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

@ItRainedForever what a great story and I am so glad your DD is in such a good place. Exercise compulsion is so hard to deal with. It nearly broke me!
My DD doesn't really remember either, except that she is adamant she 'never wants to go back there'. Which is a comfort.
I hope your daughter never goes there again either.

@BagpussSaggyOldClothCat Hi - I was reading Eva Musby and I saw this, and I thought of you and that it might be of some comfort:

“The last of these plateaus is sometimes called the ‘extinction burst’. Some say it happens in the last ten pounds, some say at 90 per cent of expected body weight. It is anecdotal and in no way universal. For some youngsters, as they get close to target weight, anxiety spikes and there’s an upsurge in resistance. Maybe they’re terrified of overshooting? It can be disheartening for the parents, and at the same time, this is not a crisis, but a normal threshold to get over. Carry on feeding and don’t even dream of stopping the weight gain. If you stop, your child will remain underweight, scared, and unrecovered.”

Excerpt From: Eva Musby. “2022 01 10 Anorexia and other eating disorders”. Apple Books.

@ItRainedForever Thank you THANK YOU for posting.

I've read your story about 5 times. Mine is so dry still but you have reminded me that her discolouration is fading. How long was your journey back to happy child?

20thCenturyWolf

Thank you. Until ED dd was a fairly happy girl but did have periods of social anxiety for which we sought counselling privately and through school and she went along, engaged and said it helped. ED does seem to bring a lot of things with it and I'll mention ocd to her therapist.
She hasn't been offered medication. I hope she can, in time, accept some counselling as it worked so well for her before. I guess her poor brain needs a lot more recovery first.

Thank you WhatHo I think that's were we could be. I think dd is struggling with her weight gain negatively even though it's not noticeable and she doesn't know her weight. We don't have scales and she's blind weighed in the clinic, but she must be seeing/feeling it to be wanting to hide herself away, even from her family. It's a delicate time and I just have to keep the hope that we can get through it and keep moving forwards.

Aww love the story of from @ItRainedForever - it's good to be reminded that the majority of ED sufferers make a full recovery, especially those that are young with supportive families.

Your remark about it seeming like a dream resonates. I can't quite believe that things were as awful as they were and sometimes wonder if we didn't exaggerate. And then I recall actual events involving two of the emergency services and I know that it was horrifically real.

We had the best parents' evening yesterday. I wouldn't mention it in real life but this feels like a safe space. She did so well in her mocks, but more than the academics, I'm relieved by how calm and measured she was throughout. Fingers crossed for the real thing. One of the teachers said how proud she was of her, given that she missed a whole term of y10 and how well she'd caught up. Not a single teacher said she needs to speak up more in class. Before the ED, that was what every one of them said. I do think she's come through this better, stronger and more confident than she was before. It was almost like a (horrific, two-year) exorcism of her neuroses.

Gosh @Valleyofthedollymix that sounds amazing!
I do agree that my DD has lost a lot of her pre ED anxieties. She too has just had amazing mock results and a great parents eve!
I am not sure if the improvement in her pre ED anxieties is due to me learning how to deal with them better, her being a better weight than she has ever been, (even pre ED) or the resilience she has learnt going through the ED. Prob all 3!

@Lottsbiffandsmudge and @Valleyofthedollymix , your experience and how far your DD's have come with recovery gives me hope. At the beginning of DD's illness I would read stories of recovery for my own sanity, but those stories seemed abstract - 'knowing' DC's from this MN thread who are getting on with their lives is inspiring.

@D1ANA22 i was like you but recovery will happen. My dd is so happy and herself again - something I never allowed myself to dream.

I have sort of survivor's guilt as well as fear of jinxing it when I talk of how well DD is doing. There was a time when she was making zero improvements and it felt like all those who'd joined the board at the same time were fully recovered. And sometimes that made me feel a bit hopeless so I'm really wary of making anyone else feel like that.

She was so bad, she really was, and her behaviour felt as though it was getting more entrenched every day.

