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Teen Eating Disorders Thread 4

995 replies

SoTiredNeedHoliday · 24/06/2021 15:56

Starting a new thread, no 3 is full

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SoTiredNeedHoliday · 21/09/2021 16:30

Hi @DarkBlueEyes sounds an awful situation. Will you see the same CAMHS person as you saw at the hospital?
Unfortunately without putting weight on or a big shock that scares her into eating I don't think the behaviour will change. Its a symptom and its possible she can't control it herself as the ED voice is more controlling than pleasing you.

How has she taken not being at school? Is that a carrot that might work for her? I'd be taking away all online school etc etc every time a snack is missed and just telling her she'll have to repeat the year if her eating and weight don't improve because her health is all that matters, education means nothing without health.
Maybe the thought of being a year behind her peers would get her eating?

OP posts:
Girliefriendlikespuppies · 21/09/2021 17:50

Edward and roller she knows I saw it as I asked her about it, she immediately ran off to hide in her bedroom and denied it was there. Interestingly she then left two safety pins out for me to see on her table so I took that as her asking me to get rid of them. I've emailed her cbt worker about it. It's so heartbreaking, my beautiful girl.

Dark sounds like you're doing brilliantly, I know it's exhausting but keep going. Once they start getting a bit more food in their brains do start to improve albeit slowly. I often have to remind myself of where we were 6 months ago to now to remind myself we are making progress even though it doesn't always feel like it!! If she keeps hiding food in her clothes I'd be tempted to tell her she'll be eating starkers unless it stops 😉

DarkBlueEyes · 22/09/2021 10:04

Hi all we are off to CAMHS again today for a weigh in. Although she is eating more, she looks like she's lost weight. How I wonder?

Well, I water the plants on Wednesdays. One palm been hadn't watered for a while, i thought I was over watering it.

I wasn't.

It was swimming in liquid and utterly stunk. I nearly threw up.

She's been spitting her milk into it, God only knows how. It was mouldy and stunk of vomit.

So now she cannot move until she's eaten and she can never swallow at the end, she spits it out.

I am beyond despair. I just am. When will they see she needs hospital treatment?

Rollergirl11 · 22/09/2021 10:55

Ahhh Dark you’re really having a shit time, I’m so sorry. When you go to CAMH’s are you actually seeing a care-coordinator or are they just weighing her? You need urgent help, her behaviour is spiralling further down! Would you consider a different A&E? St Peters in Chertsey were really good when I took DD.

DD had a really bad day at school yesterday. They had a motivational speaker in their morning assembly who was preaching about success and failure and it brought on a panic attack in DD. She had to go and sit in her HOY’s office for first period. HOY was really good with her, managed to calm her down and they came up with a revision plan together as DD feels like she’s not doing enough (all in her head that she’s slacking off when she absolutely isn’t!). They spoke about her meds potentially being the cause of her increased anxiety and they also talked about the other girl in her friendship group who is not eating. HOY has said that DD can use her office to eat lunch whenever she feels the need so that’s good.

DD has their therapy session tonight and I think she’s desperate for it as she has definitely been more agitated the last few days.

DarkBlueEyes · 22/09/2021 11:08

Roller I'm going to try chertsey next, thanks for the feedback. Just weighed in and another loss. 200g down. 40.1kg. I'm going to ask for a private word and see what can be done. Spiralling is the right word.

Valleyofthedollymix · 22/09/2021 14:33

@DarkBlueEyes really sorry you're having a s**t time of it. How tall and old is she? I know you want her to put on weight but 200g is sort of negligible given how much it can vary on what time of day/clothes/water etc.

I lost it this morning and we had a row, something I'm not proud of. My father is in hospital and my mother seems to be losing her marbles, but I can't do anything to help because I'm stuck at home feeding a child every two hours who takes about an hour to eat anything - made even worse by no clinic this week as sister has Covid so there's no respite. It was the realisation that if something had gone wrong with my dad's op and I'd have had to drop everything to travel across the country, then DD would have welcomed the opportunity to eat less. Everything, even frail elderly people in hospital, feels like it is subordinate to her desire to eat less.

