Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

@BagpussSaggyOldClothCat oh my goodness that sounds so tough. Living with an ED sufferer is exhausting and I remember being on edge all the time. However her ED is really ruling the roost. Please remind me how old she is and her wfh?
Tbh I think it's time for some tougher love. There is no way her ED should be making you and your DH feel like this 24/7 Nor making you think about splitting up. Nor dictating where you go in your own house. That is not on at all.
I found that confronting the ED despite the distress caused to DD made it retreat a little every time. I didn't think I'd had a good day if DD hadn't lost it with me!
It isnt reasonable to demand silence in a busy house with your DH wfh. I imagine it isnt OCD but the ED.
In terms of the texts I would merely reply 'I am sorry this is hard for you, but we live here too. I am happy to come up and help you sit with the anxiety or talk on the phone but i am not doing to be text' Once. and then 'I am not discussing this further, my offer to talk stands' in response to other texts for that incident.
Could you set some ground rules? May be set a time when she can be out of her room and you will stay away. A set time for washing? This may back fire though.... Has she got music she can play. Noise cancelling headphones?
Have you searched her room for sharps etc and removed them?
If so I think it's time to call her bluff a little. Has she actually self harmed before? Currently her ED has all the power and maybe it needs to be wrested back little by little.

Hi @Moomarre I work that out at c82% wfh. I cannot believe they have discharged you...
The way I do it is to find the weight that gives 50% percentile BMI for her height and DOB (using NHS app) and then divide her act weight by that weight. Its not totally accurate but a good approximation. She'd need to be 54.5kg to hit 50% ile BMI for her height.

Thank you so much Lottsbiffandsmudge. Dd is 17 in first year sixth form although she doesn't attend anymore. I'm not sure on her exact wfh but she was just over 90% a month ago. She eats her plan well, which I'm absolutely thankful for every day, but the other behaviours are getting worse. She was so happy when she was 78% and was still going to lessons and seeing her friends and talking to us. I wasn't prepared for her to be so much worse mentally when in a much better place physically. What an evil illness this is.

Your words have really helped. I must stop walking on eggshells and confront some of these issues that have crept in stealthily. A lot of it is my fault as I'm weak and I try hard to keep everyone happy and not rock the boat.

Please don't take my words to mean you're weak.. I don't believe that for a moment. You have got her to a safer weight which has taken strength and courage most people will never understand. You are strong.
The battle is long and tough and we are parents at the end of the day trying our best with limited help. The illness is mean and sneaky and we all want out kids to get better and so we find ourselves doing as much as we can to facilitate that.
Sometimes an outsider can see a different picture. That's all.
I think everyone on here is amazing.

Bagpuss I've not read the replies (as im at work 🙈) but you are giving way too much control to your dd, why are you tip toeing around her?

My dd threatens to kill herself a lot, this was definitely worse at the height on FBT and EB but she stills says it now occasionally. It probably sounds awful but I learnt to just completely ignore it, it's another form of control and by trying to facilitate her anxieties you actually make them worse and enable the ED.

I kept dd as safe as I could, I removed sharp objects from her room and the bathroom, I locked medicines in a box, I kept a very close eye on her and tried not to leave her alone for very long.

But I absolutely would not tip toe around her and allow for ridiculous demands. Your dd has to learn that uncomfortable feelings are just that - uncomfortable. We all have to manage difficult feelings, that's a part of life. Sounds and people might make her feel uncomfortable but it's just feelings, they will pass and she can learn to manage them.

If she texts you 'I can hear Dad, I want to kill my self' then I would reply 'I'm really sorry you're struggling so much, you are safe, would <insert an activity> help?'

Lottsbiffandsmudge oh no I didnt read your words like that at all, it's how I feel about myself as I've let the situation get on top of me. But I've done it before and I can and will do it again and come out even stronger. I often just need to hear someone telling me I can do it.

