Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

@SoTiredNeedHoliday so sorry to hear this. Unmumsnetty hugs to you. Your Dd sounds very poorly and I agree that she shouldn’t be discharged until you have had some proper pyschiatric input. It sounds like meds might help. They did for us. DD only got down to 77% wfh but it was awful and she was in meltdown or uncommunicative 24/7 and the meds lifted her out of that for periods, helped her sleep and made eating easier. Then the food can start to go in and do it’s magic. I really feel for you def fight to stay until there is a proper plan. It’s good that your Dd is motivated by no tube. It’s leverage for when you are home.
@lougle I am not sure it matters what the calories are as long as they go in 1.2kg is a great gain.
We gained 500g again this week. I am pleased with it as it’s the first week with DD back to training/ matches. 94% wfh now and we see more and more of her old self each day. AN still comes calling a lot and she still wants to deal with anxiety by exercising and so we need to help her learn other ways. And rather than just dragging her in from the garden with threats I need to try to remember to dig a little deeper. Today she was worried about training tonight which didn’t go well last week. In the event she has had a good time.
KW wants DD at 100% wfh min which is a few more kgs so we are going to be at this for a while. No mention of discharge tho and they want to help us through phase 2 maintaining whilst building in more independence and facing fear foods. So it seems our ED team are in it for the long haul. We have been lucky tbh.

@SoTiredNeedHoliday - We had exactly this scenario when DD was admitted to hospital. She'd comply with the meal plan (either eating or via tube) to get out of hospital. Once home, she reverted to restriction... and then was readmitted two weeks later.I think we kicked up a big fuss about the spiralling of actions and that without interventions this would continue but with the added pressure of each hospital stay made it harder to manage the ED. She was prescribed flux but DD was adamant she was depressed because she was being made to eat. The flux has helped. Good luck...

We're doing okay.... some wobbles and a bit of a return to some self harm but overall trajectory is in the right direction.

I said I'd post something about our experience of recovery....

DD had been watching a couple of AN tik-tok/you tube young women of a similar age to her (should add this was with our knowledge and usually we watched together). The women were in early days/weeks of recovery (both doing "all in"). It felt like DD was almost researching recovery - she wasn't in a place to feel deserving of recovery yet but wanted to know it was possible (this was my summation of the process rather than DD's explanation - that said, I have voiced that view in family therapy and DD didn't contradict me).

About 4 weeks ago I felt really low - I posted on thread two saying something along the lines of "our window was closing". It wasn't hyperbole - it really felt desperate. We had a hugely difficult day the day following that post. Massive amounts of self harm, struggling with eating etc but the difference was DD announced she was done with it, it wasn't worth it.

Since then we've been in recovery. She is still fragile and vulnerable. But she is eating. We no longer follow a meal plan, she eats what we eat. We don't count calories but go by portion size. She still has 3 meals and 3 snacks but increasingly the snacks are morphing into 'grazing throughout the day' rather than formal "snack time".

She has been amazing and an inspiration. She still needs support and encouragement and sometimes she is thrown and is very wobbly (literally shaking as she eats) and she still occasionally self harms. Tonight she ate pie, mash and peas - a fortnight ago (let alone a month ago) this would have been impossible.

She's created some quote boards to remind herself that she deserves to be happy, that she can recover & she will recover etc and posted them on her bedroom walls. She's covered the mirrors in her room to limit opportunities for body checking etc.

She has a challenge jar with AN related challenges to do - some of which relate to specific fear foods but others relate to behaviours - so having a picnic, eating with others etc (the behaviour related ones are harder to accomplish than the fear foods).

CAMHS were good and agreed to cancel Obs as it would be a trigger and anyway she was being discharged to adults and adults wouldn't do Obs in the same way.

She's slowly coming back to us and it is a joy. Her personality is returning, her cognition is improving, she is planning for a future - both short and long term.

She is still plagued with a very mean ED voice and a particularly strong exercise compulsion. She has ongoing physical symptoms and the ED will try to prevent her from responding to her physical and mental hunger cues. She is still chronically low in self esteem and I envisage a few more snakes in our path but the ladders are being climbed.

Lockdown easing will be a double edged sword - more opportunities to see friends (and to see 'normal' eating) but also more opportunities for the ED to snipe at her, comparing her body to others etc... but I'll take that over where we were.

