Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@mum2three48 Ach! I was dead pleased to read your update, it was really encouraging, and sorry to hear about the weight loss. This bloody rollercoaster is annoying isn't it!! However, what your daughter did in eating something unexpected and not her favourite was still really good - I had my daughter literally screaming at me before lunch today because I wouldn't tell her exactly how many raspberries I was going to require her to eat... so take the little win, and keep going against the little loss.

I'm going away for a short work trip next week. I feel like I'm going on holiday, can't tell you how much I'm looking forward to not being here, which is quite sad really. I've got two new books downloaded in my kindle for the journey! What is life coming to!!

@SwattyPie I hope the appointment goes well. The ED team keep asking if the tantrums are teenage push back or the anorexia. How am I supposed to know but she's definitely a nicer person if she is in control. It's so difficult to know what is best.

@greydoor enjoy every moment of your trip. We all need some time away from this horrible illness and we have to get it whichever way we can.
I think we just have to look at the positives. I always try and think what the worst days were like and then every other day seems a little better.
It would be so nice to be a normal family just for one day

I've just been out for a run with a local group I used to go to before this ED hell hit. Can confirm I feel SO MUCH BETTER for it (and I hate running!). Came home to a stream of messages food related, about tomorrow, from DD, which I ignored whilst I had a lovely long shower. By the time I went to see her in her room, she was sound asleep. I've decided she'll be in a foul mood tomorrow whatever I do, so I'm taking tonight entirely for ME. There is a lot to be said for self care. Sorry if I sound selfish and uncaring, but I'm honouring my OWN life today. I've done as much as I can for everyone else right now. Best wishes to everyone else on this thread.

@SwattyPie good for you, so glad you've managed to find some time for yourself. It's not selfish or uncaring at all, it's an important investment in your own wellbeing and you absolutely should not feel guilty about that.
@greydoor enjoy the trip! Do make the most of it, I have a 2 day work team event with overnight stay coming up in November and I can't bloody wait!

@mum2three48 sorry to hear about the weight loss, that must have felt like a blow, but on the other hand that sounds like a really positive step with your DD recognising her hunger and not using the food as an excuse not to eat. We've got to keep focusing on those little victories and remember how far we've come.

I've had a pretty shitty evening. Turned up to hospital to collect DD for home pass and I knew right away I was in for a fight. She informed me she wasn't coming home. I'd just had an hour long meeting with the psychiatrist and outlined my concerns that hospital is no longer the place for her. She's become almost institutionalised, doesn't want to go off ward even with staff to do activities she would have jumped at a month ago. Not sure exactly what's underlying this, but she's shrunk her world right down now and it's getting worse by the day. This has somewhat coincided with an increase in her dose of Sertraline...does anyone know whether this could be an explanation? The psych didn't seem to think so but i think it's worth considering. Anyway after 3 hours of screaming and awful scenes, I got her into the car (4 staff involved in getting her down to the car park) and we came home and she's been nice as pie since then. I don't understand! We're approaching discharge and she is understandably anxious about that and leaving the safety of the ward, but honestly the scene today was horrendous. The senior charge nurse had said there's a chance they will just discharge her from pass and she won't go back to the ward to avoid that kind of situation happening again. Anyone else been through similar and have any insight which might help me to make sense of this? She's been in just over 3 months now.

@GrannyRoberts that sounds horrific, I’m so sorry you all had to go through that but glad she was better at home.

I guess it’s control and tipping the balance. Physical transition from one safe place to another sounds like it caused overwhelming panic, and her teenage unwell brain can’t process that logically. It’s like someone letting go of her life belt until you’re home and she knows it’s tethered again.

Many adults feel secure in hospital and don’t want to come home, being a patient and being looked after is very reassuring. Hope today is smooth for you both x

Granny that sounds incredibly stressful for everyone involved. My dd has never been an inpatient but has had extreme anxiety and had hours of cajoling and reasoning to get her out of the house for appointments etc and once at our destination it was the same trying to get her out of the car. She's very attached to her room and it's her safe place. I guess your dd feels this about the unit and as Glitterfarti says once at home she gets that same feeling but moving between is obviously causing her anxiety to flare massively. Would putting headphones on and listening to favourite music while getting to the car help her at all? Or maybe you stay in the car and staff bring her to you? Or would another time of day be better such as the morning (if possible) so dd doesn't have all day with anxiety building?

