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

@curlykate99 FWIW my DD is 10, 11 next month, 154cm and she’s currently getting 2300 calories a day. I tell you this as there’s very little data about weight gaining for pre-teen and I couldn’t get over how much I have to feed her.

The moment she dropped below a certain threshold she went from being weird about food to fully-blown AN in 8 weeks. I think these little ones have no flesh to lose and it goes bad really quickly so well done being on top of it.

I agree totally. It happens v fast in young people and absolute weight is not a guide, rapid weight loss is. So even if remaining a healthy weight any sudden loss is v concerning. A lot of GPs do not seem to understand this fact.
It is so dangerous for a child to lose weight. Unless seriously obese they shouldnt, ever.
On the plus side a young sufferer has a much better chance of recovery statisticslly. And you are still v much in control as a parent. And can take charge of medical appointments etc without being excluded.
I actually think that is partly WHY younger sufferers recover better statistically.

Noted @WhatHo thanks, his younger (not much smaller) brother acts as a decent benchmark and has a much better appetite, but they're now getting the same intake, which is way more than mine, and I'm keeping a diary. I'll be off in half term as someone suggested also.

@Girliefriendlikespuppies glad DD enjoyed her party - she seem very similar to mine, although DD is a year younger and has just turned 16. How do you cope with their natural quest for independence - i.e. going (eating) out and perhaps even nights out with friends; maybe part time work; college - all these times when their eating is not supervised. Teenagers need their freedom, how do we balance this with an eating disorder (only last week school made us aware that DD had skipped some lunches, she is back at her supervised dinner table).

The mix of an eating disorder and the teenage years seems to be a perfect storm!

16 also means that they have to give permission for HCP to talk to parents. Which in our case she has declined.

@Threeyearsalready in my naivety I did not know this. I am sorry that your DD has declined the sharing of her health information with you. DD has been discharged from EDYS, however for the next three months we are in a 'hold' position whereby we could re enter the service if DD's health deteriorates - that decision would I thought be ours. How would that work if DD aged 16 does not allow the HCP to talk to us parents, bearing in mind that EDYS is under CAMH services which I thought ran to the age of 18 - could it be the case that DD is under CAMH's but there is no obligation for them to speak to us parents? How then would we be able to look after DD using FBT if there is no feedback from the Health Professionals? What are other peoples experience with their children aged 16 -18 in EDYS and CAMH's.

This has sent me in a bit of a spin, DD suffers from a serious mental illness and at 16 she is not socially, emotionally mature - we are told that we are her carers yet we could be excluded from dealing with the HCP.

Well, they mentioned that if I see major problems with her I can still let them know....

Glad your DD has a good birthday - especially brilliant about the birthday cake :-) ! On freedom - it's a difficult one, isn't it? My DD(16) is on home leave from hospital today. She is still a very low weight, so I refused her permission to go into town with her friend. She said I couldn't stop her and went anyway. I gave her a packed lunch as a harm minimisation strategy, and I guess her obs will show whether she ate it. The ED team seems to treat her as an adult (sending medical reports to us not us, not passing on info about her self-harming etc.), but still seem to have expectations that we provide the care that you would expect of a far younger child, e.g. be there at every meal, distract her after eating etc.- regardless of our jobs and other caring responsibilities. We are both supposed to take four unpaid days off work next week at short notice to attend multi-family therapy - but DD is refusing to go.

@Girliefriendlikespuppies It was your daughter I'm glad had a good birthday!

@NanFlanders remind me how old your dd is?

@NanFlanders thank you for the insight of your experience with your DD at 16 with the HCP and @Threeyearsalready for highlighting the 'major problems' flag. Like your DD @NanFlanders mine didn't want to meet the therapists - DH and I would attend as a couple but got nothing from the meetings, everyone is different and I do hope that if the sessions happen then your DD can take something from them.

At 16 my DD is quite immature, lockdown and the delayed development of the interruption of her illness means she doesn't manage responsibility at all - dealing with medics who she doesn't want to deal with anyway requires our intervention, but it does appear that we will be side tracked now she is 16.

@NCTDN She's 16 (17 in a few weeks), but I agree with the lockdowns and AN mean she doesn't have the level of life experience that previous generations had. She seems very young to be allowed to make major life decisions - even leaving aside her serious mental illness!

D1 it's so difficult, I have to allow dd the freedom to do normal teenage things and trust she eats. Fwiw I do think she eats when at college or out with friends, maybe not as much as when with me, but she will eat something.

For example she got the train for the first time a few weeks ago to meet a friend in a local city. I asked her what she did about lunch and she said she suddenly got hungry and asked her friend what the time was, it was about 2pm and she said to her friend 'right I need food and a drink right now' 😆

It sounds genuine and I have no reason to disbelieve her 🤷‍♀️

The consent issue is a complete pain, I came to against it with the school counsellor who refused to discuss anything with me as 'dd didn't consent' 🙄😒🙄

It's such bollocks as as you say they are in no way ready to manage a serious mental illness.