I genuinely felt utter despair when I posted about our window closing so this turn around feels miraculous. Which I suppose is my way of saying, keep going (not that you have any choice) but keep going with faith that one day this will change.

These threads have been so helpful to me both in terms of practical knowledge but also the community, it is really hard for anyone who doesn't 'see it' to understand the trauma of living with and caring for someone with an eating disorder - I know I was utterly oblivious before it became my reality. Whilst we're on the foothills of recovery, it is a pretty high mountain in front of us so I think, if no-one minds, I'll stick around for a while longer.

Lovely post myrtle your dd is an inspiration and it gives me hope! Can I ask who it was your dd watched on tiktok as I might point my dd in that direction. Please, please do stick around!!

Theyneed I wondered how you were getting on, I'm glad your dd is eating a bit more but I would be very cautious about her being discharged too soon. I thought they aimed for a 3 week stint to establish refeeding (not sure where I read that though!)

Lougle and lots fab gains 👏🏻

We've not had a great day, dd has been very up and down and it feels like is pushing too move more and eat less constantly. I'm so fed up by it all, I really struggle to understand why she would not want to fight against the ED when she clearly has been feeling a bit better recently

I've got a horrible feeling she's going to have lost weight at the next weigh in 😫

Anyway tomorrow she's having a cognitive assessment as part of the ASD assessments, not really sure what to expect tbh.

Theyneed = sotired (sorry!)

@SoTiredNeedHoliday was wondering how things were too... so sorry to hear you're in and things are tough. I really can't imagine DD is anywhere near ready to be discharged at that wfh and with mood so low. During both our previous general admissions we were on the ward for 2 wks - the decision to discharge wasn't wfh based but determined by when DD was " medically stable" ( physically - ie bloods & ob's ok, ) and when refeeding risks had passed. Refeed risk monitoring was 5 days ( fairly standard i think?) which I guess wld be tomorrow for you, as you were admitted last Thursday. But there needs to be a definite plan in place before they discharge you. CAMHS or I2I shld be visiting you in hospital. Have they done that yet? And ideally a review of DD's meds/ lack of. You have every reason to insist on this or risk being back in there due to inadequate support.
Once out you shld expect a weekly ( or even twice weekly) appt with a nurse practitioner plus periodic psychiatrist appts for meds monitoring. Also some Family Therspy shld be offered. Resoucres are obv stretched but the critical minimum must be the wkly nurse prac appt's for ob's monitoring and meal plan reviews. Psychology sessions i think are icing on the cake.... we're still waiting! ( 18 mths on...)
Really hope they listen and things start to move in the right direction. She's in the right place - keep fighting for the support she deserves.

Hi to everyone else....getting late & zzz's calling. Well done on weight gains Lotts & Lougle.
Myrtle thnks so much for sharing all of that with us. You must be v proud of DD fighting so hard. It's interesting to compare where I think we generally are on our journey (tho sometimes I still really just don't know...) to the kinds of changes you've noted with your DD. I do now and then see more extended glimpses of the real her unobscured by her ED but it's never in the background for long.

I weighed DS again this evening and he is the same as he was last week. Been trying so hard to get more calories into him, I could just cry.
He’s got an appointment for weight, height, BP, and ECG on Thursday at the GP and his CAMHS Dr is phoning me next Wednesday so that’s something at least.

@Girliefriendlikespuppies meant to say good luck for DDs assessments tomorrow.

Hi, first post about this.
My DD 15 has been a gymnast since she was 10. It became the most important thing for her, 3x a week and comps etc. She’s really good at it. Not been on during lockdowns obvs. She has retained fitness by exercise at home/ zoom.
She has self harmed previously aged 13. Saw a school counsellor, it helped. I don’t think she is SH currently.
So, she hasn’t been massively fond of sweet/ fatty foods for a while but she did used to have treats. Not any more. We went out at Easter as a family and she didn’t join the rest of us having fish n chips, I had to buy her a deli salad. She also wouldn’t have an ice cream. Before the lockdowns, I’m pretty sure she would have had that.
Her periods stopped in March ‘20 and we are due to have an ultra sound for that. At the GP in November she was on the cusp of being underweight. But she has muscle from being a gymnast. Now I’m pretty sure she has lost more. She has been skipping meals and making her own - now usually veg with protein. She’s really not getting much else.
She is a perfectionist and also working really hard on revising for gcse tests.
I’m really worried.
It doesn’t help that I have put pounds on over lockdown myself and have moaned about that, within her hearing.
What can I do? I’m trying not to show panic etc. I’m trying to focus on other things when we talk.