DarkBlueEyes · 22/09/2021 14:35

Back from CAMHS and no further ahead really. It was an hour long session. She is now 77% WFH. When I first joined this group she was 87% WFH. They say admitting her to a unit is a possibility but there is a protocol and they have to try to keep her in the community. I said it was only delaying the inevitable. So we'll have one communication a day rather than one a week BUT that service hasn't re-started yet and there will be a waiting list! WTAF??????

I told them it's a safeguarding issue for the family and for DD1's and my mental health. I am worried I might hurt her or myself and I told her I had been suicidal, as well as explaining about DD1. They are going to refer us to children's services. What does that mean?

She asked if she could go back to school!

Back home to lunch and still trying to hide food. Lunch took 1.5 hours. Please can you have a look at what I've given her today and tell me if I'm giving enough food?

B: overnight oats with grated apple, with added ground almonds, ground linseed (won't eat any obvious seeds or nuts), apple juice, cream and maple syrup. Glass juice. DH added 2 tsps sugar to the oats and to the apple juice
S: small brownie, glass of juice
L: chicken sandwich on thick cut bread with butter and a smear of mayo but with crusts off. 1 Higgedy cheese and onion roll, 1 nectarine, 1 packet of lentil crisps, 2 lotus biscuits
S: will be glass of strawberry milk (fortified with scandishake) and a biscuit
D: think will be quiche with mashed potato (cream and butter) peas and corn, pudding will be a slice of apple crumble with greek yoghurt plus juice
S: will be a biscuit and a juice

The issue is that she won't finish it, and has to leave some and throws/crumbles/spits food out, which clearly all adds up.

I feel I am failing everyone, what else can I try?

DarkBlueEyes · 22/09/2021 14:36

@Valleyofthedollymix oh yes, CC asked DD if she knew she was upsetting the family and she just shrugged. They are not bothered. I'm so sorry to hear that - mine takes hours too.

Rollergirl11 · 22/09/2021 15:03

@DarkBlueEyes so they are going to start communicating with you once a day but not yet? And what exactly will that achieve when it starts? I would ask do they offer meal support at home? I think they need to see your DD’s behaviour at meal times for themselves. If it were me I would be getting shitty with them and tell them they are not doing enough! Ask to speak to the care manager. Ask them how they feel about your DD going from 87% to 77%. Tell them that it’s pointless to talk about what is possible for an hour without them backing it up with any action. And all the while your DD gets sicker and sicker.

Referring you to Children’s Services, isn’t that Social Services?

Your meal plan for today seems absolutely fine. But if she lost 1kg last week than I would say she is probably managing to eat far less of it than perhaps you know?

I would have her sat eating all her meals at the kitchen table or somewhere where she doesn’t have the opportunity to get rid of food. And you have to watch her like a hawk the entire time for every meal.

See this is where it would be handy if she were to be admitted to hospital for refeeding as it is so strict and regimented and would deffo put the frighteners up her. There is no opportunity to not eat. If she doesn’t she has the tube.

myrtleWilson · 22/09/2021 16:15

Oh @DarkBlueEyes Sad
the meal plan sounds great but in practice how much of that is she actually eating - 50%, 30%, 10%. Have you worked out how much that % is of total calories? My own experience (and this was several months and two hospital admissions later) was we had to spell out exactly how much calories she was taking on. Me saying "she's not sticking to the meal plan" gave them too much room for interpretation. Me saying "she is eating less than 400 calories a day" got them suggesting a Christmas admission for re-feeding.

