Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Temporarymember : My DD gets PIP. We found a letter from her ED team very helpful. It was also very important to emphasize the additional time needed to support her to eat. (If you'd like to DM me, I'd be happy to talk about the application process with you.). If she is away at uni (rather than at home), that might be a bit harder to prove. Has your DD ever been sectioned? If so, then Section 117 payments might be more appropriate: they are supposed to pay for services if there is a gap in provision, e.g. specialist counselling if she isn't access appropriate support at the uni. Good luck.

So, after 8 hospital admissions for medical stabilisation, 9 months as a patient in an ED unit (which she absconded from twice), DD was provisionally discharged from her ED unit yesterday. If she continues to gain weight over the next week, she will be discharged completely from the unit next Friday. She went out with a friend today, is starting back at school full-time on Monday, and has eaten well without prompting. I'm so happy I could cry (have done several times in fact). Recovery is ALWAYS possible. Hang on in there, warriors. And thanks for all your support.

@NanFlanders I am so happy for you (and her)!

@NanFlanders am actually tearing up. So happy for you all - how is her brother doing? Sending so much love!

Temporarymember

I claimed PIP for my dd (I became her appointee) 4 months ago and still don't have an answer so it would be a good idea to call the PIP claimline ASAP and start a claim as it gets backdated. It can take many months to be awarded, more if you need to go to appeal.

There are many resources online to help with filling the form. I found benefitsandwork.co.uk helpful. Pay a small subscription and you get access to files with sample filled forms.

Look carefully at the questions and consider everything your dd needs help with to keep her safe and well. You may find she actually scores more points than you think. Keeping a diary can help.

Consider anything that a 'normal' teen of her age wouldn't need help with. Once I took on that mindset I realised just how much my dd's illness affects her.

Go through each section and write down how she struggles with the activities and what help she needs. It doesn't have to affect her every day but must be most of the time. ie more than 50% of the time.

You can either become her appointee and apply for her. Or you can fill the form on her behalf and get her to sign it. Or your dd can just apply for herself. But if she's anything like my dd she may downplay how her illness affects her.

NanFlanders Amazing news. I'm so happy for you and your dd! Xx

Nan that's amazing! 2024 will be your year 💗

Thank you for replying regarding the PIP. I suppose we should just apply now and see what happens.

Will look at the recommend website.

It is encouraging to read all the experience of recovery, myrtleWilson, Lottsbiffandsmudge NanFlanders.
Just worried about her disappearing to uni and relapsing. In fact in a way dreading when camhs are going to discharge her...

@NanFlanders this is great news.

@NanFlanders I am so happy for you. Feels like yesterday that you posted here when things were so unimaginably difficult at your end. It really fills me with hope that there is light at the end. Amazing news!

@Temporarymember I don't know what it is like in your area, but my dd has been transferred very well to adult services, which have picked up in a similar way to the ED/CAMHS services, I think it's a trial in our area of doing a better job of transitioning and not just abandoning them at 18. They do the same health checks, support workers and see a psychiatrist (if needed). We did have some confusion over whether the GP would do the health checks, our GP practice refuses to do them (!) so we go to the hospital once a month unless there is a need, which there sometimes is, to go more frequently.

I was dreading being abandoned by the system, or what would happen over 18, as my dd started this journey later than many on here, but it's not been as bad as I feared. Of course, what I would love is for her not to have these issues and fully recover, but she's bulimic and not anorexic and she doesn't seem to be shifting her patterns as much as we all hoped at one point, they have definitely returned although her weight is stable and higher than would attract attention in adult services if she came in from outside.

Oh wow Nan, that is great to hear. Well done to all of you for keeping hope when things were so bad. I joined this group when your DD was missing and could not believe what I was reading and wondered how you could keep going. But you did and I am so happy to read your update. At one point you wrote that a new circle of hell had opened, this phrase has stayed with me but now it can sit along side Recovery is ALWAYS possible. Wishing you the very best for 2024. X

Oh @NanFlanders I am so happy to hear that! I remember last summer when I was first posting on here how desperately difficult things were for you and your DD. It's wonderful to hear how much progress shes made!

