Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

That's reassuring to know, nan. anorexia seems to get more and more hold of her every single day. But I think she will need it. Is getting an NG tube fitted very traumatic? And bad enough to act as an deterrent? She absolutely doesn't want one. She had one when she was a toddler and ill and it took 3 people to pin her down. I couldn't imagine how they do it to her now unless the sedate her 🙈 She is still incredibly strong physically (at least when she has her outbursts and lashes out etc.) and will put up a massive fight.

My DD accepted the tube for about a year - which makes it far less traumatic. Drinking water while it goes down helps and the nurses were very good. What she hated about it was the calories going down - she did for a while sometimes go for the NG rather than a particularly challenging foods as then (in her AN brain) it wasn't her "fault" that the food was going in - so the hospital said if she didn't eat or drink the Fortisip, then they would give 1.5 times the equivalent down the tube. That made her accept the food / Fortisip instead.

After Christmas, she started refusing the NG and then she did have to be held down by a special team - this was very traumatic, but the worst thing for her was still the calories going in, and she would scream that they were giving her too much or making her fat. But that was her 7th admission, and isn't by any means typical, so don't worry about that yet.

I am so sorry nan, that your DD and your family has such a difficult time. Can I ask how she is now and what happened after she refused the NG tube. Do they even have a choice?

@Curlyhairedassasin I'll DM you.

Thanks Nan, I have to get my head around the advance prep bit.

SunnyFog

I also do a lot of batch cooking. If I'm cooking from scratch I always make sure I do at least one extra portion for dd for the freezer. We have a weekly meal plan and I do all the food shopping online which I find a lot easier to manage.

It's very regimented and boring but it takes the stress out. I do long for the days when I would just open the fridge and decide on a whim what to cook!

...when you open up to a good friend who then tells you it's no big deal as they grow out of it (DD is inpatient and probs gets an NG tube today as she is so unwell).

Is that what people think?

It's an awful thing to hear when your child is desperately ill, and yes I've heard it a few times mainly from the older generations who 'didn't have all this mental illness in their day'.

I hope you're OK Curly.

Aw Curly sorry to hear that.

There is a general misunderstanding about AN. That it's all about dieting and body image and social media. And that it's a phase. When AN is a complex biological based brain illness brought on in those with a genetic predisposition by weight loss (however and whyever that weight loss occurred)
It is true that unless you have been there as a sufferer or carer you can't really get it. Nor it's seriousness.
As you have discovered with your DH even some parents struggle to accept the reality.
So whilst not excusing your friend she may need some educating...
That's why I found these threads and my BEAT on line support group so important.

so true, Lotts. really glad I found this group's and I found a local mum through a Facebook group who is a massive support too. Weird how strangers we never met can be one of the biggest source of support. What did people do before the internet??

Curly there's a lot of ignorance around anorexia and I think until you're in the situation of caring for a child with anorexia you just don't get it. I've had people tell me to ignore dd as she's doing it for attention, she'll grow out of it, it's a phase, they didn't eat properly when they were a teen but they're okay now...

I think people think they're being reassuring without realising how ignorant they're being.

I hope you're okay curly the ng feed is a good thing as it shows your dd that she has to eat, ideally they'll put more down calorie wise in the tube to encourage your dd to eat the food instead.

Yes I really feel for carers who had to deal with this before the Internet, Curly. It's such a complex illness that we often need daily support and advice from those who have gone through/are going through it. Also hearing the stories from those in recovery and what worked for them to be able to recover is a huge benefit. I couldn't imagine having to rely on books and camhs appointments alone. It must have been very lonely and frightening.

Where do you even go with that? Presumably a misguided attempt to comfort you. Don't let it stop you opening up though. We all need support with this horrific situation. I've found this group really helpful, as well as the support of good friends. I've also called the Beat helpline and even the Samaritans on occasion. Also - I'm not sure where you are in the country, but 10 free counselling sessions with Talk Liverpool probably stopped me tipping over into depression.

She ate the hot dinner without fuzz. Just needs to manage supper a bit later but looks like for now, we avoided the Ng tube. No idea what made her eat but small step into the right direction. the first full hot meal in many weeks.

Great news!

supper (toast) still to come and she is screaming now she won't eat it. I hope this was just the post dinner stress. She is always stressed and irate after eating. Hopefully will have calmed down by supper time.

Are you doing some distraction work immediately pre and post food @Curlyhairedassasin - playing a game - bananagrams for example is good for diverting their brain - they have to concentrate on spelling the words etc. Or doing some drawing if she 'feels' her anxiety in her hands etc..

Awesome news, @Curlyhairedassasin ! Hope this is a turning point for her. Following on from @myrtleWilson 's advice, DD also has found a useful distract during meals to be eating with headphones blasting loud music.

It's interesting because when dd was in hospital they said she needed to focus on the food. TV had to be turned off.

That is interesting @NCTDN - when we had meal support at home, she was very much - pre food have a distraction, during food- have tv/radio on and talk constantly, post food another distraction.

I remember never having watched the bbc news channel as much in my life before (it was easier to keep up the constant talking if we were discussing news events - we were well acquainted with Ros Atkins before he became famous!)

So tomorrow @NanFlanders and I are descending on London (am not sure if @WhatHo is able to attend now) for the Eating Disorders march - phone battery permitting I'll take some photos and share on the thread.

We'll march for us all!

Thank you @myrtleWilson I wish I could join you

Have a great day together ladies ❤️ and thank you so much for helping to highlight this hideous illness and the shocking state of treatment for it in the UK.

Good luck for the March ladies! I'll be there in spirit 💕

We are here! Glorious day and expecting around 600 people