I collect stories in real life of all those I know that have recovered - there are lots and lots of them. I know there are the opposite, horror stories, but the odds really are in our favour.

@NCTDN thank you - I've had a rubbish end to the week. CAMH have discharged DD and on CAMH's instruction school have switched to not monitoring snacks and lunches. I discovered a pile of pound coins DD was given for snacks and I have learnt that she has been picking a dry wrap for her lunch. She is eating breakfast and dinner at home, but for the eight and a half hours she has been at school she has had a wrap. It was at school where she was throwing her lunches away when all this began.

I know I should view this as feedback and not failure - but it is hard to avoid taking myself all the way to the beginning of DD's illness. I've gone in hard, school to reintroduce supervised meals for lunch (hot meals and dessert) - this is her year 11 and slipping back with daily calorie deficits and the stress of exams could have serious negative consequences. I think I've done the right thing, it just feels as though the ED is trying to sneak in whenever it can.

D1 well done for being on it, I think our dds are quite similar in that if you give the ED an inch it takes a mile!!

It's good to hear the positive stories although bittersweet for me as my dd became unwell at similar time to lots and valley and I feel she's not quite as far forward as your dds are.

She is obviously much better than she was, currently doing well at college, has made some new friends, started work experience but the ED is still there lingering like a bad smell!

It's so ingrained now I worry she'll never let it go 😕 she still leaves food, chooses low calorie options, won't eat cheese or butter (unless they're hidden) still only allows herself two non water drinks a day, still doesn't eat freely....

It's so frustrating.

Hi all,

Am looking for advice again.

We had a day of utter devastation yesterday. After 4 weeks of putting on 0.5kg a week, we were confident going into OBs, I was actually excited. Due to training it has been 10 days since she was last weighed so I thought she's be over 36 at least.

She has lost weight.

I couldn't get over it. It's a v small loss, 100g from 35.7 to 35.6, but she should have put on at least .5kg. I simply couldn't get my head round it, she has been eating the same amount of cals and yes exercising too much but same as the couple of weeks before. She is not purging and I am sure because she is never alone. CAHMS said that it could be stress (she has been very anxious the last week but I guess that could also be less calories), exercising in night (I doubt it as she is absolutely exhausted and doesn't have an alarm clock or phone) or hypermetabolism.

I was asked to up her calories (they didnt give an amount so I've just randomly chosen 200cal ) and restrict her exercise . They left me to break the news to her when she has said again and again she only trusts experts and did not help with a new eating plan or anything really.

My lead has Covid and despite being on the enhanced care pathway we haven't seen a dietician for more than 3 weeks or spoken to any carer for 10 days.

On way home we went to Costa to get the sandwich she has bravely updated to (tomato and cheese toastie) .... and they didnt have it. It was sold out. She basically lost it and after a meltdown in Costa and the street, I bought a sandwich from coop and after 4 hours managed to persuade her to eat it. Then snack ok. At supper I gave her a smaller main and bigger pud. She whispered 'thank you for being strong for me' and I was so proud of her, and I thought I'd try creme brûlée as you need to eat so little.

3 hours later at midnight she was still screaming like a tea kettle, trying to tear her hair out and throwing herself on floor and making herself in the face. I called 111 for advice, they called me back at 1.30am to ask me the same questions again about whether she had a head injury (she doesn't and I had told them) and said a mental health person would call me. They haven't.

She is calm today and has eaten and rested but very on edge and I am terrified of making a false move. She looked me in the face yesterday in the car after the lunch meltdown and said in a terrifyingly reasonable tone "you know, you can't actually make me eat if I don't want. I just wont open my mouth and there's nothing you can do. I don't care if I'm not healthy."

What the hell do I do? If she's got hypermetabolism and she starts refusing food what happens? Where do I go? Who can help?

Hello @WhatHo - am sorry you had such a traumatic day and then the frustration of the sandwich being sold out - I know very well that feeling of the whole world conspiring against you.

