Sorry for the delay in thanking you all for your help and comments. But: a big THANK YOU. I might not always agree with all suggestions but even so, your support, ideas and feedback are helpful and empowering. I am so grateful to get some different perspectives from people who have been there. Through this I have regained strength enough to try to dig back in and keep challenging the ED.
MelstevUK - I am SO with you. I was furious with the emerging BPD diagnosis and have stated so in person and in writing to CAMHS, listing about 8 points as to why it is unhelpful, unwelcome and likely incorrect. I don't agree with it, my sister-in-law (a Psychologist who delivers DBT for BPD in adults) also thinks it's unlikely. D apparently seems less bothered by it and has apparently indicated to them it might be a good fit. I have told d that's really not how she presents to me or my psychologist sister, nor the team in her last ED unit who saw her every day for 3 months and who deal with complex ED. So, I have encouraged d to hold onto it very lightly indeed. Thank you for your support in this. Spot on: ) If she has BPD, let it be diagnosed properly and get the evidence-based treatment to help. Neither of which has been offered. It feels like there is a check-sheet their side where they have to account for why a kid might still be on their books 2 years down the line seemingly unrecovered. For emerging BPD, read: untreatable, not our fault.
Also, thanks for your thoughts on the other stuff our kids have to navigate these days. I'm in my late forties and maybe it is my imagination but I do think life was much simpler. At the very least you could develop a little 'under the radar' without the endless scrutiny of school expectations and extreme social expectations due to social media/TV/internet.
Quick food update. No real breakthroughs in terms of hand-held food but perhaps 2 tiny wins this week. Outside of eating I have been saying things like: I love you too much to let you be controlled by this. You didn't fight to get over chronic fatigue to be enslaved by something else. I'm going to fight for you to be free of ED. It's time to push through some of the ED stuff as there is no way round it, only through it etc. (She knows she is still has an ED, doesn't deny it.) and although she has been quiet in response, i feel like she has been taking it in. We had plenty of 'I love you's' this week (though she's never been overtly resistant/rude/acting out) and I think I'm seeing a bit less flatness of mood as we taper down the olanzapine. So, the tiny wins:
'Mum...can I have chilli without the wrap? ' me: 'Yes, but you need the wrap on the side so you get enough energy in'. As a result, she had to use a spoon to eat the chilli and had the wrap separately. Small win, I think.
Part of her usual packed lunch is a dry croissant (big, made with egg) with 38g cheese on side. She always picks at the croissant in a classic ED way. Me this week: 'Getting bored of croissants? ' D: 'yes. could I just have a sandwich?' So made her a cheese sandwich. She ate it without picking. Small win re: having cheese inside the sandwich and eating without picking.
She is still struggling to eat a normal evening meal but I'm working on what I can and I think she is sending me little cues that sometimes she is ready to try and push at least a little, where she can. Also hoping that as she gets quite a lot of fats in and enough calories, this will help in time with brain healing and flexibility.
Even so, can't let up on this thing for a minute. Thanks again all and I am still open for other suggestions if you have any other thoughts. Hope I can pay back in time in the way you guys have on this forum