The daily call could be from CAMHS crisis line - we had that before - it was quite helpful. Also, don't be afraid to ring the crisis line yourself. If she's holding liquid in her mouth and not drinking it, if she's stuffing biscuits in her knickers - ring crisis. Honestly it took us ages to realise the crisis line was there for us - and the people on the phone were always lovely. They'd listen to us (often in tears) then speak to DD. If DD couldn't/wouldn't talk they'd give us some advice and quite often ring back later. Also, once DD saw us being proactive about ringing crisis, or saying we're off to A&E her behaviour began to change - I don't know whether it was the sense that she could prove to the ED she was complying with eating under duress, whether actually she secretly wanted staff to take control, or a 1001 other reasons - but she did change. Finally on crisis calls - I never felt worse after calling crisis and frequently wondered why we left it that long

I also agree about asking for meal support at home - the people who come out and do that know ALL the tricks and if your DD is anything like mine, she won't act the same way with the support worker as they do with you.

myrtleWilson · 22/09/2021 16:16

I'd just like to clarify - they listened to us (DH & I) as we cried on the call to them. We weren't making crisis line people cry!

myrtleWilson · 22/09/2021 16:20

girlie I'm sorry I've just realised I've not given a virtual hug about your dd's self harm. Am glad she left the safety pins out for you though. I think it is such a relief for them once they 'confess' or allow you to find out about behaviour.

Lougle · 22/09/2021 19:39

@Girliefriendlikespuppies how is DD now? Self harm is really tricky because there is a temporary relief which drives the next self-harm episode.

@DarkBlueEyes I can't quite believe they've told you what they will do.... eventually. Your menus look good, but I was wondering if some of the juice could be switched out for a milk based drink? The juice has calories via the sugar but the kidneys just tend to flush out the excess sugar and there isn't all that much other than sugar in fruit juice. Having said that, if it's the only way of getting fluids in, it's far better than coke, etc.

DD1 is no better. Her PCR was negative for Covid but she's feeling quite poorly and not eating or drinking well.

DarkBlueEyes · 22/09/2021 20:50

Hi Lougle, ideally we would give her milk but she hates it and has never drunk it even as a baby. We are lucky to get one in a day.

Back to the MH. Crisis line again. Spitting out last few mouthfuls of pudding and kicking off when I tried to replace them. Actual screaming. MH crisis line suggests trying to escalate via a complaint through PALS. What have we got to lose I suppose?

Right now she wants to be alone but we're saying no. Not wanting me near her and furious with me. Am I rattling the ED?

To be fair she's eaten about 85% of what she's been given today and I've caught most of the hiding.

She started off well and then can't handle it at the end of the day. Can't even finish her juice at dinner or manage a rich tea biscuit.

Sigh.

NCTDN · 22/09/2021 20:52

Sorry to hear how things are for some of you.
I don't want to take any attention away from that but sometimes a glimmer of hope can help. So DD was admitted in may to hospital at 69% wfh. She's currently 86% and today saw a couple of my friends. They've texted me individually to say how great she looks - not overly skinny but just slim, with healthy looking skin. I've cried over these messages as they mean so much. I know there is still a long way to go but back in may I couldn't see a way out.
Keep hanging in there Thanks

myrtleWilson · 22/09/2021 20:58

Great news @NCTDN, when they lose that ED 'look' it is amazing!

Lougle · 22/09/2021 21:32

@NCTDN that's not detracting at all. When you're in the grip of it it's impossible to imagine that you might get out of it. But I remember your first posts and it's great to see that you're on the upward trend. DD1 was 68% WFH, her toes were purple when she sat up and she was permanently cold. Now she's probably 98% (not feeling well has dented her appetite this week).

Girliefriendlikespuppies · 22/09/2021 23:10

Dark that meal plan sounds really good, for comparison my dds plan looks like this;

Bowl of porridge oats with approx 100mls of double cream and topped up with ff milk - it's a biggish bowl and a decent portion. She leaves around 10% of it. A couple of swigs of juice, more if I'm on her back watching her.