Myrtle that's so encouraging, thank you.

Girlie hang in there, you're doing well to keep her eating and doing some sort of normal life - DD1 is gaining but she's on wheelchair/bed rest. I hope the assessment goes well.

NelleBee you've started the fight! If you've managed to maintain weight, you've halted the loss and you can build up again from there. It's a long game, so don't let yourself be discouraged by a maintain. I had to have that said to me when I was moaning that a 200g gain was basically a big poo

@Zzzexhaustedzzz welcome to the thread. I think you're in a tricky situation because gymnasts are generally slim and are encouraged to eat healthily. Periods do often disappear if they are training intensively. It's not necessarily concerning that your DD isn't choosing very fatty foods, but if she is eating less than she needs, that's a problem. If you think she's actively losing weight and skipping meals, that's a problem.

I think it might be worth initially trying to talk to her about muscle repair, strength, etc., and see if she'd do a meal plan with you to ensure she gets all the necessary protein, calories, etc. Sort of embrace the gymnast dream. If she's amenable to it, she'll either reveal that she's not planning to eat enough, or she'll reassure you that she's just trying to be healthy. You could look up the NHS calorie guide - she needs about 2400 as a base, then you need to take into account how active she is.

Eating disorder services start with a 3 meals and 3 snacks plan. So it would be worth trying to start that. If she won't, then it's probably time to go to the GP.

We're on day 7 without a shower (and have no bath in our house!). DD1 was having a shower last week and there was a really horrible smell - a cross between gone off kippers and strong dog urine. I went to investigate and DD1 was in the shower with smoke all around her. The switch in the ceiling had pulled lose and started to burn. Worryingly, it hadn't cut the power to the shower, so I had to shut it off at the consumer unit. DD1 said 'I've never been in this situation so I just stayed where I was'. A great example for her PIP form in a few months, to show that she needs constant supervision! Anyway, the council repair guy came out and said that whoever installed it left the wire too short and it's too thin, so it needs to be rewired. Luckily, Mum and Dad live a mile away, so we've been able to shower/bathe there.

DD3 is desperate to go on a bike ride and DD1 has been moaning that she will miss out. I found a tandem bike last night and sent a message at 22.45 - DH said it was too late but I said it's FB and they can always mute their phone! Lucky that I did, because the chap messaged me this morning at 7 am to say that I'm first in the queue, but someone else messaged this morning. I'm going to phone the lady at 9 am.

Lougle
Thankyou so much for your helpful advice. My dd’s behaviour has been worrying too when I ask anything about food.
Sorry everyone to crash in here when I can see (I was reading last night) some of your current situations are very very difficult.

You're not crashing in. It's exactly what this thread is for.

Zzzz I think if your mum spidery senses are tingling then something probably is up 😕 with my dd for a long time I tried to minimise my worries by thinking 'well she is eating something/she doesn't look too bad'

The fact your dds periods have stopped (it was my dds periods stopping that actually made the alarm bells go off) is a big concern.

What I've learnt on this ED journey is that anorexia is a genetic and biological illness that kicks in in some susceptible children/teens when they lose weight. If your dds weight has dropped below a certain limit it may have triggered anorexia and the associated anxiety around food and weight gain.

In the first instance I'd talk to your dds Dr and explain your concerns, ask for a referral to the ED service and ask for bloods, Bp, ecg and pulse to be checked.

