Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

I've tried food or hospital and we go to a&e to wait and be sent home. It's a hassle but she'll put up with it to avoid eating. I don't know what to do anymore, I feel like I've lost all control and the whole family is being dictated by AN. Today was just over 900 calories, when really by now we should be over 1000. Nobody has been checking up on us since the meeting on Tuesday.

@lyriccat so when we are discharged our plan is to keep DD out of the meal prep, and no bargaining at all
It sounds for you like ED is taking that power and control lately so some form of re set may be in order. It does sound difficult and I know you're worried from the lack of calories - we were having lots of 300-500 per day for weeks before admission and some zero days and her obs were still good!
She's done almost 2k today in hospital
I had to really really really push for my admission - kept turning up at a&e it felt and as much as it's not the right place for us on this ward it has definitely re set my DD and after 8 days the other week and 8 days again now she is wanting to come home and agreeing to the meal plan. Whether we relapse is another story and as much as our admission wasn't right in so many ways as you know as you've been so helpful replying to my posts, it's sometimes what's needed and we are in a better position than we was now when DD was on food strike
Although her obs were good I told the drs I didn't feel safe with her at home with me and could drop any minute - and that was the truth. I said I believe her intention was to die and I still believe some aspect of that
Also the ED clinic was advising me to go so it gave it more power
But as I say that's just my experience
It sounds like you definitely need some help x

This is such a good idea - I am definitely going to do this when DD is home

Another thing that stands out from your thread is just something the dietician said to me today about smoothies - they are fine as additions but she advised against them as the main meals. She said it's a strict 3 meals a day and 3 snacks until she can get to a safer level and then and only then can she have flexibility
Same as sweets and caffeine - she can only have them if she's complied with the meal
Plan, not eating anything else she fancies if she hasn't stuck to it

Lyriccat** I honestly think your dd is too far gone to recover at home. You should be ringing the team every day and demanding they section her. I'm sorry but at such a low wfh and with your dd still controlling what you can and can't give her you stand no chance of turning this around at home.

She should not be given any choice, what you decide she needs she eats 🤷‍♀️ I'd also want daily bloods and daily ecg, it is not physically possible that her vital organs will not be is serious trouble right now.

Dd would constantly tell me she wouldn't eat whatever it was I made for her but I made it anyway and she had no choice, she had to eat it. She was strictly kept away from food prep and the kitchen was barred.

As parents we do have a lot more control than we realise, I think when I realised this it was really empowering.

'You absolutely will eat this, you have no choice'

'I'm sorry this is hard for you but trust me you have to eat this'

'Once you've eaten this we can <some fun activity>

'You can scream at me until you're blue in the face not eating is not an option so you might as well get it over and done with'

'Just fucking eat it' 😉

I said all of the above on repeat for months!!

@lyriccat I feel exactly the same and I do think you should shout and scream until you get somewhere

It's a new day today - why don't you yell DD you have a ' new plan ' and that starts with
X,y & z and id she doesn't do it then it's off to a@e and insist - insist like I did.
Tell them you do not feel you can cope at home, it's not safe and you do believe her intention is to die....I know that sounds dramatic and awful but it wasn't until I used those words and cried I could tell by the look on the drs face that he knew I wouldn't be going anywhere

This isn't a quick fix and as you know my DD isn't in the right place and she isn't home yet BUT she's getting 4 hour obs, every 2 days getting bloods and she got this for one week
And she now has to do 2,500 calories in her meal plan. I would take drastic measures and take action - I know it's not easy but we are all here for you, all behind you and if I were you I would take her 1st thing
(Evenings are awful at my a@e and I found the mornings so much better )
If anyone else going through this / been through can add some words of advice then please do...take a stand and fight for your DD. I sent an email to the ED crisis team daily and they did call me back eventually
I know we still have work to do but DD is in a safer place than we was
I kept saying and repeating
My daughter is in crisis
Just because her obs are ok she isn't well
She needs help
Sometimes it's worth taking a huge step and sometimes feels like it's backwards but honestly from this time last week my DD is in a better place
This could be you......

