Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Curlyhairedassasin yes, I’ll try to get into see the gp but getting an appt is as rare as hens teeth.

Hi guys
Thought I'd pop back on here (hoping some of you remember me and my DDs journey) with a positive update that I hope will be inspiring and not depressing.
For those that don't know my DD was diagnosed with AN with compulsive exercise disorder in Dec 2020, but had been ill much longer, prob since the first lock down. Took ages for me to realise, and then longer still to get anyone to believe there was a problem, and then even longer to get any help. She was just 13 and an elite sports player. Got down to 77% wfh.
Anyway long story short (and not dwelling on the hell we lived through) she WR plus some by Aug 2021 and then slowly (and I mean slowly) improved to a point late last year where I decided I was the main reason she wasn't fully recovered as I was struggling to let go of my own trauma. So that's when I pulled back from these threads (which had honestly saved my sanity, as I felt I was holding on to the illness by trying to help others and not allowing myself to move forwards. I also took the plunge and completely removed myself from her food. Stopped reminding, stopped mentally tracking, stopped even noticing. I stopped thinking she didn't eat chocolate because of AN and accepted that she doesn't like it (wierd girl) etc.
We do still talk about food due to the sport she plays and her academy nutrition advice (which means she has a carb loading plan a few days a week which 3 years ago would have been unthinkable!).
It has gone really well. She's now nearly 17 and totally recovered. I have even managed to start a diet of my own to try to rein back some of the 2 stone I put on during her illness. She hasn't batted an eyelid.
She is managing 3 A levels, high level sport and this year has been capped 3 times for her country for the first time.
I also feel a lot better having let it all go. I still have flash backs but I have learnt to trust her again and it's paid off.
I was you all 3.5 years ago. Terrified, over whelmed, unsupported, out of my depth, afraid she would die, afraid my DD would never be the same again.
I couldn't see an end tbh.
But full recovery is possible. My DD is testament to that.
I wish you all the best with your journeys and hope your DC can also recover. I know you will try your best to get them there. And that is what matters.

@Lottsbiffandsmudge that's so good to hear. Is she still playing for Arsenal (is that right? It rings a bell).
My dd is another success story and I also had to leave these threads for my mental health. But they truly were the best support when dd was ill.

@WoodenTrain I'd be asking pals for advice. Martha's rule is just starting to be enticed but doesn't appear to be widely run yet. However it's proof that you can ask for second opinions if you're worried.
@Cantfindthewordsddstruggling please get some help for yourself. I do remember Nan posting how she was feeling when her dd was in the depths of it and despite not knowing anyone here irl, it really worried me.
You can't pour from an empty cup x

@Lottsbiffandsmudge & @NCTDN thanks for sharing your success stories, see my positives a long the way have given me hope when things have seemed so bleak and dark.
Touch wood we are doing well at the moment. They gave us a diagnosis of worry/anxiety so on Monday a 8-12 course of cbt is starting, hoping that really helps keep us going forward.
I'm a bit lost with the thread due to the holidays hope I'm thinking of you all. @WoodenTrain how's your son? He really sounds so unwell I hope you get some real help soon.
@Cantfindthewordsddstruggling hang in there, you can do this and things will get better.

Hi lots so pleased things are going well for you, I think we both joined the thread around the same time and can't believe our girls are 17/18 ish now!

My dd is also much better although not quite fully recovered, we still have a few behaviours that linger (leaving small amounts of food, not really snacking and will still only have a couple of non water drinks a day) but she is happy and healthy.

I think because she is (undiagnosed) autistic that the behaviours and rules will be hard to shift as she's always liked having arbitrary rules to follow. But she will push herself if I raise an eyebrow, for example the other day she said she just wanted breadsticks and hummus for lunch and I made a comment that that's not really enough food.

The next thing I know she's got the whisk out and made herself three large pancakes which she had with biscoffee spread and bananas!!

