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

[Mummyoflittledragon]

New thread. The old one is full…

@Weightlossworried I will be thinking of you tomorrow. I really hope it goes ok. It’s great you have the questions etc prepared. Xx

That all sounds so lovely @Mummyoflittledragon and really does give reassurance to those of us following behind you.

Well the pork belly was a hit, she cleared her plate. DH asked if she wanted crackling though so of course she said no. I'd have just put it on her plate. So annoying. She wouldn't entertain the trifle and stuck with her normal dessert. Still, a successful dinner.

Tomorrow is just another check of obs so hopefully quick in and out. Unless her obs are worse of course. She has absolutely promised me faithfully she'll drink water before and there's a meet up with friends in the balance if she doesn't/the obs are bad. Big review is Friday so still a little prep time. Thanks for the well wishes though

@unbuckle I like chatgpt for practical stuff too. I haven't used it to unburden myself yet but it definitely helped DH get his thoughts together

Hi everyone, first an apology, I'm so sorry I can't acknowledge all your comments, everything still feels so overwhelming right now:( we're continuing at home but feel completely stuck in a rut, dd is eating but only enough to maintain, so no progress as of yet. We're hovering around the 70% wfh mark as we were at discharge 2 weeks ago, so fed up with it all now! As I know you all know, it's all consuming, and so depressing. My main challenge currently is sticking to the meal plan. My daughter is absolutely the Queen of negotiating, and gets completely involved before every meal and snack time. I'm doing my absolute best to stay firm, but 6 times a day is soul destroying, and sometimes you just give in. The ED team are telling me off (politely!) now as I'm not providing enough rather than her just not eating enough, but I'm just so exhausted I don't know how to win. Any tips?! Thankyou x

Hi @ThatSparklyOliveBird that sounds so hard for you .. I know the feeling well! You sort of feel stuck between wanting to allow some collaboration, whilst also not being bossed around by the ED. We found some easy wins for snacks were the Belvita soft bakes (almost 200 cals) plus a piece of fruit. For lunch it has to be a sandwich (we are on 3 slices of bread) must have spread, must include a babybel and a packet of crisps. Although our DD will only eat those lentil ones. But it’s more than she ever had before so we’ve agreed. If they think they have some wins it does help.

@Weightlossworried what’s your DDs normal dessert?

@ThatSparklyOliveBird that sounds really hard, re negotiation I would basically ignore it completely, don’t respond. The ED is a terrorist holding your dd hostage and you don’t negotiate with terrorists 🤷‍♀️
You make the decisions and put the food in front of her.
Once she knows you won’t back down it should stop in theory.

Hi @ThatSparklyOliveBird
I understand how overwhelmed you feel, now being expected to do this on your own now. Unfortunately, this thing is relentless. The good news by the sound of it is, although your dd may not have put on any weight since discharge, she hasn’t had a loss either, which means that you’re doing a lot right.

I imagine your dd doesn’t want to return to in patient. And I think I’d be using that as an incentive. In as positive way as possible. ‘It is great you’ve managed to recover just enough for discharge, however, it’s really important that we prove to them that we can manage this at home. And to be able to do that, these are the things I want you to eat for your breakfast /snack / lunch etc.’ Then objection ‘I get that this is really tough for you and I can see how hard you’re trying…. I’d like you to eat x please.’ Then when she’s struggling in front of you, just point at the food and say gently, ‘have some more of that’. Idk what she’s like, if she will take the ‘I am with you, I am here for you’ type talking. My dd won’t. She’s not NT and I think that feels like sarcasm to her and it really sets off the ED mocking.

Maybe you can talk about an activity she wants to do and needs to put on weight to be able to do that. Does she look forward to being able to do something again or in the future? So ‘we need to get your strength up, so that you are able to do x activity’. You can hide behind the ED team for that one if helpful. Telling your dd you need approval first.

@ThatSparklyOliveBird.that sounds so tough..I totally get the fear of them not eating at all and therefore ending up in hospital (again for you) and so you end up compromising just so they eat something. You've probably already tried this but would she meal plan with you? Once a week I sit with DD and we plan all her meals. She actually does quite well at agreeing stuff away from the pressure of actual meal time. Once the plan is agreed that's it, and it's a lot easier for me to stay firm when it's pre agreed.

