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

[Mummyoflittledragon]

New thread. The old one is full…

@Mummyoflittledragon there's a good chance it will go well for your dd and that will be such a great step forward for her.
But the constant worrying is a lot. Hopefully you can take the chance to rest. It sounds like she might be getting ready and motivated to push herself to be less reliant on you.

I agree that some rest is probably needed for my dd - but i do think some routine and purpose will help too. The eating is still very bumpy but I'm less stressed as at least we have ups. Yes, nudging her along with suggestions to grab etc. 😊

@Thisnowtoo
I absolutely agree about routine being an important aspect. My dd always thrived on one. Hence why the 3+3 is so important of course. Not that our dd’s can see that.

I agreed it’s the constant worry! I pulled a chunky white hair out earlier. 🙈. It may age rather than stress related, but the hairdresser has commented on stress possibly contributing.

I would very much like dd to be less reliant on me. And there will be some kind of step forward either way and perhaps more appreciation of what I’m trying to achieve with her. By people there, I am meaning there if needed, rather than expecting it.

i meant to say, I do hope you will have some of the ups soon with your dd. Does she have any idea what she wants to do this year?

@Mummyoflittledragon I have my fingers crossed for you and your dd.

My dd doesn't have any real ideas atm. I'm nudging the idea of ideas!
Most friends are away so life will pick up when they return, which will probably help.

Mine stopped normal functioning literally right before a levels. The fear and the dark cloud over the house don't ever dissipate. Fwiw although they have never shown any consistent recovery they did well on holiday with friends. As long as its not a million miles away (you can get there) and its a country with a developed healthcare system you might find it helps you both. I did get a couple of panicked phonecalls but given my normal level of existential dread I think that's ok.

Today has been a surprising day
DC has asked for real, homecooked food. Twice.

It is the hope that kills you

It is the hope that kills you

Ain't that the truth! Fingers crossed it's a good sign though. For those of you whose kids are going on holiday, I hope they have a good time and are safe, and that you get a break while they're away.

We've had a really difficult few days, DD is not making any progress with putting on weight after 6 weeks as an inpatient and her mood is spiralling downwards. Part of me really wants to take her out of the psych ward, she's so miserable and finding it so difficult to cope, but I know it would go pear-shaped at home really quickly. If they'd just let her go out for a couple of hours at a time it would really help just to keep her morale up, but so far they've said no to leaving the premises.

@StressedANmum that must be so disappointing.
I remember the hospital had a very rigid take on treatment for your dd, not allowing you to bring in your own food. I wonder if they should review that decision now?
Nb my understanding is that if the local nhs zone doesnt provide a specific service, the gp can get funding for you to access that service privately - under Right to Choose. That might apply for accessing a ed specialist centre. Especially if they still haven't given you the ND specialist support.

@Thisnowtoo we have asked for that again at today's care planning meeting, along with some other concessions but I'm not enormously hopeful, they do seem very rigid. My biggest worry right now is that, having been given the impression for the last few weeks that they wouldn't allow her to leave the unit, the consultant told her yesterday that she could discharge herself if she wanted and they'd just wait for her to end up in a&e and then section her!! So now I have to try to persuade her not to do just that.

Unfortunately where we are (devolved administration) there is no right to choose, this clinic is all there is.

They told her that!!!

My DC is under CMHT not EDU. I sent them a notification that some symptoms had escalated. They replied cc DC. I called to ask how I could notify them of things confidentially and was asked why would i even want to say anything privately

There are some very bad communications skills out there

@unbuckle well that's what she says, although she does sometimes pick people up wrong, so it's possible that wasn't exactly what the consultant meant. I've asked about it in the care planning form for today.

They seemed to be saying that they don't really think she's going to make any progress until they can section her and Ng feed, but they can't do that right now because somehow her physical condition is staying stable even though she's eating less than half portions. So effectively they're just waiting for her to deteriorate, and the consultant was saying that could happen in the ward or she could go home and it could happen much more chaotically by her having to be readmitted via a&e.

Your experience with the communication is very frustrating, it's a really difficult balance with teenagers, but you'd think since the medics are always telling us and them that their brains don't work properly when they're starved, that they'd understand that there may be things you need to discuss without involving them.

@Thisnowtoo That’s good to hear your dd has potential plans to get out of the house. I hope her friends are back soon.

@unbuckle I get the ceasing normal functioning before A levels. Dd did that before her mocks in January (her school only do one set of mocks), so I was prepared for the actual exams and was propping her up a lot and nudging her like mad to eat. Did your dc manage to sit them or were they awarded grades if not? I hope so.

I totally get where you’re coming from on the black cloud.I do hope that you and you find some special moments together. It is so difficult to create a place of joy within your home, when it is like that. I know this is what my dd is craving. Hence her desire to leave. She thinks that happiness is somewhere out there, but not at home. Whereas in reality, happiness is something that comes from within.