I agree everyone here is amazing and it's quite overwhelming thinking of everyone dealing with the most difficult situations daily. I absolutely could not get through this without the wise words of people on here.

Unmumsnetty hugs to all. You can do this.

Girliefriendlikespuppies Thank you. I check her room and keep meds in the house to a minimum to keep her as safe as I can.

I find the threats really distressing even though I'm sure she wouldn't do anything. It's only since EB (if that's what is happening) that she's been making threats. She has SH before but mostly at the beginning of her illness before I knew about it.

Haven't been on for a little while but have read a catch up tonight and my heart really breaks for those of you who are really struggling with the battle with the ED at the moment. The paralysis of fear takes me back to our moments in the eye of the storm - but know you are all so strong - I don't think anyone who hasn't gone through it genuinely understands the depths of despair and the resevoirs of mind blowing determination that you all experience hour by hour.

DD has started private therapy this week with a specialist in ED recovery -she's not cheap(!) but we think/hope it will help her develop insights she needs to manage this through the rest of her life - interestingly we've seen a pattern of behaviours emerging where something goes from being good for her to being potentially destructive - you know when a train switches tracks - it feels a bit like that - eg she found running really cleared her head, it was a time the ED was less present but then over time the running itself became suffocating and causing her anxiety. We're able to nip it in the bud at the moment but she obviously needs to explore whats going on and how can she self manage. She turns 20 in a couple of weeks but I hope I'm allowed to stay on the thread for a bit longer (our first thread had the word teenager in the titles, but clearly my sub conscious was planning ahead thread 8's title!!!)

I think you have to find a way of containing their fear and anxiety without (at least outwardly) allowing yourself to become overwhelmed by it.

I think I almost disassociate now when dd threatens suicide, I acknowledge she's feeling rubbish but otherwise carry on doing whatever I am doing.

By validating their fears the fears just get bigger, I suspect ever if your dh moved out your dd would find something else to fixate on. You have to show them their fears are completely unfounded and being faced with them they will be okay.

I'm not sure I'm explaining myself very well but hopefully you understand the gist!

If you are really struggling with your own mental health please speak to your GP, some counselling for you or even medication might help you feel more able to cope.

This illness is the absolute pits, you are doing amazing just to keep putting one foot in front of the other.

Thank you.

Although weight itself wasn't discussed in front of her (she is being blind weighed), WFH was discussed and there is an expectation that she will get to 100%. Although she was tiny at birth, she got up to 100% WFH as a baby and tracked at that through to mid-infants at school. DD was very stressed about 100% WFH, and even I am a bit concerned about getting her to 100%. I am quite petite myself and have weighed the same for last 20 years except for pregnancy. She has been at 90% since about age 10 which ties in with when she started sports outside school. I can see the logic about getting to 100% as it gives a buffer zone which we didn't have before... She needs to get to 85% just to get back to school. I have done the maths myself on the weight and I am not telling DD!

I ordered the Eva Musby book but haven't managed to read it yet discreetly with DD in house or on public transport. I have started to look at the website though and just need to focus on this more now.

Yes, I can see that about the meal plan and I am really hoping that at next appt they say that some portions should be increased.

Thank you.

She is 13 (3 months from turning 14). Unfortunately the sports definitely contributed to weight loss/calorie deficit and then the ED must have started to creep in :( got worse when she lost her appetite due to stress from friendship problems/bullying at school, and then it took grip. I had got her to the surgery by this point but I was fobbed off there and then it took another 2 months before she was finally referred by an external medical professional :(

She is very down about no sports as she is beginning to realise that it is going to be a while until she gets back and is upset that the season may finish before she gets back.

