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.

Hi @Camera0bscura sorry you've found yourself here, hope you've had a better day today. Have you seen Eva Musby's book and website? She has some good resources to help parents work out what to do and say to get their young people eating the 3 meals and 3 snacks. How old is your dd?

Hi @Camera0bscura There will be people with a lot more knowledge than me along soon. I’m sorry you and your dd are suffering. My dd would never have followed a meal plan either. We are having to do a more soft approach and treating her as though she has autism and pathological demand avoidance. She started off only eating about 400 calories a day, 500 on a good day. Have you spoken to the charity BEATS or had a look at their website. There’s lots of information on there about help and how to tackle this. How is your dd in herself and is she eating and drinking atm?

@Camera0bscura

welcome to the ED world and the best support group.

We’ve been where you are, it’s a worrying and upsetting road ahead. But it DOES get better.

Meal plans are never easy. None of it is unfortunately , it’s scary and very upsetting. Your referral will assess your DD and should get the plan in place for supporting you all.

My DD hated her meal plan, they are not supposed to like it or the many people that will try and help. It wasn’t her, it’s the disordered brain that makes them behave in a way that you will not see coming till it’s challenged.

Eva Musby and BEAT are a good starting point, knowledge is power in helping your loved one fight this illness.

8 months since our lives changed, it’s been a massive rocky journey that I can honestly look back on and feel so proud that she is now fighting to get her life back. Good days pretty much outweigh the bad now, but that doesn’t come easily.

Hi welcome, we've all been where you are now.

How old is your dd?

My dd wouldn't follow the meal plan so I designed my own based on what I thought I could get my dd to eat and foods I could add calories to!

If she's eating less than 500 cals a day I'd take her back to a&e as she may need admission to get the feeding plan started.

Eva Musby is useful for practical advice on getting them to eat and understanding what's going on in her head to stop her eating.

Hey, how is everyone? I’ve not posted for a while but I’ve been trying to follow. My own mental health took a bit of a nose dive but I’m not doing too bad right now.

DS did start to increase his intake to avoid hospital and gained almost 4kg at which point he freaked and is now back to restricting himself to one small meal a day. He is refusing to increase as he says he would rather be dead than fat. How he thinks at 46kg he’s anywhere close to fat is beyond me.

Hi wooden does your ds know his weight? My dd had to be strictly blind weighed for this reason. She also said she'd rather be dead than gain any weight 🫤 it was when she said that that I thought 'well you can't know your weight then as not gaining weight isn't an option'.

We're okay, dd still doing well atm, seems to be actively challenging herself food wise which is brilliant.

Hope everyone else is doing okay?

@Girliefriendlikespuppies he didn’t know until he went to a family members house and they had scales in their bathroom so he weighed himself.

He wasn’t actually blind weighed previously but he weighed in kilograms which he doesn’t understand. He only knows stones and pounds. He’s not been weighed by ED team for about 8 weeks as he’s been refusing all observations. Now he’s back restricting they will start coming to the house for observations again.

@WoodenTrain I have wondered how you are getting on. Oh gosh. Bless him. This is such a cruel illness. How is your ds in himself? I take it he has no energy.

My dd is doing better atm. Still absolutely vile to me most of the time. She has put on a tiny bit of weight and has spent 10 days with a friend and her family, who know a lot about anorexia so could care for her appropriately. They are a really amazing family and have helped her to eat more, a lot more actually, including tasting a few forbidden foods. It was scary letting her go but it was the right thing for her. Still no diagnosis, which is annoying and CAHMS want to do an extended assessment. Idk if I’m going to be able to get dd there. My chronic fatigue is really not great atm.

Was wondering how everyone is getting on, thread seems a bit quieter, so I envisaged lots of little boats in this storm.

We had another ED assessment, she said she would call back last week, obviously didn’t and I missed her call on Monday. Hoping to speak to someone tomorrow, so still treading water with no idea if they’re going to say her persistent low weight is ok or if she will be diagnosed with what is increasingly apparent to us - she still doesn’t say she thinks she’s fat, but thinks she eats much more than her friends or sister, and admits she hates the way she looks.

