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

I'm welling up at your update NanFlanders
I'm chuffed to hear how well your girl is doing. Particularly hearing that she's spending time with her dad as we're making progress there too and it's amazing to witness. Also lovely to hear she's spending time with your ds. We lose so much through this illness that getting normality back is like Christmas and birthdays all coming at once ❤️

Nan I am so happy to read your update. What a turn around
She seems to really have chosen recovery. And be all in.
Long may it continue.

nan fantastic update!

We are ticking a long. DD is back in school full time and loving it but we are stuck on 90% WFH and no gain in a long while. We have agreed this week to put the foot down and introduce fats such as butter again. It's been a bit of a disaster with the ED rearing it's ugly head again as we challenge it. quite a bit of violence and kicking off but I was prepared. I had been going along with DD for a while as I had run out of steam and needed a bit of a break (and I was stupidly hoping it would get better without too much intervention). I am expecting a few hard weeks/months... will see.

@nan that is beautiful to hear

@mira your trip is much shorter than the one our DD was booked for earlier this year (8 days) Might help you to know our Case Worker suggested her only doing part of it, though travelling out and staying nearby for part of it, but in the end we pulled her out. It was just too much of an unknown as every day was and is still so variable here on her mood. We lost the money but I think for her it was all too risky. It was a huge stress for DH and I for months going backwards and forwards around making the call so I do understand your anguish but if you do have to cancel you will be doing it out of care

Thanks for this. I think for our ds the problems are more around the ocd/anxiety rather than the eating.

The last school trip he went on in Feb was in England & he was fine during the day, although we had some teary phone calls in the evenings.

He will almost certainly go, and I'll just have to take a deep breath & try not to check my phone too often.

He's speaking to a dietician from the ED clinic tomorrow so that's a start.

Lovely to hear the positive news x

That is great news Nan. Delighted for your family.

@Girliefriendlikespuppies Bagpuss makes a very good point about wanting to know some background if she was taking a young person on holiday with a MH issue. Thinking about what she says, I would definitely want to know too.

@NanFlanders so happy to read your update! Thinking back to where you were just a few weeks ago that is just brilliant to hear and has really given me a spring in my step!

@lexilou985 my DD11 is currently an inpatient. She was admitted at 75% WFH. They didn't consider home passes at all until she was at least 85% and complying with the meal plan consistently. In her case that took about 8 weeks. She's now having weekend passes and at 92% WFH and we have a discharge planning meeting next week. We visit every day. It was important to us that we do that, but it's really exhausting. Without a doubt going into the unit has been the best thing for my DD, she was too far gone mentally for us to turn things around. It's been very tough on us all though and the early days in particular were awful as we all adjusted. We're at a point now where I feel the ward environment is no longer conducive to her recovery, and her care team do agree she would be better at home at this stage. I would say if your DD does lose more weight and have to go inpatient be prepared that it won't be an easy ride but could quite possibly save her life. Happy to share my experience if you want to ask anything but I'm in no way an expert.

@GrannyRoberts Sounds like loads of progress for your DD too!

@Curlyhairedassasin yes, she is making progress. Still a lot of work to do, and a lot of anxiety around food but she's in a better place overall, physically of course but has also gained some insight I think which I really hope will help avoid the dire situation we got into before. We're all nervous about discharge but really hoping we're better equipped this time. I think the benefits of being on the ward have now plateaued, there are some new patients who are very ill and distressed and she's finding that difficult, and it's so noisy she's barely sleeping. She has also been put in a shared room and is finding the lack of a private space hard. So I do think home is the better place for her now, but am still really scared that we might slide backwards again.

@GrannyRoberts I found DD found the time in hospital so unpleasant, she really does not want to go back there. Not sure how much of a long term deterrent it is (I don't think AN works that way in any way). It was very scary having her home initially and in a way, the first weeks were more stressful for us than her being in but we found our feet. Will DD be allowed to return to school and go full time?

@Curlyhairedassasin she had her first morning at school today (came home for lunch) and it seemed to go well. I think when she is discharged it will build up gradually starting with mornings only, and we'll keep under review. I would definitely agree that for the first, I'd say 6 weeks, my DD was desperate to get home, but now she's actually a bit torn. Hospital is a safe predictable place and the thought of leaving is scary for her, but we and the clinical team think she's ready. She's actually becoming a bit institutionalised with the very strict routines and we all think she needs to be back in "normal" family life sooner rather than later. In my optimistic moments I think that the early "wanting to leave" behaviour was her ED wanting to take back the control hospital had taken away and the fact that she's now torn is an indication that she doesn't want to go backwards in her recovery. In my less optimistic moments I think we must be terrible parents if our own DD doesn't want to come home to us. But I give my head a wobble and carry on.
I hope your renewed resolve with your DD pays off. It is absolutely not surprising that you felt the need to ease off a little, I don't know how anyone can keep us this relentless fight day in day out.

Nan, that is so lovely to hear your update. It's so fascinating to hear how your dd has made the decision to go for it, and she's doing it! ** Gosh that gives me hope for the future.

And Granny it sounds like things are going really well too for your dd, and it completely makes sense that coming out of inpatient would be daunting to her now that she is in a different place in terms of recovering. I'm constantly amazed at the sheer power Eds wield, and how much determination is needed to overcome them, but also the fact that it's possible!!

I'm sick of it all again today. I feel like the kind of life I thought I'd have now, and was just getting to - career in a brilliant but challenging place, kids grown a bit and more independent, chances for holidays and more opportunities for fun both as a family but also as a couple with DH, is all evaporated! We were supposed to be going to New York for a celebration holiday in a few weeks as a family, but of course it's impossible at the moment, so it's cancelled.

