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

[Mummyoflittledragon]

New thread. The old one is full…

@Mummyoflittledragon you are amazing and we all know it. Being grumpy occasionally and having a chronic illness doesn’t take away any of your amazingness! We all would be lost without you and we are forever grateful for your knowledge and help.

I can’t wait for the day you tell us all your daughter has passed her exams and is starting to be more and more independent.

@CuppaTandBicky fortisips are made to taste nasty I think! The juice is definitely better. When we were in hospital they were very strict that my daughter had to drink it if she didn’t eat the food. It was a threat that worked in general, although she wouldn’t drink them if she was given them, she just point blank refused and the nurses or ED team kept asking her to drink them. I would ask for all the flavours they have and try them yourself- I did and found the juice was ok. The milkshakes I couldn’t stand.

@Raspberrysins today is a new day as they say. I hope the sun shines and you have a better day. Are work still being supportive? I bet you’ve never missed work so much! I always liked my job, but when things were bad I longed to get back to it! I didn’t expect to want to go so much.
Please don’t underestimate how much you have helped DD these last few weeks.

@Weightlossworried I really hope that taking more control of the apppointments will help you going forward. Try and use the time to ask questions and gain knowledge. I used the sessions as mine not my daughters, that helped me feel more in control and more like I was gaining things from going.

Thinking of everyone today. I know Sundays in hospital drag. I used to time to get to know the nurses more and try and build a relationship with them. They often spend a lot of time reading the notes and are able to tell you maybe if you’ve gained … by Tuesday you can go home xx

@Mummyoflittledragon you are doing amazingly and are a lifesaver on here. Don't compare yourself to those of us who work either. Although it might be harder logistics wise to do this... Work is often something that occupies the mind and gives us a little "forced" break from it. Not having that must be really hard!!

You mentioned your daughter wont eat with you. My daughter is the same.
I am a little worried that once we are out of hospital the eating together will be part of family therapy. She absolutely wont eat with us and it would cause SO much stress. She is really sensitive about eating with others and hearing others eat.
But if she never ate with us before surely the aim should be for her to eat in the same way as before?

Wishing for a peaceful day for everyone

Morning everyone, could anyone explain the rationale to me of why my DD isn't allowed any input into her snack/ meal choices while in hospital? I feel like the pressure is all on me to pick something she likes and doesn't stress her, I've chosen yogurt and biscuits for her double snack this morning then said I'd check with her if she'd rather fruity or plain yogurt, and got politely told off by the nurse that she's not allowed to be consulted 😞 getting so sick of all this!! Thankyou x

Hope someone might know this but we did have a choice. DD was never hospitalised but was in a day centre for 4 weeks where she had all meals except dinner. She had to stick to a specific meal plan with calculated calories, but there was choice within that. She wasn’t allowed to the centre kitchen but she could decide … cereal plus toast or yoghurt or fruit or whatever. And there was a daily menu of a choice of 3 things for lunch. So she absolutely had choice but the total calories were very carefully monitored by staff. That’s probably not helpful, I can’t understand why she can’t choose a flavour yoghurt.

@sammyspoon thankyou, that's how I feel too! Surely so long as there's no negotiation and she has the full amount from the list it should be fine. Will try and ask the consultant tomorrow to explain, honestly I'm feeling at the moment that it would be easier for the staff to make all the decisions if that's the case, as I really don't want her upset with me that I picked something she'd rather not have

The only reason I can think of is perhaps the choice could cause her distress. There were definitely days where my daughter seemed comfortable with choice and other times it seemed to cause distress and I just made a decision. I remember one day she suddenly asked for a crumpet and butter and PB. I was like … hell yeah! I think it was something she desperately wanted but then felt guilty at having chosen something she enjoyed.

Im not sure that's definitely not how it works in hospital for us. So they ask you for the choices not your daughter??

Our meal plan sets out what she has to have, i.e 3 meals, 3 snacks..and what each meal should consist of (e.g protein, potato/bread and fruit or veg etc) but she gets to choose the options herself. We also had a dietician who came round to us to discuss how the options can be altered to fit her tastes better... E.g she doesn't like the fruit options here (apple or banana) so we discussed other fruits I can bring in for her and for e.g how much grapefruit she can have in place of an apple... And also other meal/snack options instead of the hospital menu. This may be because I mentioned she is quite picky.

