Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

how much is he eating? Do you know his heart rate (easy to check at home). Do you think he would be more compliant with the GP?

If you have any concerns, call an ambulance. we had to do that with DD as she would get into the car at some point and she was admitted to HDU as she was so critically ill and what heart was struggling (she was on 84% at that point but had lost weight rapidly).

Mine is younger so not sure where you legally stand - he sounds far too unwell to make decisions about his health. AN is clearly in charge. Hopefully someone else will be along who is more knowledgeable about this side of things.

Can you ring Cahms to get seen Asap? Or talk sense into him to let a&e do all the tests and go back?

So unfortunately if they are 16 or 17 they can refuse.
As per guidelines they ought to tell parents if they are not responding to treatment.
But from own experiences that sometimes happened and sometimes not...

@WoodenTrain

At 16 they can refuse treatment.

My DD tried this, they said they would section her unless she agreed to accept treatment. The threat of that and a 24/7 in patient with an NG tube got her to start eating.

For us CAMHS moved very quickly after the first A&E visit. We were seen within a week and at the EDU the following week. Along with another hospital visit via CAMHS with a view to admission. Re feeding syndrome was a huge concern in the early days.

DD was not quite at that stage to require in patient admission but ill enough for her to collapse at home after which I took her to A&E. Unfortunately I hadn't made aware by camhs she had lost more weight....

Hello, sorry I've been slow at replying/catching up on messages. Surprisingly (not), once I told DD I was going to contact the EDU team again to discuss possible sectioning (she's 17 and refusing treatment), she's suddenly increased her intake to 1400 yesterday and 1300 so far today. I emailed them and they got back to me saying she's eating enough not to be sectioned, and as long as she continues she can stay at home. So now I've got DD'd anorexia cunningly controlling what happens. If this is anything like last time, she will stick to a low intake but just enough to get by, before slowly decreasing calories again. I'm so sick of losing the battle to this horrible illness

It’s frustrating that’s he’s been deemed to have capacity because he’s 16. How unwell does he have to get before they decide he doesn’t have capacity? Although I appreciate they can’t really pin him down and forcibly take blood.

I’m his appointee when it comes to financial matters as it was decided he didn’t have the capacity to manage his own affairs. For example, he refuses to have a bank account as he believes them to be not safe due to hackers. Similar reason for not wanting his observations and bloods done. Doesn’t want there to be a permanent written record of what’s happening inside his body. Doesn’t want anyone holding records about him.

I have been able to check his pulse and it seems okay, was 109 yesterday and 69 today. He’s still really cold so we are having to put the heating up. He’s been awake a bit more today and played yu gi o with DS2 which was positive. He’s had about 700 calories so far today and he’s asked for a chip butty for tea.

Thinking of you all, this is so tiring. Someone mentioned sneaky behaviour - DD came down from her bath last night white as a ghost with blue lips. She had been in a cold bath for about an hour :(

Didnt occur to me in the slightest that I’d need to check she wasn’t running cold baths/showers! Any other random behaviours I should be looking out for?

My girl was doing this 2 days prior to being admitted the other week!

Glitter** my dd was a bugger for making herself cold, she would open windows, wear summery clothes, take blankets off the bed. I had to be very strict and would check showers and baths to make sure they were warm, had the heating on all of the time, forced her to put jumpers on.

I think dd did most of the ED behaviours at some point or another 🫤 we had pouching (holding food/drink in her mouth), hiding food in her clothes, smearing food on the plate or over her face, crumbling food, wiping food on any nearby surface.

We had ocd behaviours that were designed to burn more calories, so she would walk into corners in a room rather than straight across a room iyswim, she did this outside as well.

I'm sure there were more that I've forgotten!

Wooden have you got any leverage you can use to get the obs done? I'd be taking everything (electronics, phone, telly) away until he agreed.

Lyrricat I'd keep pushing re getting her sectioned and I'd also be turning my home in an ED unit. She eats what you give her, she stays out of the kitchen, she is blind weighed...