@lougle hope that shower gets fixed soon
@girlfriend hope the assessment goes well do let us know how you get on and hang in there...
@NelleBee I think a maintain is great! It took us some time to halt the decreases before maintaining and then gradually running it round so to maintain is a great sign
@Zzzexhaustedzzz this sounds very much like my DD. She is an elite footballer and I slowly started to notice little things like increased exercise, stopping snacks, worrying about take always, wanting to always cook our meals, huge amount of baking but not eating the results etc. She was still eating 3 meals a day and although I spoke to a fair few people (school head of sport as she is on their talented program, her coaches etc) everyone said oh she’s eating meals stop worrying. Actually with her exercise she was in a 1500 cal a day deficit and lost a whole load of weight v quickly (over a stone a 4 week period). And was diagnosed with AN and exercise compulsion just before Xmas. To me there are a lot of red flags in your situation here I am sorry to say. I don’t want to alarm you but I would have a conversation with her sooner rather than later and as Lougle says if she reacts badly you will know it’s more than a healthy eating phase. And actually healthy eating and a desire to stay fit in lockdown is the cause of a lot of EDs at the moment from what I have read on FB groups. As an athlete she needs a lot of cals to maintain a muscular frame as muscle needs needs more energy to fuel than fat. The mere fact that you want to avoid the topic of food because it upsets her or makes her defensive is a massive flag. It goes against every instinct as a mum to make ‘food an issue’ but with an ED that is what has to be done. I tried to ‘jolly her out of it’ distract make food more appetising for weeks. Completely pointless. You can’t ‘be nice’ to an ED. Allowing them to cook their own meals and miss family meals is very much advised against in treating an ED
There is good advice on how to broach the subject wit a possible sufferer on the Beat website. Or you could speak to your GP (if they are good, mine are useless) brief them and then book an appointment for say a physical check re no periods and get them to do full height, weight, bloods etc and maybe they can broach it- GPS are very variable in their experience of EDs tho.
The sooner you start the better really- do you know how many cals she is eating and her exercise levels?
I am not trying to alarm you but I lived in a state of denial and went against my mum instincts for too long and ended up in a worse place and wish someone had told me straight to sort it out.... if it isn’t an ED no harm done having a conversation about young bodies needing fat for essential brain development etc.

@Zzzexhaustedzzz, welcome to the thread, if that's not the wrong word. I second what @Lottsbiffandsmudge says - I too was in a state of denial having rung the doctor about DD's missing periods at the end of October, we didn't get anything done until January and I kicked myself for the extra 2.6kg of weight loss that occurred during that time. Apparently every single parent of a child with an ED kicks themselves about not doing anything sooner (when of course we shouldn't berate ourselves as it's so hard to see). Oh and I too have put on weight during lockdown and mentioned it - but as myrtle says it's far more complicated than that and I'm convinced it's a genetic predisposition that's triggered by certain life changes (adolescence, lockdown, stress etc). I was getting annoyed by another thread that was criticising a mother for mentioning her daughter's weight gain by saying 'you'll give her an eating disorder'. Not the way it works.

@NelleBee - take the maintenance of weight as a first step towards gain.

@myrtleWilson genuinely thrilled that recovery seems to be happening. You've been such a stalwart on this thread and I'm so grateful for your support. Feel a bit tearful.

We seem to have taken a backwards step here. I really hoped with the early weight gain and return on the (just the one) period, we might be one of the lucky families. She's become alternately belligerent and tearful. She had friends over yesterday - I knew it would play havoc with eating but felt that social reintegration was more important. But one of them said she had lovely skinny legs (hmmm) and apparently L in their year weighs 30kg. Which I don't believe. Or if she does, she should be attending the clinic too.

Sorry it was @Girliefriendlikespuppies who made the observation about it being a genetic and biological illness.

@Zzzexhaustedzzz i xan only echo the advice already shared here.
Dont delay - if you have suspicions that things aren't right, act now. Time is of the essence if an ED is suspected. You know your DD better than anyone. The fact you are here is à positive first step and you absolutely are doing the right thing by not ignoring your concerns. If your DD is currently/has been losing weight, this may contribute to an increasingly distorted thought process around food / exercise related issues. So halting any further loss wld be key to turning her around if there is an underlying ED at work.
1st port of call - GP.
Debrief them first ( ask for phone consult?) in case they're not well versed in EDs or are likely to be dismissive. Stress it is urgent. As Lotts suggested, use stopped periods as pretext for taking her so the visit isn't focused around her weight.
You need to start tracking her weight and if poss compare to any previous bmi levels (or weight for height WFH- used alot in kids when assessing healthy weight ranges) to get a handle on how much she may have lost.
In meantime, do your best to structure 3 meaks & 3 snacks into her day. If she's v anti sweet stuff these can be savoury eg hummus & carrots, peanut butter, all really good. If she'll drink milkshakes, make these yourself if poss & discreetly add cream wherever poss.
Most of us here probably use cream and butter like its going out of fashion. Makes a huge diff to overall cal count.
Keep posting & good luck getting a gp appt.

