Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

We did multi family therapy too and it has been brilliant for all of us, we were on a weight gain pathway but it helped us move from some bad habits and focus on recovery. All the family were involved, 4 days one month then 1 day a month for the next 3 months but I'm glad we took part. It really is a postcode lottery as to what the area you are in provides I've realised.

Hi. I'm looking for advice on how to help my daughter (14).
Before the Xmas break, her teacher raised concerns about her hardly eating at school for around a week. She is autistic and attends a specialist school. She's never eats breakfast.
Over that period she had also been eating a lot less at home, coming home saying she'd eaten loads at school and wasn't hungry so didn't want any tea at all or would just eat a tiny amount later on.
As she's always eaten fairly big lunches, plus pudding and snacks at school I wasn't too worried, until her teacher told me she wasn't eating at school either.
She also had braces fitted about 2/3 weeks prior to that so had a week where she couldn't eat much, but then had been back to eating normally.

Over Xmas she was staying in bed till really late, and had some days where she ate hardly anything, and others where she ate a normal amount.
This week she has barely eaten anything. She didn't eat anything at school on wed/thu and only ate a tiny amount of tea. She also told me that she threw up her tea on Monday night because she didn't like the feeling of it in her body.
She had a friend over on Friday, and ate a proper tea. She had only eaten a boiled egg at school.
She ate a packet of super noodles Saturday lunchtime and hasn't eaten since. She just keeps saying she's not hungry. She is very lethargic, has a headache, and seems very angry.
I've suggested that we go to talk to the GP, but she refuses.
I have no idea what to do, or how to help her.
I've tried not making an issue and just leaving her to eat if/when she wants to.
Tonight I begged her to eat her tea, and told her that if she doesn't eat she won't be well enough to go to school tomorrow. She got angry and told me to stop and leave her alone.
I have no idea which approach is right, or what to do to help stop this before it gets out of hand. I feel totally out of my depth and helpless.
Any advice?

@Wolla1974 so sorry you find yourself here, that sounds very difficult especially with her additional needs.

First thing I would say is that if there is any risk of her consistently eating less than 500 calories a day, I would be going to A&E to get her checked over.

Do you have any support from your local CAMHS team due to her autism? If so could you ask them to signpost you to any available help? In my area (Derbyshire) our CAMHS team have a dedicated eating disorder service who we are being looked after by.

Hi @Wolla1974your story is very familiar, has your dd lost weight?

I would start with a Drs appointment, your dd needs her physical observations checked, an ecg and bloods. I would also ask for a referral to the local eating disorder team.

The being strict approach is the correct one, unfortunately minimising, ignoring and hoping for the best doesn’t work for eating disorders and the longer she restricts the harder it is to turn around.

Your dd needs to eat 3 meals and 3 snacks a day and life stops until she eats. It sounds like she is really struggling physically already which is concerning.

If you can’t get more 500 calories a day into her she needs to go to a&e.

Hi All
I never thought this would be thread that brought me out of lurking, but sadly it's just what I need right now if I'm ok to join
DD17 told a concerned teacher at school yesterday that she was throwing away most of her packed lunches, which turned us from slightly concerned she seemed to be losing some weight, to knowing she has an ED. We talked a lot yesterday and today. She's been doing a version of calorie counting and then going to the gym to burn it off, which is an alarming thought. Thankfully only some of the calories she eats 'count' for this burning, but we're still not in a good place.
We saw the GP today, and have been referred to the ED team. She's having bloods and an ECG on Monday as the GP was concerned about her low heart rate as well as her low weight. That shook DD, which is no bad thing as it is helping her see how serious this is.
Feeling so many things right now. Ridiculous that we'd hoped the weight loss we noticed wasn't as bad as we thought (covering up all the time), sad that she lied about lunches, amongst other things, wishing we'd pushed harder in the many, many conversations we had around food and exercise. And scared for what is to come. But proud at how she's handled things so far.
We're trying to gently make her eat more for now, as we can tell it scares her and she's being so open and cooperative, and is shaken, we don't want to push it and lose that straight away. But that and restricting the gym are not going to be what beats this, and reading some of the stories on here I know I need to be firmer with what she needs to eat, and soon. She is eating 3 meals a day, but it's predominantly fruit and veg (which 'don't count'), and not enough for exercise, and probably masked how bad things got as we've seen her eat and so far she's been generally well.
Generally she's in a good place, which I'm thankful for, but I don't know if I'm right in being realistic that that means we can keep her on an even keel as she fights this.
Thanks for reading, it helps to put it down, and thanks for all you've shared which has helped today as my head spins

Sorry you are going through it too. Some criticise it but we followed the method in the eva Musby book basically a guide for parents of young people with EDs. That and a hard core psychiatrist worked. Dd alson17 is eating normally again after narrowly avoiding being admitted to hospital in April.