Blind weighing was essential in our case. Because DD is older she always asked to know her weight and it took a long time for her agree to be blind weighed. I can’t really understand why it is not pushed more as it seems to be key, otherwise they get stuck at an unacceptably low weight - just enough to avoid hospital imo

@glitter open windows here too. She turned the radiator off in her room.

Before we cut all activities she would be having a snack in the car until DH caught her throwing it out of the (also) open window.
We had real problems with food stashing. She had a locker of rotting food which she admitted to a few weeks after we started round the clock being with her.

@Glitterfarti we have the underdressing - both at home and when out and about. She tries to stay cold a lot. No coat when out or zip open even though it's freezing. this sort of stuff.

@ReineDeSaba Big food standing problem for us too. We only discovered recently that DD had been hiding almost every lunch and all snacks in bags in her wardrobe. She'd empty them out in public toilets 😞

stashing, not standing

@lyriccat oh I'm so sorry. It's such a shock when you realise how determined that ED is. I actually felt so sorry for my DD to be so trapped by it😪

Just spoke to DS care coordinator at CAMHS. She said there is nothing they can do. It’s just a sensory issue due to his autism. They suggested contacting an autism charity for support and taking him to the GP to ask for supplements!

I did my best to be assertive and explain that it wasn’t just sensory issues and he’s admitted to me he's actively trying (and succeeding) to lose weight and he is rock bottom in terms of his mood. But they said they can only go off what he tells them and he tells them he’s doing ok. I got a bit more assertive and now I’m waiting for a call back while she discusses with colleagues.

You couldn’t make it up. I’d laugh if I wasn’t crying

oh wooden, that is awful that you are dismissed everywhere. Can you email the Camhs team and leave a paper trail? I found sometimes, this worked (more in the sense of arsecovering on their part but at least we weren't totally ignored and got support). Other than that, can you contact PALS?

Emailing to leave a paper trail is a good idea @Curlyhairedassasin
The care coordinator just called back and they’ve spoken to the eating disorders team who have said he’s amber (based on wfh I presume) and have given us an appointment for two weeks time. But they’ve said as he’s 16 if he doesn’t engage they won’t be able to do anything without his consent until he’s red.

Just had first FBT session

The women was vile! I felt Iritated from the beginning when she said as we only have an hour and cut me off

My daughter froze and didn't want to talk

Repeatedly kept telling me FBT is where parents needs to take charge and it's down to us not professionals

She was patronising and even rolled her eyes at one point! She didn't like me at all and wasn't empathetic

What js everyone's experience with FBT?

My daughter doesn't want to do it and I know it's not something they want to do but his this has helped her I don't know

@WoodenTrain how on earth can they code him on amber given the complete absence of assessments. I would certainly contact Pals.

She cut me off as in over talked me a lot and said we have a lot to cover in one hour and she didn't have a nice way about her
I'm thinking I have to take her and when I asked how long the FBT was so at least I thought just suck it up so it looks like I am engaging but she laughed out loud and said how long is a piece of string ?!
Just very bizarre considering they are supposed to be professionals
I tried not to let my emotions show obviously but she made me feel very uneasy
The lady we had before was really nice but this women is not got a nice way about her
I feel very unsupported and have had more support and valuable advice on here
So worrying when people get to feel
Like this after speaking to a therapist
She was even slagging off the NHS at one point !

Omg 😦 this is awful
2 weeks appointment? So shocking
I feel for everything through this that aren't getting supported

So sorry to hear you had such a bad experience. My DD never wanted to start family therapy so I have no experience but she has tried multiple therapists herself and has always come away saying they are condescending and no use to her. Are you able to request a different therapist within your ED team? We've requested different clinicians before after unhelpful comments and our team were able to do this.

I did think that as the only thing they know is his weight and height. How does the assessment work? I assume they are talking amber on the MEEDs thing? How many red criterion do you have to hit to be classed as red? I feel like if he’s not red already he must be close

He’s already said he’s not going to anymore CAMHS appointments. I’ve tried to engage him in making a meal plan, but he says he’ll only eat if hungry. He’s had 300 calories so far today.

@WoodenTrain when my DD was admitted last week and had 2 factors on RED so I will dig it out - I def think they aren't supporting you enough