You've had a real positive from your DD - thanking you for being strong for her - thats so insightful of her and a recognition that she wants you to keep going for her (I know you will anyway).

In terms of last night - I wouldn't bother with 111. I've said on here before but we had a revelation when we called out of hours CAMHS crisis line. Now in lots of ways, I agree with the joke/meme about CAMHS responses to anxiety often revolving around have a bath or a cup of tea. However, our experience when we used crisis was really helpful - we would speak to them and then if possible DD would speak. The other benefit was that it was recorded instantly in her CAMHS notes and we'd usually get a call the following day from her support worker.

Up until the first time we called crisis, I always thought - they don't mean us - they mean people whose child is more in need. But then one day, we realised that we weren't sure how to keep her safe and we had an absolute right to call them. We didn't abuse it but not once did anyone from Camhs even hint that our call was unnecessary.

Long story short - you're doing well even if you don't feel it and keep that Camhs crisis number in your phone.

@WhatHo I really wouldn't worry about that weight loss - it isn't a loss, it's a maintenance and we'd have weeks of these with no gains. If you've ever been on a diet yourself, you know that weight loss/gain is rarely linear or logical. DD's psychiatrist used to say that +/- 250g was a maintenance, anything over 500g (ie 1lb) was a loss or gain. If she keeps either gaining or maintaining then things are heading in the right direction.

@Girliefriendlikespuppies yes, you, me and Lotts were all here at the same time weren't we? DD was diagnosed end of Dec 2020 although she'd been dieting since June. As I say, I felt a bit despondent that people were coming on and leaving fully recovered while DD was stubbornly stuck at the same weight (but also pleased for them, obviously). It's a long haul and god knows where we'll all be in 10 years time. It always sounds as though you and your DD have an amazing relationship so cherish the fact that you've mananged to get through this with that intact.

PS I always have to caveat that part of DD's recovery is the shed load of money we threw at private therapy, not something that everybody can afford and I wish that it were available to all.

@WhatHo I agree that a loss of 100g is not a loss. It could be down to so many things, amount of water drunk different to last time, different clothes, different scales etc
It is, I remember, a complete kick in the teeth though when they don't gain and yet you have done nothing different. We had weeks like this often followed by a good gain. And I always felt like the week had been a waste abd personally affronted. So I get you.
Allow yourself to feel gutted, then pull up those big girl pants and carry on meal by meal.
You post contains your DD's voice (thanks for being strong for me) and the ED's voice (you can't make me eat). Its your DD's voice you need to focus on.
When the ED speaks I would just say something like 'well I will keep doing the things I need to do to keep you safe' or 'I am never giving up on you'. Your DD will hear this.
My DD used to thank me when I was helping her get to sleep at night. After a day of ED running the show with all the accompanying vitriol and self harm and incessant movement. These glimmers kept me going. Your DD is in there desperate for help, needing saving.
I would echo trying the crisis line if you feel you can't keep her physically safe.
Just to say again that I know how a lack of gain can feel devastating. But do try to look at the overall direction of travel and how far she has come. Unfortunately it's a long road to weight restoration.

WhatHo so sorry for your awful day.
Your words strike a chord with what I've been through with dd. We've had so many 'sandwich' situations. Well done on getting her to eat an alternative even though it took a long time.
Also the night time meltdowns. I used to sleep on dds floor and soothe talk to like she was a young child talking about when she was little and the places we'd been and plans for the future. Eventually she would calm and that's when we had our most honest talks. Definitely get help if it's getting out of hand though, parents can only do so much, I'm still shocked what us normal parents with no experience are expected to cope with. If it wasn't for other parents experienced on forums like this I'd be totally lost.
As awful as it is try and remember each meltdown can actually help as it's the ED voice really coming out. Without those awful times it's very hard to confront those thoughts and feelings as they hold them deep inside.
That small weight loss is definitely a maintain. It's the weight of a drink. My dd was losing half a kilo a week in the early days and it's now taking probably 4 times that to put it back on again.

