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.

This is absolutely shocking
We were offered cake at one of our a&e visits 😳

This is interesting and very helpful ☺️
I think for my DD it's going to be some form of intervention
She isn't managing to eat in hospital 🙁

It's really scary and your dd is being so let down, I know you're probably not in the right head space atm but you should formally complain at some point. They are risking your dds life.

I hope the assessment goes well tomorrow and your dd gets the help she needs.

@lyriccat If you are interested in the Facebook group @Girliefriendlikespuppies mentioned, it's called EDSUK. They have some good resources pinned about what to say to clinicians.

@lyriccat I hope the assessment goes well

Just for info my daughter has been hospitalised recently

Her obs are always fine! But she is severely restricting her food
Her wfh is 86%, no lathe weight loss as it's always 'stable'

But most will know on here as I've had some some fab advice I've had 4 a@e visits, one admission (sent home too early) and now back in
Hospital and they agree she is poorly and needs help!

Push push push for her to be admitted

Sending hugs x

My DD is still in hospital btw and it really is the best place for her where she is being constantly monitored x

lyriccat

The EDSUK page is excellent. There's also a page called 'Parenting Mental Health' which I've found very helpful and supportive.
www.facebook.com/groups/parentingmentalhealth/

I hope the assessment goes well today and your dd is given the help she needs x

Summertimesadness24

So sorry to hear dd is pouring away her fortisip. She's so in the grip of the evil beast, poor girl. I'm glad she's being monitored regularly but surely an ng tube needs to be the next step now to prevent further decline.

@summertimesadness24

bit surprised that DD managed to pour her shake. We had very strict supervision during all meals in hospital, no toilet for 30 after meals. I don't understand how she could possibly dispose of her food that way without staff noticing. Doesn't look like the right place at all.
Has an NG tube been discussed?

Dd told me yesterday that she thinks having fillers in her face will cure her ED. I feel terrified and can't help but think about people such as Katie Price who have gone way over the top with it. I believe KP also has dysmorphia.. when you look at photos of her before surgery she was stunning.
Dd is 18 and doesn't need my permission but at the moment she doesn't have the money but keeps saying we pay for it then she'll able to eat freely.. which I very much doubt (but haven't said that to her). I have said maybe try therapy first but she's adamant the fillers will magically change how she feels about herself. Dh is aghast at it all. Dd is a beautiful looking girl and I'm terrified she's going to ruin her face permanently. I hate this illness 😔

She's just given her meals and there's no support, sometimes meals are forgotten and wrong portion size
She's on a children's ward and some staff have no idea of ED
It's very frustrating

No talk of any tube

The ward is very busy and isn't the right place for her but at home she refuses and I worry she will collapse
I've been told the ED clinics are too difficult for a bed and often far away from
Home! I'm at the point where I'm pushing for more intervention as this isn't working currently mean while ED is winning

@lyriccat i really hope the assessment goes well today.
My DD14 was admitted to an inpatient clinic in October. Her WFH was 63%. She was admitted straight away with no assessment. She would’ve been sectioned had we not have consented. We felt like our world had fallen apart. My DD hates doesn’t cope with being away from home, will not even go to friends for sleepovers. I honestly didn’t think she would cope. But……she did, amazingly. She worked really hard and was discharged home 2 weeks ago at 97% WFH. Although she is physically well, she still has a way to go mentally with body image etc. The clinic no doubt saved her life. She is far from complete recovery, but she is able to follow a meal plan without issues, and has returned back to school full time. I feel that we were in your place, only a few months ago. I didn’t think that was light at the end of the tunnel, but I’m slowly believing that there is……..

@summertimesadness24 i am so sorry to hear your story…….
From my experience, when DD was admitted onto paed ward in August, once her obs were all stable, the consultants wanted to discharge her as she was “clinically” well. Had it not been for the CED’s team, she would’ve been discharged. The CED’s team visited the ward everyday to manage meal plans etc and had authority over DD’s care. Once discharged, we were seen everyday either at home or ED clinic. The home crisis team were also on hand to offer meal support as often as necessary. Unfortunately, despite all the support, my DD was admitted into an inpatient clinic which quite honestly saved her life.

We were actually instructed to have a parent on site at all time to provide meal support for every meal and snack as hospital did not have the staff. It was non-negotiable. Was hard though as we both work, no family around and our eldest has complex special needs and needs 24/7 support when not in school. She wouldn't have eaten without us and we had to intervene a lot re getting the right meal/potion size.

Can you arrange that one of you is with her 12h per day? I don't think it works otherwise on a general paed ward. The team asked me multiple times to get signed off sick to facilitate it but we managed to muddle through by working from the ward.

Thank you for sharing
I feel this is exactly what we need
I'm sorry to hear that she was admitted again but very positive that her life was saved
X

At the moment someone is always with her
I've not worked in 3 weeks
However my DD isn't eating at all despite me being there
In fact it's worse - she just feels I'm nagging even though I'm encouraging
She's just relying on fortini and hasn't eaten since she was admitted Friday
Complete refusal at home
This has been going on for weeks
She says she won't eat again

oh summer did not realise it was that hard. We had the option of meal, if no meal then the fortini and if no fortini, it would have been the Ng tube. Where is your ED team in this whole scenario?

Summertime has she been assessed by an ED psychiatrist? If not or if it was a while ago then I would be asking for one asap and keep asking until you get it. Whilst the ward can monitor her physically it sounds like there is little else they can offer for AN. We’ve had some well meaning doctors say some really triggering things which have only served to strengthen the ED. So sorry it is this hard for you both.
Bagpuss this is so sad. So many beautiful girls struggling. I really hope she tries therapy first. But is there therapy for body dysmorphia? I’ve been told it should resolve as DD recovers?

They don't seem to be in tune with the hospital staff
It's chaotic
But both me and my husband have emailed in again stressing our concerns and it sounds like they are putting plans in place for more support
It's a headache nightmare

No we haven't had any of that at all
Just daily doctors that in fact trigger her ! So frustrating

@summertimesadness24 Your poor DD. And poor you. She sounds so poorly. At her worst, mine was also saying crazy stuff like she had worked so hard to get her food intake down and just when she was almost at zero we had spoiled things by taking her to hospital. Inpatient should be a last resort but sometimes you need that last resort. I regret not pushing for it earlier as it did turn my DD around - saved her life really - but not until she'd missed two years of school and lots of her teenage life. N.B. She is currently eat home, eating well, and is on sixth form work experience this week and loving it. Still gets all the anorexic thoughts but is strong enough to fight them and is living her life. Starting with the Adult service at the end of the month where she'll be taking courses on body image and on overcoming trauma. So there IS hope. Hang on in there! Recovery is possible

The posts around those of you who are currently struggling to get ED support for your YP are breaking my heart. What can we do to lobby for better care? We had horrendous experiences with CAHMs (therapist ignoring all signs of ED and insisting 'everyone has a different take on ideal weight' when I worried about DD being skeletal) I dream of running into her and telling her about our horrific journey towards health again. It took one brilliant G.P for us to save DDs life and I very much hope you can find that one person who will listen to you and treat it with the seriousness it warrants.

I wanted to add we couldn't have managed without external help. It took months of physical self harming and DD saying she would rather die than eat but as I mentioned recently she is now thinking about universities having not believed she would make it (in all senses of the word)

My DD is also self harming and i do believe her intention is to die. Although she's never said it. She's a shell of a girl she used to be
I feel like screaming and no one is listening......