Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

Hi everyone, just come out of our weigh in. Another slight loss. Feeling a bit shit as this week she has started to turn things around. The only good sign is her HR was 60 whereas was 40 to start with. They said it can take a while after their start following the plan. It is normal to stay stuck. We still haven’t seen a dietician which is so frustrating. So do we continue with the plan or try and increase? I’ve no idea. DD still wants to go to school next week so I’ve no idea if that’s the right things to do either. They said it’s up to us.

You've had another slight loss, which could just be a natural fluctuation. And your dd seems to want to let you be in charge. And as she’s not up to full intake, a loss isn’t unexpected.

When a person restricts, metabolism slows right down to ensure every nutrient is fully utilised. Once a more normal intake of food is established, the metabolism speeds up again. And ED sufferers can enter a period of hyper metabolism, where the body needs a lot of food.

I am not suggesting your dd is in hyper metabolism. However, I’m saying it’s evident she needs to be eating more, so increasing her intake gradually would be desirable if you are able to. You want to do a stepped approach so maybe adding an extra thing for 200/300 calories this week if you can.

As for going to school. Her HR is within more normal range, which is good news even if you’re disappointed about her weight. Allowing you to make her food / decide what she eats is a big deal for your dd I think. And she is trying by the sound of it. She really wants to do her mocks and this is a sedentary activity. And I think I would be capitalising on this moment.

My take therefore would be to allow it if she agrees to the following:
1 to continue to agree for you manage her food intake
2 agreeing to eat three meals and three snacks every day
3 to be open with her eating and tell you what she’s eaten at school and/or when not with you

How does that sound?

I agree about letting her go to school, hopefully you can too and the holidays are really close now!

I think putting some ‘rules’ in place is a good idea. You’re showing you trust her and she will hopefully show you how much she is trying xx

Thanks so much @Mummyoflittledragon you have helped to break it down into a decision making process. All these choices we have to make are so difficult so you’ve helped a lot thank you. I’m at the end of my allocated compassionate leave and need to speak to the headmaster about what I need next. I’m leaning towards one more week off if they’ll give it to me. DD can possibly do some mocks at home to send the message that her recovery comes first. My DH is going to try and step in the week after (!) which should be interesting. Not sure what DD will think about that. They are both very similar!

my overriding thoughts at our camhs meeting was that they must think I’m an absolute idiot. I’m sure they think I’m being a soft touch or some kind of mug. DD is still making her own breakfast and lunch but with prior planning / agreement with me. However I haven’t actually watched the scales weigh the oats etc. I know I need to do this but she desperately wants to be trusted. At this point I just can’t any more.

Last night we chatted and DD suggested that she could do her mocks at home (school had suggested this as I can invigilate ). I think this might be her way of saying that’s what she actually wants. The non ED voice has a way of sometimes telling you what they need to, this happens with cravings too I’ve noticed. Also when I told her that her dad was going to take over the week after she looked quite shocked / horrified. This might be a motivator for her to eat more.

I'm going to ask for one more week off today, wish me luck 🙏 a

@Raspberrysins you're not doing anything wrong. You and your DD are people and you are both doing your very best. Weighing oats so you get a few extra calories is neither here not there. Its a marathon not a sprint.

I was talking to a friend who had anorexia in their mid teens, we knew each other at the time. We are all finding our own way and different things will click for different people - I do find it useful to talk to people who havr come out the other side though

@Raspberrysins I really hope you get the time off you need. And yes, it's sounds like your daughter is telling you what she needs which is really good.

I can absolutely relate to coming out of CAMHs feeling like an idiot. My husband actually cried after one appointment because he'd been made to feel so bad. He never cries.

We're not idiots though. We're parents who are being asked to do something incredibly difficult. We are not eating disorder specialists with years of experience and no emotional attachment to a patient. We are learning as we go and we are deeply impacted by seeing out children distressed because we love them so much.

Thanks @Mummyoflittledragon for asking, she had a wobbly first week as she didn’t feel very well but is enjoying herself now. My nerves are still pretty shredded 🙈 she tells me she’s booked a bungee jump and a sky dive 😱

Hello, just checking in, hope everyone's ok? @Weightlossworried I love your description and completely agree, I feel like the team don't always get how we're feeling as parents and trying to manage the best we can, especially with juggling time with other children. Soooo tough!!
We're doing ok here, my daughter's a bit low as been told she's in hospital for at least all of next week, and i imagine longer. Weight continues to go up though and the team seem happy enough, so I guess we just have to go with their judgement when's safe to go home. So, another tedious weekend ahead for us, but on we go xx

@Weightlossworried I completely agree, I can cope in very stressful work situations but crumbled a lot in ED appointments!