Oh no wooden this was always a fear of mine, I used to scope anywhere we went for scales, I even followed dd around in Pets at Home incase she got on the pet weighing scales!

I would keep pushing him, my dd definitely took a massive step back when she discovered she'd gained weight but we did eventually push through with much screaming

Now dd is (almost) recovered she accepts knowing her weight is not useful and asks to be blind weighed by medical people (she had to be weighed when she went on contraception.)

Nice to hear from you @WoodenTrain 4kg is a good gain, I hope you can persuade your ds to stick to the meal plan and not restrict again.
We're up and down, last two weeks at school were very busy with sport so we've lost 700g, I'm pushing to get that back on pronto. Ds is disappointed he lost too. We're challenging lots of fear foods (the final ones I think)so we're back to shouting/crying. Ed team are pretty certain it's anxiety with some an behaviours due to the extremely low weight he was, these behaviours are reducing but some are hanging around- crumbling food & always trying to leave so much. His mental health is good, I feel he's in a good place, chatty, sociable, happy and engaging. I use his friends & sport to help challenge those tricky foods.
We also blind weigh as we aren't sure what triggered this exactly and I sometimes wonder if the team keep saying anxiety due to his age and don't want to say it's an. Such a complicated illness.
I hope everyone is managing and the new members are supported.

Still in the ED shit show here! DD not gaining weight, but everything else is good, she eats three meals and all her snacks and is in an excellent mood. I’ll take not losing weight…..pretty sure she is built the way she is…..tall and skinny. CAMHS have decided she can be discharged in September when she goes back to school. The conveyor belt is clearly busy and they have done their bit!

The model agency agency would like to sign her, but she has to gain weight before they will do that, which was a relief! The ball is firmly in DD’s court, I am waiting for it to be batted in some direction and then will deal with it.

Nice to see updates from you all x

Access denied, again. ED team think we should seek an assessment for autism, like that will help her gain weight, in however many years that process takes.

I just don't get this. How is this going to help? My understanding is that EDs are more common in the autistic population. DD is on the waiting list for an ASD assessment and everyone involved with her is sure she will get a diagnosis but ED team still treat her. It's still an ED. It's not a binary thing. You can have both. can you complain to PALS? You must be so frustrated esp as the waiting lists for ab ASD assessment are many years long. Do they suggest you wait? I think I would go via PALS as a first step.

Sorry to hear that @Glitterfarti

We don’t have an official diagnosis of an eating disorder either. They wanted to do an extended assessment but he didn’t engage so at the end of the assessment period they said they didn’t feel they had enough to diagnose. By that point he was following the meal plan-ish so it was decided to leave him be with fortnightly observations which he also stopped engaging with.

I guess it’s difficult to know what’s due to his autism, what’s due to low mood (which pre-dated the food restriction), what’s anxiety, and what’s being driven by a potential eating disorder.

The ED team has been very much involved throughout though which I’m glad about as regardless of diagnosis or not the most pressing issue right now is getting food in him.

Thanks @Curlyhairedassasin , they are just adamant it’s not their problem. She even said “she hasn’t lost weight” (she has, but has stayed 80-86% wfh over the last year so that’s stable according to them).
I guess they’re the professionals, they must be used to children lying to them, but they say she has no ED cognitions and don’t listen to the ones I tell them about. They say we have to carry on with the MEED percentage recommendations and go down the autism route but our jobs will not accommodate wfh or short days (so we can pick her up at lunchtime) without a diagnosis, because we’ve been doing this for a year and NOTHING HAS CHANGED.

I just feel so flat.

Aww glitter I don't get it either, I'd second complaining via PALs.

My dd broke down last night, she's had a tough week and has been pushing herself a lot more with food. She had a day out earlier in the week with a friend who also has anorexia and that was not helpful 😕

This illness is so shit, dd said it affects everything, every single aspect of your life which is true.

