Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Thanks all. I think you are right girlie, we need to grab the bull by its horns. had a lot if lashing out and violence yesterday and this morning but managed to increase the FF milk by 100 ml for both breakfast and supper. I guess the next weeks won't be easy but no point putting it off. We really need to crack down on the AN before it gets totally out of hand again. I never ever want to get back where we were this Spring.

@Glitterfarti - did you manage to speak to someone else in school?

Swatty does your dd have a pudding or a cake type snack? If so I'd just make the cake and give her a piece, it's not her saying no to the cake it's the anorexia and it's fine to ignore kill joy anorexia!!

When my dd was at her worst she had her 15th bday which was a pretty miserable affair as she was very unwell, freezing cold all the time (under weight plus it was a terribly cold winter) and we were under lockdown. I made her some Oreo cupcakes as her bday cake which seemed to alleviate some of her anxiety as it wasn't one big cake and she could have one as part of her meal plan.

Just coming on for a moan. The ward is hellish at the moment. 3 new patients who are so so distressed bless them and there is constant screaming and crying and nurses running backwards and forwards with no time to even let us on and off the ward half the time. DH turned up for (pre-arranged) dinner with DD and they had already taken her down to the dining room. There's nowhere to wait as she's now sharing a room (that's a whole other story as nobody told us so we just turned up and there was another girl set up in there with her) and the other patient and her family were there so he had to go away and come back later (and not being able to get in as nobody available). My DD is really upset with all the screaming and distress, not sleeping really as it goes on all night. I'm considering whether she'd genuinely be better at home at this point. I really don't want to rush things but its so stressful at the moment for her I can't see how this is good for.her mental health. She's at pretty much 87% WFH now and is completing her mealplan. At what point do I say enough is enough and bring her home? She's started home passes but at very early stages. Has anyone pulled their child out of impatient (psych ward)? Am.i mad to even consider it? There is really good community support where we live so we wouldn't be alone. I'm just sick of it.

Not sure though whether I am projecting as I am feeling absolutely at the end of my tether. I can't focus on work, barely keeping things together for my son, think about ED constantly, am.exhausterd but can't sleep, etc etc. Sure we've all been there. Had covid 2 weeks ago and feel like my brain/mental.health has not recovered at all even though physically I'm (thankfully) fine.

@GrannyRoberts sorry to hear that it's tough on the ward 😞 I have no experience of that, so no advice, but just wanted to send a virtual hug. I'm so fed up of it all at the moment here, I've pretty much given up trying to push anything right now. She does what she does and we'll see the consequences at the next appt next week. 😔😔

Hey @GrannyRoberts - sending a hug too. I'm only a few weeks into this awful journey, and I don't know anything about inpatient treatment and the time that transition from inpatient to full discharge takes, but is it worth exploring whether this process could be sped up? So asking to increase frequency of home passes with a view to bringing discharge closer? It sounds like it's very hard for the ward team to deliver the care they'd be aspiring to because things are so stretched.

@GrannyRoberts we were not on a psych ward, just general ward for refeeding so a bit different but DD was at about 85%wfh and eating the meal plan for a few days when they agreed to let us go. We had home leave before to test the waters and to see if she eats at home. Have you discussed coming home with the team? What is their target for getting discharged?

Thanks for the virtual hugs!
@SwattyPie, it's so exhausting isn't it. It's no wonder you're fed up. Hope the appt next week goes well for you.
@greydoor that's exactly it, the nurses are amazing and the demands are so high on them at the moment that they just can't give the care that's needed. I feel so terrible for the new children and their parents, I remember how horrendous those early days were. I just can't help feeling this is all really detrimental to the patients that are a bit further along on the journey. I have a meeting tomorrow with the care manager on the ward and also one of the community CAMHS ED team, so I'll speak.tp both about discharge and what support is possible at home. The unit is now full and I'm sure they could use my DD's bed.
@Curlyhairedassasin good to know where your DD was at discharge. 95% WFH was mentioned for discharge from the psych ward but this was dependent also on what other support was available as the unit covers a wide geographical area and CAMHS provision varies. Its considered pretty good where we are so that may work in our favour.
Tomorrow is a new day, maybe things will seem better when I visit in the afternoon. I am going to try and pin down discharge criteria though.

Sending you a huge hug @GrannyRoberts, I hope you get somewhere at the meeting. Is your daughter under a section? If she’s a voluntary admission you can leave with robust community support. Hopefully her progress and trajectory will support a move home.

