us SEVEN hours from the airport to get there (then we couldn't find the bloody apartment!). No food other than packaged snacks and she was so reluctant. For context she'd put on 1kg that week as I told her she wouldn't be able to ski every day if she didn't regain the weight she'd lost +++.

Anyway, we had pizza that night and all ate loads as we were starving. Two days ago she said to me that things shifted during that week (which we noticed - she asked for a haribo and took a peanut from our bowl, asked to share food etc - I think I posted about it)and she told me "I saw the things I could do if I recovered". I KNOW it's not over yet, but since then she's been steadily gaining and feels like my girl again. she's socialising, having friends over, and tomorrow she's going to Thorpe Park with her friends without me. yesterday I came home from a massage and she and her friend were eating tuna wraps for lunch.

I'm going to start reducing my sertraline very gradually, and she is being weaned off her olanzapine. I can't believe that 6 months ago she was in hospital, I thought she was going to die and I was having a breakdown.

Hold strong mamas, you've got this. God knows if a suicidal dysfunctional being like me can get through it, you all can too.

NCTDN · 31/03/2022 17:28

Oh wow dark that is incredible! Well done to your dd but also to you - she couldn't have done it without you Halo
It's so good to hear that mentally she's also in a much better place.
There's hope for us all x

Girliefriendlikespuppies · 31/03/2022 17:44

Oh wow dark that's amazing you have both done so so well!! It's also a testament to the fact that FBT does work even though it is absolute carnage at the time 🥴

Interestingly and I know it's only anecdotal but I stopped putting cream in dds porridge for a week and noticed a definite dip in mood and increase in anxiety. I know there is actual evidence around about the importance of animal fats and brain recovery but to see the correlation in rl was quite surprising.

So definitely don't back off just yet dark!

D1ANA22 · 31/03/2022 17:59

Thank you for the advice @DarkBlueEyes and well done on the weight restoration, reminds us that we can all hold onto hope even through the darkest of times with this cruel illness.

You have confirmed my reservations about DD eating out with friends - yes it’s going to be difficult (we live rurally and her friends don’t live local so DD visits them as there is something to do there). Frustrating that pre ED we began to allow her independence travelling and meeting her friends, now that has come back to haunt us; already we have had her storm out of the house to the train station and disappear for the day.

With our family holiday being cancelled I am frantically planning days out so that we may ‘contain’ DD and monitor her eating. This is going to cost a fortune - her school has three weeks Easter holiday.

Been out today and DD was very anxious in the lift and said she was glad that we weren’t going abroad as she hates flying - this level of anxiety is new, in her fifteen years she has flown over 50 flights both long and short haul. This and constant nail biting makes me wonder if medication for anxiety would help - the eating disorder service have provided her with a print out of the causes and effect of anxiety but she took little / no interest in this. What are your experiences with anxiety meds, can these be taken at 88% wfh in your experience and are there any side effects? Hope I haven’t broken any MN guidelines, it is not medical advice I am seeking but lived experience.

Thank you.