@mumandbambinos my DD was year 9 too and diagnosed in the Dec at 78% wfh and also plays a lot of sport.
Your DD has this huge incentive, to get back to her sport. That is what drove my DD on/ was my incentive for eating (altho we were in lockdown too so she wasn't actually missing it). Dd was also exercise compulsive.
Please try to let go of the wfh thing. If she has been on the 90th percentile in her red book type growth charts then 100% wfh won't get her back there (it's based on 50% BMI percentile) So you may need to go someway over anyway.
My DH was fixated on DD 'overshooting' and becoming unfit/fat. Even at 108% wfh which she eventually got to this never happened because she was back playing sport. And I went for 'state over weight' and kept going until I saw real improvement. At 95% she was still trying to sneak off to run laps. That behaviour went around 100%. But it took over that for her to really improve.

For now anyway stopping losses and turning it round is the main aim
It's not a short process so I wouldn't think about the end point now, focus on each day and expect an up and down road. Weight gain is never linear.

Moom this is actually disgraceful and if I were you I'd put in a formal complaint via PALs, to basically write your dd off and say well she'll sink or swim is terrible. Even if your dd doesn't engage (my dd never did either) they should still be checking her physical obs and supporting you at the very least.

Mumandbam I agree with lots on not getting too hung up on wfh, state not weight is definitely a better indicator and that varies a lot between teens. Also if you feel the portions need increasing just do it, Camhs meal plans are always too low on calories imo and you know your dd much better than they do.

Thank you @Lottsbiffandsmudge and for the info on how to work it out too. I was estimating it around 81/82% too so was surprised they had discharged. She was 74% when we first got seen and did get up to 86 briefly before dropping back to 84 and hovering around there for the past year. She hasn’t lost any weight since we were last seen but has grown 1cm and is obviously older which affects it.

Apparently the GP has to approve discharge and they may not as she’s still on a high dose of sertraline so we’ll see what happens

@BagpussSaggyOldClothCat a year ago my dd was really triggered by dp and I honestly considered separating from him to help her get well. However the last month she has been able to interact with him again and they’re starting to have normal conversations and build a relationship again. So things may well improve without you needing to change anything.

@mumandbambinos its good that your dd has an incentive. All my dd was worried about was her GCSEs and was initially motivated by those but then spent so long off school that she stopped caring about them and had nothing to motivate her. She made it through them and is now at college, attends most days and seems to have a good social group but still doesn’t have any motivation. If you told her she’d have to stay off college or not socialise she’d just shrug and not be bothered. She’s fine just lying in her bed (this is the depression I know, but makes it hard to encourage her because there is literally nothing she cares about).

Hello, it's been a while and sorry to hear of the crapness some of you are dealing with but also I'm celebrating any small wins.

A few things that jumped at me.

@BagpussSaggyOldClothCat I've said this before but DD had so many OCD like traits that completely evaporated when she put on weight and ate a reasonable amount. It was all ED. I think Lotts' suggestions about how to respond to her texts are brilliant.

@Moomarre I agree with others that she shouldn't be discharged at her low weight and bad state. However, to give another perspective, we sort of ended following a similar path with DD. She was just utterly stuck at about 85% and the clinic were exasperated by the lack of progress. As an experiment and with a sort of contract, we allowed her far greater autonomy around food (for example no more lunch supervision). I think the idea was that it would break the stalemate one way or the other (either she'd plummet and get hospitalised or she'd improve). She didn't put on weight for a few weeks (but didn't lose any either) and it turned out to be the point at which recovery began. I know it sounds dangerous and counterintuitive, but it worked for us.

@mumandbambinos we had the same worries about 100% WFH as we felt sure it would never happen. Logically it seems bizarre to me that it should be a gold standard when children/people are such variable shapes and sizes. I think it does a disservice to all, but expecially to those who have anorexia but never actually become underweight, something the medical world is increasingly acknowledging. I don't know what DD now weighs and I doubt it's 100% but I think she's fine and looks well.

DD continues well and I'm hoping that GSCEs don't knock her off this. I don't know that she needs to keep on Sertraline (50mg) dose but she said she doesn't want to come off them until after the exams so that's what is happening.

