anyone else's teen not engaging with CAMHS?

[ExistentialistCat]

Posting in the hope of gathering people's experiences with CAMHS.
DD14, restricting from last May, first told me in early July. Assessment with CAMHS in Sept and I really cannot fault what they've offered: we've had input from psychiatry, a dietitian, family therapist and a paediatrician, as well as weekly sessions with our key worker, a psychologist. Even offered 4 days of multi family therapy over October half term.
Problem is, DD won't engage. Not just that, she is TERRIFIED of CAMHS. Some suggestion of neurodiversity/pathological demand avoidance but I'm not sure. She's always been incredibly headstrong but has definitely come across as more neurodivergent as her weight has dropped. Currently 74% wfh.
Since our assessment, she has steadily continued to lose weight. But something shifted at the turn of the year. She started to take supplements and is determined to be well enough to move to a new school. She has been on a very gentle upward trajectory since then - bumpy and uneven, but better than anything we've had so far. But every CAMHS appt is a huge setback because she gets so stressed. Now she is refusing to be weighed and today she ran away and refused to attend our appointment with the psychiatrist.
CAMHS themselves are saying to us that they don't think their input has been helping and in fact asked us what they should do as she just refuses to engage with anything. She has sat silently through weekly sessions since September! The FBT "parents know best" approach was an unequivocal disaster, the only way things have shifted at all seems to have been via her taking responsibility for her own recovery.
What are other people's experiences?
I'm half wondering about pulling out of CAMHS (risky at her weight, I realise) and having the basic obs done by our GP.
Please be gentle. So many people have told us that we just need to be firm and put down boundaries, but I cannot physically make her eat or attend appointments, and the implication is that I am an utter failure as a parent because of this.
Apologies for the epistle. I've been lurking on the general support thread and have found people's experiences so helpful, just really really hope others can relate to this situation.

My DS (he’s over 18 now) couldn’t engage at all. (OCD and disordered eating)
He said it made him feel worse and was too much pressure.
In the end he was just in the background of video calls for medication reviews.

I have absolutely no advice, but full sympathy and reassurance that you are not alone in this, although it may feel like you are.

Thank you, Namechanged, even just that reassurance is helpful. DD has said in the past that she wants to get better but will not recover whilst under CAMHS "on principle" (she has always done a lot of things "on principle," very often to her own detriment), so that they cannot take any credit. It is unbelievably exasperating.

There is a webinar tomorrow run by Tony Atwood and Michelle Garnet (both clinical psychologists) about anorexia and autism. https://www.attwoodandgarnettevents.com/products/webcast-autism-and-anorexia-nervosa-21st-february-2025

They are based in Australia and are autism specialists. I haven't been to this webinar, but I've been to others they run and think they are excellent.

They sound very similar!
DS was very resentful of their intervention.

It’s very difficult being the go- between.

https://www.attwoodandgarnettevents.com/blogs/news/why-do-traditional-eating-disorder-treatments-fail-many-autistic-people

A blog by Attwood & Garnet. (I'm not being paid by them!)

@Neolara Thank you, I will look at the links you sent. It seems to me that a very starved brain starts to look autistic, if that makes sense, and I find it impossible to untangle what is anorexia, what could be neurodivergence, and what is just my DD. She was very upset by the psychiatrist's suggestion of neurodivergence and says it feels like she cannot be herself without having a label slapped on her.

@Namechanged43 Yes, exactly that, being the go-between. I get where CAMHS is coming from. I get my DD. I just wish it didn't feel like these were different sides in some epic battle!

Have you looked on tve BEAT website. They have lots of information, help lines and online parent groups.
I found them very helpful.

DD was struggling with CAHMS so we dialled it back to 2 weekly for her and started from basics - key worker building therapeutic relationship with her.

Does she get blind weighed (facing away from display and given no indication of her weight) or could that be causing stress.

We went more modified Charlie Weller than Eva Musby. Familiar rota of meals + 2 snacks. Not out of the woods yet. Starting WFH of 78 and slowly gaining.

Could you ask for perhaps a 3 month break from appointments while she stays on their books? Perhaps you could let them know every week or two how she's getting on. Then reassess?

CAMHS can make things worse- it doesn't always work for every child

@Roseau18 Thank you, I've looked at BEAT but not joined, it felt like they were pushing the whole FBT approach so hard that reading through their pages just amplified my feelings of getting it wrong. Perhaps I should give them another go.

@andweallsingalong We were weighing her and she wanted to know her weight, but as of the last three weeks she is refusing to be weighed at all. Weighs herself and then adjusts what she eats - she is aiming to gain 0.5kg/week and is motivated to do this. Problem is of course that she struggles to follow through on this intention when presented with actual food. But any attempts by us to guide her (eg meal plan, snacks) are met with absolute refusal to engage, she just freezes and blanks us. I think it's extreme fear that drives this behaviour but sometimes it's hard to remember that and not see it as sheer bloody-mindedness.

@anonhop Yes I've been wondering about something like that. CAMHS are acknowledging that their input doesn't seem to be making much difference but their reaction seems to be to put it back on us, asking us what we're going to do about the fact that nothing is working. If I knew that I'd be doing it!

Wishing everyone's children well, and thank you for your replies.

With DD when she was in the extreme fear stage we would not argue, but later when calm start a conversation about being worried and scared about how little she had eaten that day and that her body wasn't getting enough food and that could cause x,y and z. She wouldn't give much indication of caring at the time, but the next day would try harder.

I do think the best thing was the Dr saying she wasn't well enough to know her weight and not telling her it. Although very early on before CAHMS it seemed to get through to her a little when she had agreed to try hard to eat, spent all week talking about how she could see how much bigger her tummy was getting. Then hopped on the scales at the end of the week and had lost a pound. I think that finally got through to her that she was suffering from dysmorphia.

The other best thing we did was meal planning - with DD, not CAHMS. Then rigidly stuck to it even when she didn't want to. Because it stopped the fear and worry about being faced with food as it was always the same. CAHMS wanted us to do full Eva Musby. We refused, but did take bits from it. 3 meals, 2 snacks, parents are in control of what we feed you because you are unwell. Food is medicine, etc. But we never forced her to eat or used conflict. We were always on her side, ready to listen, wanting to know her thoughts and feelings. Some were easy to give medical facts to challenge.

She absolutely hated CAHMS to start with and I don't blame her. 5 people in a room, including parents Vs 1 her. So we had a meeting without her. Were very clear it was damaging for her and asked her newly allocated key worker to start from scratch and actually talk to her, include her, build her trust.

Cautiously going well for us, it took around a month to stabilise her. CAHMS don't seem to give credit for this bit - going from rapid loss to gentle loss, to no loss is a huge achievement to me. Then slow gain ever since with the odd week of no gain or very small loss. Her stomach is still tiny and can't cope with full meals, but much better than it was. It's a long road....

Almost forgot. We also took every opportunity to praise her for anything positive she did in life (apart from eating) as anxiety underpinned her eating disorder. Spent a fortune on doing things to distract.