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.

We have CAMHS support and apparently they are doing home visits twice a week
She's being discharged with vitimins and some Fortini just in case we have issues but DD is adamant she's going to keep the eating going and wants to get better
She's been on movical as she's had constipation so she even hates the thought of that so I'm really hoping we won't end back here even though I know we have a journey x

I really hope motivation to stay out of hospital is enough to keep her eating summer. I'll be keeping everything crossed for you that she has reached a positive turning point x

@summertimessadness24 take photos of the hospital room before you leave, I would show my son when he was struggling or refusing to eat and remind him home is much nicer and the photos helped him keep going.

Thank you xx

This is a great idea - will do this x

She's home ❤️🏠x

8 days in hospital and I'm hoping we are on the mend x

@summertimesadness24 hoping that dd’s transition home goes well.

Hi everyone, just checking back in and trying to catch up. We had a bit of a shit hit fan situation. It got all a bit too much for me with work and supporting both DDs and went into crisis (sort of)... on the plus side, hopefully we finally get a bit more support for DD1 - but everything is so slow and waits everything. DD2's weight dropped a bit again. Loads of water loading before appointments so we don't actually know the real weight. We are working on getting it slowly up again but not much progress. But we are very much alive and kicking.

Welcome back Curly. I’ve been thinking about you and hoping that things were manageable. Glad to hear more support is on the way.
Things are more or less the same for us with small changes. Frustratingly slow for me but too quick for DD. Small steps in the right direction. X

Hi curly sorry to hear things have been so difficult. You've got such a lot to cope with. Really hoping the extra support makes a difference and that you can get dds weight gain going again. It seems never ending with the constant ups and downs doesn't it xx

Summer How is it going today?

Hi, I’m still here lurking in the background. DS is still denying any issues with food which is contrary to what I read in his text messages, don’t want to let on that I’ve read them tho.

Took him to McDonald’s as that was always a good way of getting a bunch of calories into him. He ordered a grilled chicken wrap! Then sat staring at it. Eventually he ate it but then went to the toilet which he never does in public so I was a bit suspicious about that.

Anyway he’s just requested the Pinterest App, seems a strange choice for a 16 year old boy so I’m wondering if anyone knows if it’s a gateway to dodgy stuff?

And we are back to refusing to eat.......out of hospital 3 days

Hi @WoodenTrain I've forgotten your ds's history, so sorry if I am repeating myself! Is he under weight currently? Pinterest has home decor on but is also a social media site to share recipes so I would be cautious about him requesting this. Also going to the bathroom after finishing a meal is usually a sign of purging (it may not be but it would concern me). When he was staring at the food did he say anything or look uncomfortable? My ds stares a lot at the food when he's struggling with that meal and difficult feelings and usually says he can't eat it.
@summertimessadness24 get those hospital photos out, she needs to so she can stay at home, I appreciate that's easier said than done but going back into hospital means they'll keep her in longer so eating is more established (that's what we used to say) and regular bloods again. Remember any meal skipped can be replaced with the supplement (fortini) so at least she's getting something.
We're hanging on over here, been a little up and down again but some positive moments. He keeps saying he wishes this had never happened to him so I'm hoping that means he is wanting to climb out of this hell hole. He's having lunches supervised with a teacher this week so I feel a little lost not running down the school during the day!

@Proseccoismyfriend Yes, he’s underweight. He’s 1st percentile on the NHS BMI calculator and I think I worked out his wfh as 80%

He’s autistic and he’s always had issues with food intake but has maintained this is due to low appetite and he really does want to gain weight. When he was 14 he did try hard and we got him up to 8 stone which he said he was pleased with. I weighed him a couple weeks ago and he was 7st 8lb

I’ve been reading his texts to his cousin and they are all about restricting his eating and SH. I already knew about the SH but not that he was deliberately not eating. He denies this and is still maintaining he would love to gain weight but struggles with low appetite and doesn’t like the feeling of food inside him.

When he stares at his food he looks angry and sometimes punches one hand into the other. I ask him if he’s ok and he says he is fine and has no issues.

DH noticed he had put a towel over the mirror in his bathroom, he looked at his iPad and saw he sent a message saying he’s had to cover his mirror so he can’t see himself. We asked him about the towel and he said it was to prevent the mirror steaming up while he showered. He just immediately said it without even thinking, I didn’t realise he was so adept at lying to me.