I'm back to work half days this week, and it has been good, but I've ended the week feeling really frustrated that I've achieved almost nothing. And I stupidly tried to have a conversation with dd about how she is feeling. Even though she seems a bit better, is managing to get back to school, seeing her friends, sleeping and just looking better, she says she feels worse than when she was able to starve herself, and that time when she was able to do it was great because she felt "really happy". I 'know' this isn't true, and I 'know' recovery is possible, but I just don't feel it. Feel beaten by this 😢

Thanks for your thoughts on the holiday, it's useful to get some other perspectives, I'm torn between thinking this could be a great opportunity for her to show how far she's come in independence and worrying that it's too much too soon.

They're both 17 so young for a weeks holiday together I think.

Have said I'll think on it over the wend...

Nan that is a wonderful update, I'm so happy for you.

@Curlyhairedassasin well done for getting up again. I feel like the 'here we go again' aspect of EDs flattens me too at times.
I've just had a week where I thought about driving myself to a and e and telling them I'm broken so I could get away from all this mess. Somehow by the end of the week I've shifted again to face another day.
Someone mentioned sibling issues and my younger DD is extremely down (refusing any intervention) but who can blame her. We have lost all semblance of normal life. She doesn't want friends over, we can't throw parties/host like we used to. We all have PTSD after our attempts at a holiday this year and Christmas feels plain scary.
It's all just v v hard. I was on the verge of asking my GP for medication but my thinking is of course I am miserable w 2 DDs who are struggling. I am trying to carve out more time for myself since my 'crash' to just take a minute instead and that did seem to make a difference for me

greydoor my dd acted like she was really happy at her thinnest but lately she's been opening up and told me she was actually very miserable and has blocked a lot of memories from that time. So sorry to hear things are really bleak for you all right now. ReineDeSaba so sorry its so hard for you as well. A lot of us have taken medication to help us cope. Make sure you take that time for yourself as it's absolutely vital.

@ReineDeSaba really sorry it is so hard at your end. Maybe worth speaking to the GP in any case even if you are not sure about meds? It sounds like you are really affected by it.

Project 'butter' is proving difficult. I have been hit, kicked, shouted at, spat at and been told to kill myself. On Friday, she binned her school sandwiches (with butter). She has meal support in school and the teacher rang me regarding the missing bread. that's how I know.

She is starting to accept small amounts of butter now though. Much more than a few weeks ago. Baby steps but into the right direction I guess.

I notice I am insanely jealous of my friends with 'normal' kids and normal lives. It's not healthy but I cannot help it :-(

You're right I should probably book something in w the gp @Curlyhairedassasin ...need to start walking the walk instead of just talking the talk around my own oxygen mask etc etc.
I'm so sorry to hear what you're facing on project butter. I'm not surprised you feel jealous...I would love to have some "ordinary ' teenage struggles for a bit rather than the fear and pain and loss that comes with my DDs ED. It feels lonely to be outside the 'normal' experience

Hi all, it's so nice to read some positive stories, it gives me hope and I really hope most of you are on your way out of this dark tunnel.
We're still very much up & down, finally ed team will see ds next week and give food support - new calorie sufficient meal plan on it's way! They feel it's arfid and due to extreme malnutrition he's tipped into an but they're scared to label him this young. Either way the treatment is the same. He's gained about 400g too. He's very emotional at the moment and wishes this would all go away, I lost it tonight and I'm so ashamed of myself. We were baking but whilst cutting out the shapes they weren't quite what he wanted, normally he'd just redo it but he broke down in tears saying he gives up and it's all too much (on reflection it's everything that's going on not just the stupid cake cutter) I offered to help and he told me to shut up and go away as I make everything worse. I just lost it and called him a selfish, ungrateful sod. He's 10 poor kid, his little face 😭 we've made up now and he understands I'm so so tired and jealous of our old life and I also hate happy families right now which i know is childish. We have cancelled our half term holiday and I just can't believe we are here. I just feel so lonely, lost and desperate

Curly is she any better if she can't see the butter? My dd is better if the butter is melted into the bread for example.

So have agreed dd can go on holiday with her bf 😬 no idea if it's a good idea or not but I feel like I've got to give her the opportunity to prove she can be away from me.

She's still up and down with eating, lunch remains the biggest sticking point as she definitely doesn't eat enough then but I probably need to relax a bit as she does really well with dinner and pudding 🫤

girlie, no it doesn't make any difference as she knows the butter is in. We manage to butter 2 toasts now with a decent amount of butter. Guess it is just a case case of building it up. 1 week ago we were butter-free.

Hope DD's holiday works, girlie. It's only a week. I think sometimes we just have to test the waters a bit. Could you reframe it as a week of meal support respite for yourself?

Curly I'm definitely reframing it as that 🙈😂 I've not had a break from dealing with the ED for more than a night or two in three and a half years!!!

Coukd anyone tell.me where to find a weight for height calculator please? ED service won't take my daughter as hers is too high.

I'm not thriving today 😞. The mental load is killing me and everyone else including DD seem to think the positives are so good.... But I see all the ED behaviours and everything she is trying to cover up, and it's still SO far from normal. On the surface she's living a fairly OK teen life, but it's all being stage managed by me and her. I haven't got the strength to fight this anymore.

I've felt the same all weekend, really feel like getting in the car and just driving anywhere but here. Every meal and every snack has been such a fight as soon as it's over my lovely boy returns full of remorse. I've no advice I'm afraid but you're not alone, each day is us winning and getting our children their lives back.
@Catsback I found one on nhs website there was a calculator to work it out, I'll look for a link