We almost never talk about the whole nightmare but the other day she was getting super stressed about a football match and I said that I worried that she'd replaced food with fandom. She was like 'der, of course I have'. She said that her social media feeds used to be all skinny people and food and now it's football. It's what she thinks about last thing at night. It worries me in that it's never a good idea to put your happiness into the hands/feet of footballers, especially the team she supports...

@BagpussSaggyOldClothCat "By validating their fears the fears just get bigger, I suspect ever if your dh moved out your dd would find something else to fixate on. You have to show them their fears are completely unfounded and being faced with them they will be okay."

What @Girliefriendlikespuppies says here is absolutely true. We have been chasing down DD's disorder as it jumps from food to exercise to OCD behaviours and every time we put up a boundary we get spectacular meltdowns followed by an admittance a few days later that those boundaries were helpful. (Though if I respond or point this out another time I get 'shut up!!!' shouted at me but I now realise that's the ED for ya.)

Also DD says she's wants to die on average 5 times a week. It sounds awful to say but I don't believe her. What I do believe is that in that moment she is filled with despair and disgust at herself. And then it passes. I do say "I can see /tell how awful this is for you" a lot but I just keep going.

I do appreciate it's easier for me to say though, because DD is so young. And we do get a lot of lighter happier moments.

That said... right now my fantasy is for her to be well enough that I can go to the loo (no 2) without her having to be in the room with me...

Hi everyone. Thanks for all your kind thoughts. DD was readmitted to hospital yesterday, with bradycardia and hypothermia. I'm relieved actually as she's safe there at least (until she gets to a minimally healthy heart and gets kicked out again, anyway...). I'm now concerned though about DS (15). He's always had a really sunny nature, but increasingly becoming extremely upset about the whole situation (he's always been very close to his sister) - crying inconsolably and not wanting to go to school. Family therapy was not helpful as the therapist wanted him to take breakfast separately, so he wasn't distressed by the daily row over breakfast. He was trying to explain he 'wanted his family back' not to be apart from them. I feel so sorry for the poor kid. How have you helped stop siblings being dragged down?

I think siblings really get a raw deal in all of this. We tried so hard to do things with just him, but that doesn't help getting the family back together. There is no magic solution unfortunately. Does his school know what's happening (are they at the same school)?

Nan I'm sorry things are so rough, would you be able to afford some counselling for your ds? I wonder if it's possible to register him as a young carer as this might open up some more support. My dd is an only so no direct experience but can imagine it's awful for siblings ☹️

@NanFlanders
Your post really resonates with me.
My DS is 16 and also very sad. DD2 is currently in hospital and the house is very quiet.
Meals are such a normal and previously enjoyable part of family life, when you take that away and replace it with stress & anxiety it impacts siblings so much.
Its been so long since we’ve been able to have relaxed meals or trips out anywhere and the atmosphere at home becomes so tense that it impacts massively on siblings.
DD1 ( at Uni) talks to her friends a lot and is much more open about how she’s feeling about her sisters illness whereas DS hasn’t even told his friends his sister is ill and finds it really hard to talk about. He is tearful and also talks about wanting his family back or how nothing is the same as it was. Distraction seems to work better for him than talking.

The effect on siblings was what used to really get to me the most. It infuriated me and I'm afraid I lost my rag a few times about it.

DS, who was in sixth form at the time, burst into tears during a talk about eating disorders at school and his teacher gave me a real telling off for not having informed them (he was a different school to DD). He saw the school counsellor who was worse than useless. When he told her that his sister had anorexia, she said (and I'm not exaggerating), "don't you think she might in fact be trans?".

We took DD's younger sister for therapy. She had loads of anger about it, still does. After two or three sessions the therapist said she didn't really need therapy, her difficulties were in part due to a disconnect between her age/body/life and her actual maturity, something really common after Covid (ie they're all about two years out of whack).

So sorry to you both @NanFlanders and @Frankie291 - it's heartbreaking, isn't it?