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

[Mummyoflittledragon]

New thread. The old one is full…

Thankyou. Yes the plan today is to get more clarity on when they will consider it safe to leave. I guess it'll be a combination of factors.

The meal plans are numbered 1-8 so, for example, do we need to be on 8?

They have mentioned previously releasing us for a while during the day to test the waters so even that would give us something to aim for.

It's not just my tiredness it's hers too. She's so tired she won't talk today so that means she won't engage with her session with the ED nurse today. It's hard anyway because we have limited engagement with stuff. She hates being touched so ECG/bloods/examination are always difficult and often refused. This just heightens it further.

I do agree about being here being a bit of a safety net though. There are a lot of things about being home that I'm dreading.

@Raspberrysins I remember going in for the meals! I kept thinking why, but then I thought, like with your job in teaching, if there is nothing to find they won’t find it?

Remember like in your job, they do this every day and it is proven to work, I suppose they’re looking at how strange we found it too! They do distract etc and ultimately I thought it was a break from the house 🤦‍♀️😬. Let us know how it goes xx

@Raspberrysins hope the meal goes ok too..update if you can, I'm intrigued.

It just sounds so.... Awkward!!

Good luck and I hope it's helpful.

@Pearl97 yes I guess you’re right! I just think it’s a bit pointless as my DD has made her own packed lunch (as usual) which does contain just about enough. So I know she’ll just eat it normally as it will feel ‘safe’. What they don’t see is the fact that she’s already controlled the situation 😅 but yes, I am interested if they do pick anything up from watching her eat it. She is so stubborn and seems to think that one week’s weight gain proves she can do it on her own without my input. 🙄

feeling very annoyed at myself this week as it feels like the ED has beaten me and every attempt I’ve made to get her to eat something different has not worked. Today’s Weigh-in will tell us the answer though!

Also DD thinks she can go back to school next week, and we do want her to as she has y10 mocks coming up. It’s all very tentative and waiting to see what the scales say is stressful! Our camhs key worker said that if weigh gain continues we are looking at least 16 weeks before fully WR. What I know is that it won’t really be linear, and that fills me with doom.

Thanks @Mummyoflittledragon , as others have said you're being so helpful to us all, I'm just so sorry you're going through such a difficult time yourself.

@CuppaTandBicky I'm completely with you on how you're feeling, I don't know how many times I've cried/ said I can't do this to myself recently. I think this must be one of the toughest conditions to deal with as a mum, as no way of knowing how long recovery will take. I'm just trying to look at this one day at a time, and hoping we don't have to stay in more than a couple of weeks so we can get a bit more normality with being at home. I'm missing my younger daughter like crazy, she's managing brilliantly being just with her dad but it's so hard, for everyone 😔 I went home for a few hours yesterday evening and came back to the hospital at midnight, lovely to go home but made me almost more sad to come back, that this nightmare is so far from over. Anyway, try and stay strong and hang in there, and more than happy for you to moan on here for support! ❤️

@Raspberrysins I would use today to air that. They made the lunch one day for us, and they also asked my daughter to have something different the next time we went. Then they came to the house to dinner to see portion sizes etc.

It is like parents evening for us!!! This is how we feel every time we see you!!!

Have they mentioned going back to school? I don’t need to tell you, but you have the PR and can decide. We decided not to return until after Christmas and the ED team agreed. They usually only allow them back when parents really request it! Xx

Thanks sending solidarity. We can do this!!! Have you had any update as to how she is doing? We are hoping for an update today.

@Pearl97 thats true hadn’t thought of it like that 😂. They said school is up to us, but the main thing they were worried about was her low HR (but that had improved last time). To be honest I think she will do more sitting down at school. I have struggled to get her to sit down at home! She also is trusted to eat lunch and snacks at school so no worries about her not doing that. She is a rule follower and I am pretty confident she won’t ever throw away food. If her weight started going down again we’d take her back out.

@Raspberrysins I suppose it’s about you being able to go back to work too, and showing her what is possible if she follows the plan etc.

I really hope today goes well xx

@Pearl97 thank you 🙏 hope all is going well at your end? X

@CuppaTandBicky it’s exhausting and may be a while yet. The worst scenario is to come home with her not committed to eating the meal plan and you’re too exhausted to do the hard work of supporting her. Eating to get home is common. When mine was in a general hospital, I always went home to sleep. Fortunately it’s 10 minutes but, when it was further, the hospital had accommodation for parents. I think most have that from other stays with other children. Could you try one of those options as you need to look after yourself to be able to look after her x

@Mummyoflittledragon Discharging because they aren’t motivated makes me so mad.