SwattyPie I love your positive post and you're not uncaring, you're doing what you need to do for yourself so you can care for your dd effectively without burning out. Keep up the routine and dd will eventually get used to you being out. I tell dd in advance that I'm out between 6pm and 10pm or whatever and won't be able to look at my phone so please talk to dad if you need anything or have a conversation with me before I leave. Planning for it allows me to switch off properly.

Thanks @Glitterfarti and @BagpussSaggyOldClothCat. Everything you are saying makes sense, hospital has become her safe place, although it's often not a particularly happy environment for her. We had a meeting with the ward and community team today and the decision was made to accelerate discharge as the backwards and forwards seems so hard for her. So she's back early next week for 3 nights and then she'll be discharged. I feel it's the right thing as her progress there has plateaued but I am still quietly freaking out about how we'll all manage.
Today has been good so far - she was at school this morning and that went well. She seems calm and happy enough overall. She doesn't know about the discharge date yet.

granny, that sounds incredibly stressful. Tbh, I have given up to understand DD and the sudden changes in mood and behaviour. It can be so erratic. From reading on here, it just seems to be part of the illness. But glad that home time (once home) went better and that school went ok.

DD's dose of setraline was doubled at some point (iirc from 25 to 50 mg) and we didn't notice any new/strange behaviours.

Hopefully the next few days will be smoother for you all.

Swatty - good for you! I know everyone goes on about putting your own oxygen mask on first, but blimey it's hard to actually do it...

Granny - that sounds like a good plan. Many moons ago I worked in a psychiatric ward and the transition home again was a really tricky time for lots of people, it does feel safe and predictable when you're being looked after, although obviously there are lots of down sides and a ward isn't a place to live. Some people really benefited from a long slow transition, and others just needed to have a very short one. Hope the planning you'll be doing goes ok, and hope the next chapter goes well.

I've got a horrible bug!! I'm really hoping I've recovered for my holiday work trip next week. But the loveliest thing happened, my dd looked after me a little bit!!! My dd is in there!!! I've shed a few tears about that, she did just offer to get me a cold drink, but she is in there!!! This whole thing is a rollercoaster...

@greydoor sorry you have a bug! Hope you make a speedy recovery. I totally understand where you're coming from with the empathy thing, so good to see some little glimmer of your real DD coming through.
Thanks for the insight into the psych ward / home transition too. I think DD if asked would prefer a longer transition but I think there probably is little point in prolonging the agony. She's not making progress on the ward, and in fact seems to be going backwards, and me and DH are as ready as we'll ever be (I.e. not very!)

How is everyone doing?

Just offloading to people who understand. I'm feeling low today thinking about Christmas. It suddenly seems everywhere in the shops. It will be our third one with ED.

Dd is a lot better physically than the last two years but many issues stop us being 'normal'. We used to be a big foodie family and would enjoy Christmas shopping with meals out, wandering the markets with street food, visiting friends for food and vice versa. We can't do anything like that anymore as a family. Anything involving food is out.

Dd avoids family gatherings and most of our family birthdays are over the winter so it's awkward. We have two 'big' birthday celebrations coming up that will be tricky to navigate and I'm worrying about them already.

We can cope with ED well when we have routine and consistency but anything out of routine is always difficult 😔

bagpuss totally get the Christmas frustration. DH will be going to his family for a week (they are abroad). My parents aren't in the UK either and I had hoped to fly home but have decided to stay put. Still reeling from the Summer disaster of a holiday and absolutely cannot entertain a repeat of it over Xmas. Will just be here alone with the DDs but at least no pressure around food, nobody to visit or to invite. Makes it so much easier. I totally relate to the 'routine'. We are fine with that but nothing beyond.

I'm so weepy these past few days. Ds is very up & down and DH has passed on his cold so as well as the Ed he's feeling crap and his mood is awful. I've several times had to tell him off for speaking to his little sister like crap. I've lost all my fight at the moment, we had a lovely meal last night, so calm and he ate everything with no fuss but breakfast was a different ball game and yogurt was thrown all over the kitchen

I’m with you @BagpussSaggyOldClothCat and @Curlyhairedassasin, starting to get twitchy about how we’re going to navigate Christmas. Saw ED team yesterday for the third time, assessment still ongoing as everyone’s on the fence about emotional disorder/eating disorder. She is up to 84% wfh from 80% three weeks ago so that’s great, she might be able to go back to school full time after half term (currently coming home at lunch). BUT said to the nurse if we weren’t putting food in front of her and watching her eat it then she wouldn’t be eating anything. The idea was floated to leave her to her own devices to force whatever it is to come out more clearly, but I don’t want to risk her health. Don’t know what to do.