How many calories approx is she having a day? 83% is low although how ill they are at any wfh does seem to massively vary.

An abnormal ecg should be ringing alarm bells, low potassium is very dangerous.

I would advise starting FBT which is the main treatment for restrictive EDs. The parent takes full control of all meal prep and they have to eat 3 meals and 3 snacks a day, ideally high calorie, with a view to gaining a kg a week.

I advocate blind weighing as my experience was that dd could not handle knowing she'd gained weight.

A pp mentioned the ED team do not praise any gain - this is really normal. It seems counterintuitive but you never, ever tell them well done for eating/drinking/gaining weight. This is because in their unwell minds it can be interpreted as 'I'm failing' 'I'm greedy' 'mum didn't expect me to eat that and now I have what a pig'

Ideally no comment should be made when they're blind weighed, I perfected a poker face. The deal was if she has a loss the meal plan would be tweaked slightly but a maintain or gain was never mentioned.

@Girliefriendlikespuppies thank you. She's averaging 800 to 1200 a day. But I don't see her eat all of those calories, so if she's at school for example and doesn't ear lunch then it could be 800.

We've got the ED clinic next week so hopefully they'll offer support for FBT.

Can I ask, does anyone's child have an EHCP? And if so, do they have support with eating on it?

@Glitterfarti we have weekly FBT where DD is weighed and they told me they look at the trend line, up to 3kg can be fluids, been / not been to toilet, periods etc, so not to worry about ups or downs as long as the trend overall is up. That said I still worry if the scales suggest she has lost weight. Luckily for us our trend is still up, slowly but still gaining.

@Propermadam we don’t have an EHCP but our ED team were happy to speak with school about requirements for supervised snack and lunch. We didn’t actually get school to supervise as DD hated the idea so agreed as long a there was weight gain once she was back at school full time she didn’t have to do that.
Anither thing which helped us once back at school (and sounds like your DD is in school) is school agreeing not to give punishment for lateness as our DD would often take ages (due to resistance) to get thought her breakfast plan so she didn’t go to school until it was eaten meaning she was late. Some days she didn’t make school due to some level of meltdown at breakfast. There are also parents on here (and others who I know from local ED parents group) who meet kids for lunch (sit in school car park and have lunch in car) to ensure it is eaten.
school should be able to help, but much like ED support generally I think it’s all down luck how much support you actually get.

@NotAllGood she gets lots of flexibility at school which is wonderful. But they can't support her eating. I have been sitting in the car with her, but because her school takes an hour to get to, it's meant they I've had to spend all day every day in that town, just to feed her. I've had to give up work and I can't find flexible work there to fit in.

@summertimessadness24 @Girliefriendlikespuppies Thank you both for your meaningful advice. I emailed the team on Friday to ask for their advice and no reply. Now it's the weekend I won't get any contact, but first thing Monday I plan to email again. We had a talk last night which revealed DD is much more concerned about body image than I thought (sounds obvious being AN but I've always seen it as her way of control rather than to influence her shape). She says she feels overweight if she weighs anything over 42kg. When she was at a higher weight, 46kg (still only 85% wfh) last year, she felt constantly fat and wanted to 'cut all the fat off her body' every day (her words). I understand this is a result of the illness but I can't help feeling ashamed my DD sees herself this way. At 85% wfh she still looked so slim to me, I didn't think she couldn't see herself the same way. I suggested to her in the future she could start therapy centred around body image but she says she doesn't see how she'll ever feel 'not fat' if she gains weight, that she thinks she only looks 'normal' now (she's 58% wfh 😢). Sorry to vent here but I still feel so upset about it.
Today's food has increased a bit. She had some ready-brek this morning, soup for lunch and a hot chocolate this afternoon (she chose to have 1 marshmallow with it- the smallest win but I was so pleased).
I've told her if calories decrease at all we are going straight to a&e.