Lottsbiffandsmudge · 31/03/2022 18:43

Hey gang I thought I would pop back and say hi and catch up a little.
Wow well done @DarkBlueEyes I remember your first post- what a journey you have been on. So pleased your dd is making good progress. There is hope!
Just as an update my DD is doing great. She has been WR for about 9 months now and has been off olanzapine for about 6 months and has now been discharged from CAMHS.
I just wanted to say that getting to 100% (or whatever number your DC needs) is a massive milestone but also that improvement comes on steadily after that too. My DD has got better and better at her right weight. We still have some issues which I think will never go away but she is now trustworthy, independent and eating sensibly. Her weight has decreased a bit from her 100% level but this has happened naturally as she manages her appetite and her own food. She still eats 3+3 but will add to it if hungry or scale a snack or meal back if not.
You prob remember that she is an elite footballer and she has just been resigned with Arsenal for another season which has been a big positive.
She is currently injured and on complete rest and whereas a year ago this would have led to restriction and hysteria she has taken it in her stride and cut back a little with meal/ snack size but not hugely.
I have to say that there have been bumps on the road. It has not been a linear journey of improvement. She was lying to me about an extra gym session at school (according to her not lying as she just didn't tell me....)
The thing that I find the hardest is letting go. It is hard to trust her and I know I need to 'just let her get on with it' but the trauma of what we went through makes that very hard. I was trying very hard to do so and then found out about the gym work. We had a very frank conversation about trust after that. Tbh I was just transported back 12 months to a time when I had to watch her like a hawk to avoid her doing exercise 24/7
I had read that the brain takes 6 months at least WR to fully recover and that has been our experience
She had her first ever period in Jan (I nearly hung out bunting) but nothing since. I know this is not unusual but with her history and her level of sport its still a minor concern. Her psychiatrist made a gynaecology referral about 9 months ago and we sre still waiting. She is 15 in July.
So anyway sorry for the long update. And to those who don't know my story apologies. My words of wisdom are that FBT is hard and scary but does work. The ED robs them of those experiences you mention @D1ANA22 not you. They need reminding of that frequently. And I think it is worth reminding yourself too. My DD's ED was totally untrustworthy. And I get your dilemma with no school. I have a lego Disney princess castle and Howard's as testament to out 2 school holidays at about 85%!!! My advice is that weight is more important than anything. Independence is not something the ED deserves. And also the anxiety is a symptom of ED. Tackle that and it will reduce (unless it was there pre ED). My DDs anxiety is so much less now she is fed properly.

Lottsbiffandsmudge · 31/03/2022 18:46


D1ANA22 · 01/04/2022 08:28

Hearing about @Lottsbiffandsmudge and @DarkBlueEyes DD’s progress is so encouraging.

We had a good day out yesterday, lunch eaten at MacDonalds and hotdogs at home. It is clear with my DD that mood directly influences her eating, although some bits of food are left on the plate and dairy is a huge challenge - she is eating 3 meals with wide variety and 3 snacks (snacks are quite rigid though), dairy is a huge challenge. Our story is that she was hospitalised in December 2021 for seven days at 68% wfh and tube fed for three days (hated it), now 88% at home with FBT. If you don’t mind me asking @Lottsbiffandsmudge and @DarkBlueEyes (or any mums who are going through / have been through recovery) from your experience what made a real difference when treating your DD’s - I know every sufferer is different, I always feel like I should be doing more to help my DD. We don’t have any purging or over exercise behaviours, however rigidity around breakfast cereal, calorie counting, trying to limit servings and leaving food on plate behaviours continue as well as her fear of dairy.

All comments and advice welcome.

Lottsbiffandsmudge · 01/04/2022 09:09

@D1ANA22 schools of thought differ. Some say go hard on everything as the fall out is the same so you might as well get it over with.
Other take a more softly softly approach.
I guess we fell between the two. We picked our battles so for instance we didn't push her to eat out (which terrified her). But I made sure she ate whatever we ate as a family for dinner (I wasn't going to cook separate meals)
The rigidity is totally normal. Part of the ED exerting control and part a way of dealing with the terror of being the child trapped inside this illness.
What helps is weight. It really is the only cure. If your DD is gaining weight with how she eats I would stick with that until she gets much more back to normal. Your DD has come an amazingly long way but 88% is still low. We found massive differences between 95% and 100% for instance.
We have tackled the rigidity since WR by constant exposure. And also I recognise that part of her rigidity is actually her personality- she likes routine. (As do I!) many people do so as long as they can have a life as well I am not sure it matters all that much.
It's a long road. You are doing great. Just keep going.

Lottsbiffandsmudge · 01/04/2022 09:13

The only thing I would add is that we banned our DD from food prep. She then couldn't calorie count as she didn't know ingredients etc. It was hard to do it and she was awful for a while with temper tantrums and violent out bursts but it really was the best decision. Also I cooked everything from scratch (Inc snacks like cake) so she couldn't read wrappers and I never took her shopping. All the traffic lights and diet foods are such a trigger. I get that it's not possible for many but getting stuff out wrappers or using sharpies to block labels out can help?