@Temporarymember we were really anxious about transition to adults and were vocal about it with CAMHS - we had a parallel adults in CAMHS transition for 6-8 weeks following her 18th birthday and in lots of ways the 'therapeutic' input at that point was better than our experience in CAMHS had been. However, we didn't have a university move on the horizon so we had a 'home' safety net.
There is a network of locality based ED support providers - I know our regional one is 16 plus and they are particularly upping their involvement with universities - I'll try to find a link or if you're happy to share which region your DD's university is in then I can ask a colleague who works in this field. I know her not being at home will be an added anxiety but perhaps if you're able to connect with these charity led services that may give you some reassurance in addition to student welfare?

Miraculously found the link quicker than anticipated (peri menopause brain is obviously having a good day!!)

https://www.redcan.org.uk/

Oh that looks good. Just need something she can have some support from. Stop her from sliding down again.
Thank you very much for that link.
(Not entirely sure where she is going to, still waiting for some response from 2 unis)

Is underdressing an AN thing?

I noticed recently that (more with the cold weather), DD doesn't layer up as she usually wood, coat wide open, no hat even when it's around zero. Just wondered if the idea of maybe burning extra cals when one is cold is fuelling that? Or maybe I am overthinking.

@Curlyhairedassasin - Yes. It could certainly be an ED thing. Also cold showers 😞

Hi all

I'm fairly new here and have posted a couple of times

My daughter's eating seems to be getting worse. Went to GP oct 23 and as they didn't actually refer us it wasn't until I called my GP in the new year so say she really needs help it came to light no referral was sent - anyway I've had a call from the eating disorder people and have 'triaged' us and are having a MDT and calling back Wednesday with a plan of action

My daughter is 12
She just doesn't get hungry and only eats when I ' force her' it's awful
She seems to be suffering with friendships at school since being on year 8 and has stated self harming so I'm also dealing with that

She's 41kg, 5ft 3 and looks painfully thin
She doesn't seem happy in herself and I'm unsure some days if she's telling me the truth how she's feeling
I used to think we have a lovely open lmotyer daughter relationship but I know she hides a lot from me

I'm telling her I love her, proud her her and I'll do everything I can to help her even though I don't understand it fully myself

Nice to be here and feel like there's some support as I feel very alone
I have a very supportive husband and family but I/we are all very new to this x

@Lottsbiffandsmudge Thank you so much for helping out so many people. Wishing you all the best for an ED-free future x

Hi @keepfaith22, my DD is 11 and I could have written your post. We were referred to ED clinic in September but it’s an uphill battle. Currently discharged from them but nothings changed. Start a food & mood diary if you haven’t already and note down any comments/remarks. Scrutinise any social media she has and screen shot if necessary.

My DD has also been refusing to layer, so going outside in a thin jumper/trousers and if I can make her wear a coat it’s wide open. Just cried her way through another dinner she barely touched and is trying to put herself on the ‘messed up girl pedestal’ in her class/school WhatsApp.

Hi @keepfaith22 have the MDT had new observations from your DD? If not, my recommendation would be to insist that GP/ED team do new obs before they meet - you don't want to be in a position where they are meeting with obs which are way out of date.. You may have to ring the CAMHS team to organise this though.

It is so bleak at this stage, but hopefully a well informed intervention at this age can make all the difference.

Do use the board for questions and rants...

@Curlyhairedassasin how are things going? Have you had the weigh in yet?

@GrannyRoberts It's not plain sailing but no other bite of knife attacks. But her mood is foul. Weigh in tomorrow! We only started the milk about 2 weeks ago so this may take some time. I hope we gained a tiny bit 🤞