Girlie is spot on. The being careful and pussy footing around has to end. It’s too serious for that. She eats 3 meals a day plus snacks whether she likes it or not. If not she may have to go to hospital. Oh and her social life definitely gym and even school have to stop. That brought up Dd short. Play stupid games win stupid prizes. If you want to not eat you can sit in with us as you won’t have the energy to see your friends. This is what worked it for us -being really mean.

If you are a reader read Caitlin Morans most recent book her Dd developed an Ed out of nowhere too. She writes about it very well. Plus Hadley freemans book she was an anorexic herself but got through it.

Hi @LurkyLurkyLou sorry you’ve had to find us.
It’s good your dd has recognised there’s a problem, however you have to brace yourselves for the fact that recovery means eating a lot of food and fruit and veg does not count.

She will get distressed because her brain believes food is dangerous which is ridiculous. Because her brain believes food is dangerous when she eats those fear foods it will chuck all the negative emotions at her - fear, anxiety, guilt, anger, disgust and it will ramp up those emotions the more food is pushed.

What you have to do is be the calm voice of reason ‘food is safe’ ‘you have to eat this food, you have no choice’ ‘I love you and I want you to be well, trust me and eat this’ etc etc.

Tolerating their distress and understanding it’s part of the recovery is really important.

Start taking control of the food, work out ways to get more calories and fat into the diet, adding butter and cream to everything is the easiest way.

No exercise and if you’ve got scales in the house hide them or throw them away.

Thank you everyone, it means a lot.
It's been quite a week. DD had an ECG and bloods on Monday, all clear apart from the low heart rate. Then we spoke to CAMHs and they confirmed no exercise at all and sent us the meal plan.
We had an initial assessment with them yesterday, which was really positive, DD was engaged, the advice was practical, she'd gained a little, we understand the next steps etc. Then they called after to say on review of the BP and the ECG results the low heart rate is a concern and she's on full bed rest. School was her motivation, and we had a (non strenuous) trip out booked this weekend, so it's taken a lot to lift her from that. Thankfully the hospital appointment for a MEED is on Monday, so the rest phase seems more manageable until we get more info either way.
Still feels like a whirlwind, and because of that very few people know what's going on. DD told her friends last night and they've been great, we just need to do the same. But it feels like we'd rather know the conclusion on the heart rate first, particularly before worrying family.
My rational head thinks the heart rate is normal for her, any time they've done pulse stuff at school / training she's always been the lowest, and she was exercising a lot until this came to light. But of course it needs checking out, and is worrying in the mean time, and so hard not to pop in and check on her in the night.
The ED team also thought she may have a UTI, so we've been at the GPs again today. Which was actually a nice outing for the poor girl
And eating is tough. She's been on 3 meals a day and managed it every day but one, so a good start. But the puddings in the meal plan aren't normal for her, and she's never liked juice or yoghurts, so we're doing what we can to swap in high calorie alternatives that she does like (pre ED) , with her ED voice screaming at her not to eat any of it.
On the plus side DH has gone from irritation and not understanding to reading everything, wanting to be in appointments and arranging to see a friend tonight for a chat. And DS is doing ok for now

Hope all your lovely children are doing ok fighting the fight this week, thinking of everyone in this position

@LurkyLurkyLou We’re glad you’re getting the help you need.

I hope you get news on the heart etc soon. It’s really hard to explain that they can only do purposeful movement, but it sounds like that is the best thing af the moment until you get more answers.

We get this is a lot for you, so please know this is a safe place to chat and say how you feel.

I’m thinking of you xx

Had a rough week and need to vent! DD has lost weight over Christmas (had a week off school with flu just before Christmas) so not a surprise but her behaviours are slipping back - we’re getting a lot more “I’m not hungry/I feel sick” and noticeably more conflict/time in her bedroom/more being left at meals.

There was a friendship issue over WhatsApp a week ago and part of that transpired her friends have been stealing food out of her bag (appears to be maliciously as they know she has AN). School do not support her during mealtimes so no way to know how much has gone and for how long - she normally brings her sandwiches home uneaten but I thought she was having her chocolate/crisps.

So, she’s been off most of this week with “feeling sick” and looking pale etc which I suspect is emotional. First ED appt for a month confirms the loss (back to 89%) and we have to push the meal plan again.

I work 10.5 hour shifts 3x a week, and DH is out of the house 0600-1800 five days a week. I took four months off in the summer to feed her, and I’ve been told I’m on a disciplinary if I take any more days off in the next three months.

How the hell do I navigate this? I emailed school Friday morning re: meal support and referred to the food snaffling as a safeguarding issue, asked them to call me urgently and have heard diddly squat.

Sorry it’s long, feeling a bit broken.