@Raspberrysins I really hope you got the extra week.

@ThatSparklyOliveBird I remember the weekend feeling. You are so much closer to going home now though. Have they said what they are looking for, for discharge? Are you mainly just seeing the ED team? One more week in hospital could change the appointments when you’re discharged. They may not need to come to the house so much etc so it could be a good thing. I know when the sun shines and you’re hospital, the words good things don’t really go together! Xx

Thanks @Pearl97 she's still under the paeds team as well as ED; BP and HR still a bit off although improving daily. I'm hopeful they'll discharge us from their viewpoint next week, then it's purely down to the ED team as to how much they want her to weight restore before discharge, plus sorting out support for home. I know they're being extra cautious as this is a readmission, so I feel it might be another couple of weeks yet :( I'm torn to be honest, desperate to get home but both dd and I are very aware it'll be a whole different challenge once back, and I mustn't give in to the negotiating!

@ThatSparklyOliveBird FWIW I think the medical team will discharge you too. The ED team will have a plan and it may be sooner than you think. It is different once home like we’ve said before, but the food is nicer and the bed more comfy. You’re doing amazing supporting your DD like this. I hope the staff supporting meals is going well xx

Hey fellow warriors .. hope everyone had an ok day. We’ve had a shit show of a day since yesterday’s loss. I’ve told DD that I need to watch her more closely while she prepares her food. She has been promising faithfully to stick to the plan. But I just feel I would be an idiot not to be checking. So we had major push back. Quibbling over a slice of cheese at lunch. She threw two on the floor as apparently one was enough. Then lots of tears. Then dinner we had already agreed what we were having, but I usually let everyone dish up at the table. Not today. DH suggested we try plating everyone’s up. Well it was like Armageddon.. I’ve never seen such a performance over a plate of food. Changing the plate, heating it up. Multiple trips to the microwave. Fussing over the gravy while all the time sobbing and saying F off and that she wanted to die. The only difference was that I’d plated it up. I couldn’t believe the drama. I feel we’ve taken a massive step backwards. She just hates not feeling trusted (it’s the ED don’t trust not you) and she hates being watched. Of course that makes me think she’s being sneaky. She says we are rushing her and it’s too much.

on the positive side I’ve been given two more weeks off work.. which is obviously great but she is devastated as she wants to be at school and I’m not enjoying this time at home either much ! It’s so weird as she’s told us she is ‘locked in’ but today she says she doesn’t want to get better at all.

this illness is the pits. I’m not sure how long my DH can remain calm and collected either.

to all of you that have been through this I salute you! I feel like we are just well and truly stuck like this. She’s eating around 2500 cals a day and nothing is changing. It feels impossible. I can’t get her to eat more. Will it eventually go up at this level? Just take longer?

That sounds really tough. This really is a hard thing we are all having to go through.

I'm glad youve got a bit longer off. Even if she was safely back at school I think a bit ofa safety net is a good idea... Plus I genuinely think it would be really hard to concentrate and do a job properly when we are in the midst of this....battle!

@Raspberrysins oh I'm so sorry, that sounds so tough. I've had the 'i wish I was dead' comments thrown at me too, and they're very difficult to hear. I'm obviously right at the beginning in this so no help I'm afraid with how weight gain might work, but sending you solidarity and support! Hope tomorrow is a better day xx

Glad to hear her obs are improving.

We had the discussion about home rather suddenly and unexpectedly it went from "she needs to stay longer" and the very next appointment it was "we need to start home visits with a view to home"

I must admit it's very mixed feelings though because I know the risk of readmission is higher if we go too soon and I'm fully aware the ward is busy so they probably want the bed back!

How does your daughter feel about home? Sometimes hospital becomes a "safe" comfortable option and home becomes a bit scary.

@Girliefriendlikespuppies That's good your dd has weathered the storm of the past week. It sounds as if she’s quite resilient now. And I hope the daredevil exploits go well. The sky dive sounds amazing if scary as a mum.I figured statistically speaking sky diving and bungee jumping are safer than driving a car. And a quick google confirms I’m correct.
When is she coming back?

@ThatSparklyOliveBird
It sounds like things are moving slowly in the right direction. Fingers crossed this will continue for you both and for @CuppaTandBicky.

@Raspberrysins
I am glad you managed to get the next 2 weeks off. If your dd is happy to sit the exams at home, it’s a very sensible adjustment for the moment. You can use elements of what I’ve suggested for when she’s ready to go back to school.

As for now, yes throw back is totally normal. Remember what I went through to get my dd to follow meal plan and be open around her eating? She agreed one day, followed it through the next. Then the third day she flat refused. And this went on for a few weeks. She’s now following everything. But it was a struggle.

