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

[Mummyoflittledragon]

New thread. The old one is full…

Thank everyone and I hope the weekend at home works out well @CuppaTandBicky

@unbuckle thanks for the reassurance. The taking of control is really the hardest thing for us as DD wants to do it all herself. She makes her one lunch and breakfast. When I wanted to do it I was faced with complete shit down so I just said fine then I need to supervise and we agree what you’re having in advance. She hates being watched which makes me suspicious.

@Weightlossworried how do you manage the meals? Are you preparing everything ? Is your dd managing 3 + 3? Mine is definitely having 3 + 3. She’s got into a sort of fixed routine with overnight oats. Then a Belvita bar. As that’s on the meal plan. She finds it hard to change from that. Lunch is a struggle to get over 500 cals. She will only eat lentil crisps but is having a babybel with her sandwich and a small soreen bar. I just wish she’d consider going ‘over’ but I know she feels pressured and rushed. But when there’s no weight gain you realise that more is needed! It’s crazy how much she needs to be honest. I just hope that eventually her metabolism will slow down enough for some weight gain.

@Mummyoflittledragon sending strength today and thanks for your kind words as always.

I prepare all meals, yes. She's not actually asked to do any herself. We do sit down together and so a weekly meal plan though so she has input into what the meals are. She is given 3 meals and 3 snacks. She has never eaten the morning snack. She only eats about half her breakfast. She will never finish her dinner but eats the majority of it. I think if I were to add up the calories it's around 1800-2000 of the 2500-2750 on her plan. So it's simply not enough for her to gain weight.

We feel very stuck. I wonder if my daughter is raging at our renewed efforts to make her stay at the table and eat because on some level she wants to eat more. She was deliberately spoiling the food this morning which made me wonder if she was removing temptation.

@Weightlossworried it sounds like you’re doing everything ‘right’ so I’m impressed with your strength! I don’t know what the answer is. Is your DD still attending school? Wondering how you manage this if so.. I know some people try and sneak in extra calories like ground almonds and cream when they’re not looking - however they told us at our meeting to try not to do this. I think it could work though? I’ve become obsessed with calculating calories now to try and ensure I have some knowledge and control when we go to the meetings.

Day one of meal at home was a disaster. Chose to try lunch and planned to be back to hospital at 3.30 in time for afternoon snack.

Absolutely point blank refused to even try the carefully planned and measured out lunch (made by me) even though we had agreed before exactly what it would be and she was happy with it. It was similar to what she would have happily eaten in hospital.

She just said "I don't want it". I did the Eva Musby "come on it's what you need, trust me, you can do it etc" and it just ended up in storming off point blank refusal. Distracted her, tried again calmly etc. Apparently when she comes home she doesn't have to eat anymore she just wants to go back to how it was before.

Came back to hospital early and by this point I felt so poorly (probably stress caused by the stressful visit home combined with about 2 hours sleep due to being on ward with babies/toddlers/early hours admissions) I dropped her off and went to sit in the car alone and fell asleep for 2 hours. Probably abandoning her when she needed me but I can't be there for her when I have no battery left myself and I told her that.

Hope tomorrows attempt goes better but I'm not sure what to do differently. We did everything the consultant advised. I'm just hoping tomorrow will just be different somehow. I feel it's gone so badly they won't discharge her if tomorrow also goes bad!

@CuppaTandBicky that sounds really hard, she definitely doesn’t sound ready to be discharged.

She might need a specialist inpatient unit.

@Girliefriendlikespuppies I’m crossing my fingers that your dd will continue to take care of herself out there.

@CuppaTandBicky
Thanks am a bit wobbly today. Migraine. Ugh. It’s the stress of exams etc,
I am sorry it didn’t go to plan. That’s ok. It just means your dd isn’t ready to go home yet. The hospital will absolutely be used to this. They were testing the waters, possibly see what the next move will be. As for leaving your dd, you did the right thing. You needed to recharge. You have to ensure you are in a fit state to look after your dd…. And amongst all that stress, I do hope you managed to get a big hug with your youngest!

