Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Mumofellie What does your DD find upsetting about the appointments? If the meetings are counter-productive, and your DD can articulate why, then it might be worth giving that feedback. ( Our team were pretty good about taking feedback on board to be fair. ) If it's that they make the ED angry because of meal plan increases etc., then that might be unavoidable.

@NanFlanders it’s one particular lady that she doesn’t like she’s just never got on with her. Anyone else can give her feedback and increase things and she will take it on board but as soon as this one lady (who she has now been assigned to) says anything she just doesn’t want to listen not sure if it’s because she was one of the ladies that admitted her to hospital in the first place.

Can you ask for a change of worker @Mumofellie ? I think I would in that situation.

Oh, that is unfortunate. Could you request a swap? Perhaps focussing on the trauma of the hospital admission rather than any personal qualities of the therapist?

@NanFlanders @WaitingForMojo I was thinking of asking for them to assign her to someone else just didn’t know if I was being petty about it. I need her to be able to go and want to open up and I just know she won’t with her. She does open up to me and her dad at home but we’re not professionals so won’t be able to give her the advice that they might be able to give her

@Mumofellie I don't think it's petty at all. As I understand it, a lot of the success of therapy is about the quality of the relationship with the therapist. It doesn't have to be personal at all: my DD did much better with a student therapist who was closer to her age, than the very lovely lady she replaced. I mean the team might not be able to accommodate a swap, but no harm in asking. Having said that, refeeding is the most important thing as nutrition will help make the patient far less irritable - DD now really likes a psychiatrist that she absolutely hated when she was in the thick of it.

@NanFlanders ye that’s what I’m thinking that she might end up liking her when she realised she’s trying to help her we’re not even a full month into it yet so a long way to go yet. I might leave it another month and see how it goes and if she still feels same I will ask if they can swap her x

Mum does she have to go to the appointments? My dd also hated her therapist so in the end I went without dd to talk through how the week had gone, what was working, what wasn't working and if I had any concerns.

It was a really useful support for me, dd didn't really need therapy, she just needed the weight to go on and the food to go in!!

Well had our meeting and it was the worst one yet. Every time the lady asks DD a question she answers then the lady always replies with a but and makes out DD is lying. She’s also pushing her to see her weight which DD doesn’t want to know she knows it’s going up and she’s ok with that. DDs tried to say that she’s going against what the eating disorder wants as it was the eating disorder that made her weigh herself 2-3 times a day but the lady says it’s the eating disorder that is telling her not to know her weight. DD came out very emotional and very angry which I have never seen her like that before. She couldn’t even eat her snack. Got her home and luckily managed to get her to eat her snack. Now we’re both dreading next weeks app already

@Mumofellie That's terrible. Standard advice at ours was that seeing the weight is NOT helpful. DD always wanted to know her weight (because I had thrown out our scales....), so they let her. Bit now she is in recovery she refuses weighing as she knows it might trigger her weight obsession again.

She shouldn't push her to know her weight, that could be triggering. Well done to your daughter for standing her ground, she's going through enough at the moment the ed team need to be on her side. I would ask if there is anyone else while it's still early days so your dd doesn't need to explain from the beginning if there isn't I'd say there are certain things like the weight which aren't helpful so please don't mention it. Battling the ed is tough enough without battling people too.

@NanFlanders this is why I’m struggling I get they have done this for year but the same thing doesn’t work for everyone and I feel like they are not listening to what she’s saying and changing what she’s saying which isn’t helping her at all it’s just made her really bad today to which I have never seen before. I think I might contact the lady who’s dealing with my DD and just tell her that she’s not to tell her that she needs to know her weight and that she will happily get weighed there but she doesn’t need to know it. I just feel if she keeps pushing every week for this like she has for past two weeks it’s gonna make my DD go backwards not forwards. Luckily I have spoken to DD and she is much happier now we had a talk and a cuddle and I even mentioned some things I’m gonna change with her eating a bit more to which she agreed

Mum seriously don't make her go, it sounds like it's going more harm than good!!