I didn’t remind her daily. She told me she’d rather pay for the holiday than stick to the agreement. And that I couldn’t stop her as she’s 18. My reply was that I wouldn’t be able to allow her going on holiday with her friend and family if she wasn’t sticking to what she agreed. And that dh and I would be discussing what we’d do about it. It’s subtle. But it plants seeds of doubt. And at the end of the day, I was serious. It would be irresponsible of us to leave her to go away with them and ruin their holiday! I didn’t need to say this, but was the next step.

When things are calmer, just remind your dd of the agreement. Maybe tomorrow or whenever you vs. This will rile her. And unfortunately this is the name of the game. Once there is calm, you have to challenge again. Is bloody relentless and painful.

When your dd gets like this, you just stay really calm. And when she is struggling, you reassure by acknowledging the struggling. ‘I can see you’re struggling with this. And I’m here with you. And I love you’. Stuff like that. It doesn’t seem to work with my dd, because she gets sarcastic and vile. But I think ultimately it does. It’s just dripping it in constantly when needed.

@Raspberrysins you have to keep taking control, it is hard but worth the battle in the longrun. I had similiar battles wrangling control off dd, she (the ED) hated it and hated me. In the longer term once she’s out of the kitchen and you’re preparing and giving her the food it does settle down.

The stock phrases ‘you can trust me I know exactly what you need right now’ ‘this is the right amount’ ‘I know this is stressful but I know what you need to get well again’ are helpful.

It’s also helpful to know that this approach of taking full control has a good evidence base behind it and that it works in most cases.

@Mummyoflittledragon she is doing well, I’m really proud of her. I’m hoping she’s been sensible with eating and drinking enough, the few times I’ve FaceTimed her she looks well. She doesn’t get her daredevil genes from me, I hate heights!!

@Raspberrysins I can completely relate. We're going through the same thing at the moment. It's awful and really makes you question whether you have the strength to keep doing it. I try and tell myself that the big reaction is a sign in doing the right thing - it really tells you how unwell they are. I do think sometimes you have to go backwards a bit to go forwards to.

One thing I'm really bad at is believing it will get better when dd is upset, it feels like she'll never be happy or ok with us again. She does always come round in the end though. I'm sure your DD will too. Sending you lots of strength to get through this

Morning. We are trialling a weekend at home including one meal and snack.

Armed with plenty of Fortisips, an agreed meal that fits meal plan and a determination to get her discharged next week so we can finally have a few hours uninterrupted sleep.

Slightly nervous.

Let the fun/battle commence..

I wonder what the readmission rate is?
No! Must stay positive!! But will that just lead to disappointment?

Oh wow @CuppaTandBicky best of luck to you, hope it goes well! Definitely enjoy the home comforts and sleeping in your own beds. Stay positive, I'm glad the sun is out for you too!
You asked how my daughter is feeling about going home, I think she's quite realistic and insightful with how things are. We've had tears and ' i hate this place i want to go home' but followed by 'I don't think I'm well enough to go home yet' In my mind I'm thinking another week here with weight gain and support then I'm really hopeful that we'll be starting the discharge process too xx

Oh I really hope it goes well @CuppaTandBicky !

@CuppaTandBicky that’s great news! The meals and snacks at home is so fab for you. This can feel harder than it is as you’ve been away for so long. Try not to over think it as it’s quite a shock to the system. I thought I wouldn’t be want to leave home but I sort of couldn’t wait to get back to hospital. It all messes with your head a bit!

Good luck @CuppaTandBicky

i know that for kids they heavily recommend distinguishing between the ED and the person, and pushing through confrontation. For what it's worth, with adults they really don't. Every recovered adult with anorexia i've spoken to has said the solution comes from within, not externally (I know this is the opposite of eg Eva Musby, I remember her book saying the edi doesn't need any will power at all because the parent supplies it externally). Since my DC has been away from services i've concentrated on trying to create the conditions where they feel worthy of change and completely stopped trying to enforce anything - and they've certainly not got worse, and i am pretty sure they've got quite a bit better weight wise, maybe gaining >10% of their body weight.

I'm not saying our way should be your way - but more that i hope you can all feel more confident you are doing an amazing job, even if it is not exactly what CAMHS expect. Realistically very few people are able to jump into 6 meals a day in public and gaining a kilo a week unless they are already mentally healthy, and noone should feel like a failure for not doing that. Especially as so many of our kids are perfectionists/high achievers it gives them another thing to think they have failed

@ChristineBrooke I was just thinking of you and wondering how things are going for your stepdaughter.