For those with children who purge - how did you know? I try to go in quickly afterwards but it doesn’t smell so I guess I have to get up quicker and listen at the door? She came out looking pale and watery eyed this morning when her Dad was trying to pressure encourage a second pancake, and I’ve had my suspicions before.

Sorry DS struggled today @Proseccoismyfriend, how has the rest of today been?

@Glitterfarti well done on the wfh that's great news. It's such a struggle to get the right support from the right team, I feel many of the professionals want to sign my son off because of his age according to them it's rare but we just want some help to stop it developing even further. I understand why kids have to become so unwell before help kicks in.
I've no tips for school I'm afraid but I'd be tempted to keep giving her meals so you don't lose the progress you've made. I've found it so hard to get here I'd be terrified to skip back. I did read somewhere that you go to the toilet with them (easier said than done) or ask them to talk or sing incase they are purging but again I'm new here and not entirely sure.
The rest of the day have been okish he was in an awful mood after his snack and wouldn't speak to anyone but dinner was calm again, he did try to pick out some potatoes and leave it but when I challenged him he just ate it. About to get pudding so that'll could be another ball game! I feel nervous as meal times approach and I know it's silly but I think it's because I've no idea what I might be facing.
I'd love to find some other kids that have recovered that he could speak to I think it would really help

Hey everyone. I've been thinking about Christmas today too for some reason. I have no idea how we are going to navigate it and make it happy for the other kids. I've been trying to buy advent calendars this weekend, the past few years the kids have had those naked marshmallow ones but obvs that won't work this year. I hate how this dominates everything.

We've had a hard day today too, maybe it's the moon or something. My dd has been in the foulest of moods for the last couple of days, really really horrible to us all. I called a friend earlier to rant that I was so furious with her and was imagining punching her in the actual face, and then cried all the way round tesco for being such a cow.

The good news from our end is that dd is steadily putting on weight. She is up to about 89wfh now. But not so great that we all are too - I guess there is only so much double cream and butter we can eat, my clothes are decidedly tighter now. Emotionally she is still struggling, we have a lot of screaming about things, constant attempts to hide or discard food, it's quite exhausting, and just grim having to watch every mouthful go in, and gather up everything that has been 'accidentally' dropped.

Did anyone see the webinar that FEAST did about weight restoration earlier this week? It was really good, I'd recommend it if not.

Glitter that idea to leave her to her own devices makes me quite cross. Intervention should not be based on being really ill - the risks of that are really outrageous. Surely if drs didn't know what kind of cancer someone had they wouldn't just let someone get worse for a while to be sure?!?!

Ahh @greydoor well done! 89% is fantastic let's hope her mood begins to improve. We have a lot of shouting and sobbing from ds, whilst he threw the yoghurt he said he'd rather die as it would be easier than this.
I'm so concerned about my dd, she's being really supportive and caring to ds but she hates this as much as we do. She's only 9 so I haven't given a full explanation as she's a bit of a worrier, I just keep reassuring her things will get easier. I bloody hope so.
I don't have much patience and it looks like I'm going to need to find some, such a long painful road ahead. I made the bin men really uncomfortable this week, I was outside while they were emptying the bins so I thought I'll grab it quickly he said thanks have a lovely day and I just burst into tears, never seen two grown men back away as fast.

Proseccoismyfriend

Aww at the bin man. I cried all through my recent smear test as the nurse was so caring. Then I welled up at my flu jab appointment because the queue man (who must have been 90+) was really sweet and saying 'have a lovely day!' to everyone. My emotions are so raw and never too far from the surface. I really hope you have easier days soon x

Great news about weight gain greydoor. I'm doing a no choc advent calender for dd with beauty items and practical stuff that she needs. I miss buying chocolate adverts and selection boxes but there's just no point. We make the best of it but it's difficult trying to keep dd eating and safe as well as doing things with the wider family. I've become a bit of a hermit and can't be bothered with seeing people to be honest.
You mustn't feel bad for feeling angry with dd, there's no one here who hasn't felt anger at their ED child. It's a hideous situation to be in and extremely stressful.