Just keep going with what you're doing at home, keep feeding her and only attend appointments for the physical checks.

I honestly think my dd would have killed herself if they'd told her her weight when she was in the place your dd is in now.

@Girliefriendlikespuppies we said how well she was doing at home since being out of hospital and that she hasn’t missed a meal or snack and she has tried loads of foods she’s not eaten for a while and they just responded saying it’s not that easy an eating disorder cannot just go in 3-4 weeks, me or my DD wasn’t saying that we was just saying how well it was going and my DD is pushing herself everyday and knows what she needs to do and it doing it. I just feel the appointments are just making her more anxious and miserable

@Proseccoismyfriend thank you for your advise I’ve messaged the ED team will see what she says but I might do what u say and ask for someone else or if that’s not possible then ask them not to mention it until my DD wants to know what her weight is if she ever does

thats awful @Mumofellie - they should work to what the patient wants. I'd raise a complaint if you felt able to do so. Its tricky and personal - DD quite often knew her weight and her ED voice would have told her lies so having the 'proof' was helpful as a long term argument against the ED voice - but it didn't make weekly weigh ins any easier for any of us. Once she was discharged from CAMHS at 18 she's made it clear to any health professional that they were not to refer to weight or spring 'being weighed' upon her. Adult ED managed to mess that up inside 5 mins of her first appointment. She never returned (Adult ED did offer profuse apologies).

@myrtleWilson thanks for your reply. I’ve always thought just go along with what the professions say as they know best but I’m sorry I know my daughter better and never seen her so angry ever and they did that to her today which wasn’t nice to see at all, even when they admitted her to hospital and ppl were coming in and out all time she never got angry ever.

Our Camhs are also not in favour of blind weighing mumofellie and it triggers my dd massively every week. They did say they would agree to it if she actually refused to be weighed otherwise. They say that it makes the number seem more important than it actually is if they can’t see it and that they imagine a bigger number, also that they can’t do cbt properly without being able to check out what happens to their weight. For example, my dad thought she would put on several kilos overnight if she had mayonnaise, and they needed her to see it make no difference to the trajectory. I get that, but I still don’t understand why the number is helpful!

I didn’t look at my weight when I was in ED treatment and I know I couldn’t have coped.

Can you talk to the person and ask their rationale for this approach? Then maybe ask for someone else if your dd can’t engage with her?

Our DD is also blind weighed and it is the only way she can cope and continue to stick to the meal plan. She is finding WR extremely difficult. It seems standard practice for some so I can’t see why they would insist on her knowing if she doesn’t want to. Sounds like you are doing a great job mumofellie

Just sitting and waiting for something so hopped on this thread..
I agree, even if having to wait, a different person can make a big difference.
As soon as DD was 16 she did not want me in with her. She then saw someone new who after few sessions discharged her (despite DD purging most days and losing weight). I had to push for a further appointment.
6 months later she got someone else and really clicked with her.

Anyone with the DC here who is self harming? DD started it recently and there have been a few incidents. How do you handle/approach it?

Sorry to hear this Curly. We don’t have direct experience* *but others in the day unit hold ice to help ground them when their anxiety becomes too much

Thanks @Shanghai. I think this was suggested to us for her violent outbursts. Will see if we can utilise it here.

I second holding ice. This might also be helpful: https://www.selfinjury.bctr.cornell.edu/perch/resources/distraction-techniques-pm-2.pdf pp

Hello, I find myself back here after 3 years. My dd15 has slid back into old ways.
Thanks to this thread, we did get early intervention through the NHS ED team in 2021. And whilst things improved, she gained some weight and maintained it, I know the thoughts never really went away. The service wasn't great and I think she only really ate to get the hell out there asap.
But, I saw some signs, her period have stopped and she's lost 2-3kg from an already too slim body.
So, we go again. But I'm really struggling. I just wanted somewhere to write that down. With people who get just how very hard it is.

I've name changed btw. Fresh start for this round.