Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

@Scr1bblyGum

But how do you not take no for an answer? If she says no she says no. The psychiatrist said last time she’ll need to be on board as has to take the tablets. We can’t ram them down her throat. We say she has to eat, put the food in front of her and she refuses.

You're right. Unless you have a way of making the tablet more appealing than the alternative, it's impossible. So, for example, if her phone is ultra important to her, then that goes until she's done what you've asked her to do. But if she doesn't care about any of it...no dice.

No can’t take phone. It doesn’t work with ASC. Loads of new stuff out re handling AN with ASC and they say not to do that. When we took phone before dd ran away.😩It’s a nightmare and why AN is so hard to treat with ASC.

@NelleBee

He’s having milk and peanut butter toast now. Am I better trying to get a sooner appointment with his CAMHS doctor rather than the GP?

I think you have to do what you're comfortable with. But if you were to present at hospital with the checklist and refuse to leave unless they take his blood and his obs, etc., then they are likely to admit him. Then he would be referred to the EDT as part of his discharge planning and they would most likely visit him on the ward and arrange to see him regularly.

DD1 was 'seen' by CAMHS (telephone assessment) in August 2020. They didn't take her on. It was only when she was admitted in January 2021 that she was taken on by the EDT.

@Scr1bblyGum

No can’t take phone. It doesn’t work with ASC. Loads of new stuff out re handling AN with ASC and they say not to do that. When we took phone before dd ran away.😩It’s a nightmare and why AN is so hard to treat with ASC.

I hear you. DD1's response to my comment that if she didn't eat snack she'd get ill, was 'well I want to die anyway, so....'

I got mine from nhs website!

She needs therapy for whatever feelings make her want to fade awy and die.

@Scr1bblyGum can she say why she will not take the meds?

It will make her put on weight.

@lougle I have just put my DDs stats into that TDEE site and the cals it’s suggests for a gaining program are under what she is currently eating and she isn’t gaining 500g a week....and I put her down as an athlete...

@Scr1bblyGum ah ok. Blimey how tough.

The fact it may make her hungrier and doesn’t actually cause weight gain itself doesn’t seem to matter.

Scribbly I think I linked you to a new fb page called 'Girls with Autism and Eating Disorders' I wonder if anyone on there might have some ideas.

Reading some of the posts on that page reassured me that actually my approach is what they recommend for an ASD/ED mix. Things like allowing some flexibility, allowing some food to be left and where possible taking the pressure off.

That said I think the thing that's made the biggest difference to dd is all the double cream I've added to everything 🤣

@Lottsbiffandsmudge she might be hypermetabolic. Part of the recovery process is organ repair and that takes a lot of calories. So a recovering AN patient can go for a while without gaining, even though they 'should'.

The calories thing is quite mystifying. DD1 averaged 2327 in the week prior to gaining 2kg. She averaged 2438 last week and only gained 1kg.

@Scr1bblyGum can you present it as 'it doesn't make you put on weight, or 'make' you hungrier, because it's a low dose, but it will help some of the bad thoughts go away.' (which is true, but often does lead to increased appetite, etc).

That’s a good summary. Will try that.

Could you resend that Facebook link Girlie?

@lougle totally agree. Although my KW did say that a good poo could be 500g..... when one week Dd gained 1.5kg and the next nothing on the same cals....she said it was prob 1kg the week before and 500g that week but she needed a poo week 1 and didn’t week 2.....

anyhow DD has really enjoyed hockey tonight. Saw all her friends (some she isn’t at school with) and scored 2 goals. She was actually bubbly....
just hoping her weight tomorrow does not mean we have to pull it....

I think we need to keep in mind that even ASD aside, our children have disordered thinking.

An example conversation today:
Psych: We have 3 options. Increase rispiridone (might not be suiting her, will it just waste time?), switch back to olanzapine (but we don't want her asleep all day) or try aripiprazole (not sedating but can be agitating).
DD1: I like the olanzapine and I want tablets because they make me happy and liquid doesn't.
Me: Dr is the expert....
Psych: The trouble is that the olanzapine made you very sleepy...
DD1: I'd rather sleep all day than be this angry. Give my olanzapine.
Psych: it would be nice if you could be happy and not sleepy though.
DD1: Meh, who cares anyway, I just want to die.

DD1 can't remember a time when she was happy. She can't remember a time when she felt calm and alert. She's not able to rationalise the options.

@Scr1bblyGum your DD can't rationalise the idea of being happy to eat, or that gaining weight could be a good thing. She can't understand that and thinks you're crazy for suggesting it. But I bet she's got a shed load of thoughts she'd like to get rid of, that overwhelm her. That's what the olanzapine will do.

@Lottsbiffandsmudge I know!! When DD1 gained 200g I said to the nurse "We're doing the jazz hands for 200g which is basically a big poo...."

Morning all.

It’s DDs birthday today and I feel...deflated. Like there is no reason to celebrate. We aren’t doing anything because she is concentrating on assessments (mocks) but it’s more than that. There’s been no lead up to it other than me making a cake. No excitement.

I know some of it is her age - but I’m finding it hard to be happy for her. No special meal. No party with her friends. The cake will be eaten, but not ‘gorged’ on. She doesn’t want her presents until the weekend, and even then she’s not got anything ‘special’ because she didn’t want anything.

I’m so flat.

Morning eve - our DDs share a birthday! Am sorry you are feeling so flat. We've been lucky insofar as Dd has turned focus on to recovery and whilst still very fragile she is keen to not look back in a few months and regret not enjoying her 18th as she could have done. That said, am not sure a trip to Camhs is anyone's sense of birthday fun 😂

Aw, happy birthday to your dds, myrtleWilson and exLtEveDallas, even if they are a bit low-key this year. I'm spending a lot of time imagining this time next year atm - we may not be millionaires but we could well be mothers of ED-free dc. Nothing I'm wishing for more.

I don't think dd is eating enough to get her weight back up from 88% currently - she's saying all the right things but she can't seem to translate this into action. Going back to school has really messed up her perception of how much she needs to eat. Oh well, Easter hols coming up, so at least I'll know exactly how much is going in.

(And I'll have to keep a keen eye on the social gatherings. No more vodka parties!)

Scribbly I'm not very technical, I definitely tagged you on the link on the EDSUK page but can't work out how to find it now 🤦‍♀️ Lougle might be better than me!

Happy Birthday to all the lovely birthday girls!! Sorry you're not really feeling it eve, maybe could plan for something nice at the wend if that's when you're doing presents? Even a drive out to somewhere pretty or a girls evening (face packs etc) That's basically what we did for dds bday. It does feel weird not really being able to use food to celebrate though 😕

www.facebook.com/groups/1370096683323713/?ref=share

Try that, @Scr1bblyGum

Happy birthday, MsWilson 🎉🥳🎁🎂

Well DD1 started the olanzapine again last night. This morning she ate 50g Coco Pops,120ml milk and 80ml double cream without a murmur.

That olanzapine is incredible...