I feel so sorry for her but helpless at the same time, she doesn't want therapy and or to read any self help books so it feels like she's very much stuck at recovered enough to be okay ish but not fully recovered 🫤

@Glitterfarti can you request a second opinion as part of Martha's rule?

www.bbc.co.uk/news/articles/cndd41p5g82o#

Thought I'd quickly check in, haven't been on here much and I don't really know why. Things have been very up and down with us. The knock on effect on the family has been enormous and we are really struggling.

Things are about to change as I am about to go down to part time as DH is going back to work. DD relies on him so much and is terrified about the change. She knows I'm a bit more boundary driven and she won't be able to get away with as much, and I am determined to push things a bit because in September she is meant to be going back to college. But college is triggering because the last time she was there she was in depths of starvation.

She's had several enormous meltdowns. There were points where she was utterly hysterical, and I don't mean that lightly. The worst was on Wednesday evening when a series of minor things happened which ordinarily you could put down to normal family life but she saw as a series of disasters, and that led to her storming to her room. We wouldn't normally leave her but we both felt that she needed space and to not have us fully on hand at every moment. When I saw her yesterday, her forehead was red and swollen. Initially it looked like she'd picked a spot but when I sat next to her I could see it was bulbous. We were in the waiting room for her therapy appointment, her counsellor saw straight away and asked about it. Turns out she had punched herself around 100 times. (we are taking necessary steps to keep her safe following this in terms of head injuries)

This is the thing that has broken me tbh. I can talk her down from the panics about food. And there's so much tied up in this so I won't go on and on about it.

Just wanted to raise my hand and say hi - this is still so utterly shit and have a virtual group hug with you all.

@SicilianOrange
I am so sorry. I hope your dd’s counselling helped.

@Glitterfarti
I have a feeling we are likely to be in the same position. Dd has an enhanced assessment booked after getting medical obvs just over a month ago. She is now eating more, a lot more and has put on a little weight. So I don’t think she will get a diagnosis now albeit she should as her eating is very disordered and she was seriously restricting. Idk if they will refer her onto an assessment for autism. It’s so frustrating and complicated.

How do you do this?? I'm broken. Won't eat anything on the menu plan

Today has eaten five apricots and a biscuit and for dinner pitta bread and tiny bit of sauce

I hate this illness so much

Everyone is arguing and crying and I can't cope

Hey @H0WDOESANYONEDOTHIS - I am with you. We are on holiday and having a really stressful time.

It's just an awful kind of life, I don't know how anyone does it. I hate this, and I can't see any way out.

From what I read from recovered people, there is a kind of switch, a decision that they don't want to do it any more. My dd is very far from making that choice as far as I can see. I'm really in the mood to run away.

Hope your evening has been a bit better xxx

Hi I'm really sorry to hear you're struggling, how old is your child? And what's their wfh?

Food refusal can be challenged in a few ways.

You plate the food up, put it in front of them wort the expectation they will eat it.

You can either wait it out (depends on how much patience you have!) or time it for 45 mins.

If after 45 mins it's not eaten you could offer a meal replacement drink (ideally at more calories than the meal).

If you still get refusal, plate it all up and bundle them with the food into the car and drive to a&e.

Hopefully they will eat but if they don't see it through and get all the medical checks done.

Use whatever leverage you can, their phone is the obvious one but anything you can use to encourage them to eat is okay.

When they are eating distract distract distract, any which way you can, Tv, games, music anything to take their mind off eating.

Do not discuss the food, do not bargain with them, do tell them they have to eat the food - they have absolutely no choice in the matter, they can trust you.

It's hell but you can do this, the ED is a terrorist and it's holding a gun to your child's head. The only person who can take that gun away is you.

@Girliefriendlikespuppies so much more helpful!

Thank you. Yesterday was not a good day. We are only just starting with all this so thank you for the advice.
Dd is 15. I am so scared for what lies ahead