@StressedANmum
I am so sorry that they’ve come to the conclusion your dd will need sectioning. Would she like to go home? And what do you think about that?

Communication with services sound very hard to navigate. Of course parents need to discuss things confidentially. Legally, as you know, they can only discuss over 16s with their permission.

i am wondering if their hands are tied, but would engage more if your dc gave written permission for them to talk to you separately.

My dd is being really difficult again. I thought her anxiety was going to go down after her exams. Apparently not. I have tried hard for her not to sabotage her birthday. Just trying to accept what I can’t control.

Just checking in to say a big thank you to everyone who encouraged me to make the most of my little trip away at the weekend, and to trust DD would be ok on my absence. It was just what I needed, more than I realised. DD and DH spent much needed time together and just seem more relaxed together as a result. She probably ate less than if I was there, but not much, and one of her catch up snack days before I came back so overall no real worries. I'm currently waiting to pick her up from helping at a school event, which is a big step
We'll then go home to a long slow dinner, made up of very specific things, but our energy for dealing with that is renewed. So thanks again for the hand hold, this community rocks

@Mummyoflittledragon sorry to hear it's a stressful time, such a tricky balance as they near 18. Im in awe of.your patience and strength
@StressedANmum thats so hard, and frustrating for you. Hope you find a way to resolve the communication situation

@Mummyoflittledragon she is desperate to come home because she hates it on the ward so much, it's torture for her with the autism, but at the same time she knows that she's not going to get better at home - we tried that for 8 months and by the end of it she was throwing plates at me and kicking me when I tried to bring her food.

She acknowledges that she has anorexia and is very underweight, and she says she wants to get better, but she just doesn't seem to be able to increase her eating to a point where she actually gains weight. In all honesty I'm dreading the possibility of her coming home at this point, I know that inevitably she will eat more for a few days while she catches up with all the things she's been craving, and then it'll fall off a cliff and it'll be down to me to try to pick up the pieces.

It's very unlikely she'll get back into the paediatric psych ward if she does leave and end up in a&e, as beds are so scarce, so I don't know what would happen then, whether she'd be held on a medical ward for Ng feeding or what. The idea of her ending up on an adult psych ward is horrifying.

I am going to try to see her consultant tomorrow and go through all the possibilities, but I just can't understand their attitude to this, they turned down almost all our requests except for taking her on a short drive, but they made that dependent on completing her meal plan each day which she currently can't do, so even that doesn't help. Surely it's better to give her a bit of freedom but keep her working with them, rather than refuse a few concessions and let it all go to hell in a hand basket?

Hope everyone else is having a better day than we are.

@StressedANmum thatnmust be so hard, getting to thebpoint where you know hospital is needed but it being such a difficult environment. Do you think the consultant understands the impact of autism well enough? Is it worth asking them if they are following PEACE? I know we all spend so much time trying desperately to learn about eds and psychology to support our kids, and knowing so much can make it really hard to understand treatment decisions.

@StressedANmum
I echo everything @unbuckle said. That sounds incredibly tough for your dd to cope with. And the strength and willingness she is showing is quite something. I also wonder if they get the impact being in such an alien environment is having on your dd.

I hope you do manage to speak to the consultant today and get through to them how upsetting and difficult it is for her to be there. I would want to understand their reasons for not letting your dd out. I am wondering as they say she’s not at medical ridk, if it is the reward element of it. Otherwise perhaps they think people, who have yet to make much progress are more likely to refuse to return to hospital than those, who have?

@LurkyLurkyLou
That sounds brilliant. And a real growth moment for everyone! I hope it all went well at school yesterday.

As for my patience, yes and no. I have it until I get fed up unfortunately. I can be really spiky when tired / pushed. And that generally comes after a long day of being goaded. Yesterday evening I did have a go at her. Not without cause.

@Mummyoflittledragon @unbuckle I don't think they really understand the impact of her autism at all unfortunately, and yes I think they are very much using the model that you have to earn your privileges by complying with the meal plan. It's never going to work with DD, she has demand avoidant traits.

My impression is that they pay lip service to neurodivergence rather than actually doing anything to accommodate it. For example, when she was referred for admission they told us they had a neuro affirming pathway and would prepare a communication passport with her - six weeks in and she's still on a waiting list to see SLT about the communication passport, and there's no sign of any pathway that I've heard about.

DD feels like they are very dismissive of her feelings and opinions - everything is "oh that's the eating disorder talking". Well, sometimes it is, but other times it's the autism or the trauma, and they need to do better at distinguishing the difference.

@StressedANmum
That doesn’t sound good enough re the passport. It gives the team an excuse to not treat your dd as an individual. I just googled the passport and there are some templates online. Perhaps your trust is available. It would perhaps give you something to provide to them even if it’s not signed off by SLT.