Sorry I went off radar, was at work then on call and I’m just feeling swamped. DD started part time school yesterday, seems ok, just faintly bemused by the whole thing. Im still pretty pissed off with school, I checked in with the ED team and we will discuss it next week. I’m wary of rocking the boat too much seeing as they seem to want to bat her off anyway.

@Glitterfarti she's voluntary so yes the option to leave is there, it's just whether it's a crazy thing to consider at this point. She has made good physical progress on the ward and I think the psychological intervention is likely to start now she's at a better weight. But that stuff could be done in the community and I just wonder if the environment there is doing more harm than good now. Having said that if she comes home now I don't think she'd be allowed to attend school and she would.most likely be bored and possibly more likely to get back into the spiral.of pacing etc so I just don't know.
Glad that DD's school is going ok, definitely worth speaking to the ED team about it, perhaps they can contact the school and give them a talking to!

@GrannyRoberts sending more hugs your way and prayers that the ward settles down again. It sounds like discharge is on the cards very soon which is a big milestone

Thanks @SwattyPie. Things seemed a bit calmer today thankfully. It was a good meeting with the care manager although she wouldn't be pinned down on the discharge criteria. However when I met with the CAMHS community care coordinator afterwards she let slip an expected timescale of "about a month" until discharge. She'd just met with the ward team so I assume that had come from them.

@GrannyRoberts glad to hear things have been calmer today. Small victory here - I braced myself and served baked beans with dinner. So nearly took the easy way out and went with peas, but I stuck to my guns and went for it. She ate them and didn't even comment! First time she's had them since January, when she decided they were a fear food. Honestly, I had spent all day stressing about it. I just can't predict her. That's what's so exhausting here.

@SwattyPie that's brilliant! Well done you for going for it, sounds as though you played that one perfectly!

Swatty that sounds like me when I put some crisps on dds plate and was expecting them to be launched at me 🙈 she calmly and quietly ate the lot and didn't even comment on it!!

My theory is fear foods seem to drop away at a certain weight along with some of the other irrational stuff.

Well done on going for it 👏🏻

Well done swatty. I hope that gives you confidence to keep going with fear foods. I'm really rubbish at that and tend to stick to the same meals to avoid trouble.

@GrannyRoberts that sounds like a positive meeting, and glad things felt a bit more settled on the ward. I kind of underhand why they wouldn't want to commit to a discharge date, but how on earth does a family plan if it's all 'revealed' with only a short bit of notice?

@SwattyPie I'm feeling similar - I am spending so much time thinking about all of this, planning meals, cramming calories into everything and bracing myself for the storm. Quite often the storm isn't where I thought it would be and I'm blindsided by something else!! It's exhausting - I've been in bed by 8.30 every night this week.

I spoke to my GP and have been signed off for 2 weeks. When I say spoke, it's more accurate to say I cried all the way through it - it only took one kind sentence from her and the dam was broken 😳 she was very helpful and sympathetic, and said she's happy to continue to sign me off if needed. So that's given a bit of breathing space, and I feel slightly better in myself.

Things have been hard going here, my dd swings between being super low and incandescent rage about food we are giving her, it's very hard to watch, I feel so sad for her just now. We've not had any more attempts at hiding or discarding food as far as I know, and I've (blind) weighed her again today and I think she has gained about 3/4 of a kilo this week.

Next steps for us are to see how we can get her back to school. We spoke to them and they've got a few ideas about supervision for lunch etc. So we are going to discuss with dd over the weekend and make a plan. The bottom line is that if she starts to lose weight again, or more accurately doesn't keep gaining, she will have to stop again though, and I'm kind of expecting that to happen for her to believe that there is such a firm boundary. She doesn't actually know she has gained weight at this point, and that's how we are going to keep it for now.

@Proseccoismyfriend - how are things going now you've been at home a few days? Hope things are ok.

@greydoor that's good that the GP signed you off. I completely get what you mean about any kind of empathy setting you off, I'm exactly the same! I've got to say it sounds as though you are really doing a brilliant job of refeeding your DD, and those weight gains are really impressive. It's so so tough and relentless but you are doing so well. Don't lose sight of that!