Surely the focus should be encouraging them to eat so if she wants a particular flavour yoghurt that should be fine as long as it fits the nutritional requirements of the meal plan?
Better that than no yoghurt surely?? As long as she isn't asking for a 0% fat option or something....

I would probably discuss this with the ED nurse/consultant and say it's not working for her. If choosing her meals is not stressful for her I honestly don't see the problem. It's not like there are a huge, overwhelming amount of options for them to choose from in hospital!!

Ask for scandishakes instead of fortisip. They genuinely taste ok. You have to make them up which is probably why they don't offer them.

Fortisip is genuinely disgusting. Unless DC is very young I would have thought engagement is a priority for recovery and making people eat and drink awful stuff they'd never have in normal life seems very counter prodictive

To add my own lifebuoy metaphor - its like throwing a ring to someone who insists they were going to swim fine but now you have implied they can't by trying to help they no longer want to swim and prefer to drown

@ThatSparklyOliveBird because your child isn’t well enough to make a sensible decision 🤷‍♀️ it will cause her distress because she will try and work out what has the least calories in.

Having some choices comes much much later in recovery and even then it’s baby steps for example would you like strawberry or raspberry flavoured yogurt.

At this point you make all the decisions and put it in front of her. That decision is based on what you know dd likes (pre ED) and whether it is enough calories for her. You should not be basing any decisions on what will cause her the least distress as this enables the ED.

I know they said that choice can induce anxiety, but for my DD she would definitely prefer to choose between at least two options .. sometimes she can't decide and tells me to pick though :D

Thanks @Pearl97 - officially I have one more week off before they wanted a 'review, so we're having a teams meeting next week. But despite feeling confident last week, now we are back to square one (it feels like) although we have turned a corner at least with the control coming to me.

I am struggling to get her to sit down at home, and partly think that at least if she was at school she would have to sit down in her lessons! She has mocks the week after next, so we need to decide what to do about those too.. she wants to try and do some of them, but already the anxiety around missing school has started to go up..

@unbuckle I love your own life ring analogy - mine was similar- she thought she could swim on her own, but has now realised she is too far out and hasn't got the strength to swim!

Same here. There are only a few options and they both have the same calories and nutrients etc so she has to choose. I think making her eat something she genuinely hates would be counterproductive. Sometimes its the best of a couple of bad options but that's better than something that makes her literally gag.

There is no way on earth my daughter could eat a raspberry yoghurt for eg..never had, never will, but if they offer her a banana one that's acceptable.

I guess if they were 'good' eaters before (i.e like a wide variety) it may be different.

It's interesting how different ED services have slightly different approaches though.

Thankyou all, yep we were doing a and b options before which I felt worked, but I guess they've decided it now needs to be stricter. Honestly it's causing extra anxiety for both of us, me for trying to chose something she likes from the list plus not the highest calorie option (she knows everything and would get so cross with me) and her for still whispering what she wants! So I actually think tomorrow I'm going to ask the consultant if the nurses can pick, or maybe have the same 3 snack things every day, to take the pressure off. I'll ask the consultant to say it's her decision though, not mine

Having the same 3 snacks works for us....although I do worry she chooses the "easy" option (has the same calories etc though)

I must admit I am really worried about leaving here and I do anticipate some really hard times and me trying to replicate hospital meals when I probably can't.

Have you had the discussion about going home yet? We have discussed trialling it for a couple of hours at some point but nobody has said when....

@CuppaTandBicky you will have support when you get home. Take all the support offered. They will give you meal plans and portion sizes ans they will come tl the house to make sure you’re all ok. We had daily support and went to the ED clinic to be weighed. We saw the Dietician online etc. you will feel supported I promise.
Are you allloeed off the ward yet? If not I would ask what needs to happen to get you off the ward.
we went home for an hour for afternoon snack, then a few days later we went home for lunch. Then a meal and a snack and then home fully. The ED team came round the day after we were allowed home xx

You have got to be stricter 🤷‍♀️ the calorie content and whether she’ll be cross with you shouldn’t be a consideration.

Managing her distress is something that can be learned and the ED team should support you with.

You have been feeding your dd since she was born so you do know what she needs, if your dd sees you struggling to make a decision that will reduce her confidence in your ability to make a safe decision for her. Even if you don’t feel sure fake it, ooze complete confidence that it’s the food she has to eat and that you know she can do it.

