Under 18s therapy engagement

[idontknow202]

This board was really really supportive a few months ago when I was in hospital with my daughter for a month. I'm hoping someone might make a suggestion this time please.
Since she was discharged into community care we've been seen every week or two. My daughter (12) is not engaging with the therapy, she lies she is fine, frequently refuses to weigh in and it all exploded in this mornings session with her telling becoming very upset and rude that she hates the sessions, it's rubbish and nothing they do is helping.
She's lost 2 kg in 3 weeks but this wasn't discussed until 5 mins before the end of the session so it all ended very unhappily as she refused to weigh for them, I told them this mornings weight from home as she wouldn't.
She says she won't go back again.
The therapists spent the hour listening to her explain she was eating when she was hungry and not counting her calories on a few days, which is progress in one respect but she's 'not hungry' an awful lot and refusing to eat. They praised her for making good progress.
They've never made her to follow a meal plan and we spent a long time stuck on 1500 cals as a max calorie intake. They have tweaked the FTAN to support her autism.
I just feel hopeless. If they take her comments as face value great, if I speak up it's not quite as she's saying she's fuming with me and the session becomes derailed and we have a terrible rest of the day with her angry at me at home. They cancelled the appointment last time 30 mins before she was due and she's upset about that. If she stops attending wat on earth happens next?
I have asked a lot for an opportunity to speak to her therapist away from her and it never seems to happen.
She is experiencing chest pains and severe dizziness again and the weight loss shows she isn't eating enough to even maintain like she was previously doing.
I'm made to feel like this is a me problem as thinking all her behaviour is ED related when she's telling them it's not and they believe her. She was in the health weight range previously so they were less concerned but she is fast approaching not and I'm worried it will wait til then before more support is offered.
Any words of wisdom would be lovely thank you!

Hi @idontknow202 it’s good to hear from you, I’m sorry things aren’t going as well as we would hope.

I remember your daughter eating well in hospital and the team being pleased with her.

I would request a session with the team without your daughter. Most of us have encountered the same as you as they are keen to discharge people once the have gained some weight. Your DD is very young, and they should be asking you how she is doing. Do you see a GP or nurse? Has she had bloods recently.

Please don’t think this is just you thinking it is the ED. It definitely is the ED talking. Your DD is saying what they want to hear, and they should be challenging her to see if she is telling the truth, as the scales are saying something else.

They should definitely question what she has eaten and our dietician increased our meal plan when my daughter lost weight. I appreciate them accounting for your daughters autism, but they should definitely be asking you how she is doing. Definitely ask to speak to them without your daughter and make sure you have things written down, as we have seen them make people feel intimidated.

You will get more support on here from others xx

Thank you for your message. She hasn't had one week since discharge from hospital where she has gained weight, she's lost weight each time apart from about a month of maintaining when she was on complete bed rest. Since she's been up and about she's been losing weight each time.
We've not had any bloods done since hospital the first time I don't remember them taking any time second time we were in but I might be wrong.
I have managed to get an appointment with someone in the team next week as a phone call so hopefully that will help somehow.

@idontknow202 they should be doing more physical checks and bloods regularly, they will then show them if she’s eating well. The weight loss will show it too!

I am glad you have a call with them. Are they allowing her to school? It annoys me so much that they wait for them to get to a low wth before they will
help them. Weigh loss and not eating should be enough. They shouldn’t be allowed to only look at WTH. You’re not alone in having issues with the ED team, I don’t know many of us who haven’t had issues.

Remember you’re in control. I think I member her be f you SD? Could Dad be on the call too? Not that it should make a difference, but being united as a couple may help you get through to them? Xx