It can be very difficult to distinguish between ED behaviour as people in an emaciated state can display autistic traits. And this is why the NHS won’t do assessments, when individuals are in the throes of anorexia. However, you know your dd. And I’m sure you can differentiate in some cases and disagree. Demand avoidance is very tricky to deal with.

@StressedANmum might it be worth taking someone with you to help advocate?
I have always been in two minds about the idea of the ed talking. My DC insists they have no ed voice, and really who am I to tell them they do. Also - sometimes a person is full, grumpy, doesn't like cheese or the food is horrible. Sometimes the person is talking and they just happen to be saying something others don't want to hear. Even if the medical team is convinced externalising is useful I'm not sure anyone would appreciate being told they don't think the things they think

@Mummyoflittledragon @unbuckle I have filled in a template for them, they are supposed to be getting DD's input into it but that's the bit that's gone nowhere. We have a meeting with the parents advocate this afternoon, DD has met with the patients advocate several times, but I'm not sure what influence they have.

I think we may have been unlucky in the consultant allocated to us, we had a different one for a few days when ours was on holiday and she was much more open to trying things out, but unfortunately when ours came back it was back to inflexible again.

DD also says she has no ED voice, so the externalising doesn't help. She just wants them to recognise that she's not just the eating disorder, which I get. I just want them to try some options to help keep her engaged with treatment and not make her feel like her only option is to throw the whole treatment programme away.

@StressedANmum That sounds frustrating about the consultant. I hope you managed to headway today.
How long are you supposed to wait for this? Just wondering if there is a time frame they’re supposed to adhere to. Most people aren’t in hospital for weeks, so I literally will serve no purpose for the majority of patients.

My dd got angry when I tried to externalise the ED. I did speak to her about the voices one day, when she was having a moment of clarity and she didn’t object to that. I was hoping these sort of discussions would bring her to admit she had an issue, but they haven’t so far.

Same. My daughter is adamant there is no voice, no bully in her head. She says this is all her choice and she knows what she's doing. She gets very angry when anyone says "that's the anorexia" etc.

Also same. Really surprised to read it's so common. So many books refer to it as if most kids can see it as a separate entity.

I think externalising helps clinicians stay calm, and they therefore believe it will help carers too. I have never tried with my dc as they said from the start there is no voice, they just can't eat and don't know why. I am conscious I might assume nothing will work even if it does.

Maybe as people recover they might find it helpful to conceive of intrusive ed thoughts as a separate voice, but I think that's quite different from the idea that a preexisting ed voice is a universal experience that should apply to everyone

Although my dd isn’t admitting she is ill, she knows subconsciously. So I can talk about her having an ED / anorexia now, when she wouldn’t let me for at least the first 6 months. She just kind of ignores it now. But anything like ‘that’s the ED / anorexia’, she likewise gets annoyed. I supposed it’s also separating her from the illness.

I think books are often written with people, who are NT in mind. ND people have completely different needs. And clinicians probably work more with people, who are NT even if people, who are ND are more susceptible to developing an ED.

It’s an interesting comment thst it makes clinicians stay calm @unbuckle. They shouldn’t need that crutch. I haven’t dealt with clinicians enough to comment. What I do think is that it’s human nature to link things together and make shortcuts and generalisations about patients. And those are probably more based on experience with NT patients, especially when NT patients can take techniques on board much easier, Being able to take techniques on board can lead more easily to recovery. And I think this possibly then sets up a bias for clinicians to believe that those techniques work in general, when in fact it’s being NT, that works.

People, who are ND otoh can be very literal and black and white thinkers. I wonder if trying to externalise can feel like an attack on the self. Or perhaps it’s just you overwhelming in general. Anecdotally, Jenny Langley’s ds is NT and they externalised it as Rex. He was also early teens. So perhaps that has something to do with it.

It helps me to stay calm I suppose, in that it helps me stay focused on the fact that some unpleasant behaviours are the eating disorder and not my child. So I do get it.

Things are very bad here at the moment. DD restored 1.1kg this week. This is after relaxing and having some fun with her sister and eating more as a result. She was beside herself before the CAMHs appointment and begging not to go. Her weight is so up and down and I had no idea she might have even restored, let alone that much or I would have seriously considered not taking her. She feels that every time she relaxes and lets herself eat the CAMHs appointment ruins her progress - which I can see. I put all this to them in the appointment and they were great to be fair, they said if she follows the meal plan they can move to fortnightly and then even less frequent weigh ins if she's restoring.

Since the appointment though she's not eating very much and she's refusing to speak to us. I don't know what to do. Her hatred of CAMHs is absolutely out of control, if I call them and ask for help or advice, I'm scared I'll make her worse. She simply can't see that they/we are trying to help her and that recovery is the way to get less involvement from CAMHs. She completely believes that if we all left her alone she'd miraculously recover by herself.

I don't know how to bring her out of this black hole she's in, normally by now she'd have come round a little. I can't ever be happy about a weight restoration because I know she'll just undo it all the week after