Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@Raspberrysins My dd’s ED started in September 2023. I didn’t really get what was going on for a fair while. You just take it day by day. Things will improve. And I agree with Girlie about how little your dd should be moving at the moment. My dd is finally eating around about 3k calories, since her last relapse and she is very slowly putting on weight. I don’t have any say really in what she eats due to demand avoidance issues and having ARFID eating issues.

@Morereadingthanposting
Idk if your dd can access her emotions. You said she was restricting to 800 calories a day. If that’s the case, she won’t be able to, not properly. Things will be very black and white. My dd has definitely made progress on that front since upping her intake and gaining a little weight.

Are your dd’s friends able to help on the boy front? Idk what is happening with your dd. When dd was restricting heavily and got a bf for a while, her best friend, who is sadly now suffering herself, spoke extensively to the boy, so he understood. Dd just wanted a very compliant boy at the time, just so as to have a bf.

@Raspberrysins My DD was 74% wfh at her lowest. CAMHS said strict bed rest. The most she could do was go from her bed to the downstairs sofa. That was all she was allowed until she reached 80% wfh.

It’s really hard and getting 3k calories into a teen who doesn’t want to eat feels impossible. My advice is to tackle each day with the view to getting as much in as possible. For us in the early days 2000 was a win, we are now at close to 3000 and making small steady gains on the scale. My daughter is similar in that she eats her 3 means with minimal fuss, but struggles with the snacks as she already feels uncomfortably full. What’s worked for me is making the meals as calorie dense as possible - for breakfast she has two Belgium sugared waffles with syrup and a homemade smoothie made with a banana, frozen berries and double cream which is around 1000 calories. Over the last few months I’ve managed to increase portion sizes at lunch and dinner, adding a couple of slices of halloumi, onion rings or potato’s really makes a difference to the overall calories in the day x

I'm not sure mine has ever eaten upwards of 1200 consistently in their life
I'm in awe of all your efforts 😍

Where is your dd? Can you try what I did? It’s very labour intensive. IE just dedicate at least a week in the kitchen or near her, nudging her to grab something every snack time and meal time as well if needed. It may get her brain moving. Idk if she would, as you say she regulates to 1200 kcal.

As for your dd being an adult, will she comply with family meal times anyway if you ask? Idk if she’s living with you. We only manage 2 a week with dd. The rest of the time, she eats in her room or out with friends / friend’s houses.

No, fraid not, they're not around out of their room enough for that to make a difference, and even if they were the food might be taken to shut me up but it wouldn't be eaten. They definitely would not do something to please me, and if i mentioned food, they'd disappear. Adult services are so focussed on autonomy they are blind to risk

Sorry to hear that. The approach for all services seems so problematic, CAMHS included, as a you have to be able to engage. Dd was never diagnosed as she couldn’t engage.

It sounds like you have found a way through though. Must have been really tough

Yes, thanks, we are fortunate to be able to be able to use an ED coach privately. I don’t think dd would be alive without that. The coach said some time ago I saved her life. Dd had complete anasognosia and didn’t think she needed to eat to live.

@Raspberrysins just wanted to give you (hopefully) a message of hope in terms of recovery definitely being possible from such a low starting point. My DD (14) was 64% wfh at her lowest last summer, when we starting engaging with CAMHS. Admittedly this has taken two general hospital admissions and she’s about to be discharged after spending five months on a T4 eating disorder residential unit, but she is now 98% wfh and has had a complete personality change from who she was six months ago. It is so so hard though, and I am not expecting her return to normal life being straightforward, but she is keen to go back to school, and she is making choices about her future career goals, and is enjoying her hobbies again and is just all round like a new person. It’s just taken a few months to get her back.

So had our Cahms assessment this morning. I got her there which wasn’t a given, Been tough weekend- she was stressed about it all weekend, and dd1 who is also stressed about a levels was unhelpful in winding her up culminating in massive fight between them last night, most of which tbh I lay at dd1 door, though then when dd2 is wound up like that her behaviour is awful and unacceptable. Dd2 and I went for lunch after assessment- she was exhauste d and drained and quite mentally disassociated I think but also in quite funny cynic mode about the safeguarding questions “ do you have anything sharp anywhere in your house you could use to hurt yourself” “um, we have a kitchen….” Next step is the triage team decide if she has an ED or if she has eating issues triggered by another underlying mental condition like anxiety, in which case she gets bounced to a different team, and from what I can tell the waitlist clock starts again…

@SendTheNextOneIn I was thinking about you yesterday as you mentioned discharge after Easter. I’m so
plessed things have turned a corner. It was wonderful to read your update. I hope things continue to go so well. You have worked so hard and been through a lot, you deserve this positive future.

@Morereadingthanposting I am glad you managed to get her there. They are usually pretty quick at deciding whether they are accepting you into their service, I hope they are for you.

This whole 'do they have an ED' thing that the medical profession does really annoys me.
There will be a reason why the patient dropped weight. Over exercise, anxiety, body image, seeing some rubbish on you tube, competitive under eating, trying to stay 'fit' for a sport or conform to a body type for a hobby, sensory issues, extreme fussiness.
It doesn't actually matter why.
If the patient has serious weight loss and shows signs of disordered eating and ED behaviours, its an ED. End of.
And treatment is food.
Giving help with getting food in is the ED team's job.
Passing people between departments just passes the buck and delays treatment..
When it is a fact that the quicker the weight goes on (once physically safe to do so) the better the likely outcome..

If you think she has an ED fight for that support. With everything you have.