Motivation comes after restoring because the starved brain can’t be motivated to recover. However mine just has weekly physical observation because she’s not showing inclination to change .

It sounds like lots of people are in crisis but when you’re in a better place, I loved this book. It has changed how I think about anorexia in particular.

Food Mad - Amazon link

Still not allowed off the ward, as BP and HR still not safe. All i got from the drs this morning was 'stick to the meal plan, it's her medicine ' which I've heard a million times, argh!! Will have another weigh in tomorrow morning then I think the ED consultant is coming in, so will see if there's anything new to hear then. I assume it might be calorie increase time again though....

I might be wrong but i think the observed meal is also to see your/her behaviours as she eats, not just the portions. Hoping for good eating and good obs for all of you.

I don't know whether you're all on general wards rather than private rooms, which is a pain. There is normally a way to turn a noise that annoys you (an alarm going off on your room) into one that annoys the nurses (tje alert button). I'm sure you'll see the nurses always silence alarms once they come in the room. Just a thought to get your dd's a little more sleep

Ugh that sounds annoying that the HR/BP aren't up enough. We are allowed off ward (but still within the hospital) in a chair with HR/BP still low. To be honest though there isn't much to do and we don't go much because she hates it.
Are you increasing every week?

Yes that resonates. He has observed her refusing food or eating very little but just doesn't see it as a problem in fact almost entirely denies it. Sometimes he will talk about what a good appetite she's always had as if that's proof against what's happening now, rather than even more of a red flag... But I think that she knows there is a problem, and given the tears I think is relieved I've raised it. @Mummyoflittledragon that is exactly what I hope to be. Yes, it seems like assuming that progress is linear is the big mistake. Since I raised it she has been visibly eating some of the things we've baked, and a good portion of supper -- but I am not relaxing about it as I know now that might be a performance.

Sorry, no idea why some of my text has strikethrough! Not an experienced poster...

@ChristineBrooke with us, I was the one originally in denial while my husband was trying to convince me there was a problem. I tried so hard to explain and reason everything away and look for signs of normal eating (and there were some for a while but it was an act, causing her huge distress and then probably compensation behaviours). I couldn’t contemplate that she had an eating disorder because it didn’t seem possible as we were ‘good parents’ and she had a great home life. To me, having a child with an eating disorder would mean I had failed somehow as a parent and I could not process that. However I quickly learned that it is nobody’s fault. Eating disorders are caused by a perfect storm of biological, psychological and social factors. It’s nothing to do with choice or failure. Unfortunately it’s a horrible illness that affects more young people than I had realised.

Back from our appointment and things have got worse again - loss of 1.1 kg. I have had a big cry and now trying to channel my inner warrior. My DD has admitted to trying to control the meal plan and basically shaving off bits here and there. So she’s agreed to let me take full control finally. She has admitted that she is not able to trust herself to do it. I guess that’s positive. All I can think of is that yet another week has been added ti the months ahead of us 😓

@Raspberrysins I'm so sorry to hear that. But it's really positive that she's admitted what she's been doing and is ok with giving you control. That's really positive. I think unfortunately recovery isn't linear for this kind of thing, we're going to hit bumps in the road. Take it easy on yourself

@Raspberrysins I used to think like that, every weight loss or lack of gain meant weeks more of the appointments. In reality it often doesn’t though. The small 200g gains were more of an issue to us as they were classed as ok and then the weeks just carried on. This at leash means something will have to change. They won’t keep allowing losses and allowing you control is a big win.

How did lunch go or as they say is it too soon to discuss? I would say no school next week and use it as a week to see how things go. This doesn’t necessarily mean recovery will be longer, it just means it will be different. Like at school sometimes things just click with children, when you can’t imagine it ever will xx

@ThatSparklyOliveBird I really found the doctors quite unhelpful as they didn’t understand the ED at all. How often are you getting visits from the ED team and what are their roles? Not being allowed off the ward is torture, although seeing the outside world and not being allowed in it is too so sometimes staying on the ward was better. Are there play specialist or hospital school? Xx

@CuppaTandBicky have you asked for a side room? A nurse found me crying in the corridor and I told her I was going mad with the noise. A few days later we got a side room which we kept for the remainder of our stay. I think I offered to pay or buy them a pkaystation for the playroom. Something crazy but I was desparate. Definitely ask and keep asking xx

Thanks both. Yes I think we almost needed this because deep down I knew things had to change. She’s also just told me that she’s been not measuring enough milk etc when I’m not looking so she’s told me I can do it now. That’s all I wanted but it’s been a battle to get there. Definitely no school next week for sure. We need a good reset. The week after is suppose to be her y10 mocks but we might negotiate to miss some of those now as there are more important things to deal with.