Sorry I usually lurk but ur post really doesn’t sit right with me. Specifically the ‘play stupid games win stupid prizes’ comment. That’s cruel. Eds are mental illnesses. Your comment implies that there is choice and blames instead of helps. Eating feels dangerous and scary- that’s not playing stupid games, that’s fear being wired into survival circuits.
youveimplied that consequences are deserved and families who have lost children to Ed’s would be mortified to read that.
these threads are the last place I’d expect to hear or see something like that

I have to say I agree that the tone of that post (unintentional probably) makes me wince. I’m delighted that you have found a strategy that works for your child. However all our children are different and have different motivations. My autistic daughter doesn’t willingly leave the house and hasn’t seen any friends in months. We would love our daughter to sit with us sometimes in the evenings however she chooses to isolate herself most of the time, in her own home. ‘Consequences’ such as not allowing her to see her friends are completely pointless for us. We are all trying to cope with the same eating disorder but our children are very different.

My husband took unpaid leave for a while to help create a structure around mealtimes - it helped but was not sustainable in the long run. It’s unbearably hard sometimes but we are doing the best we can. If your dd shows any signs of dizziness/heart palpitations etc please look for medical help.

@Glitterfartihave you looked into any benefits you can claim for your dd? Or yourself if you have to take further sickness to care for her?

It’s a horrible situation and I can remember the fear that I might end up having to leave my job if dd didn’t recover.

I think the point @TheaBrandt1is making is that when you have a child with an ED you have to hold the boundaries really firmly, with EDs generally if you give an inch they (the ED) will take a mile. I think that can be done while at the same time feeling immense sympathy for our children for the suffering they’re going through. Ultimately though they have got to eat and as parents we know what works and doesn’t work when we want our kids to do something they don’t want to do!

I am probably at a different stage to a lot of people and wondered if anyone has a similar experience and can help. Dd was discharged last summer after 10 months in an ED unit. She eats all her meals and snacks every day but they are still all weighed out and cooked separately. She will not entertain any change to this. We are keeping her safe but feel stuck. I want her to have some independence. She also washes her hands all the time and is opening cupboards and drawers with her feet. She is on medication.

@L0LLIPOPthe ED service discharged her? I’d want her back on the community ED team caseload.

Will she eat outside of the home? How does she know the food is being measured?

There’s no way of breaking past this point without your dd being upset but I would want the support of the ED team for when you do this ideally.

The ocd stuff is very common when the brain isn’t getting enough calories/fat in the diet. My dd had lots of ocd behaviours but they all fell away with weight gain.

Thank you for your response. She is still with the community team. She eats at college but brings her snacks and lunch from home. She won’t eat anything that she does not know the calories of.
she knows it’s measured because that’s what we’ve had to do since discharge from the unit, we have the same 12 meals on rotation and she knows exactly what they should look like.

she is a healthy weight and eats 2000 calories every day.

I just don’t know how to break this and the ocd stuff is getting worse

2000 calories a day won’t be enough and I expect she needs to gain more weight 😕 what have the community team suggested?

Id accidentally break the scales and start challenging her so take her out to a cafe for lunch or costa for a drink and snack.

Can the medication be reviewed, she may need an increase if her anxiety is increasing.

If the scales broke she definitely would not be able to eat. I know it sounds ridiculous but this is where we have found ourselves. 2000 calories is what we were told to continue with to maintain her weight at 50kg. She has been the same weight since July. She is on highest dose of meds I think. But I will ask.
community team think she’s ready to discharge but this is based on her remaining stable. I have told them we can’t live like this forever. She is on waiting list for therapy but she refuses anyway

Is there anything that is an incentive to her to recover? Uni? Going out with friends? A holiday?

50kgs seems very low, how tall is she?

I think you have to believe she is strong enough to push past the fear of food, if you don’t believe she’s strong enough then she definitely won’t and you can’t contain her anxiety iyswim? Ultimately if she stops eating she’ll end up back in hospital 🤷‍♀️

Does she weigh herself?

She won’t stop eating. She thinks it’s all okay because she eats everything. She’s 5ft 4
she is very excited about going on a holiday that she’s booked and I really want that to be her inspiration to get well. She also wants to go to uni

I don’t know if she weighs herself.

that’s true. I must believe in her and tell her that. Good call

So sorry if I offended anyone as is always said we are only experts on our own child. That is what worked for us - the tough stance. This was led by an extremely qualified ED psychiatrist who took that approach with our family after meeting us and which was for us the exactly right approach. Dd is now eating normally. She is NT.

I think @TheaBrandt1 didn’t mean any offence. She has been lucky to be able to turn her DD’s ED around relatively quickly. Not that anyone who has had an ED in the family can be called lucky.
Unfortunately tough love did not work for us and we had to adopt a more person centred approach. Ultimately, as has been said many times, the key is to holding boundaries, whatever approach you take.
I think it’s worth bearing in mind that not all families can turn this around at home and some will need intensive treatment, whether that is in a hospital or a day unit. And without a doubt, it is much harder for kids with ADHD and/or autism and God help them if they have a PDA profile too.
Having something to look forward to and excelling at something has really helped our daughter but it took a while for her to find and in the end it found her. Jenny Langley calls it Pennies in the Piggy Bank - slowly building up their self esteem.