Hi, that sounds positive I'm so pleased many of you are making small steps in the right direction. I too keep just breaking down, the dog walk seems to be the worst when I am alone. We saw his new consultant on Wednesday who will be taking over all of his care, she feels it's anxiety but doesn't want him discharged from an eating disorder as quickly as he has been by the hospital so the specialist edict team is coming for another assessment before she'll really make up her mind. I've ended up going with a private therapist as the waiting list is massive and she said we need to move quicker but without an ed diagnosis they won't. I've also been recommended to look into hypnosis for him, have any of you got experience with this? We are really stuck trying to up his calorie intake as that's all his fear foods, the dietician is coming back to me. He's doing well with 3+3 and I'm gradually increasing his portion sizes hoping he gain when we go back next week. He seems happier today and not as 'wired'. He's desperate to get back to school and I'm also worried about that but how much he's missing.

Hi @Proseccoismyfriend Try not to worry about school. It went from being really important to me (DH and I both teachers) to totally irrelevant. I think there was a slight shift in DD's thought process too, when she realised I really didn't care if she went to school or not - her health was way more important. I told her she could get her GCSES another year, with another group of people, and that scared her too! I'm pleased to say she's only missed school twice since Xmas due to ED, whereas the term before Xmas was utterly terrible. And that was without any inpatient stays. So please, please please do not worry about school. Kids are very resilient in the classroom, and catch up with peers v quickly when they are ready to learn. He wouldn't be taking much in even if he was there right now, as he will be constantly thinking about food and hunger. Consider each day of bed rest as an extra calorie saving. Hang on in there x

@Proseccoismyfriend surely anxiety about food and eating IS an eating disorder? Does he have anxiety linked to other things? Or generalised anxiety as well as an Ed? I think this sounds like an error in formulating but I know I'm not the expert here...

I think what we are gaining in calorie intake we are losing in mood, my dd is awfully low. But I know weight gain has to happen before anything else will.

We are cramming calories in and trying to keep portion sizes relatively low so as to try and not overwhelm her. She isn't allowed to see me prepare food at all, some meals are eaten in front of the tv. We are giving her some 'choices', eg porridge (made with double cream) for breakfast, does she want banana and caramel or biscof? I found the chapter in Eva musby really helpful in managing mealtimes and knowing what to say when it all goes to pot, especially the stuff about 'me and dad know how to look after you well, that's what we are doing and you don't need to worry about how much to eat just now, we are helping you with that'

Hope things start to improve for you. i don't know about you, but I can't really believe we've only been at this for a few weeks, it feels like ages...

That's what I said! The consultant doesn't want him ticked off in another pile as food phobia in my eyes is just another name for an eating disorder. He still shows various an traits and behaviour but as he doesn't fit into one box no one appears to want to give it a proper name yet. No other anxiety whatsoever, quite shy maybe a little unsure of new things but not anxious. When he had a meltdown on the ward in front of them they all felt that was classic anxiety.
I need to look at Eva mushy as he's very involved with what he is eating but I control portion sizes and say when it's not enough, he looks better but I'm too frightened to get the scales out so will wait until Thursday. He said he can't wait for his clothes to fit again so I'm hopeful. I agree, it feels like a lifetime has passed and we aren't really in the thick of it yet

Thank you, that does make me feel much better. I had a lovely elderly relative (she's lucky she's still standing) telling me that he goes to school regardless and if he struggles it's his own fault as it's his own doing. Every meal is put in front of him, he gets no choice and he doesn't leave until it's all gone, none of this snack malarkey 🤬 Imagine if it was really that simple

@grey great your GP was empathetic. That dam needed to burst
@swatty thanks for the reminder to keep trying to push forwards. Even the 'easy' foods can be hard on a tough day. Feels like I can never really trust in where we are w the AN from hour to hour
@prosecco school will be fine. Our thought process is that long term better to go back w a strong routine even if this takes longer than ideal rather than build on shaky foundation and deal w more relapses

Sorry I haven’t caught up on this thread so will read through later. I just wanted to know is it ‘normal’ with this illness that it makes them display signs of autism. She wasn’t like this before but she’s having meltdowns over such silly things today it’s been wanting a new pencil case and then swimming we didn’t have much conditioner so had a meltdown hitting herself it the head because she was stressed that her hair wouldn’t be clean enough. She wasn’t like this before the Ed. I can cope more with the eating it’s the meltdowns I struggle with , I’ve come back from swimming crying and having a large glass of wine. I feel a shit mum cus I get snappy I know it’s not her fault but I don’t know how to cope with it. It’s exhausting walking on eggshells she’s been scratching herself as she gets stressed. Meltdowns over anything that she can’t do right now if that makes sense. Its all silly things and irrational I thought she would be getting better as she’s been eating but I worry these thoughts won’t ever go away is she going to be a nervous wreck for the rest of her life?