No morning snack

Lunch
Tuna Mayo sandwich, the thick Aldi bread (170 calories a slice!) butter each side, crisps and a small cake bar. Juice or smoothie

Snack - cereal bar

Dinner - large portion of whatever I've cooked and pudding.

No evening snack.

She always leaves something on her plate but over the months I've increased portion sizes to 'allow' for that.

Look for ways to add butter and double cream, eggs and potatoes are good at soaking them up I find.

Valley I had a similar scenario with my Dad undergoing major heart surgery at the end of last year, dds only concern was herself. It was so sad as she is/used to be very close to her grandad 😢 I hope your Dad is okay.

Thanks for your kind words re dds self harm, I just hate how bullying this illness is.

Bettybarkalot123 · 23/09/2021 07:51

@DarkBlueEyes your meal plan sounds good, I don’t think we’re pushing our DD enough. We’re both scared of conflict but if she wants to go back to school we’ve just got to unite together and focus everything on getting that weight gain. I’m going to book some parental leave from work for a couple of weeks or even just a day a week until after half term. That would mean I would work just two days a week from home.

The ED nurse eventually replied, basically saying that DD is 80% wfh, even at 85 % she will be running at a 15% deficit compared to her peers. Her pulse is mid to high 50’s but she describes it as rushing up to the 80s when she stands… no one has mentioned this to us before. We’ve always been told it’s fine.

She said school would have to consider carefully allowing her to return to school against the medical recommendations they have given. She said they are ultimately just guidelines and recommendations.
I’ve said we clearly need more support, given that dd is largely compliant but we’re seeing a very slow weight gain.

DDs year head is calling this morning for an update. She has also said she would speak to the ED team about the support they could offer dd when she returns to school.
There are three weeks to half term, so we’re going to accept she won’t be back to school before then, but work our socks off to get her as high in 80s as we can. I think if she’s 82% by after half term we will go against camhs and send her back, assuming school are happy to take her.

No idea if that’s ok, but my instincts are saying she would be better in school. Knowing DD as I do.

alexiavalentine · 23/09/2021 08:28

@SoTiredNeedHoliday

Starting a new thread, no 3 is full
hi all, i've never been on one these threads before but i need advice for my dd14. In lockdown in 2020 she lost a 1/3 of her weight from june-september. Me and dh didn't know what to do, she said she was eating 'healthier' and it appeared to us she was still eating a normal amount. In october 2020 she broke down, she was very underweight. and she just started crying and crying because i cooked toad in the hole for dinner. Since then after numerous talks with her she has managed to gain the weight back with our support. However now i am noticing her turning down food and i'm worried she relapsing. How can i nip this in the bud early?
DarkBlueEyes · 23/09/2021 09:29

Hi @alexiavalentine I'm the last person to advise as I dont' seem to be able to help my own DD let alone advise anyone else, but someone will be along to help I am sure.

I've just lost the plot completely in front of DD. I howled for about 20 minutes - my 17 year old who has anxiety herself came downstairs to comfort me. I can see DD wasting away in front of my very eyes and nothing I do seems to stop it. She asked for Weetabix today and I put two in, crumbled in a third of another one, and had the temerity to add yoghurt and fruit. That got thrown across the room and the extra weetabix scooped out. I told her if she didn't eat it I'd take her to A and E again, cue screaming. She did eat most of it but left all the fruit.

God. How do people do this for months, let alone years? I am completely broken.

Diagnosed in May and we are now in a worse place than we were then.

myrtleWilson · 23/09/2021 09:48

Hi @alexiavalentine welcome, although sorry you have to be here. It does sound that there may be an issue with your DD. Many 'start' restricting by turning to 'healthier' foods - soy/oat milk instead of dairy milk, announcing interest in being vegetarian/vegan. I would book in with her GP asap to get baseline observations done (weight - blind if needs be, stats like blood pressure and bloods). Not letting them restrict even a little bit is key I think. BEAT and Eva Musby are good resources to give you some pointers but stick around as there will be lots of advice...