Quite and this is why we got an ED coach on board. Dd was wasting away and CAMHS couldn’t decide if she had an ED, disordered eating or something else. Meanwhile, I had no idea how serious this was and dd refused all medical obvs due to her medical condition. All I knew is she was cold and exhausted, emaciated, needing bed rest. And by the time they did medical obvs in A&E (booked appointment for her safety in case of needing CPR), I asked the psychiatrist if dd would be classed as moderate risk of death and she said yes. They still never diagnosed her.

As you say, the remedy is food. And it doesn’t matter which department deals with that, the treatment in the first instance is always the same. Once refeeding is established, the question should then be therapy or not.

All my daughter's anxiety was caused by trying to function underweight.
She gained weight and the anxiety decreased.
The anxiety can't be treated or therapised at a v low weight. The brain cannot process. Or do therapy work.
My DD at a healthy weight is unrecognisable from the child she was when walking a constant knife edge of malnourishment.

The private therapist dd has been seeing (which seems to be really helping) has emailed me today and suggested that in parallel to the work she is doing I get an adhd assessment….

Yep I totally agree with lots the only reason they try and pigeon hole the kids is to get out of treating them imo 😡 it doesn’t matter if they have anxiety or if they are trying to be thinner the treatment is still the same - food!!!

It completely ignores the fact that anorexia is a biological illness and the only proven cause of it is weight loss. Why they lose the weight is irrelevant really, the important thing is getting a plan to regain it.

Definitely don’t accept being passed to another service if that’s what they suggest.

How do you guys come to terms with the constant lying - mine, nor hers.

She’ll put on weight more easily because I slip Olanzapine into her evening drink. Despite the fact I have completely promised I won’t.

She’ll eat 1500 calories a day if she thinks she’s losing or maintaining weight, but would would stop or start running around the house again for 4-5 hours a day if she knew she gained.

I used to hide fortini and fortisip in her huel, but can’t anymore as she didn’t trust me to make it up for her.

she’s regained weight before, in Feb she was where she “should” be, but there was no magical restoration of logical thinking. Though, this time around, we now know she’s trying to be thin, so therapy might be more effective since we can see the battlefield!

@HappyRainbow123 I came to terms with concealing things from dd as I knew her brain wasn’t working properly. In the same way you might conceal meds if someone was schizophrenic or had dementia etc.

I made the decisions based on what was in her best interests.

I think you have to remember that you are not decieving your child, but the illness.
Seperating the ED from your DC in your own mind is very important imo.
I thought of the ED as a terrorist lodged in my DD's head. My sole aim was to piss it off enough, so that it left. By feeding my child. By whatever means neccessary. I hid food. She took olanzapine.
It is impossible to help someone recover from an ED without them metally suffering. But you are not causing that suffering, the ED is. And in some ways if you haven't upset your DC that day, it has been too easy for the ED to stay.
I am not saying I enjoyed the deceit and the upset 'I' caused my DD. But one has to be bad cop.
And we have to learn to deal with it all. You are saving their life. Actually preventing death, or preventing them living half a life which is the reality of trying to live underweight. Plagued by anxiery, insecurity, fatigue and chronic health issues.
My DD, who is fully recovered, explained recently that she was powerless in front of the thoughts in her head, and that it was only me being stronger than those thoughts, and the desire to be able to do sport again, that helped her get through. Thats why sometimes it is useful to remove school or sport or whatever. They need to understand they are ill, and have an incentive to fight the ED. Or a stronger reason to eat than the ED voice in their head. Although that still wont be easy, hence carers needing to be the constant voice to eat. Its not a punsihment to remove school etc, its a recognition of how ill they are.
And kindly if your DD got to a target weight and the thoughts weren't resolved after maintaing that weight, then the target was too low.
State not weight
My DD overshot her 'target' before she felt better, and has since probably settled slightly lower. But naturally.

Hi everyone, I'm finding things really hard and I just wondered how you all cope with the day to day? Is it normal to cry every day? I can manage at work, but when I'm driving home all I do is worry. I worry about the future, I worry she's not going to get better. Then we have dinner and it's so stressful. There is usually shouting and swearing, a few tears. Then she's sorry, and we hug. The cycle repeats. It's relentless and we haven't even started yet. I am so worried about our first CAMHS meeting next week. I worry she's going to have to stop school, I worry whether I'll have to stop working.. god it's horrendous. I wouldn't wish this on my worst enemies. And then, reading on here - I don't know if it makes it worse.. seeing people who are '5 years' deep in this hell. I can't do this for 5 more years.

@Raspberrysins it is shit, I would say when dd was ill was the darkest days of my life. It does feel bleak but you have to got to find that mother bear strength and fight for them.

If you can get signed off work, it’s one less thing to worry about and caring for an unwell child is a full time job in itself.

They can and will get better, yes it’s a battle but what’s the alternative 🫤

Oh bless you. It’s hard. Can you get some therapy? Get signed off work?

I really need therapy myself to help me process my pain and emotions. Idk what I’d do without it. And it’s ok to cry. Do try to do it when you’re not with your dd as she needs you to be strong. It’s great that your dd is still so connected to you. Mine is a very angry anorexic and projects her feelings onto me, taking it all out on me. So the more she restricts, the more nasty she become and is then absolutely vile.

Thanks both.. I think I am just consumed by it all right now.. perhaps because it's all quite new. I dread the idea that we will have months or even years of this relentless battle. Yes I could get signed off work, but I don't think it would do me any good actually. I am a full time teacher and it's exam season soon-however, if she's removed from school then of course I'll have no choice :(

Thanks for the support. What a horrible club to be a part of