Whatho I agree with the others that's a maintain rather than a loss but I can understand how frustrating and disheartening it is for you. The Costa scenario is one I think we're all familiar with sadly, I've definitely been there with dd, it's bloody hard going.

In some ways a small loss or maintain I think helps your dd understand that all the food you're making her eat isn't going to suddenly make her gain loads of weight which is what the ED will be telling her. It helps rationalise the situation a bit, to gain weight takes a massive amount of calories and that amount increases with each gain they have.

What my dd eats now was enough to make her gain weight 10kgs ago now she just maintains on the same amount iyswim.

Mixed news on my DD. She is now eating 3 + 3 in hospital (or drinking the equivalent in Fortisip). I'm a bit concerned about some new anorexic behaviours though - restricting fluids (which she'd never done before), and star jumps in the bathroom - hospital have moved her from a single room to a bay to keep an eye on her. She's also turning down visits from her friends, and reluctant to return to school as she thinks her body has changed - school was always a big motivation for her. She's on the Tier 4 waiting list, but her team are very 'down' on Tier 4, and say her prognosis will worsen considerably if she ends up there, so I don't know if I should push for it or not. Her friend found Tier 4 to be a real turning point for her, and I do think she needs some more intensive therapy than 2x weekly appointments.

@NanFlanders the food and supplement intake is a positive. The backlash from your DD I hope is a temporary response to her feeding. I have no experience of tier 4 - I recall you mentioning that your DD is in Alder Hey, I imagine as a regional children's hospital it is quite large - is there no possibility of a longer stay in the refeeding unit there, almost akin to tier 4, and this to avoid the bouncing in and out - or is this unrealistic?

@D1ANA22 She's on a generał paeds ward at Alder Hey, but they can't keep her in longer than her physical health warrants. I am worried though about how helpful it is to keep going round the merry-go-round of hospital admission, refeeding via NG tube then reestablishment of eating, discharge, restriction, weight loss, hospital admission. (7 times now). I just feel that she need intensive therapy which she won't get in paeds. But obviously, I don't want to send her anywhere that will make her worse.

@NanFlanders the worry is that there are no 'local' tier 4 beds as well. I read that the NHS has contracted for all the private beds as well such is the number ED problems following the pandemic. I hope that you find a solution - I read an article Mark Austin's (sky newsreader) - his daughter received twelve months of day care from the NHS, she was picked up in the morning and home at night - but I have never come across the offer of such treatment in my research - whether it still exists?

I have just learned today that our friends daughter has been admitted to hospital following her diagnosis last week. My DD no longer sees this girl, they attend different schools and have not spoken for years, but when younger (below 10 years old) these girls were in a disco dance club, nothing demanding with only say 12 girls altogether. They are non contact but individually three of the girls have been hospitalised with AN. What is going on in these poor young girls lives.

Oh my gosh - I know! There is another girl from my DD's year in the same ward and she knows of at several others at school - considering there is supposed to be a lifetime prevalence of 0.5%! I don't know if it was lockdown, social media or what, but cases seem to have skyrocketed!

Sending love to you and your dd NanFlanders. I hope something suitable is found for her at the stage she's at. I'd certainly love some sort of day provision for my dd. She's not bad enough physically to be away from home for treatment, but mentally she's very bad at the moment. Somewhere she could go regularly to build up a rapport and trust with professionals on a regular basis would really help her I think.

I can't get to the bottom of what started it all for her. She did dancing, acting, guides and was happy at school but she has always had anxiety and suffered badly with the usual teen girl friendship fallouts. She says she had some comments about her legs but it can't have been just that. I think social media has played a part, certainly in making it worse. If only she would engage with counselling I think getting to the bottom of exactly what triggered/triggers the thoughts could be helpful. Until then she's just stuck. We're all stuck.

Never been able to figure out what made DD start. Did start during lockdown but yes also wondering what influence social media has. When I was her age would have had no idea how to even make myself vomit.
She did various after-school clubs over the years and from each club I know another girl with ED.