Glitterfarti
I wouldn't leave dd to her own devices st this stage. She must eat lunch and if that means part time school then so be it, unless school can assist with a staff member to sit with her or you can go in.
My dd doesn't purge but I know those that do are incredibly good at hiding their tracks. Best thing to do is keep her at the table for as long as you can, at least 30 minutes as its harder to be sick after a length of time.

@Glitterfarti agree with bagpuss, I wouldn't leave DD to her own either.

Can school not put meal support in place? We have that for snack and lunch. DD wouldn't be in school otherwise. Or would you be able to drive to school and she eats with you in the car park?

Re putting: DD had (probably we are not totally sure) never purged but as a precaution, she is not allowed to use the toilet for half an hour after eating.

@Glitterfarti my daughter has purged, but we're not 100% sure of the extent of it. She lost 5.5kg since end June though on 3000+ calories a day so my suspicion was she was doing it on the way back into school after lunch. We told reception and they stopped her using the reception loo and we upped vigilance and she's put back on 2kg in 3 weeks.

Signs before when I realised was basically down to her not clearing up properly eg food still in the loo or splashed on the side.

One time I caught her in the act as I had suspicions (that was the first time I realised).

Now we say no toilet 1 hour after eating.

Has anyone tried being really punitive? I've done a year now of caring and understanding, but she's not engaging and in the DBT assessments has conceded she is driven by negative rather than positive consequences eg rather than the positives of seeing her friends if she gets well, it's the negative of putting on weight that stops her.

So I've just had to say any loss again life stops and 24/7 monitoring starts. This is like the worst thing for her. But I figure I have to make non-recovery seem so shit that she stops purging and other ED behaviours?

I am worried about the risk of increased self harm, but her social life is becoming busier so I feel like I have to leverage this to full effect

Hi everyone. I made a post earlier in the ED forum. I have a teen SIL who is now extremely thin and has ED behaviours (tummy ache before dinner so will either skip meal or only eat a few mouthfuls) or has a McDonald's, cake etc but only takes a few mouthfuls and then skips a meal later on. It's all for show.

I tried raising my concerns with my MIL but MIL says SIL is 'lovely and slim' and is skinnier this past year because of a growth spurt (she has not grown in height - I would notice because I'm the same height).

I now feel a bit triggered whenever SIL comes to visit. I was extremely underweight at the same age SIL is now. I've recovered but now I'm feeling triggered. I haven't felt like this in years! Is anyone in a similar position? It's frustrating that I can't help her because I'm not her mum!

LittlePickleHead

Sorry I've forgotten how old your dd is. If she's still young enough then absolutely take back control and show the ED who is boss. Negotiate seeing friends depending on how well she eats/doesn't purge.

Helpmeplss

Sorry to hear about your poor SIL and your own past struggles. How old is she?
It sounds like your MIL is burying her head in the sand (been there myself) and maybe thinks it's a phase that will blow over. Some teens are naturally very slim but you see them eat well and in your case you're not seeing that. Unfortunately once she becomes very underweight she's at risk of becoming very mentally ill so time is of the essence. Is your DH able to speak with his mum and raise concerns?

@BagpussSaggyOldClothCat Thank you. She's 16 and always been slim (known her since she was in primary school) but this past year she's become extremely thin, gaunt. She started being weird around food since she was about 14. However, she's become really bad since she got with her bf a year ago. Even worse over the past few months.

MIL is overweight and is always on diets and then giving up and then dieting again. She compliments her daughter on being thin. It's really uncomfortable and I dread the next time she visits me to also visit my dd (her niece) and her brother.

I put this in Chat as I had no clue this board was here.

I think my DD has the start of an eating issue

She is 17 and at 6th form. She's 5 feet 6 and weighs 8 stone 2lbs.
In July she was 8 stone 12. She's not sporty or especially active.
I've noticed she's trying to skip meals. She's always been a bit of a fussy eater.,
She now refuses all desserts.
Some treats she was given for her birthday are unopened after 2 months.
I have no idea what she eats at school. She takes a packed lunch so it could get thrown away for all I know.
She will eat dinner in the evening but for example if it's pasta she won't eat garlic bread.
The only way I know what she weighs is that the bathroom scales is registered to an App I have .

I should probably state that she has only ever known me as fat and I'm trying to lose weight. She knows I go to Slimming World but I try to keep it low key and I'm more calorie controlled than following their plan. Her father and siblings are thin. Whole family vegetarian and reasonably healthy. A takeaway is a rare treat as is eating out.

Please can anyone suggest what I should/shouldn't do?
Im clueless. Thank you.