Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

Also will they let her out if she engages and can show them she’s eating? She will google straight away and feel like she’s been sent to prison. If I can tell her it’s essentially within her control that will help.
She will want to appeal but if I can say there’s no fixed time just when she’s better that will also help (assuming that’s true).
is there an average time?
Will they continue her Meds as she has been prescribed by Sfeds?
Will her Sfeds and Camhs team here still have involvement/oversight?
thanks again

@perrymason She was in the Priory, Altrincham for 9.5 months. That is longer than average. We were about an hour away but some parents whrt much further. Visitors were allowed every day at any time that wasn't school or meal times. Compliance with meals gains more time out. The staff were all kind and the girls seemed very supportive to each other - sending encouraging notes etc. DD made good friends there and is meeting up with some of them for a Gracie Abrams concert this weekend. Not everything was perfect - all the kids hated it (my DD absconded twice - long story!) but then they were being forced to do the thing they most feared. There were trips out - bowling etc. Not as much therapy as I'd have liked. But it was what my DD needed at the time. She is doing really well now and I'm massively proud of her.

My DD always refused meds, but most of the others were on olanzapine and SSRIs. After discharge DD did start sertraline which was a game changer in terms of her long standing depression.

DD's community team as well as her school and us and DD were involved in her monthly mulit-agency discussions.

The ward was a locked ward, but DD was allowed out for increasing lengths of time, then overnights and finally 4 or 5 nights at a time. I'm not going to lie - it was heartbreaking. DD was restrained fairly frequently at the time and she often sent DH and I home when we went to visit because she was so angry, but I don't think she'd be where she is today (eating healthily, strong family relationships, good friends, offer to study psychology at uni in October) without the stay in the Priory.

Thank you that’s the best I could hope for right now so that is giving me some hope. But also thanks for honesty, I know we are in for a horrible long haul.

Thank you so much I have screenshot so you can delete

My daughter was in a general adolescent unit not an EDU.

She was sectioned and so she had to go in an from our local hospital. I went with her. The ng tube was removed before she was transferred but nobody told her that in advance. I’ll don’t know if that’s usual.

i visited most days (it was 40 minutes away). i could take her out for short periods after the first week as she was eating the meal plan. She came home for part of the day and then overnight within a month. However she was eating to come home, When she was discharged, she immediately stopped eating and was readmitted. At some points during that admission, I stayed in a flat in the unit with her when she couldn’t come home. Many people travelled much further and would stay in local hotels when they visited. They claimed the cost back. Admin staff were very helpful with families.

Medical monitoring was daily. The community team visited her or had teams meetings. They attended every review meeting.
I won’t lie, it was hideous for her and us. She didn’t want friends to visit and I dissuaded elderly grandparents as it was distressing for them. Her siblings visited when they were home. The dog was very welcome,
Although she was discharged after a year worse than when she went in on many respects, I saw a lot of children do well.

Thank you @Shedqueen I appreciate your reply - would you mind telling me where she was?

@perrymason she was in wales

For anyone following this thread, please consider neurodivergence with your child. In girls the link between neurodivergence and ed’ s is quite strong. The fallout for us at the moment is heavily driven by possible asd or adhd behaviours . I’m utterly utterly exhausted by it all and I’ve only been fighting the ED monster since October 2023.

@Cantfindthewordsddstruggling neuro divergence is making it so hard for our DD to recover. Black and white thinking, rigidity and a degree of demand avoidance are all making recovery painfully slow.
@LondonBridgeisfalling our DD is 21 and became seriously unwell two years ago. But she says that she was struggling for about three years prior to that. Was diagnosed with anxiety and depression and then ADHD about four years ago. She restricted gradually for years initially becoming vegetarian and then vegan. Eventually the weight started to fall off at an alarming rate and it was only a very real possibility that she would be admitted to hospital that got her eating again. However, she did need intensive treatment in a day unit for about a year. And still attends as an out patient. Recovery for her has been very slow but steady but we are not there yet.
@perrymason I remember a psychiatrist telling me that not everybody can recover at home. It is so hard to be in the position of not being able to feed your own child-the most basic thing a Mum can do. But that’ psychiatrist was right, my daughter has since told me that there was nothing we could have done at home that would have got her eating again. She says she almost blacked out at the unit when they first fed her. To be honest, knowing that my daughter was with specialists all day long was such a relief to me I knew that she would be safe and I could hand some of the worry over to them.
I think that units are getting better now around ND , but I do know that I had to fight for them to take her sensory issues seriously. Even with an ADHD diagnosis, they put a lot of her behaviours down to the eating disorder when in fact they had been present long before. iIt was hard to convince them of this, but I think it was vitally important because she needed to be heard and understood.

