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

Hi all.

I've been awol for a while just muddling through -DD has generally been doing ok, I feel like I haven't been pushing her hard enough in some respects but I'm back at work full time so just been trying to keep going. There have been down moments but she's eating ok (if limited in what she'll have) and hasn't SH in a long time.

I've just had a call from her best friends mum to say they've realised she's also stopped eating. This has hit hard. I feel so terrible for them knowing what they are about to go through. I feel petrified at the effect this will have on DD. I'm worried about how they will navigate this at school and how the other parents of the friendship group will react.

Has anyone been through this? I have to say something to DD today as tomorrow it will be obvious when her friend is also being picked up for lunch

Whatho i think you are completely right, people don't get it and your friends comment was crass and ignorant. I'm not surprised you're upset.

@LittlePickleHead i assume school knows about your dd and now her friend?

They know about DD but not sure if they know about her friend yet as it sounds like they only realised over the holidays

In a total tailspin. DD is food refusing again, I've taken her phone, said she won't be able to babysit if she doesn't eat, all the things that usually work haven't yet.

I just don't know how to navigate this. I'm worried that there isn't a way for both girls to remain in the friendship group but that will mean one of them being isolated. We've just had such a lovely holiday and now it feels like it's unraveling

I don't know how to cope with (very full on) work and this

I’ve copied this from @Girliefriendlikespuppies - it is spot on; “There should be more support for the parents and carers, more education on distress tolerance and managing our own mental health in order to support our kids.” - I am so frustrated with three doctors visits failing to accept that DD’s weight loss was an Eating Disorder, CAMH sending us home with photocopied sheets of three snacks and three meals with no advice or support, no warning of the level of distress to expect from our previous compliant DD (swearing, violent outbursts) and a crisis phone number that was never answered.

Whilst they refer to FBT my friend who suffered from anorexia in the 80’s was given the same three meals and three snacks treatment then - nearly 40 years later we have the same approach. Other life threatening illnesses have money and resource thrown at them, I feel like our DC are the hidden sufferers and are left to get on with it on our own, thankfully these groups exist to vent / advise / support as tbh our experience is that the eating disorder service feels as though it is muddling along in the dark.

@LittlePickleHead full time work and an expectation that you can arrange for meals and snacks for your DD must be hard - I have no answers but wish there was financial support that would allow parents to focus on their child’s treatment. More should be offered to parents / caters of ill children.

My DD is about to be assessed and her best friend is already undergoing treatment. Sadly my DD has become isolated from her friendship group and recently contact with the best friend has been limited, which in turn is causing my DD to be more isolated and spiral further.

I'm sorry to hear that Gruf, this is also my concern with my DD. How have school been about navigating the situation?

I don't want either of the girls to become isolated but I can't see how they will be able to be around each other at the moment.

DD hasn't eaten since lunch due to the news. I'm going to have to speak to the school to see how it can be managed but she's been crying to me about not being able to see her friends (moot point if she doesn't eat as she obvs can't go in)

@WhatHo - Good to have you along. I've DM'd you.

Hi my very good friend's daughter (15) has just been admitted to hospital with anorexia and has been fitted with an ng tube after refusing food for a week. Does anyone know what happens now/had experience of this?

@lifeisabalance - My DD has been in this situation a few times. As long as she is accepting the tube, then nothing too drastic. Hopefully, once she has some nutrition inside her, she may start to think more rationally, and accept either food or nutritional shakes, so, when she is physically stable, she can go home and start/continue family-based therapy. They are only likely to consider things like a section if she refuses the tube. (My DD did start refusing the NG but after 14 months and 8 admissions, so please don't take this as representative). It's good that your friend has you to support - my irl and virtual friends have been a lifeline.

Echo what's been said about friends just not getting it. One, lovely, friend who invited us all round for dinner and made a very calorific cheesecake - 'she won't be able to resist that' she said. It was sweet (the cheesecake and the gesture) and well meaning, but just made me realise how she had absolutely not a clue as to what we going through. It made me wonder whether she just thought that we hadn't been giving DD nice enough food or something and, doh, why didn't we think of cake?

Re. the article, Hadley Freeman said something similar on Women's Hour about mothers needing to avoid becoming their DD's carers. She argues that it plays into the contradictory desires of the daughter to stay close to their mother and at the same time to break away. And also that if they get better, they effectively "sack" their mother.