NCTDN · 01/04/2022 09:39

@Lottsbiffandsmudge so good to hear about arsenal. I first read it as resigned (as in sacked) but then realised it was good news and re signed 
@D1ANA22 In terms of recovery we were between the two camps. DD wasn't allowed in the kitchen but we didn't force feed foods she wasn't comfortable with. They were introduced slowly over time. Dairy was and still is the most feared food for dd. It took Norman and months for her out have butter on bread and toast and even now it's minimal amounts. Cheese is the hardest one to overcome. She says it's coming into a good group of 'fats'. There's so many connotations associated with that word and she knows they are needed but still finds it hard.

DarkBlueEyes · 01/04/2022 12:07

@Lottsbiffandsmudge that is fab news about her being re-signed for football, she must be so talented!
@D1ANA22 here goes, this is probably very rambly and waffly so I apologise in advance (brevity not my strong point).

Initially things went well with FBT, diagnosed in May, at 80% WFH, had some days off school, but went back with no PE. Then massive relapse in the school holidays, and I couldn't get anyone to help her. Went back to CAMHS, begged for medication - as I could see her anxiety was off the scale. She used to lie on her bed and SCREAM for hours while I just held her. Throwing food on the floor, hiding it (socks and knickers) she was so fast we couldn't take our eyes off her for a second. CAMHS refused until I went to the GP a broken woman and showed him her weight loss (it helped he was a friend), and they agreed to take her back. But things kept spiralling. I took her to A and E in Epsom and the community mental health team got involved. I kept ringing the crisis line, but they wouldn't admit her. I then took her to St Peter's in Chertsey and they admitted her thank God at 78% WFH, so not as low as your DD but I still thought she was going to die. Just prior to that as CAMHS were so useless I took her to the Schoen Clinic to see a psychiatrist there (she was utterly lovely) who agreed she needed medication and put her on a non therapeutic dose to see how she tolerated it. By the time we were at the review date she was admitted so I just banged on and on at CAMHS to prescribe. Once the hospital team saw her screaming (they were tubing her and I had to leave the room - I could hear it from the other end of the paeds ward) they prescribed Olanzapine 2.5mg three times daily. It had quite an immediate impact as it's a sedative and initially made her quite sleepy but did alleviate the distress.

CAMHS kept saying that sertraline was not effective at such a low weight (massive chicken and egg scenario right there) but the private psych was ok to prescribe it and they then had to go with it. Remember she started it at 78% WFH and they basically said it would need to be over 85% to be effective so I think it would be ok for your DD. She had to be 90% to do any sport but we pushed it and introduced it VERY slowly so she could see she was being rewarded.
Then I basically just banged on and on and on and they upped the sertraline to 75mg and that did make a difference. Eventually in January when she was really distressed (vile) they upped it to 100mg and that was the magic dose - three weeks afterwards I could see a change in her and that's when things really started to shift.

Interestingly, I was in a really bad way and was prescribed sertraline myself so I experienced the difference it made to me. I was suicidal, crying all the time and my friends told me I just shook constantly. I was nauseous and lost 8kg (sadly all back on). DD described her anxiety around eating and it made her feel sick and I think that's why they caved in the end - and it DID make a difference, and allowed us to be calmer. I started off on 50mg, went to 75 am now on 100 and I am gradually going to reduce this as I feel truly me again.

You cannot let her calorie count. YOU are in charge of food "this is what you need", no discussions of calories or what's in food at all. Cut that sh*t dead. But in your head you obviously need to do it thought some days I had no idea - aiming for 200 calories minimum for each snack, and lunch was always a sandwich or wrap (two wraps sandwiched together with butter/mayo - the Mission ones are the highest) and whatever filling, plus a pack of crisps, a piece of fruit and a biscuit. The early days I had a cheese portion in there too.