Welcome @Zzzexhaustedzzz - nothing further to add in addition to the advice the others have posted but good luck & do keep posting - lots of helpful tips & offers of encouragement available on this thread.

@Girliefriendlikespuppies - the two that DD followed initially (there are others but I can't recall their names) are

Dora Tomlinson
www.youtube.com/channel/UC96LnH9LV--8-uJ5PZZm8fQ
and

Ro Mitchell
www.youtube.com/channel/UClzpIN3KVkoKI-mGloXlT7g

I've linked to their YT channels but their TT addresses are on there too.

@Valleyofthedollymix sorry to hear of a backward step but I try to look at it that the forward step hasn't been erased from existence, it happened and it means it can happen again...

@Lougle that shower experience sounds terrifying. Am glad you were able to intervene promptly...

DD's stomach is super sensitive at the moment so we're trying to work out the right level of meds. She's been sick a few days running, I'm fairly certain it isn't her doing it herself because the few time she has done that in the past she really hates it and secondly, she's being sick within our earshot - if she were inducing it she's smart enough to do it in another bathroom. I don't know, am I being overly naive here?

Lottsbiffandsmudge & myrtleWilson I think you are both right things feel ok now but I know it's just to get out of the hospital. I see her trying so hard at the moment, but the depression is still there. We're home for a few hours today before the camhs and paediatrician review her this afternoon. The first thing she said as we left the hospital was "I hate myself" , when I raised this with her as being a reason she was in hospital she just threw back the doctors words at me "the hospital won't fix the feelings its only for medical help". She's right as she hasn't seen a doctor that helps with the mental aspect as yet. It's so frustrating.
I think I am going to do as you all say and demand a psychiatric review prior to leaving,based on the idea itmay help us stop presenting at A&E in a week or two. Also, how do you know what WFH your DD/DS should be aiming for? My DD has always been pretty slight so I don't think 100% is really going to be her target?
Roolet12 I agree she's probably not ready to be discharged really but the hospital seems to be implying that is what will happen today, without having a camhs input yet. They don't seem to be bothered about her weight. Other than her vision going black when she stands occasionally her obs are much better than when she was admitted so I think they will say she's 'physically fit' to recover at home.However, without meds I feel it will be meltdown city and sitting in her room with all the windows and curtains shut......

Lougle You are right and I will be wearing my big girl pants to today's meeting! My DD has started saying in hospital she has to 'woman up and eat', followed by I know you're all trying to make me fat....
@Zzzexhaustedzzz I agree with everyone here, don't delay getting help. Even if you just make an appointment for yourself to talk it through with your GP in the first instance. If your GP practice has a number of GPs I'd ask to see the one that is most clued up on AN and eating disorders in general. Also have you looked at the website Anorexia family you might find some helpful info there.

I'm sat in the Camhs waiting room while dd has her assessments, it's a long wait approximately 1.5hours with a 20 min break for lunch.

Valley sorry to hear things have taken a little backwards step, recovery really is a game of snakes and ladders (I think this was myrtles metaphor!) We've certainly had a few big snakes so far but also a few ladders to keep us moving forward. Your dds friends comments are not helpful, do they still not know about the ED? I think I'd be tempted to have a quiet word with the girls mums.... one of my my dds friends almost certainly has an ED (taller than my 5ft 7in dd and weighs 7 stone 😳) Dd has spoken to their year head about it but otherwise I've urged dd to not get too involved as I think it could be really triggering for her 😕

Myrtle thankyou for the links I will have a look. I'm not sure re your dd vomiting 😕 is there a pattern to it? Does your dd feel it's anxiety related?

Sotired your poor dd, she sounds so confused and beaten down by it. I definitely think they should be offering some meds, I think I'd want olanzipine to try first in your situation.