Have you got or had previous support from camhs? I'd speak to your gp and see about a referral if not, I don't know much but there is a link between autism and eating disorders and his low weight won't be helping as his brain will be struggling. Not liking how food feels could be arfid. I would ask to be referred to camhs or eating disorder services for some professional input so he is getting enough nutrition, our nurses have always said to ds it's not about him gaining weight but growing, he's a young lad that needs to grow. It really helped referring to weight gain as growing.

So she's just saying she can't eat again
Doesn't want to go back to hospital but can't eat! I'm ashamed to say I lost my temper - I know I shouldn't and I know I should be encouraging and supporting her but I'm aooo tired and I just want her to get better ! I thought she was on the turn and even though I've read on here you can ping pong in and out I just feel so so awful - I've apologised and explained that it's just getting me down which isn't her fault at all I know....I just cannot believe we are here again
It's like we've come back to this nightmare and I'm not sure I can take this pain I know it's not about me
I literally was shouting at her to just eat
😭😩

Summer I'm so sorry you're back in this situation. Did the hosp give guidance on what to do in this situation? I think she really needs to be back in hospital or admitted to a unit as its obvious she only ate enough to go home and she is very poorly 😔

WoodenTrain

The mirror situation is familiar here, I often find dd's bedroom one covered and the one on the bathroom shelf turned around. It sounds like he may have some dysmorphia issues in which case talking about how he feels about himself can really help. It would be so good if you could get him to open up about the things you're seeing in his texts but obviously you don't want him to twig that you've seen them. I really found a turning point with dd was when we got it all out in the open. Now I can say to her 'you've only eaten half your breakfast, are you struggling with how you look today?' and generally we can talk it through and encourage more food.
Obviously with autism in the mix it might be harder for him to open up and talk.

As for the SH I guess you're already keeping sharps and meds safely away from him. Camhs referred my dd to the crisis team for SH and they did some sessions with her on self soothing which helped and gave me guidance on checking for signs and keeping her safe at home. It would definitely be worth asking if there's a similar service in your area if you're worried x

Oh and summer please don't beat yourself up about losing your temper and shouting. Just apologise, explain that you are frightened and give her a hug. It's an extremely difficult situation and we've all been there. Often it's after some huge shouting matches with my dd that the walls come down a bit and we have some honest communication.

It’s all very overwhelming and hard to know what to do for the best. Don’t be hard on yourself for losing your temper @summertimesadness24

DS is known to CAMHS, unfortunately his lead clinician left at Christmas but he has an appointment to see the new one on Monday. Just frustrating as he was starting to communicate with the other one. He has a support worker come to the house once a week and they go to a cafe - it’s the only time he leaves the house, doesn’t even go to school. He’s not gonna get a single GCSE but I guess that’s the least of the issues right now.

No they didn't - it was a ward where most the nurses didn't know how to deal with an ED so it makes me feel I don't want to take her back 😞
No after care advice but the clinic are calling me tomorrow so hopefully can get a plan
I was hoping she could return to school but there's no way
And then that's work to think about
Most likely won't be able to go back at this stage

Summer I hope the call goes well today. Don't be fobbed off. You need more help that you can give at home. School should be sending work home or online school should be set up. Having schooling to do is really important if she's up to it as it helps with staying in a routine which helps with eating. So many slide into the routine of missing breakfast if they've nothing to get up for.

So DD is refusing to eat 😞anything! She's in crisis here and I just feel we aren't being listened to

If I take her back to a&e and insist of getting her admitted it's not even the best option for her BUT being at home refusing to eat is the lesser of 2 evils!

The clinic are calling today so will see what they say

As for school - she can't possibly go back yet

Pretty much refused food yesterday but managed to gets a fair amount in her
7 hour total food refusal but bulked up with other stuff

Today refusing .......

@summertimesadness24 so sorry you aren't being listened to. Your DD is in crisis and you all need support.

@summertimessadness24

just catching up. If I understand it right, you just spend time as an inpatient?

if you are out and she is refusing, I would take her back. DD was admitted last year for 3 weeks as she became unwell due to restricting. We were only on a general paed ward for physical stabilisation, daily bloods etc. We were told to come back if she doesn't eat at home but hospital made sure that she managed her meal plan before they discharged us. Sounds like you were sent home too soon? Really sorry you are finding yourself in this situation so quickly after discharge.