Any kind of hesitation or doubt will be picked up on by the ED as ‘see mum doesn’t know what you need.’

Seems odd to me that there are lower calorie options? Surely if you are giving options it's on the basis that each one is equal to each other in terms of nutrition. It does sound like it's causing a lot of anxiety.

We had another day where DD shut down because I made her stay at the table for the whole 30 minutes at breakfast. She was worse than the day before where she did actually come round by the evening. We'll see how today goes

On a positive note some of her friends have reached out and invited her out next weekend. It already presented me with an opportunity to offer a carrot/stick. At first it was just round a friend's for a BBQ. Then she wanted to go over in the afternoon and stay the night but said 'i don't suppose I'll be allowed'. I told her she could do that if she ate all her breakfast and a morning snack all week. That was an instant 'nope'. But I am hopeful that if she can get some sort of social life going it will give her something to get better for.

@CuppaTandBicky I would like to confident you’ll come home with support but that hasn’t been my experience: 5th time round, the medical team refused to discharge my daughter without a clear plan for support from the ED Team.

Please don’t leave without that support and feeling fairly confident you can manage what is being asked of you. It’s tempting to just want to go homeASAP but, without support, there’s a high chance she will be back in hospital.

@Shedqueen thats awful you didn’t receive the support. The ED team should be the ones discharging you into their care. Are you experiencing this now?

@ThatSparklyOliveBird you do need to be stricter but I understand you might not want to hear this and you might be overwhelmed already. I found hanging it over to the ED team so on a Monday we saw the dietician. They brought the menu and discussed with DD what she would have. It was then printed and I showed the man that came round to take the orders. They knew to prioritise DD. Are you seeing the dietician.
I know I would have struggled with people telling me to be stricter so can you pass this on. You need help. We all need help. Please ask for it xx

Thanks @Pearl97, definitely overwhelmed!! Only a few weeks into this nightmare, but doing my best to change my mindset and approach things the best way possible. I've had a long chat with the charge nurse this morning and discussed my concerns, I'm going to speak to the dietician to review the snack list then the nursing staff will chose from that what to give, so it's out of my hands for now. Still waiting to see the consultant today. Thankyou for the support it's much appreciated, I know everyone in this group has been/ is going through their own struggles x

@ThatSparklyOliveBird I totally get that your overwhelmed. For me it got to the stage that I had to look after myself as well as my daughter. The sadness and feeling of doom overwhelmed me and I had to start thinking of ways to help myself. I couldn’t be my daughters rock when I was feeling so fragile and like a shell of my former self. I had to admit to myself I didn’t have a clue what I was doing, and going against all my instincts which was to do all I could for her - I let the professionals take over. Definitely speak to the dietician and consultant. You need to show them you need help. Often I think medical professionals think the ED team are doing things and vice versa. Let us know how you get on today. I’m thinking of you xx

I'm not confident I can manage so we are staying here longer. Seems ridiculous but they said that's the best thing for now until we can be more confident she can have 1800-2000 cals per day.
It sounds like there will be support though. Not sure if this will be the same in reality but it sounds like we will be supported...
Sorry that was your experience that sounds really frustrating!

@CuppaTandBicky how are you doing? Staying is definitely better than going home and then having to go back? Have they said how much longer?

@ThatSparklyOliveBird I'm with you there. It's a lot!! And it's not something we ever thought we would have to deal with. Still coming to terms with it.
I am a lot better now we are both sleeping. They haven't said how much longer and I guess that's because they just don't know. It'll be purely down to how the next meal plan goes.
I believe we are now safely out of the stage of refeeding syndrome risk which is great.

@Mummyoflittledragon are you ok? I note like me you often post on the middle of the night. I haven’t slept properly in years! I just realised you always ask about others and I’ve never asked you. I really hope you’re as ok as you can be xx

This week seems to be dragging. I miss the sunshine! Thinking of everyone.

I echo this @Mummyoflittledragon I hope you're ok... Or as well as can be expected anyway.

Bad day today. One of those "I don't think I can do this" days. I just don't think I have the patience. I know they say it's the eating disorder talking not them when they're being nasty or saying ridiculous things... She could be a bit like that before though so it's not necessarily a huge shift in personality... Just what we argue about now is literally life and death.

I hope you're all doing better!!