Girliefriendlikespuppies i hope the review goes well

@SoTiredNeedHoliday I cannot believe at 71% wfh they are thinking she is physically stable.... in no ones world is that physically stable and it wouldn’t take much for her not to be physically stable and just end up right back needing hospital.
in terms of wfh I wouldn’t worry too much about it at the moment. My DD has always been slight (on the 9th percentile) but our KW still wants us to aim for 100% ie 50th percentile because she is an athlete and needs the extra weight as she is all muscle. Tbh DH is resistant as we are used to her being very slight and she weighs more now than she ever has but I can see that with every kg that her mental state improves. But she is not there yet and still has issues and so I think it’s right to push on. We will also no doubt make mistakes when she is trying to maintain and we need the wriggle room so that she doesn’t slip back into serious AN. And she is only 13 so still growing. There is a lot on the EDSUK about people aiming too low and relapsing for these very reasons.
I also spoke to her KW about it as I saw pictures of Dd running 2 years ago and she was much slimmer than now but she said that an 11 year old body is very different to an adolescent 13 year old body and the extra weight is necessary. Someone posted a link to a great blog from a recovered AN on the fb group about this very thing the other day I will try to find it and link it here.

www.feast-ed.org/when-in-doubt-aim-higher-what-i-wish-id-known-about-target-weights-in-recovery/?fbclid=IwAR1ZxxImLpF0YBBSPVCF2_2CinYHhC5_pUqPE2oWXYXC87C0Ia0dPaCGzeg

Sorry to be such a nuisance,esp as my DD currently not underweight but could you kindly help with some questions please?

Firstly,she's being seen for obs for 4 weeks after I kicked off when they basically said she doesn't meet criteria and were going to just dismiss her.
week 1 -300g loss,6 days later it's now 500g more.they told us to stop her laying in bed as depressed and get her out and about.we did 3 walks this week,about an hour or so.not fast paced.no other movement except lay in bed editing/watching stuff on laptop.shes not eaten any differently(still refusing breakfast and eating rolls with salad and tuna/ham at lunch and crisps.dinners mini hummus pot,a pitta bread.lots veg stick and fruit salad.maybe a biscuit or few sweets.she ate an Easter egg over a 3day period.
Her b.p is always high,she denies being anxious or upset about be there/having it taken.still having regular dizzy spells
Her periods have been regular for around a year.this one is now a week late(hoping it puts in an appearance shortly)
The nurse asked her if she ate crisps/how often and did she eat an Easter treat/was she trying to lose weight.i was a bit sharper than I intended when I said I'd been worried about increasing movement as she doesn't eat more for it(didn't when in school full-time but not eating til evening etc)
Doctor was summoned,I was asked to leave and I sat in waiting room 50 minutes.lil zoo came back with nurse looking red eyed but not crying.nurse said had doc spoken to me I said no.she said they going to speak dietician(who is doing a phone call chat 7th may regarding 8small meals a day for IBS friendly ideas.great but she won't eat 3x so can't see 8 being easier,but anyways)bringing her up to speed with "developments" and we should continue as we have done.i checked we were still ok to be taking her out etc.yes and eat what she wants.yes.nurse asked her might she implement some doctors menu ideas.she shook head.we were allowed to go
Is it normal to not get any feed back over kind of things they talk about as lil zoo doesn't say ANYTHING.she refused talk to them and said when prompted they talked at her "random crap"but not actual topics of conversation etc?
Secondly should I mention periods late?
Thirdly she's due to return to school on Monday and school have been allowing 2lessins in,rest online a day so she will eat more whilst await clearance for full return from the ed team.they are saying shes to be encouraged back in full time but I'm very worried this will cause even less food in.some days when she was in full-time she ate 2rolls,bag crisps and 500mls flavoured water at 4pm then was too full/bloated to eat more than a tiny snack later(couple crackers/a biscuit and a soy milkshake carton).what do I do?
I feel awful asking when you guys are really in the thick of it all,but I don't know where else to turn to

Did they ask you to leave, or did they offer DD to chat without you? They should surely have given her the choice!!

Remind me what her WFH is? Exercise does help with mood, but she does need to eat enough to compensate.

They obviously think that school is more of a benefit than a risk, but if you disagree, you need to ask them why they think that.