Likewise we were in town the other day and I bought her a veggie bake and doughnut for lunch. I expected some pushback re the doughnut but she ate it and even said how nice it was 😳

So all in all things are good, dd finishes college in a couple of months and i really feel like she can do whatever she wants to do.

wooden i hope you're okay

Not much change here. Feel like I’m living in limbo, everyday we have the same circular arguments. He’s not following the meal plan, on a good day he has around 1000 calories, but some days as little as 400. He thinks he’s fine and just wants to be left to do his own thing.

The ED team came out today to do his physical observations but he refused. They are coming back in the morning as they said they must be done and there was talk of going to hospital if refuses again tomorrow. DS said he doesn’t care as he’s not going to hospital. Not sure what will happen if he refuses hospital.

Wooden if they think his life is in danger (which I think it probably is) they'll section him and he will be taken to hospital by force (they'll call police and ambulance.)

I'm so sorry, it's so shit 😕

How did today go @WoodenTrain? Did he let them do his obs? Hope you’re ok.

He did let them do his observations. There was then a discussion around whether or not he should go to hospital as he was flagging red but ultimately it was decided that he could stay home for now so the ED team can try and build a rapport with him rather than traumatise him. They are visiting again for further observations on Sunday.

I’m hoping he’s beginning to see the seriousness and starts adhering to the plan. How are you doing?

I’m ok, just exhausted from it all, feeling anxious. I do understand the rationale for keeping him at home but equally I feel we are just delaying the inevitable. I don’t think DS understands or cares about the seriousness of it all.

@WoodenTrain It's an exhausting place to be in, with professionals refusing to take action 'just yet' or 'just in case'. We went through this with DD just months ago. I felt too that we were delaying the inevitable. Which we were, because she was eventually given an inpatient service but at that point completely refused to go. I keep thinking if she'd have been offered a hospital bed when she needed it (and she did, she was red on the MEEDs checklist too) it would have 'boosted' her progress a lot quicker than it's going now. I really hope your son's needs are listened to, rather than his ED's needs speaking through him.

For info, my DD is still maintaining weight 😔 she hasn't gained more than 1kg in these past few months. So sitting at 62% wfh. I'm very worried but ED service can't offer much else because she's eating 1200-1400 calories... so not practically starving herself 🙄 They are still offering the EDU but it's up to DD whether she goes or not because she's 17. They won't section 'at this point'. Is there anything I can do?? Taking charge does not work at all.

That sounds really hard @lyriccat. I fear the same will happen with DS, always eating just enough to avoid hospital/being sectioned but never enough to actually gain weight and be healthy.

Lyriccat have you got any leverage? Is there anything that will be an incentive to your dd to recover?

In a way I would be pushing and taking charge because the more your dd kicks off and pushes back the better chance you have of getting her sectioned and getting the help she needs.

If you say to the ED team 'we can't manage this at home anymore' what do they say? Your lives must be completely consumed by caring for dd?

Wooden it makes me feel stressed that they recognise your Ds is really ill and should be in hospital but aren't doing anything to help. What could be more traumatic than him potentially collapsing or worse?

It is beyond frustrating that once they get to 16yo they are given much more autonomy which just plays to the ED favour.

Lyriccat WoodenTrain your experience of being left to get on with it is very much the same as ours. I asked in desperation if we were just meant to wait until she deteriorated to such a stage as to need hospital admission and I was told that that was pretty much all we could do. They said that she wasn’t 15 and therefore FBT wouldn’t work I.e. we couldn’t ‘make’ her eat. As Girlie has suggested, we tried to find things that she wanted more than holding on to the ED but they had to be short term goals. It was explained to me that long term goals don’t work for depression. To a large degree it seems to be accepted that until they want to get better there isn’t much you can do other than monitor closely and seek urgent medical help if anything changes. It’s a huge responsibility over a sustained period of time and takes a huge toll on your own mental health. Eventually, she did get fed up with the pain and discomfort of being so low weight and agreed to a day unit but by then she had an awful lot of ground to make up and the strain of supporting her as she fights the ED is really taking its toll on all of us. But we hold on to hope and send it your way too. X

64% is low enough for admission for treatment?

