Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

It's a nightmare isn't it SwattyPie. I've been there with the shock at seeing her little arms.

I have to really bite my tongue to avoid saying the wrong thing. Dd is heavily into make up with huge eyelashes and awful dark contouring that is verging into drag queen territory. In this hot weather it looks particularly awful. If she wasn't ill I could probably say tone it down a bit but she's highly sensitive about how she looks.

I long for a normal mother/daughter relationship where I can be honest and open and help her a little with her choices without causing possible food refusal or further self hatred.

You can't win, SwattyP. We can't give an honest answer that they will like.

Nomore and Bagpuss it sounds like our girls are all at a really similar point 🙁 I feel exactly the same as you both. Dd looks okay and I think most people assume she's fine but she still struggles every single day with food.

I wonder if she'll have to relapse at some point to hit the realisation that having an ED is actually terrible and that will push her to recover. At the moment her thought process goes like this

'If I recover I'll eat more'
'If I eat more I'll gain weight'
'If I gain weight I'll be fat and ugly'
'No one will like me if I'm fat and ugly'
'If I have no friends I'll kill myself/die'

She just doesn't seem to be able to challenge any of those thought processes and the risk to her in terms of recovery is too high.

Nomore her packlunch is normally a sandwich or wrap, crisps and a chocolate bar. Really boring but she doesn't like change so I tend to stick to it. At home she will have things like a veggie chicken sandwich or a fish finger sandwich but at college it tends to just be tuna Mayo.

@Hennups13 How's it going, lovely? Hope you are hanging on in there and have managed to get some help and support.

I hope you're OK @Hennups13
I've been thinking about you and wish I could help. I remember those terrible early food refusal days very well. I really hope you and dd are safe and getting help x

Thank you all. I didn’t take in the end. It was too distressing. I had a meltdown in the car outside and she called her dad, who showed up to save the day 😡
She’s eating less and less. Camhs referral has gone through and a dietician one, so we’ll see if anyone can help.
I’m at breaking point every day but somehow get up and do it all again.

Hen I'm sorry it's so hard, I think if you aren't getting food in hospital is inevitable and the earlier you get support the better.

Is it the ED Camhs service? Normal Camhs will be of no use to you.

How often is the dr checking her physical obs? It need to be at least weekly.

Is she feeling cold, hair falling out, more anxious, feeling sick? These are all signs she is becoming physically really ill and needs urgent medical attention.

Less than 500cals a day is straight to a&e.

The EDSUK fb page maybe useful for you.

Hennups13

I'm sorry it's so hard. I don't want to worry you further but the Camhs ED Team and Dietitian won't magically get your dd eating. They'll do her obs, give you advice and a meal plan and send you off to do the real work of getting your dd eating, that's if she's well enough to be at home.

That work has to begin now before your appointment because each day eating too little is going to make her more ill. If she's refusing to eat or isn't eating enough she has to go to hospital.

@Hennups13 You said she called her dad. What's his take on this? If she has a good relationship with him, could he persuade her to go to hospital? Also, I would check with the Doc that she has definitely been referred to the Eating Disorder Service (not generic CAMHS). If she is referred to the ED service you shouldn't have to wait more than 4 weeks.

I keep thinking life would be easier if dh just had an affair or something and left us. It can be exhausting dealing with him as well as dd. He's quite a needy person and can't seem to do anything on his own or without talking to me about it at length. Even when he's gardening or doing some maintenance work he calls to me to see what he's doing and 'Keep him company'. It's got worse since he started WFH as he doesn't have much outside contact. I've always been introverted and happy in my own company and need peace and quiet in between dealing with dd. I really can't be bothered with entertaining him. He mentions date nights and 'Spending time together' and I can't think of anything less I'd rather do. Is that awful?

No not at all Bagpuss that sounds pretty suffocating tbh, but then I'm a long term singleton as I find most relationship's suffocating!!

That's absolutely it. It's suffocating. Before covid we both worked outside the house and there were days we barely saw each other. He would often be away for a few days working. Now his work is fully remote and I'm caring for dd. I'm stuck here trying to keep them both happy and losing myself.