My dd also seems v v young, I'd put her more at 14/15yo than 16/17yo, I don't know if that's covid or just her tbh. She's always seemed young even before covid, she played with toys up until 12/13yo, liked activities aimed at much younger kids etc.

I am still convinced she is autistic which may explain some of the immaturity.

In a meeting with DD's Head of School she said that 80% of the girls are suffering with some level of anxiety and her experience is that the students were 'playing' games that historically you would expect from earlier year groups.

I suspect DD is autistic, and I suspect I am as well (social anxiety, levels of rigidity and Rain Man like memory retention). What is the experience of those whose DD has been tested and diagnosed - does it help?

@NanFlanders glad your DD was allowed home visit from hospital - although I'm sorry how it transpired. My DD when on strict bedrest stormed out of the house, hours until she returned.

Our friend's daughter has been admitted to hospital, general paediatrics with monitored feeding - she is attached to a heart monitor and kept in hospital for two weeks, although she has not had a formal diagnosis of AN. I can only imagine this is because the psychiatrist has not undertaken the review - would it take so long?

Hello all, joining for support. Dd is 14, nearly 15. She was diagnosed with AN this week after a very long 2 years of weight loss and struggle at school. She is now under CAMHSED and on an eating plan which she is point blank refusing to cooperate with so far.
She is 5ft7 and 45kg. We have to go back to them on the 24th and i'm not sure what happens if she hasn't gained. She will have to eat lunch supervised at school and is meant to eat supervised by me at home too. Plus dhe has been told to stop the gym which i agree with but given that I am.at work when she hoes pretty powerless to stop as it's a tokens entry and she can just pay as she hoes so no membership to cancel.

She's your typical very bright girl but I also think ND- always been very rigid and controlling. The counsellors were not really very helpful when I said I could not force her to eat. She really will just run away- she's vanished for days before now.

Anyway,hoping for a little more understanding of this and a bit of support. Just feel very helplless!

Hi phle welcome although sorry you've had to find us.

I think if you want to kickstart FBT you have to take dd out of school and get signed off work ☹️ imo it's the only way to move it forward.

FBT is a 24/7 job, you have to sit at the table for potentially hours to get a meal/snack completed. You have to supervise to stop any exercise, potentially lock doors or windows to stop any absconding.

It's completely and utterly awful and shit.

You also need to completely take control of the kitchen, keep dd away from and any meal prep. Just the shopping, meal planning and serving meals and snacks is massively time consuming.

I think once I realised that I had to get signed off work life got a tiny bit easier as it is impossible to do FBT properly and work imo.

I also made progress with dd by focusing on making every single mouthful as calorific as possible, I got through tubs of creams and butter.

Hi @phlebasconsidered so sorry you've had to join us but equally be assured of lots of support and advice.

First up, how are you? As parents/carers we can get subsumed by the system but don't be worried about being yourself here - we'll all have experiences of stress, anxiety, anger, bewilderment etc etc - your feelings are important to recognise alongside what your daughter is going through.

Am so sorry its taken 2 years to get you to a point of support. My feeling is that CAMHS services are so different across the country but hopefully we can share our input so you can shout louder.

As girlie says - this is a full time endeavour. FBT will suggest 3x3 meals and snacks and it will be hard in the early stages. But something I learned later than I should was that it is important to try to create space in the day which is non ED related - if meals are taking forever (understandably so at the beginning) this is time that the ED is in control. Ask your CAMHS team for specific instructions about distraction technique whilst your DD is eating and for how to react if a meal goes on for more than 30mins - we spent months allowing meals to take hours before realising we were actually ceding ground to the ED - but we knew no better because no-one at CAMHS had explained this. So, ask and demand!

@phlebasconsidered hi. Are you a Banks/Culture fan by any chance?
In regards work, absolutely get signed off. You wouldn’t think twice if your child had had, say, a leukaemia (as Eva Musby puts it) and this is actually going to be as much work. I don’t mean to be a downer but we are right in the midst of the early months (DD diagnosed in December) and it is gruelling.

I really battled over it emotionally - I retrained and started a new career 2 years ago working in 3 different schools. so giving that up was fairly devastating. I gave up one school, am on sabbatical with another and down to one day a week with the other one.

My DH took 6 weeks sick leave and has been offered a further unpaid sabbatical for 2 months. The impact on our finances is huge BUT it means we’re able to focus on her. She has exercise compulsion as well so cannot be alone ever.

As @Girliefriendlikespuppies Says, it is completely shit.

I was going to say there’s no upside but Before I scare you utterly, strangely there’s been a few - my DH and I have renewed love and respect for each other, I’ve seen I’m capable of handling truly traumatic stuff (her bloods were appalling and she has screamed for hours while self harming) and other stresses have fallen away, not least that I used to get bad FOMO and that seems hilarious now.