@unbuckle I am totally with you there. Dd has not yet really admitted to having an ED. She almost did last September time before retreating. When I suggested ‘edi’ is an external thing, she got pretty angry at me. Idk if it’s an age thing. I couldn’t even say to her she had an ED for at least a year, because that would send her spiralling and she’d refuse to eat. And it’s not something she can conceptualise.

@Weightlossworried I have read the comments on your thread, but I can’t really advise much, because dd will only eat twice a week with us. There was too much alienation from her of me in the beginning. So I will tell you a little more of our journey instead.
When dd was in relapse last year, March time, so age 16, year 12, dh and I needed to get her back on track. It was awful. We grounded her. Told her she could go out to a friend’s house on the Friday only if she agreed to eat 3+3 again, add in one more fruit of her choice and to add pizza in as part of a meal.
Dd raged when she actually realised we wouldn’t be letting her go out. She tried to leave the house, but it was freezing outside, night time and she was quite frail again. We knew she would try to run off and this friend’s house isn’t local. She has a history of doing running off, but due to the temperature outside, it would have been too dangerous. So dh blocked her path. She ran upstairs and tried to escape out of an upstairs window. Dh pulled her back in and she attacked him and she ended up calling the police. The police didn’t come until 4 days later. The officer was great, ascertained dd wasn’t in any danger, and told her it was our parental choice not to let her go out when she’s still a minor.
Just to say things can get extreme. And I really understand how under pressure you feel and a hostage to this. The control from dd last year was unbearable, even after this incident. It only eased when she was in relapse this January, when she declared herself an adult and refused meal plan (which as you know she’s just agreed to go back onto).

@Raspberrysins
i agree with Girlie and letting the ED know you mean business. You can see one big example of how dh and I did it with dd. It’s really hard. And it works better when you’re doing it together as there’s no room for manoeuvre.
As for weighing stuff and leaving your dd to do it, that’s an absolute no. This is all about control. You would be better to do it by cups than weight if you can, because they’re so fixated on weighing stuff. For meals, it’s fists. 4 fists is a meal (which basically fills a plate), but 50% for an ED sufferer shouldn’t be vegetables.
if your dd wants to prepare stuff and if CAMHS are ok with that, your dd needs to know supervision from now on is non negotiable.

As for getting my dd to hit the 3000 calories, once she became hungry, she did that herself naturally. Much as putting weight on fast has its merits, that’s only good if the sufferer can withstand the mental health challenges with rapid weight restoration and can maintain the levels of eating required over a protracted period. And dd does struggle to maintain that level.

And whatever happens, it is better to systematically eat to meal plan consistently throughout the day, than to eat a lot in the evening, even if this comes at the expense of any meaningful weight gain. It’s about keeping blood sugars stable and giving the body signals so that it becomes hungry, throughout the day, not just in the evening. And that can take a very very long time to re-establish. So please don’t despair. Your children are making progress. Even relapses are progress, because they are opportunities to learn both for you and them.

Breakfast and morning snack are often the most difficult to crack because of food noise. We just koko. I hope everyone has a good day tomorrow.

@CuppaTandBicky it sounds like you did absolutely everything right. I don't think you could have done any better - and well done for looking after yourself. It can be so hard to do that but you're absolutely right, you can't help her if you're running on empty.

@Raspberrysins DD hasn't been in school since April. We did try sneaking things in and it was a disaster - it led to her not trusting anything I was making. It took a while to come back from. She could taste the butter/cream/oil. It was worth a try but just not something that worked for us.

@Mummyoflittledragon that sounds incredibly stressful. I am kind of nervous of stamping on the green shoots of a social life that DD only seems to be developing over the last couple of weeks. She's been so lonely. I am hopeful that as things become more established I can use it as a bit of a carrot and stick to get her doing the full plan just like you did.