If she likes milkshakes buy ensure and use that in a milkshake with cream and full fat milk and ice cream too. That's a great snack.

Specifically, she was banned from the kitchen while I was preparing food. I add fats to EVERYTHING. I bought Nestle Nido from Amazon and that gets added into her FF milk for ceral/hot chocolate etc. I bought maxijul from Chemist Direct and that got added into juices (hidden in the garage both of them). Cream into everything I could - stirred into yoghurt, hot chocolate, pasta bake, spag bol, you name it.

I buy the skin on fries from Lidl (actually best frozen chips EVER) and add a big chunk of lard to them (might explain my current size too [hmmm] god they are goooood!)

I bought a chisel tip thick sharpie and cross out all the calorie counts of anything packaged. Takes bloody ages mind you!

High calorie puddings: Lidl melt in the middle deluxe puddings (lush) with cream or ice cream added. Ditto sticky toffee pudding and the millionaires cheesecake.

We had lots of pastry/pies but lots of things she was scared of like croissants and eventually, lasagne so we didn't force this. Sausages oven baked with lard, stir olive oil into hummous etc etc. The lovely individual pies from Lidl are 500 calories each! Combine that with buttery and creamy mash, roast parsnips and a small amount of other veg and with pudding there's over 1000 calories right there.

Sometimes I'd give her a toddler's choice: do you want sausages or pasta bake?

If you search through my posts you'll see I've posted lots of recipes/food ideas - when I found something she liked, I shared it.

She always had to leave something, and still does to a great extent but occasionally she is now finishing things. So I just dished up a percentage more to account for it, and when she left, I'd say that wasn't enough, you need to have more - and I'd portion it up - she felt she was winning as she did leave things.

She knew that she had to eat to earn priveleges: if you eat your snack then you can do xxx.I started off by saying if you don't eat your snack you can'tdo xxx but found it was more effective the other way round.

I read and re-read Eva Musby's book but heaven knows not all of that is doable for mere mortals.

You sound extremely competent and sensible and I know you can do this. I was a wreck and somehow we are limping through.

DarkBlueEyes · 01/04/2022 12:09

ps @Lottsbiffandsmudge YAY to the period. We haven't started here yet but DD is on a mission to grow boobs lol she wants double Ds! As I'm an E cup I do think genetically that's a possibility! And she knows that she has to eat to get it (in the meantime shopping for push up bras. At 14 FFS!)

NCTDN · 01/04/2022 14:57

@DarkBlueEyes dd still wishes for bigger boobs but at 18 I can't see that happening! She's always been petite even prior to ED so she'll do well to get to a B cupGrin

Lottsbiffandsmudge · 01/04/2022 17:21

@DarkBlueEyes good news about wanting boobs....I remember taking DD bra shopping once her weight was back on.... except for the trauma of lunch it went well! DD has A cups but doesn’t want more due to football......
Would like a second period then I could finally say we have moved on (barring relapses which are always a possibility)...
@D1ANA22 DD had olanzapine too, that was a game changer for us, last Jan after a month of breakfast battles she took it for the first time, came down the next morning and ate.... so literally overnight for us, started at 2.5mg quickly increased to 5mg. Don’t get me wrong we still had a long and v difficult road but it did take the edge off.
Only came off it once fully WR and stable for 3 months. Drug free now. It is a proven therapeutic for AN as it helps to calm the AN voice (in much larger doses it is used as a treatment for psychosis). It acts more quickly than other meds. That said not everyone has found it useful, it does tend to make them sleepy to start with but most get used to it quite quickly. DD was functioning fine at 5mg. Coming off it was scary but she has been fine.
In terms of hidden calories I know some disagree with it. We used it though, I hid cream in smoothies and mashed potato etc. Clearly with your DDs dairy aversion it will be hard to use milkshakes or smoothies but get it in pasta dishes, soups, mash etc animal fats are the best brain nourishers.
DD never knew and now has no hidden extras and anything to speed up the process is a bonus in my view,

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