Thank you myrtleWilson

Thanks Myrtle signing in.

Thank you @myrtleWilson

@lovewinter I am so sorry to hear abuut you DDs what a nightmare for everyone. I am sending you virtual hugs
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@lovewinter sending hugs

Thanks @myrtleWilson (and thanks for the offer of coffee!) @lovewinter So sorry to hear about all three of your daughters. I can't even imagine.

Hi everyone. I'm here too. @lovewinter - I can't begin to imagine how you are managing. Keep going - they will all thank you in time xx

@nan - also - huge sympathy. I hope things are calming down now. It's such a horrible illness. X

Thank you @myrtleWilson and to add my voice to everyone else's, so sorry for what you're going through love

thank you

Thank you all for your kind wishes, and sending hugs and strength @NanFlanders hope things have improved?

Things are slightly better for us, an amazing trainee psychologist from CAMHS spoke to my eldest after not eating anything for 72 hours and having to be restrained after running away. I was blown away by this young nurse she was incredible, she clearly had taken the time to read through Ds notes and spoke to her about why is she suddenly giving up after doing so well (she had made vast progress over Christmas) she spoke for 90 mins with my D, I don't know what they spoke about other than the summary they gave me together at the end but basically stemmed about why it is not worth striving to be ill and undo all the hard work just because of her sister's diagnosis and what would happen if her sister recovered before her, what is she waiting, why to waste your life for sort of thing, obviously not in those words! but whatever she said it worked! she is back to trying really hard and is cooperating, unfortunately, seems to have returned to hyper metabolic again, with little to no weight gain, but her vitals are improving, hopefully, heart rate permitting coming home tomorrow.

my youngest on the other hand is in complete denial anything is wrong and we are all deluded and trying to make her fat and miserable. She is eating around 800 calories a day in the children's ward, but because she is eating they are not giving her an NG tube, she isn't stupid ! she has worked out that this is the minimum she can eat, and she knows if she eats less she will get more calories in a supplement or NG tube, but because she is eating they don't seem to care its mad to me. My other youngest is thankfully recovering well and actually now enjoying all the lazy days. However, while I'm not worried about her developing an eating disorder she is clearly struggling with her twin's diagnosis I think largely around the secrecy of the illness as they never keep secrets from each other and also guilt from not stopping it. Thankfully she is great at talking to me so hopefully, I can help her navigate this too.

@lovewinter Glad to hear there has been progress for two of your DDs. Hope you soon see an improvement in your youngest. Thanks to you and @SwattyPie for asking - DD is struggling unfortunately. She hasn't eaten anything since 5th Jan and has recently been struggling with fluids too. She is being fed under restraint twice a day, as she pulls the tube out otherwise, and has had some fluids intravenously. All very distressing for the poor kid who becomes very upset. The positive is she looks much better with some nutrition inside her. I can only hope this will help her think more clearly soon.

By 'fed', I mean tube- fed obviously.

Oh nan how hard for you. At least you can see some improvement with nutrition <fingers crossed it will help her mental state >

Love I was wondering how you were doing, great news re your eldest, hopefully the stronger she becomes the more resilient she will be to triggers. I'm sorry that you're starting again with your youngest though 🙁 I suppose at least you now know so much more about this illness and what you need to do (it's completely shit and unfair though!)

Glad your middle dd is making a good recovery bless her and your poor youngest dds twin, it just be so stressful for her.

(I hope I've got all your dds in the right order there?!)

You must have a few more grey hairs after the last week love and Nan I hope you've managed to find a few mins to do something for you? Even if it's just getting a coffee!

Nan that all sounds horrible but I suppose it's a double edged sword in that at least dd is getting the nutrition she needs. I really hope it helps with her mental state, in theory it definitely should!