I get that logic, but at the same time WTF are we supposed to do when prescribed FBT? How can you give three meals and three snacks without giving up your life? It is a full-time job.

What I wished we'd been able to hire or got from the NHS was at-home meal supervisors. Someone who'd come round and supervise a meal and a snack so we'd have been allowed some respite.

And sorry you've found yourself here @AnArundelTomb but I hope you will find support and sympathy. "What will survive of us is love" indeed...

WhatHo That's a horrible comment to make to any parent, let alone the parent of a mentally ill child.

One thing I've learned on this journey is to not judge what you see and to be compassionate to everyone as you never know what they're going through. The last 18 months have massively humbled me.

Yeah right re comments from clueless (but hopefully well meaning) friends and family, I had several people tell me that dd was just doing it for attention so therefore I should just ignore it and she'd get bored and start eating 🤔🙄

Righto then... 🤦‍♀️

There's been a lot of theorising over the years that anorexia stems from dysfunctional mother and daughter relationships and afaik there is absolutely no evidence to support this fucking insulting claim. To me it smacks of misogyny tbh.

Girliefriendlikespuppies

Oh it's always the mothers issue.

Dd's Psychiatrist asked me if my childhood was happy, in front of dd. I answered Yes. I had happy moments in childhood but some also very difficult times. Nothing I feel I need to share with my dd until she's old enough to understand, or a Psychiatrist I had met 10 minutes earlier.

So of course I then go home and start questioning every little thing I've ever said and done that could have effected dd to such an extent she wanted to starve herself.

He didn't ask about dh's childhood. He only asked what dh does for a living.

Bagpuss !!!!! That is so outrageous and so bloody typical. FFS. The ingrained misogyny. A friend of DD's mother told me that anorexia is all about the child's relationship with the mother, while gambling and drug issues are about the relationship with the father. Funnily enough she had a son with the latter. I did ask how she explained the coincidence that both DD's cousins on her dad's side had been hospitalised with EDs and she said it must have been inherited via his relationship with his mother then...

Oh well feeling guilty as it is with 2 DC with ED...dc1 did "snap out of it" without help (refused) after about 18 months. I suspect Dc2 will have long term problems, just hope she can manage them.

Looking at unis and now definitely looking at unis not too far away..

28 hours without food now, and refusing the fortisip we were given by the ED clinic. I've been told to take her to a&e though I do worry her obs will be fine and this will reinforce DDs idea it's not that serious.

She seems to actively want to be hospitalised and tube fed.

48 hours ago we were planning a theatre trip and discussing what a good Easter trip we'd had. I'm in bits

I'd take her to a&e.

@LittlePickleHead how tough for you all. AN has this horribly competitive edge. I am not totally surprised that news her friend has also got AN has sparked such a reaction. Is there no way of getting in touch with your CAMHS support for a crisis type meeting?
In the meantime after this long with no food when already underweight I'd go to AandE too.
That feeling of taking massive steps backwards is so hard to deal with. Much solidarity

Been in a&e for a few hours. Obs have mostly been ok (as predicted) but they are trying to get hold of the ED team at the Maudsley to work out what to do next.

She's just had blood sugars done and they are low (not unexpected). I don't really know what to expect at this stage. Will they just send her home to get worse so I can bring her back again?

Sending good vibes to little pickle

@LittlePickleHead
Sorry to hear you’re in A&E. My experience with my DD has been if sugars are less than 4 it’s usually ended up with admission to Paeds ward.

Especially at this time of day they might be cautious to discharge her as levels often drop a bit further at night.

I Really hope she can manage to start eating.

This illness is so distressing , it makes me quite emotional reading on here about all the havoc it leaves in so many people's lives.

Sending positive thoughts to everyone. I’m so exhausted with it all it’s heartbreaking.

It was 3.9 and she's started to feel sick, although they did say they weren't concerned about it at the moment.

We're waiting for someone from camhs to turn up to make a plan. I feel terrible for thinking this but I'm wondering if part of this is her seeing what will happen? She's in pretty good spirits which is so fucking weird

She will be in good spirits sadly because the ED is currently winning 😕 I would push for admission, say you can't keep her safe at home if she won't eat. I'd want her to have been on the ward for at least 48 hours and eaten 3 plus 3 in that time before consider taking her home.