@DarkBlueEyes - it is incredibly tough, honestly the 9 months we were in a similar place to you was hell on earth. Being really strict & consistent, reassuring her that you love her, trying to find a modicum of space between her and the ED that you can insert yourself - you're doing all of that. Don't be afraid to go back to A&E if needs be - I think that level of consistency is important in terms of showing the ED that you're not letting it take charge. Have you written down a timeline of your DD's progression - we found that helpful in terms of being able to 'evidence' the change.

Betty - do you feel able to share your DD's usual meal plan and we could add in suggestions. Is it worth doing some motivational work with DD - we did some exercises previously that I can dig out and share?

Bettybarkalot123 · 23/09/2021 10:12

@myrtleWilson
Thank you so much! Most days meal plan looks like this:

Breakfast - 2 weetabix, with 200 mls of oat milk, a chopped banana and a side bowl of strawberries or raspberries. 300 ml of fresh orange juice. Breakfast is very rigid, this is eaten in full every day. No left overs. On a Saturday morning she does some volunteer work at a riding stables in return for a half hour lesson and on those days I add a small scotch pancake with jam or another half weetabix.

Morning snack - nesquik chocolate milkshake made with 200ml of semi skimmed cows milk plus a fibre one birthday cake bar or a non diet alpen bar.

Lunch - really decent sized bowl of soup and a slice of granary bread or a wholemeal sandwich thin (she refuses to eat it if it has butter on) or a hummus wrap with grated carrot, spinach. She has the wrap with portion of pop chips. Plus cucumber and an apple. Pudding is usually a mini custard pot (100cal) and strawberries. Or a 100 cal portion of strawberry oat yogurt.

Pm snack - 200ml of orange juice and a packet of prawn cocktail quavers

Tea - jacket spud with beans and a small amount of cheese, or a Buddha bowel (couscous, falafel, roasted veg, spinach, small amount of hummus)
She likes a veg curry with rice. Or a sweet potato tagine or sometimes he’ll eat 3 (sometimes 4) frozen veg fingers with couscous or new potato’s and peas.

Pudding is always tricky but we aim for a pot of rice pudding or a non diet yogurt or a small vegan chocolate pot (100 cals) so we add fruit to that as well.

Evening snack - 300 ml hot chocolate made with oat milk and another fibre one cake bar.

I think the snacks and tea are the problem. She sticks to snacks that are under 100 cals and tea tends to be too much veg.

Girliefriendlikespuppies · 23/09/2021 13:17

Alex did you see the Dr when she lost the weight previously? Your story is v familiar as my dd did almost exactly the same during the first lockdown. I'd echo everything Myrtle said and get her to the dr for a chat and observations ASAP. I'm not sure you can 'nip' ED in the bud unfortunately (if so none of us would be here!!)

You need to take control of your dds food choices (she has no choice, you make all the decisions) and give her 3 meals and 3 snacks a day, all high fat high calorie ideally.

Do you have her current weight and height? Lougle is v kind and can work out her wfh for you I'm sure.

Betty personally I'd ditch the oat milk and insist on ff milk (and add double cream to it) the snacks could be higher calories, ideally 200 plus. Hummus and breadsticks might work, flapjacks, a muffin etc. Did the veganism start with the ED? Because honestly I think you have to tell your dd being vegan will delay her recovery and may delay it from ever happening 😕 I don't think you're going to see the weight gains you want on a vegan diet - sorry. I think Tabitha Farrah talks about this, I'll see if I can find a link.

Dark you are doing brilliantly, keep going!! Your dds behaviours show you are winning, I appreciate it might not feel like it but the fact she screamed etc but then did eat the food is a massive win. You are stronger than the ED and you will fight it for her.

NCTDN · 23/09/2021 13:40

I echo others dark don't be afraid to go back to a&e.
I'm fascinated by what many of you can get them to eat for breakfast. There's no way dd would eat 2 weetabix never mind any more.