And most importantly as DD approaches 90% W4H we are seeing glimmers and gleams of our old DD, the one we had before this incredibly cruel illness started to change her in June last year. It’s worth it.

sorry this has turned into a long post but what I’m trying to say is that radical acceptance is the only way forward - you have an ill child and your life will change, albeit in the short term.

I am ‘lucky’ in that my DD is very young but there are Mums on this group who are dealing with older teens and absolutely manage to refeed successfully. Very headstrong seems to be standard with the ED mindset. You can do this 🙏

I actually came on to update the group and ask advice rather than write an essay - sorry!

So after the carnage of 2 weeks ago we have successfully tried ice cream and porridge in the last 3 days. She still spent 10 mins asking about the calories and whether I’d got it ‘right’ but ate the porridge in 35 minutes. 8 weeks ago it was taking 1.5 hours. Such a change. She has put on another .5kg.

…aaaaand on the other hand she has started to get up in the night to exercise. Beyond chaining get to the bed (!) or sleeping in her room does anyone have any suggestions of how to stop this? Nanny cam?!

Hi @WhatHo that sounds like you've made some great breakthroughs! I hope that continues for you..

In terms of the exercise - we actually did use a nanny cam! I hasten to add with DD's knowledge, permission and kind of her volition. DD confessed that she'd been up in the night exercising and clearly told us because she wanted help in stopping. The camera in her room gave her the 'excuse' to the ED as to why she couldn't exercise any longer. We didn't have it in her room very long and didn't look at - but it gave her the assurance. It is one of those ED moments which sounds batshit to anyone looking in from the outside but there are many of those aren't there...!

Oh that’s very helpful! What type?

She also told us she was doing it but I know that she’ll try and find a way round, she tells us stuff then the ED twists her in knots to sabotage anything we put in place. That said it can only help.

also I was wondering, someone mentioned a Facebook page. Could anyone give me the name?

Hi WhatHo The fb group is EDSUK - Easting Disorders parent/carer Support UK. It's a useful group and there's a wealth of experience on there and I like that you can search the group for particular info.

However, I joined the group but I don't follow the page and just dip in when I need it. I find posts suddenly popping up when scrolling through fb quite distressing at times.

I think some parents do sleep on their child's floor or have them sleep in the same room as them.

That's brilliant progress with the porridge and ice cream 👏🏻 and yy to liking the diagnosis of anorexia to leukaemia, the mortality rate is actually similar which is terrifying.

Hello
I think I may be needing to come and join you on this journey.
I've been keeping an eye on 13yo DD's eating since Christmas as I noticed over the holidays she wasn't really eating chocolates or mince pies which she would have previously tucked into. Since then, I've noticed she's eating meals and fruit based snacks and things but no cakes, biscuits, crisps or anything else calorie dense or "bad". Alarm bells went off earlier as I mentioned pancake day and she said didn't want any as she didn't like them. Pancake day has always been a highlight of her year.
I usually keep an eye on her messages on her phone but don't tend to dig any deeper than that. Stupid me! Her internet search is calorie menus for the restaurants/cafes we ate out at over HT and her YouTube stories are all about 10 minute ab solutions.
I think the thing which has stopped me worrying until now is that her behaviour is perfectly normal, she has plenty of energy and plays sport at a high level so gets talks about nutrition through that and I thought she was just demonstrating what she'd learned. She hasn't visibly lost weight and, whilst she wears tracksuit trousers & a hoodie much of the time, she wears crop tops with them and her sports kit is quite close fitting and so revealing.
Any tips on what steps I take now? Do I broach it with her? Is it worth trying to manage it at home or is it straight to the GP and CAMHS wait list?
I'm currently terrified but also relieved that, yet again, there appears to be a supportive, knowledgeable network on MN. I'm also confused as it doesn't seem that long ago that I was on MN at a similar time of night for bf'ing tips.
Thinking of all of you in this boat

HI @2023istheyearigetmyacttogether
Welcome to the group - although sorry you have to find yourself here. It does sound like your DD is in the early stages of an ED and it is really important to act quickly before it spirals out of control. You say she plays sport at a high level and receives talks on nutrition, is there a nutritionist (accredited with the AfN) or dietitian there you could talk to about your concerns and ask her to have a word with your daughter?
There is no such thing as 'over reacting' when it comes to EDs - the early it is caught, the better the chances of a full recovery and, sadly, behaviours do tend to spiral if left to their own accord. Having said that, it sounds more like 'orthorexia' - a focus on eating 'perfectly' at the moment. Renee McGregor has a very good book on it which is well worth reading and perhaps going through with your daughter.
If you do go to the GP, it is well worth ringing in advance to discuss your fears and explain the situation - also ask to see someone at the practice who has experience with EDs - unfortunately GPs don't always receive much training on them and you will get the odd one who will say that it is just healthy eating and normal for a teenage girl - only to find you return in a few months time with someone with a raving ED.
In the meantime, start establishing and insisting on 3 meals and 3 snacks a day - all balanced and varied.
There are lots of other members of the group who will be able to share their experience, so hopefully you will find more advice soon.
Good luck x