It is in our area, we were told below 70% and they go in patient or day in a tier 4 day unit. My DD17 has just finished 3 months at a day unit, she improved enough to be able to discharge herself a couple of weeks ago. She will go back unless she continues to improve at home and with community support. We’re 5 months since diagnosis net gain is 2kg!

Do you have the community team helping? Why won’t they admit her if she is not gaining weight?

it is exhausting looking after them at home all day. Is your DD off school? On bed rest?

DD ate a Sunday lunch, even asking for a potato once I’d plated up her food! There was potato bake on it already so I was very surprised. Yesterday, she admitted that the ED voice is incredibly strong at the moment so eating what she did would have taken immense courage.
I would like to say I am feeling better but I’m not. I’m safe but that’s about it.

@WoodenTrain thinking of you and DS today. Hope the appt goes ok.

Many of us seem to be existing in a state of hypervigilence, constantly on edge. It’s exhausting isn’t it?

So many perceive the number on the scale as being the sole indicator of a sufferer’s health, it can be so dangerous. DD justified that her ED wasn’t that serious due to the number on the scale. The dietician promptly told her she was eating less than a toddler.

DD suffers from depression so long-term incentives are difficult as Shanghai said e.g college or uni to do things she enjoys.

I'm appalled at the lack of help we're getting from the ED team too. Just a month ago we were offered a bed at an EDU but I'm now told it's not necessary unless DD chooses to go, which she won't.

She's been off college since November. Day to day she makes her own meals and eats what she makes but it's no more than around 1400 calories every day. She does little exercise, just sitting on the sofa or her bed. I've been able to keep working remotely to monitor her eating but in no way am I able to prepare her anything. She won't eat it. We used to go down to a&e after every refusal but DD ended up eating less on days we did that. ED team reckon this rigidity is her autism.

I've said "she cannot manage to gain weight at home, so what am I supposed to do?" and am told that if her intake gets any smaller then she will be sectioned but that it's 'stable' now and so are her obs, so hospital would essentially be pointless.

Our service also say that under 70% is hospital or EDU so I'm beyond frustrated that my DD is way below this but won't be admitted because of physical obs and intake. She'd have to gain over 20kg to reach a healthy weight... this just seems impossible.

@lyriccat your DD sounds so similar to DS. He also has depression and stopped going to school (Y11) in November. His school don’t seem bothered by this, tbh I think it’s easier for them him not being there.

He basically exists between his bed and the sofa, has had a support worker from CAMHS once a week since Jan to try and get him to leave the house, sometimes they make it as far as a coffee shop in the village. Nothing motivates or incentivises him.

I’ve had to take lots of time off work, I can work from home a few times a week but it’s almost impossible to work and support DS. I’ve now been called into a meeting on Wednesday so I’m so anxious that I’m in trouble. My mum thinks I need to just give up work and focus on DS but I can’t afford it.

Forgot to add, he’s eaten a bit better around 1200 calories the past two days and his observations were improved this morning, he’s back in ‘amber’ now

@WoodenTrain Glad your DS has managed to increase the calories a bit. Have you tried asking your ED service or CAMHS to write a letter to your employer explaining the need for you to be at home for the time being? Our service were happy to do this which let me work from home which wouldn't usually be allowed.

@WoodenTrain have you applied for PIP / DLA for your ds which would then at least enable you to claim carers allowance if you had to give up work?

@WaitingForMojo Yes, he gets DLA currently and we are in the process of applying for PIP. Fortunately the DLA continues while we wait for the outcome (which I was told would be in 4-6 weeks four weeks ago)

After a good weekend with DS following the meal plan (1200 calories) he’s panicked that he’s eaten too much and has pulled right back, skipping dinner and no snacks. Very frustrating.

Morning everyone. Just wonder if someone could help my daughters meal plan will b upped next week but just wondered if anyone can tell me where they will up it, this is what my DD is currently eating
breakfast
snack
dinner and pudding
snack
tea and pudding
supper