We did have a couple of 'glimmers of hope' over the last few days. She let me give her a bowl of crisps out of a sharing bag for her snack. Normally she's very rigid, it has to be a packet so she knows how much it is but she clearly wanted these crisps her brother had bought. I could see her fighting herself over it but she did it and ate them all.

Thankyou so much. I've been feeling guilty but I feel better having read these messages. Luckily she has had a visitor tonight so I've had a few more hours with my other daughter who just such a happy little thing. My battery is fully recharged ready for another night on the hospital camp bed and to try again tomorrow.

@Weightlossworried Yes it’s been tough! I totally get your dilemma. And I wasn’t suggesting you do the same as me. I was just letting you know how far these things can go, so you understand the thresholds you’re working with. For you, that’s not backing down on being at the table with you to eat. I was just illustrating it can get worse before it gets better. And not to despair.
Any new behaviour is good. The glimmer may not last, and any change in behaviour is good.
That was your dd relaxing, however fleeting.

@CuppaTandBicky I’m so glad you managed to snatch some time with your younger dd.

@CuppaTandBicky I didn’t want to say it might go wrong, but the hospital will
ne very used to that happening and that’s why they don’t discharge you before trying it.
I am really glad you saw your other daughter, I would keep trying to get home or at least to the car and maybe drive somewhere you like. Use the time your daughter is in hospital for other people to look after her xx

That’s kind of you. I spoke to her, and her dad, and felt like I’d got somewhere — she is eating pretty well at least in front of us, and has let me request a GP appointment… I think the hair loss really freaked her out; she is extremely proud of her hair. But I am staying vigilant! Hope you are doing ok xx

@ChristineBrooke that's good news about the GP appointment.
Just be wary once we had the chat and she realised we knew, she did have a few days of eating relatively ok.

Another bad home visit. Absolutely refused any lunch, or fortisip.
I tried and tried and ended up throwing the TV remote at the wall in frustration at the situation and she told me it was me who is mentally ill, not her. Also the TV remote is now broken. Excellent.

Argh!

In a way, I've got to see this as a positive thing. We tried. We failed. We demonstrated she isn't ready for outpatient treatment.

@CuppaTandBicky like I said yesterday, the hospital almost expect this, which is why none of us have ever just gone home. There is always lots of meals at home first.

You did your best. The TV remote can be replaced. Make sure you take time for you this week. The hospital will come up with another plan xx

Yeah I guess so that's why they try it.
I kind of thought she might have a sip of fortisip though. Or even pick the fork up!! I wasn't expecting her to eat much.
Nevermind.

I am taking some time for myself next week and won't be with her all day/night.

I feel the nursing staff need to be more on the ball though so I feel confident to do this. At the moment Im reminding them to get her snacks and Fortisip to replaced missed parts of meals etc. It's hit and miss depending who is working as to how strict they are with things which doesn't help. What were others experiences with this?

@CuppaTandBicky I spent weeks with my daughter in hospital - letting our relationship worsen and her telling me the same as your daughter. I then had a sort of virtual slap around the face from friends when they said you’re there 24/7 why aren’t the staff there helping you? I explained it’s a normal ward, we’re surrounded by children having their tonsils out etc. Their reply was they put you there they need to help you!

So one weekend, like you after failed attempts at home I decided I needed more of a plan. So I used to ask on a morning which nurses were in that day and asked them to have lunch etc with my daughter. I asked the ED team to help. It sort of seemed like we were going backwards as they wont be at home when we were discharged, but I felt like it had got to the stage that I was no longer helping my daughter. I kept asking the team to make sure someone supervised every meal. I’ve heard from others in hospital that the parents weren’t allowed to supervise the meals!

I had all my hopes on going home, but after the failed meals I decided I had to change my ideas. I wanted to go home but it wasn’t right for my daughter. I needed to get her to a stage she could be discharged, but not just because hospital was sending me mad - because she could cope at home.