I hope it’s Ok to join this supportive thread. My DD has been struggling with anorexia for 3 years and is currently at uni. Every term she comes home in a poor physical condition, we work very hard during the holidays to reintroduce a meal plan which enables her to return to uni at a reasonable weight, and then, she proceeds to lose it all again during the term and so it goes on.
This time, a week in, she is very upset and is about to capitulate to the vicious ED voice as her weight has continued to increase and hit a fear threshold even though she has been considerably more active than she was at home and was hoping it would stay stable.
I would some effective therapy but our experience has not been good: CAMHS was hopeless for us - patchy and left her when she turned 18. Private therapists have not helped at all. Her uni have been informed but never check in on her. It just feels never-ending and an exhausting cycle that will bring us all down! Her siblings have been hugely impacted.
I’m just wondering if there is any guidance on how to deal with the hurdle of achieving weight gain & pushing through, rather than freaking out and going back to square 1? Any tips for ignoring extreme body dysmorphic thoughts: I’m fat. My stomach is bigger than anyone’s. I need to slice it off, not go out, not see anyone when I look this disgusting, not eat, exercise more etc etc.
Sorry for negative and rambling first post!

Hi @Wintersea01. Welcome - though sorry you find yourself here. That does sound tough. My DD's team have told me they liaise with university health centres to provide ongoing support until the age of 19 and a half, if necessary. Is your DD's uni health centre (as opposed to just university admin) aware of the issue? Could she be persuaded to go? AFAIK, all universities should have counselling services, and, if the issue is too serious/specialised for them, they should be able to refer on. Or, if she does well with FBT (which it sounds like she does), is there a uni within commuting distance of home that she could transfer to?

Winter Tabitha Farrah has written a book called Fear of weight gain which I'd recommend to your dd. She has written a few other books and talks a lot about how to rewire the neural pathway's in the brain. For older teens I think she's very good.

hello,
I have been reading these threads on and off for a while, but haven’t posted before. I might post about our situation in more detail at some point, although not sure I want to dwell on it any more than I do anyway tbh.

In the meantime I just wanted to ask quickly if anyone here could work out my DD’s weight for height (and explain to me what exactly it represents)? She has been under an eating disorder service for 2 years ish, sees a paediatrician monthly etc and I have heard vague mutterings about it from various professionals but don’t think we’ve ever been expressly told. She is 17 and 3 months, 168cm (5’6” ish) and was 37.5kg when weighed yesterday.

I feel a bit bad just dropping in - please know I feel utmost solidarity with all of you dealing with this illness’s intrusion into yours and your DC lives, and sending strength to everyone struggling, god knows we could use it.

Thanks so much for your helpful responses Nan, myrtle and girlie. It’s very generous of you to give your thoughts when you are also dealing with so much.
She’s keen to be independent and likes her uni so we wouldn’t be able to persuade her to transfer - not yet anyway. I will try to probe further into the uni counselling/referring set up. She has had dealings with MH team but it’s very much a casual “their door is open policy” and it’s she who has to go in. It’s easy not to.
I will investigate Orri. We looked into that a while ago but they wanted her to come into their centre which was impractical and she bridled against the intensive nature of the treatment with it being most weekdays. I will see what the online programme is.
Tabitha’s book sounds spot on. I will get onto that.
Thank you 🙏

Hi the only person on this thread that works out wfh (that I'm aware of) is @Lougle who pops in every now and then.

It sounds like your dds is going to be very low though at that weight, feel free to use the thread however you want/need to, we're a friendly bunch.

You might get a quicker answer on the wfh on the fb group EDSUK.

Wfh represents what the average baseline weight for height is for a child on the 50th per centile. If your child is 100% wfh they would be on the 50th pc line.

As a general rule of thumb less than 80% is when professionals get twitchy and start talking about bedrest, no school or college.

80-90% they will not be allowed to do any exercise but maybe allowed to go to school/college.

It does depend massively on lots of other factors though, not least being if your child has always sat on a low weight pc line or a higher one. It's worth checking your dds red book to see where she tracked as a young child.

For example my dd always sat on the 75th pc line so we have needed to aim higher than 100% wfh. Others on the thread have children that have always tracked lower so aim slightly lower.

Generally the advice is to push your child over where they would usually sit by 10% or more to allow for full brain and body recovery and to start to see an improvement in ED thoughts and behaviours.

I’m not near a computer but twiddling with the Nhs bmi calculator, I think that 100% wfh for someone born on 15/10/2005 with a height of 168 would be 59.4kg. Which makes your DD 63% wfh.

I hope I’ve got that right. It feels about right because my DD AT 40kg and the same height, but two years younger, was early 70s. For her, getting to 85% was transformative.