Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Hi plant welcome although sore you're here. Also sorry to hear your dh isn't on board, agree with Bagpuss, if your dd had cancer I'm assuming your dh would be fighting for her and wouldn't allow her to refuse treatment? This is a life threatening illness that needs both of you to unite on in order to help your dd.

If he really doesn't want to help I would insist he leaves it all to you to be the carer and makes absolutely no comment about the care you give. If he can't be supportive then the very least he can do is not undermine the treatment. Has he been involved with the meetings at Camhs?

@plantmum22 Well done on supporting your DD. Sorry your husband isn't on board. Could it be that he doesn't understand the seriousness of th condition. Does your care team have any workshops for parents? Ours has one targeted at dads. Otherwise, Beat does have excellent resources.

Hi all,

just wanted to update… with application of cream and ovaltine last thing at night we reached reached 99% W4H on Friday.

I can’t thank several of you enough - myrtle, valley, girlie etc - for your help. Apologies if I’ve missed anyone, I know I have.

As a few of you said, we needed 3000 calories a day. I wish we had done it sooner but it took so long to build up to her eating properly and not taking hours that I think we underestimated what she is capable of. We pulled all exercise which also helped - again as people suggested.

I don’t think we could have done it without Olanzapine as she was so manic and distressed, but once it was stopped I could tell she was relieved. She is still a perpetual motion machine and asks to stand up about 100x a day but no longer doing squats in the loo etc.

DDs mood has improved dramatically and she told me in the car to CAMHS that she just wants to get better now. Of course 2 hours later she screamed the place down for 45 minutes and told us she wants to die - because DD1 had the temerity to go for a walk when DD2 still isn’t allowed - but she said it.

I don’t think it’s the beginning of the end, but I hope, HOPE it’s the end of the beginning.

…I was wondering… what can I expect next over the next 3-6 months? CAMHS said that’s how long the extremes would take to calm. She’s miles away from being able to handle her food and is highly emotionally volatile. Still cannot be left alone ever. But her GPs came today and after hiding for the first 10 mins she actually interacted with them nicely. What’s the next stage?

I am absolutely hollowed out emotionally but as a wise friend said, that’s probably just where i need to be right now.

@plantmum22 at the risk of sounding very gendered, I don’t think many men get it straight away because they are so food positive. They don’t have the complex relationship with it that women often have.
DH has been amazing but he had to come to a CAMHS appt and read/watch Eva Musby to fully understand the seriousness. I can’t recommend enough that he does both.
That - and the traumatic meltdowns involving self harm 😮‍💨 showed him

Please ignore previous post - I can’t find the graphic so it makes no sense. My apologies.

Welcome @plantmum22 - would it be of any help in 'managing' your DH if you showed him some of the posts of people who have recovered but have said how much they deep down knew they needed their parents fighting for them but that the ED meant they couldn't say so at the time? I'm sorry he's not yet stepped up to the plate.

@D1ANA22 - I've now got the school nurses paper but it doesn't cover your scenario - I'll keep an eye out though..

@WhatHo ahh - your post made me a little teary - it is such good news for us all when someone's DC has a break through! Am so pleased she was able to interact with her GPs! In terms of next few months - you're right it will be a game of snakes and ladders but the best advice we ever had was about filling the day with activity and distraction to reduce space for the ED so family games like UNO, bananagrams, other board games - anything that gives the brain something to focus on (plus for us DD needed to occupy her hands as anxiety/self harm meant her hands were the touchpoint for distress)

DD turns 20 this week, so we're into our last few days of teenagerdom - she is doing well and seems to have stepped up a gear in terms of maturity/independence recently - although still has very high disposition to anxiety. We keep on keeping on!

Thanks everyone for your kind and very helpful comments. unfortunately dh hasn't been able to attend any CAMHS appointments due to working full time but my DDs worker has offered to give some on the phone advice which he is going to take up. It's really difficult and I know I am doing the right thing by making my DD gain weight and recover but as you can imagine it feels completely overwhelming doing it on my own.
DH understood and was extremely worried when DD was first ill and was completely on board with the recovery process, making sure she ate everything on her meal plan but now she has gained a fair amount of weight (7kg) the worry for him has started to wear off. she still needs to gain at least another 5kg to be healthy but as she is out of the 'danger' zone my DH just seems to have lost that immediate worry. He listened to a 3 episodes of The Weigh Up podcast last night and said he found them extremely useful as there was a similar father perspective in episode two. hopefully there will be a turning point soon for both my DD and DH!

@WhatHo I am so pleased to hear your amazing news. That is fantastic progress. And yes it def sounds like you are at the end of the beginning!!!
My advice would be to keep going weight wise. She is v young and has growing to do and then puberty. As she gains height her weight will need to go up. And puberty takes thousands of calories. It's better to have a cushion to allow for that imo.
Don't be afraid to over shoot. My DD got to 105% and she needed it.
On the activity front we only allowed organised/ supervised/ social type activity. So her football training, family walks etc. Nothing alone. I only recently let her go running again alone after 18m of recovery! And I worried all the time she was out. She didn't really enjoy it tho so hasn't done it again..
As myrtle said its not helpful for sufferers to be in their own heads too much.

Whatho** fab update, I'm really pleased for you.

I would keep doing what you're doing, I think the biggest risk is allowing too much freedom too soon. Definitely aim for a decent overshoot weight wise, generally of between 5-10%, although at some point Camhs will get twitchy and start making noises about dropping snacks etc 🙄

I personally completely ignored that sort of advice and trusted my instincts which were that dd still needed lots of calories.