@Girliefriendlikespuppies we agreed some ice cream bars with the dietician. We definitely need to move her away from them at some point but dietician felt we could challenge some of these 'safe' options further down the line.

@Weightlossworried do you put it into a bowl? I would start by offering her a bowl of just ice cream, work up to different flavours. You could try milkshakes, I used to make my dd one with crushed Oreos in, each Oreo biscuit is around 50 calories so 5-6 of them blitzed in with ice cream was easily 700 calories or more in a fairly small portion size.

I would definitely try and expand on the puddings.

Yes I definitely need to expand the desserts. I'll let things settle down and bring it up with CAMHs first though. Right now I'm scared of doing anything that may result in a loss because of the threats of hospital. Which tells you something about how they're getting it wrong really doesn't it? I feel like if I tell them that's what I'm doing first they can't blame me if she refuses dessert.

Liquid calories is still something I'm working on with no success. I might get her big sister on board with that one, DD tends to try things when she has them.

@Weightlossworried

I agree right now with your stance with CAMHS and not pushing things. Attending is destabilising for your dd right now, even if hopefully they will be helpful in the long run, and her anxiety is having a big impact on you, as well as having your own fears. What did we get told about imagining the examiner sitting on the loo?

Not something I would advocate at your dd’s stage and weight in case she likes alcohol, as that can suppress appetite (and I’m aware she’s 2 years younger than my dd). However, my dd now drinks cocktails when she goes out in the city, so not regularly. Has for maybe 6 months now. She bought herself some Malibu and pineapple juice for home when a friend stayed over just before we went away.

Maybe something to keep up your sleeve at some stage, perhaps also when your dd is a little older and gained weight.

How much influence does her older sister have on what she eats and drinks? Apart from cocktails, my dd drinks options hot chocolate. It’s low calorie, but is calories. I keep on hoping this will progress. So not many calories consumed here. Mostly water, flavoured or plain, sometimes diet Fanta and Pepsi max regularly. Pepsi max obviously not great. Something like 80% of anorexics drink Pepsi max or Diet Coke.

Her sister is a huge positive influence on her. She's 5 years older and DD would never admit it but she looks up to her a lot. She seems to feel safe to copy what her sister eats - and she eats a lot and loves her food. The other night I had my usual failed attempt to get the full evening snack into DD. Later on she tucked into a cheesecake with her sister. We have been very careful not to put any responsibility on my eldest though, both for her sake and because I think if DD feels she's on 'our side' she'll stop eating with her.

DD has actually had a couple of bottles of alcopops now and then. She definitely wants more than we let her have, she's asked for buzz balls which was obviously a hard no at her age!

Pepsi max is a bone of contention here because I limit it, she doesn't drink enough water so I insist on that first and no pepsi max around/at mealtimes.

One thing I am going to try this week is milkshakes, both dds were reminiscing about having them at my mils house. I might buy some because I know my eldest will get excited and want to drink it which will potentially bring my DD along with her.

As suspected, we were in and out today although the nurse was quite nice thankfully. Her BP was fine but her pulse was high despite her drinking plenty of water beforehand so he was worried about that. We found out there'll only be a doctor and nurse at the review too so I feel a bit less freaked out by it. I thought there'd be 4 or 5 or them.

Hope everyone is having an ok day

@Weightlossworried phew! I am really pleased about Friday too. I would still go in prepared as this could be a good time for you to be the ones asking the qruestions etc. did they weigh her today? Xx

No, no weigh in today thankfully. I would have pushed back against that given she was weighed not even a week ago and will be again Friday.

@Weightlossworried this is great, they seem to be finally listening to you!

I really hope you have a good week and Friday goes well xx

@ThatSparklyOliveBird I totally get the feeling of dread when meal or snack time comes around and you know what you’re facing. What WTH are they looking for your daughter to achieve. Others are right though, you can’t negotiate with the eating disorder. It will always want to win.

Are you still having people come to the house? I just wonder what you can do to get her to eat differently. What have the stopped her doing? Is she returning to school in September?

@Raspberrysins how are you finding the holidays? Is your daughter returning in September.

I think the holidays are harder as others are doing ‘normal’ things and we remember normal times!