I had to really focus and really find ways of asking questions. Making sure plans were in place for discharge that would work. I was a shell and just existing and I had to realise this was my new life and I needed to control it like I would at work or in my normal life. I asked for meetings with the ED team on my own, asked the dietician to call in as much as possible. I asked the medical team to talk to my daughter about how low heart rate etc and lack of food affects the body. I tried to get her decisive nurses to talk to her about other people they had looked after etc.

Previously we were just plodding along waiting to go home, with me hoping everything would be ok. I realised when we went home we would have daily visits etc and in a way we were better in hospital. I never thought I would say that and it still feels strange to type it xx

Thanks that really hits home for me.

I guess the staff are very used to me being there. I can almost imagine whoever gets to look after my DD being quite pleased because all they have to do is write down what she's eaten and check BP twice a day.... I'll do the rest... easy!

You're right this has to change.
I'm going to speak to the team tomorrow anyway to discuss how the weekend went so will also discuss how the ward staff can step in more.

Thanks again :)

@CuppaTandBicky Even though we were taking a bed, they didn’t really have to look after us. I felt the nurses sort of forgot we were there! Definitely don’t hold back tomorrow. You’re in hospital anyway so you may as well get eveything out of it that you can! Xx

@CuppaTandBicky so sorry its been another hard day, i currently have no idea how my dd will be when we get home, may well be similar for all i know! Definitely ask the ward staff to step in more, you need the break. I initially felt a bit annoyed being told to stay away for all meals and snacks as it felt like I wasn't trusted, but actually it's been quite a relief to say bye each time the food comes. It's given me a well needed time out, and as the consultant said help me recharge ready to face the challenges once home. I think we may have more support as on an HDU ward so possibly better staffing, but they really should help you out more especially following a tricky weekend at home. Wishing you luck xx

That's exactly how I feel.

I also feel it's become like a little mum and daughter camping trip for my DD. She still doesn't believe she is ill. There isnt much motivation to leave. I'm not saying it'll be awful without me there, I have left her for a few hours here and there... But she needs to focus on recovering and having medical staff around her might make it feel a bit more....medical!!

Hi I hope things are going in the right direction for you? How's her HR?
Yeah I bet there are better staffing ratios on HDU.. but less freedom for your daughter?
You're so right it must be a relief to not be there for the meals. Are you there when she chooses what she is having? That's the only part I think would be tough... I don't think she would actually choose anything!!

@CuppaTandBicky absolutely agree. No school, you all to herself. No work for you! I felt like the threat of hospital was worse than hospital in a way, and I needed to be able to use the threat of hospital in the future!

I think once we failed home visit they realised we were staying, and could be for a while more they did start to become more medical and more helpful. I asked to see the ED team each day and asked one of them to stay with my daughter. She hated it so I made sure to do it.

Too right. It's certainly no holiday for me though! It's lovely how they make it so pleasant for kids who are poorly but you're right, it has to be a threat not somewhere nice to go because she hasn't eaten enough.
Our ED team only come in twice a week but luckily they're here tomorrow. Thanks again for your advice.

It's crazy how different the approach is in different places, she's still not allowed to choose what she wants and it's all down to me....having said that it's not as stressful as it was having now been here 2 weeks, we've both learnt the menu so I can pick things I know she won't mind which helps. Things are going the right way thanks, she's put on 2kg since admission but BP still drops quite a bit at night, so not going anywhere quite yet. Think there's another team meeting tomorrow, can't see anything changing this week though unfortunately, except maybe me starting to join in with meals again perhaps x

Crazy isn't it. I'm glad at least you get a say in what she has rather than them just bringing any random food. I can't imagine anyone, ED or no ED would be able to eat something they have always genuinely hated.
I'm glad the weight is heading in the right direction. I know they've said to us sometimes then BP/HR catching up is a bit delayed and unpredictable. At least on HDU you know it's all being monitored closely and she is safe.
I hope things turn a corner soon.