Sorry - I missed the new thread (thank you @Girliefriendlikespuppies ) I had thread 8 on my watching list and only realised today it was odd no more posts -and then clicked through and realised it was full. I'll catch up with posts on this one now...

Someone sent me this article and whilst I was aware of the mortality rate - this and the comments has really affected me - Mind Doctor MAX PEMBERTON reveals 'the night I realised just how deadly anorexia can be' | Daily Mail Online

Really need a handhold as reading this and the comments has scared me. We are doing FBT and DD has been discharged from the ED service at 106% wfh (although I imagine this has dropped a little now as school dinners aren't pushed onto her after her GCSE's). We remain vigilant, we don't (can't) weight - what else should we be doing? DD never engaged with therapy and says the ED is behind her - however she can still sometimes lie about food and leave a little on the plate.

She was restricting for twelve months before diagnosis, her organs were failing and we had to get to deaths door before she was admitted. She hated hospital and NG feeding and was sent home after ten days.

I have read that the best chance of recovery is when they are young (DD was 15 at the time) and the illness is treated within 3 years of onset. FBT feels to us like 'force feeding' and whilst it is a behavioural treatment, DD has had no therapy. The article refers to family therapy, DD probably wouldn't engage in that either.

I really want to know that I am doing all that I can and that i am not missing anything.

Nomoreplease23

I can't bring myself to read the article but just wanted to say you are absolutely doing everything you can. Your dd has done so well coming back from being very poorly and that's down to you ❤️

Moving forward and being completely rid of Ed thoughts is bound to be very complex and take a lot of time and I'm sceptical that they are ever completely free. However I think many do manage a normal life and over time the ED can be managed.

Therapy is really important IMO and my dd will also not engage but that's because she's just not ready yet. I keep gently pushing her towards it, sending links to articles and videos that explain what happens, and hope in time she'll be so bored of how small her life has become that she will feel the urge to get help so she can open her world a little.

Thank you @BagpussSaggyOldClothCat for reminding me that we are doing everything we can - it sometimes feels so futile and relentless and frightening. I always feel that there is something more we could do but there probably isn’t.

I agree with Bagpuss Nomore, I can't bring myself to read that article either but the fact you've got your dd to where she is now is amazing.

I worry all the time that I'm not doing enough or pushing dd enough, I was giving her the side eye today trying to work out if she looks slimmer than usual 😕

Dd had a head fit over lunch because I'd put too much Mayo on her sandwich and I only do that to make her angry apparently 🙄 after we rowed about it she ate it without complaint.

She had a pregnancy scare over the weekend which sent me into a complete tail spin, luckily she started her period this morning but I think I have a few more grey hairs now 😳

She has agreed (finally) to trying contraception and she has the patch to stick on. I'm hoping the hormones don't give her any side effects like anxiety or nausea (which I experienced on the pill.)

Honestly if I'm not stressed about one thing it's another!!

I wondered why the last thread was so quiet until I noted 40 pages means full and a new one has started (for which I didn't get notifications - lesson learned).

@Hennups13
How are things. I would take her to a&e if you haven't. DD went mental when I tried to do it so I call 999 (who were happy to send an ambulance if she doesn't get in the car). In the end, she got into the car, kicked the Dashboard in, tried to jump out of the car whilst I was driving, went berserk in the hospital car park. My arms were black and blue but we made it. She was managing 800-900 cals a day and her observation were so bad, she was inpatient for 3 weeks. Taking her to a&e is no over-reaction and they took us seriously.

I know had the guts to take her as everyone here encouraged me to go. I am so grateful for that support.

With EDs, there is a point when you absolutely cannot wait for a referral to come through.

On our front things are improving. She is eating better, mealplan increased (we also increased the olanzapine again and introduce setraline). Will have a meeting with school to discuss re-integration into school. Probs starting with half days.

