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.

Oh and I also found she had been looking up calories from what she eat at nans! All in her search history, so do I now take away her phone completely? I've got rid of all the sm apps so she only has games however she has Google

@summertimesadness24 she needs to know that she can't continue with 900 a day even if on complete bed rest.
I'd be taking her phone I'm afraid.

Summer id definitely take the phone, that helped move my dd in the right direction initially. You can put restrictions on Google searches.

I would be very clear with her that if she wants a 'life' ie anything more than lying in bed/on the sofa day after day she** has to eat. I think you need a more robust plan from the ED team as well as this is going to end up in crisis unless you can significantly increase how much food your dds eating.

Glitter I hadn't twigged your dds v young age, that's even more shocking you're not getting help. How much food is your dd currently eating?What happens if you increase the portions?

I think I will today - and bed rest
She's was sitting at the table singing and just playing with the cereal spoon
Not touching it

I agree I'll ask the clinic what's the next steps because she can't go on like this
She goes through stages of eating the minimum and then she just refuses

@glitter I'm so sorry. This is awful for you, your frustration at reaching out for help and being ignored must be through the roof. I feel so angry on your behalf

Summertimesadness24

I would get it out in the open and ask dd if she has a calorie limit. My dd's limit was 1000 a day when I discovered the ED. It helped to see inside her mind to a certain extent and gave us something to build on. Her first meal plan from camhs was 1200 cals which she agreed to and with added fats it was more like 2000. After a few weeks of her brain 'recovering' she agreed to a 1500 cal plan. We sat down and wrote our own meal plan so dd knew exactly what she was eating each day so there were no surprises. It was less of a battle when she felt she had some control. Nearly two years on we still use the same plan as dd is comfortable eating that way.

Your mum's method of getting dd to eat sounds like something you could build on. My Dd hates any attention on her while eating. She gets dinner put in front of her, the TV goes on and we barely speak unless I need to say 'keep eating please'. It's a very boring routine but it works.

@summertimesadness24 that is a terribly low intake and your DD sounds v much in the grip, I would take her phone away

Should also add my dd was 16 when she got ill and she was used to some independence and had been left alone a lot to cook for herself, so I found it better to work with her. With younger ones it's probably easier to take full control as they've not had much taste of independence yet.

@summertimesadness24 is there any way your mum could come to your house to support at mealtimes? Things will go downhill very quickly unless you can get her out of this pattern of eating the minimum and then restricting to compensate for eating. Thinking of you and everyone else struggling at present

It's the fact that at my nans she doent have her meal plan, late night, horror film, shopping trip! So it wouldn't work but a great suggestion x

She's not has any calories since yesterday lunch time
Breakfast and mid morning snack refused but she has drank x

Yes I agree
She does have contact with her dad though so she would be sad about that

This is a good suggestion
I will talk to her about this and we did the boring no tv but because that didn't work we introduced the tv
But I think we have to step it up

I've just asked her and she said she has no goal, doesn't matter if we set it to 100 or 1000 she just 'can't' eat

Feels like I'm sitting waiting....but I've emailed the clinic

summertimesadness24

Oh I'm sorry. It's very difficult to negotiate at all with 'I can't eat' 😔
You are facing a brick wall and each day the ED is getting more and more entrenched and her physical health is at risk. You really need help asap. Are you able to phone the clinic? Emails can take ages to get responded to. Otherwise it's another trip to A&E and you must dig your heels in and refuse to take her home until she is given the treatment she needs and deserves. I really think she needs to be admitted at this point.

So do I but last time the nurse was quite rude and said what do you expect us to do
The previous time was better
The nurse at the clinic is usually good and emails back but I'll see
Our a&e are not equipped to deal with this
I know I'm not either at home
But even the nurse said go to a&e if 500 calories over 5 days but she's had nothing in 24 hours
I'll see if she eats lunch
It's exhausting

So sorry you were treated like that and please don't be put off going again just because of one nurse's ignorance. Eating Disorders are very misunderstood even amongst health professionals. I can't understand why because Anorexia has the highest mortality rate of any mental health condition, and sadly that includes suicide 😢. It needs to be taken seriously as the earlier the intervention, the better the outcome.

Show this at the hospital if not taken seriously www.nice.org.uk/guidance/ng69

They said they wouldn't admit her as her bloods came back normal as did her ech and her obs were good 😩
They did give her a drip for iv fluids as she was dehydrated then said to follow up at the clinic

Summer The worry is she's saying she can't eat and at some point she may go full refusal and at already low weight that's really dangerous. I'd already be insisting she keeps the bathroom door opem while she showers of bathes so you can keep an eye in case she faints. Have you been offered fortisip as some find it easier to drink calories? Or you could suggest a smoothie or a milkshake that you can add cream to. My dd liked Yop drinks and I would add double cream to those.

So she is saying she cannot stomach a thing.....nothings touched her lips today and since yesterday afternoon - just water/squash

I think I'll just have to take her in

She won't touch milk/yogurts drinks
It's almost like she's refusing everything

Did the clinic respond to you @summertimesadness24? It sounds like you're in crisis and she needs admitting the ed really has a grip on her and the longer it goes on the more at risk she is

@summertimesadness24 do you have a crisis number to contact within your ED team? If she can’t / won’t eat she will go downhill quite quickly.
@Glitterfarti could you ask to see a different GP, I think lots unfortunately have no idea about eating disorders, you’re clearly not getting the help you need, which feel horribly unfair. I’m not sure the therapy for anxiety she’s had will help as she probably needs to gain weight first. Sorry I’ve not read the whole thread could you get her school to support you with a referral (maybe safeguarding lead could help) I’m clutching at straws but thought worth mentioning.

Has anyone's child reported 'the feeling' they experience whilst eating at other times when not eating? Ds has had a rough day, meals have been tough and he has had the feeling he gets when eating during lessons throughout school even when no food was involved, he said it was so strong he's struggled to concentrate and barely managed his work. He looks completely worn down.