@Pearl97 ite been a bit stressful being away. We’d agreed to let her choose off the hotel menu and get things out and about for lunch etc but im quite worried she’s not having as much as she was at home. This morning at breakfast she ordered porridge and annoyingly the hotel do it with water wtf! I asked them to change it but she refused as didn’t want to be ‘weird’ of course I’m not going to make a scene at the table.

Then yesterday was painful as she had to choose a sandwich from somewhere. She freaked out about some mayonnaise and wiped it all out with a tissue 🫣. She finds uncertainty so hard but when I suggested we can just go to Aldi and make a picnic with her usual things she was adamant she needs to practice dealing with uncertainty.. we have promised to not cause a scene so I am having to let some of this stuff go.

@Raspberrysins that sounds very like our holiday! DD wiped the oil off roasted veg on a napkin. She definitely ate less, but as it was a week and a lot of challenges we went with it and are being more vigilant again now we're home
It was and is exhausting but still worth it to show what can be acheived

Thanks all, @Pearl97 yep outreach team coming on a daily basis, which is helpful but makes me feel more stressed really as under constant pressure, but I don't think there's any escape either way so just need to get on with it. The ED team have started talking to DD about returning to school in Sept, likely staggered at first, I think to start giving her some positive motivation. Her weight will obviously need to go up a bit by then which I truly hope will happen, really can't stay in the position we're in for much longer, don't think any if us can take it! With regard to the meals and snacks, we're meeting the community dietician for the first time tomorrow, so I'm really hoping she can help with a better and more exact meal plan, rather than the hospital version. Need to try anything and everything to remove the negotiation pressure on me, without me being the bad guy to my daughter. Seeing the consultant on Friday too, already feeling nervous!

@Weightlossworried
You sound so much more positive after that latest appointment. I hope you and your dd had a good day yesterday. And that Friday is manageable for you both.

@Raspberrysins
Having food from a menu, that is not the same as your dd always has at home is an important step. Your dd is challenging herself. That is so positive. And as long as she isn’t specifically choosing the lowest calorie option, it is something to tolerate. She can catch back up at home. If you think it isn’t enough, I would say that isn’t a full meal (or not a full meal for her eg if it’s a light bite, that’s basically diet food) and to have some chips / x food with that.

@LurkyLurkyLou
It’s great your dd ate the food, even if she wiped off a bit of the oil. It’s still really positive she challenged herself.

@ThatSparklyOliveBird
Good luck with the dietician. I hope they’re understanding and helpful in terms of getting your dd to eat how she needs to to start to regain the weight.

@Raspberrysins it sounds like you’re both doing really well. As @Mummyoflittledragon said, choosing off a menu etc is huge progress. Not knowing calorie content etc. it’s a huge win. Well done to you both. It totally shows what can be achieved.

@ThatSparklyOliveBird having the team each day is a blessing and a curse isn’t it? It’s nice to be supported but seeing them each day can get a lot! I really think you should have met with the dietician before now. Having a full meal plan with portion sizes etc is essential. I really hope they help you.
Good news about washing. I really think having the motivation is essential. I know this is a really hard time as it feels never ending. I promise it will get better.

I can relate to this. These days I get irrationally annoyed with places that don’t use full fat ingredients! We had a win recently when my DD ate sandwiches with butter for the first time in 2 years because we forgot to ask them to remove it and she didn’t want to make a fuss. This time last year she would have scraped off the butter. Small steps!

That sounds really hard @Raspberrysins but I agree with the others that it sounds like you're doing a really good job under difficult circumstances.

Hope the appointment with the dietician goes well @ThatSparklyOliveBird I can see how daily visits must be quite stressful even if they're meant to be supportive.

We had our family therapy appointment yesterday. It didn't really go well. We talked about some of our concerns. She put it down to the ed causing a split between us and the team. She also implied that DD wouldn't be able to start college in September. I hope she was speculating rather than this being something the team have decided. When we expressed concern about that given she was allowed to go to school at a lower weight, she said 'but won't that be an incentive for her?'. So my guess is it'll be used as another threat alongside hospital to scare her into compliance.

My plan for the appointment tomorrow now is to just smile, nod and keep quiet. I feel like everything I say is sort of used as proof that we're not doing what we should be. I'm going to make sure we get some support outside of CAMHs, I've self referred for parent coaching through beat which sounds good. I may look for a therapist too, I don't think the CAMHs therapist is a safe person to speak to really.

Thank goodness for this thread!