lyriccat,
So no expert but body image is discussed in CBT-E.
Not sure how to link it or copy and paste images....Hope this works

This is exactly how my DD feels about her self - she doesn't want to gain any weight and feels exactly how you have described
It sounds like she's had a good day and long may that continue. X

I think the obsession with feeling fat over a certain weight is normal sadly and partly why dd had to be blind weighed. She told me she'd kill herself if she went over a certain (very low) weight and I can remember feeling terrified when I knew she'd hit that weight and she didn't.

Now she's much better and I have no clue what she weighs but she fits a size 10/12 which feels and looks about right (she's tall 5ft 8in ish).

Yay for the one marshmallow! We went to the beach today and dd had a hot chocolate which has been one of her fear foods but wouldn't have marshmallows as they're not vegetarian 🙄

No ECHP. We had meal support in school given by school for snack and lunch but school have scaled that back massively due to staffing issues. She has some supervision for lunch only. If I could, I would drive to school to school but I work. Her weight is going south at the moment ; we suspect she skips meals in school

My eldest has an ECHP but she has complex learning needs and ASD. If the only issue is eating, you won't meet the threshold for an echp I think. The hurdles are really high to get a plan these days.

I think in theory, school have to fund the first 6k for additional support outside and ECHP but that isn't something which is legally enforceable unlike an ECHP so we are stuck in getting support for DD.

Is anyone else well versed on the legalities of providing meal support in a school setting?

Thanks @Curlyhairedassasin she does already have an EHCP so I’m looking for an emergency review.

Do you mind me asking if this is for the ED alone?

If she has one, I would also call an emergency review too. I wouldn't imagine it is too hard to include the meal support if you already have a plan in place.

Sorry. I’ve been lurking on this thread for a while and your Dd sounds like how my DD was. Please get her inpatient help. She can’t do it at home, she sounds way too far gone. She’ll convince your of every reason not too send her away but the longer AN has hold of her, the further away a full recovery will be. My DD is all grown up now in her mid 20s and they labelled her a chronic case a few years back. Sending hugs, it’s not easy to make big decisions like pushing for inpatient (especially when you hear a lot of negatives) but it’s pretty much life or death.

She’s autistic and has associated mental health problems. Was depressed, anxious and self harming. But eating wasn’t an issue when it was put in place just last summer. She’s now at such a good school and I don’t want the placement to fail.

We've managed around 1,700 calories today and 1,950 yesterday ( some things were forgot throughout the day today so count was a bit less )
So it's day 3 of actually eating food
Unsure when she is coming out but no one as mentioned discharge
It's annoying when they do forget food or give her a choice etc as at home I will
Be able to follow the plan better
Just get told she isn't in a ED ward 😳
Bloods and obs good and no weight loss so think she should be able to come home soon
She's eager to but she was last time then relapses after 2 days and went on food strike
We have 3 visits a week from ED clinic now and a dietitian this time around so think we have adequate care
Will have to see how she gets on as guess
We won't know til she is home

My DS has an EHCP but it’s a bit useless really. He doesn’t even attend school and no one seems to care. We’ve had a review and an emergency review but nothing has changed. The focus is on finding him a suitable college place for next year which is proving impossible - the one place identified as potentially suitable we’ve just been told has no spaces available. He’s not going to get a single GCSE but that seems like the least of our worries. Eating is getting less and less.

@QuestionsAndAnswers123 Thank you for taking the time to reply. I'm sorry to hear about your DD but so glad that she has progressed in life and is hopefully better now. I do feel like my DD needs inpatient care too, and this thread has definitely reassured me. I can't call our ED team but I will be emailing first thing Monday.

My DD has said just the same thing- it makes me so scared, especially as she had always insisted on seeing her weight. I'm hoping if she ends up inpatient they will insist on blind-weighing, I think that would be the only way out for her