While your DD is in hospital, I would recommend doing some of the Jenny Langley workshops (see the Charlie Waller Trust for details). They were a lifesaver for me. I would also get a copy of the Janet treasure book-skills based caring for a loved one with an eating disorder. The unit may also have a carer support group. Initially, I was reluctant to join but I am glad I did as they go through a lot of of the Janet treasure book but it also helps to talk to others in the same situation. Mostly the parents in the support group are parents of very complex cases. Even though my daughter’s anorexia is deeply entrenched I do believe that she will fully recover or at least sufficiently to live a perfectly normal life but I have come to realise that it is going to be a long journey for us.
For anybody reading this, please don’t lose hope - recovery is possible. There are lots of posters on this thread whose DC are mostly recovered and living a full life.

Help. DD woke up hysterical. refusing breakfast and says she will never eat again. What do I do. She is crying and screaming. We haven't had this since her admission 2 years ago.

With our NT DD17 it was a case of ‘if you don’t eat your breakfast you won’t have your phone/go to school/see your friends, and I will sit here until you eat it.’ DH and I would swap in and out. We would also do wordle/crossword while we waited.

I had it firmly in my mind that the ED was a deadly parasite that I needed to feed to death or it would kill DD so that gave me the strength to enforce the SLAM feeding plan.

i realise that you have been battling this for years @Curlyhairedassasin and you’ve probably done all of this already, but thought it might be of interest to others at a different stage.

@TempersFuggit she doesn't have friends to see. She has been out of school for half a year and is only doing a few h in a PRU. she says she will never eat again. She gets incredibly violent if you get close to her. we have no bargaining power. Nada. Zero.

Sometimes I find i have to let a meal go and try again next time. keeping calm as kind is what I aim for although often don’t manage it. My daughter hasn’t had breakfast for three weeks though so I’m not a great model for success.

If she doesn’t eat, then get on to caseworker and insist they see her urgently. Has anything changed for her or could it be a very bad morning? Sending best wishes

I think it is best to try to talk to her and not worry too much about missing this one neal. Ideally she’ll have it later. Try to stay calm and get to what made her hysterical. If she’s anything like my DD she needs to be heard and whatever it is that is worrying her is the more important thing. Hopefully, she’ll eat later on

She hasn’t got control over much now by the sounds of things. Learning which is so important to her is up in the air and she doesn’t have friends so she must be feeling desperate. Restriction is her way of having some control or maybe it is a way to numb her emotions. I think, if you can get her to talk to you, she will eat but you can’t tell her to eat. At least that’s how it is with my DD. X

@Curlyhairedassasin
Oh bless you. Your poor dd. You say you have no leverage. The only one I can see is the threat to take your dd to A&E. I’m months great at the Jenny Langley / Charlie Waller trust type language. My approach would be to write down something like this, rehearse then talk to my dd: “Dd it’s so comforting to be safe at home in your warm bed (or whatever she likes to do), let’s sit and do x activity together. The thing is I am going to need to take you to hospital tomorrow if you don’t eat today because it’s important to eat to get strong and healthy because I love you and because you want to be able to do x fun stuff. I really don’t want to have to take you there because you found it overwhelming last time we all want you home with all your familiar things. So I’d like you to eat your breakfast and once you’ve done that you’ll be free to do x thing that takes energy and she likes doing.”

I’m sorry Curly I can’t remember how much you’re working atm. I’m just wondering if there are any home schooling groups you could join or anything. I appreciate your dd isn’t being home schooled. But maybe they wouldn’t mind under the circumstances. Just thinking about how you get her out of her shell a little.

@CurlyhairedassasinSo sorry to hear this. What are her obs like?. If she doesn't eat today, I'd take her to A&E tomorrow. And don't be afraid to escalate - we kept called CAMHS emergency helpline when our DD didn't eat and felt they were discouraging us from calling an ambulance - when we finally persuaded her to come with us after 5 days, the team were very clear that we SHOULD have called an ambulance as she was very very ill by then. Thinking of you xxx

I love Mummy’s script. The way we communicate with our AN kids is so important. I don’t understand why it’s not taught on the first contact with ED services.
Curly, i hope you and DD are ok. If you haven’t done so already, maybe tell her that you know how hard this is for her. Validate how she is feeling.

I decided to take her to a&e. She is adamant she will never eat again. We have been there and there is no point waiting as she just won't change her mind.

We have been dealing with this shit so long and making no progress. It's going all backwards if anything... I really want her admitted to an ED unit. What is the best way to get that sorted? We are not winning that at home. I think she wants that herself.

Remind her how far she's come @Curlyhairedassasin and how hard she has worked and the importance of not going backwards. We look to the future. I used to get the laptop out and we'd look at nice holidays whilst eating, (really expensive ones that we can't afford) and discuss swinging in the hammock or lying on the beach you can also google map and land on the road or beach and look around it was a good distraction over those dark winter months.
I need to catch up properly and I see lots of new names but for now hello everyone 😊

@Curlyhairedassasin We were advised to repeatedly say "We cannot keep her safe at home.". Make it clear you disagree with any decision to discharge - and ask who is taking responsibility for any decision to discharge 'in case the worst should happen'. Write down the answer. Bear in mind that results from EDUs are mixed to say the least, but it worked for our DD. Wishing you all the best.