Been lurking on this thread for a while. I am so sorry you are all going through this. I'm feeling pretty desperate. Our DD11 has been restricting for a few months, starting with cutting out "unhealthy" foods and now eating probably 800 cals a day. We're still waiting for CAMHS to give us an appointment. She's lost so much weight, her BMI is 14.5 now and she's skeletal. We just can't get her to eat any more. We took her to A&E last week and they sent her home. The GP checked her over and shrugged their shoulders. I don't know what to do. We're trying to add cream, butter, oil to foods where we can, but its not enough. I found her snack in her pocket today so she hasn't eaten that. She.paces constantly in the house, we can't get her to settle to anything. She's absolutely vile to me and her dad. Really unlike her, and I know it's not her but the ED and her brain is starved, but wow it hurts to hear such hateful words coming from my little girls mouth. I'm so devastated for what we've lost to this illness and I know we're only at the very start and have a long road ahead. I just don't know how we can do it, how you all on this thread have done it and are doing it. Where do you fimd the strength? She's slipping away in front of our eyes and we feel so powerless.

Hi granny I'm so sorry you've had to find yourself here.

First off do not be fobbed off by a&e or the GP, your dd sounds seriously ill. Can you join the fb group EDSUK as they have some useful resources on what to ask for in a&e.

Can you ring the local ED Camhs team? Look them up on Google, stress how ill she is and that she needs an urgent appointment.

Given her young age she should be a priority.

I would pull her out of school and put all your energy into getting the food in, have you started FBT? You make and prepare all the food and sit with her through three meals and three snacks a day.

It is hell but also necessary to save your dds life, you have to learn to tolerate their distress and completely detach from the hatred she will throw your way.

Please forgive me if this is a really crass request, but is this a place for the parent of a teen who is diagnosed with binge eating disorder and is quite literally eating herself to death? It’s been going on for five years now and I can’t get any effective support as our local CAMHS ED team is only NHS funded to take on anorexia cases.

GrannyRoberts Welcome and I'm so sorry you are going through this with your dd. You are in the right place for excellent advice and support. Have camhs given a time frame for an appointment? It shouldn't be long if your dd is restricting so drastically. If you are worried about her physically deteriorating please do not hesitate to take her to A&E.

Camhs will assess her and check her physically and give advice but you'll have to do all the hard work at home so you can start that right away with FBT. Eva Musby is excellent and I'd recommend her bitesize audios as well as her book. Sending you lots of love and support x

@Girliefriendlikespuppies @BagpussSaggyOldClothCat thank you for your replies. Yes we've managed to get an appointment with CAMHS ED for Thursday, bumped forward from 10th July. Although it's only a couple of days away it feels so long, and I know they aren't going to do the work for us. We've found Eva Musby and she is brilliant and agree her bitesize audios are so helpful. We supervise breakfast, afternoon snack and dinner. She has been at school and as we're in Scotland only has 1.5 days left. They have been checking she eats lunch, but she's been binning her snack. I just can't see how we actually get more food into her. We kept her at school as she wants to be there, and at least sits down at school. At home she moves, paces constantly and we can't stop her short of physically restraint, and even then she struggles so much she's burning more. She won't entertain smoothies, shakes, puddings, cakes etc. I just can't see the route through this, how we can ever get to 3 + 3, and the calories she needs.
On another note, her RHR has been low 50's a couple of times, and just now was 47.
GP not concerned...should.i be?

EmmatheStageRat

I'm so sorry about your dd and that you can't get help from camhs. That's really shocking to hear as she's obviously making herself very ill mentally and physically.

This thread seems to be mostly for those with dc who are restricting food. I cannot help you as my dd struggles to eat but hopefully someone will come along to help or to point you in the right direction. There is the teenagers board here which you could try.

I'm so sorry and I hope you find help for your dd xx

@EmmatheStageRat Sorry to hear about your DD. ED services are so shockingly overstretched, so I can well imagine there is little out there for any but the most immediately dangerous anorexia cases. I do know that Beat offer support for BED though. I've been on a number of their AN courses and they've been excellent - https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/binge-eating-disorder/treatment/.
@GrannyRoberts - So sorry you find yourself here. Are you sure that you have been referred to the Eating Disorder part of CAMHS - not generic CAMHS. You should be seen within 4 weeks of referral for anorexia. Don't be afraid to take her back to A&E. They can go down very quickly and that is a shockingly low BMI. And do get some support for yourself too. The worry and the vile behaviour (even though it's not their fault) takes its toll. Hang on in there.