You can test the waters occasionally to see if your dd is able to make sensible food related decisions for herself but don't be afraid to reign back control if your dd starts to get overwhelmed.

Hi everyone. How are we all doing? To update on us, we took DD to visit Ancora House on Tuesday. They decided that DD wasn't appropriate, as - although DD is eating in hospital, they think she needs the threat of an NG tube to do so, which they couldn't accommodate. They have however recommend a specialist ED unit, so it's a waiting game now. DD is looking much better in hospital, and talking more rationally, because of the food going in. So, on balance, I'd say a positive week.

Nan I thought that was a tier 4 unit?

Nan - that does sound more positive - Your DD’s hospital is Alder Hey - I am aware of a specialist unit, the Cove in Lancaster - 14 beds. Has your team ever mentioned this facility to you - whether they will take your DD if they won’t NG feed her I don’t know but having more than the four beds at Chester may mean more opportunity to be admitted.

Hi. Yes, it is Tier 4, but it's a 16 bed unit for young people with mental illness, including 4 beds for yps with EDs. They don't take patients on NG tubes though. Although DD is complying, they think (and I suspect they are right) that she's only complying because the threat of NG under restraint is there.

@D1ANA22 I didn't know about the Cove. They seem to think the Priory Altrincham is most likely. But Lancaster would be okay too. Thanks.

Amazing news! DD has a place at the Priory Altrincham. Transfer on Monday. DH and I have been crying with relief. Hang on in there everyone!

Sorry - transfer Weds.

NanFlanders What a relief for you all. Let the tears flow, you've had such a difficult time. I hope this is a turning point for your dd. Sending you love ❤️

Things are hard here. DD is compliant with food, eating just enough to maintain or gain a tiny bit, but highly anxious about every single thing. I can barely leave the house and I live with the terror that she'll harm herself.

Fantastic news @NanFlanders

What's the distance for you compared to Liverpool?

That's great news Nan, I really hope this is the turning point for recovery for your dd.

@NanFlanders Thats really great news. I hope she settles in to the new unit well.
I’m not surprised you feel that massive sense of relief.

@BagpussSaggyOldClothCat Sorry things are so hard. It’s so distressing to deal with the constant worry.

DD has been in the ED unit just over 3 weeks now and has managed the last 24 hrs without an NG feed so that is a small but good step in the right direction.

It's hard , the visiting is very restricted and although I know she’s in a safe place it still feels very difficult leaving her there, although that is easier than it initially was. Have to keep reminding myself how awful things were for her ( and us) trying to manage at home.

Thanks all. @BagpussSaggyOldClothCat Sorry things are so hard, but brilliant that you are getting the nutrition in. I do hope it starts to have a calming effect soon.
@NCTDN - About 30 miles. It's the nearest unit other than Ancora (which she was too sick for), so we are made up!
@Frankie291 - 24 hours without the NG is a big step forward. Hope it's the start of a turnaround. What unit is she in?

great news @NanFlanders and @Frankie291 - I hope progress continues
@BagpussSaggyOldClothCat am sorry to hear about the levels and impact of anxiety.

Just wanted to give folks a heads up that Hadley Freeman's new book about her experience with anorexia is out soon so attracting lots of press - I read the article in the Times (happy to post share token if wanted) and it was very much like walking in Dds shoes (although on different timelines and much shorter hospital stays). For some of us/DC/families this may be a manageable period of press but others may find it distressing and triggering so wanted to make sure you were all aware of it

@myrtleWilson thank you for linking the article. Hadley's treatment in the 1990's doesn't seem that different than current practice, three meals three snacks. Her struggles with her ED and then switching her control to drugs, toxic relationships and she says the AN voice remains behind the door makes me worry for the future of our DC. I suppose we have to live in the here and now but I hate the uncertainty that this illness casts on DD's future.

One blessing (word used with heavy irony) in anorexia is that many of the sufferers go on to be whip smart, staggeringly good writers.

I'd really recommend Victoria Smith (author of Hags) on the podcast Gender: A Wider Lens. And much of what Hadley discusses in her article is on the Stories of Our Times podcast out today. It is very gruelling listening but for me it was very illuminating about the mindset and that all encompassing psychosis that sets in.

I'm listening and reading with confirmation bias of course, but there are two things I'm gleaning from them that we accidentally or intentionally strove for with DD. The first of which is that the idea that putting on a requisite amount of weight will magically cure them is a nonsense. I really think that the NHS and all anorexia treatments need to go all in with the head stuff as soon as the body is out of imminent danger. It's hand in hand, of course, but I think the NHS over-emphasises weight gain (in my opinion) to the detriment of psychological help. Of course this might be economics.

Secondly that any treatment that is overly punitive is doomed to failure. Anorexia fills a hole in their lives so you have to somehow show them that there's this wonderful life that they can have without it. Restricting them to never going out, not having contact with others, not being allowed to do the things they enjoy, stopping all school etc is inadvertently creating the perfect environment in which it can flourish. We went against medical advice in allowing her to go out with her friends to go shopping and hang out, as well as playing football and dog walking. Obviously we wouldn't have done this had she been in danger of passing out etc.

Well reading valleys post, I want to add that DC had 2 years of purging on and off. Normal weight. Third year her vomiting became so frequent she started to lose weight.
Therefore it indeed worries me this about "obtaining normal weight and all is ok".

I am also a bit perplexed about her needing to put on weight before mental "treatment" could start
Whilest waiting she lost 6kg.