Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

I am glad you took your dd to A&E @10YellowTulips . Please do be aware they can go down fast, so keep a big eye on her. And people often find just using the threat of going to A&E is enough to get them eating. So no food for more than 24 hours or fewer than 500 calories. Not drinking is obviously also a big red flag.

It sounds as if your dd was feeling guilty for eating. This is a normal reaction people with ED may have when increasing their intake. And why the gold standard is 3 meals and 3 snacks spaced regularly throughout the day. It helps to stabilise blood sugars and prevent bingeing, which can then lead to guilt. I am not suggesting your dd binged, but for her, she ate more than her ED is telling her she’s allowed, which has triggered these feelings.

Has CAMHS diagnosed your dd? In my experience, no real advice will be given or help provided (beyond go to A&E if you’re concerned) until they’ve diagnosed. And that seems to take at least 2 appointments.

It’s good you’re going to see a private psychiatrist. Have you found one specialising in ED?

Sometimes i feel as if ED treatment is simply telling people to eat 6 times a day, then rediagnosing them if they can't

Hi @unbuckle I hear you.
It does seem a bit like, ‘you need to eat’. We all know they do - they know they do. They’re poorly and won’t.

Yes my DD is diagnosed - she was diagnosed by cahms and has been seeing the ed service since October. Her initial diagnosis was binging and purging but she stopped and it turned into restrictive eating.
m the Ed service keep saying they didn’t know what to do when she has no desire to get better or to eat. I can’t get her to eat. Yesterday was the first glimmer of hope for ages where she contemplated eating and trying to improve.but still she only ate 100 calories of healthy foods.
but the guilt and the backlash was so bad last night it will probably be a while until I can bring those thoughts back again and get her to eat. The threat of a and e didn’t do much either and she says going there made her feel worse because she was healthy so in her mind she’s not doing enough.
it’s heartbreaking. I’m a single mum with no close family going through this is so tough.

The private person we’re seeing is supposed to be an Ed specialist - health insurance identified them. I need to call on Tuesday to make the appointment

I'm not sure how old your dd is, so apologies if this isn't helpful, but have you looked at Mantra? It is targeted at adults and specifically looks at low motivation, and is a more long term approach in my view creating the conditions for change. As I understand it ed talking therapies are generally offered when weight is restored, but in theory Mantra does aim to create openness to change and motivation
You can find it online and download the book. I've not got to the stage where I can ask DC if they'd like to look at it, but I'm hopeful that day will come

Wow I had presumed your dd wasn’t diagnosed yet. I am so sorry, I know exactly how scary it is when they just won’t eat. And to have CAMHS shrugging their shoulders after diagnosis is unconscionable. It isn’t difficult to treat the easier cases. I get this gets people off their books, but doesn’t help the hardcore few. And they should be there for the difficult cases.

I think these are different behaviours, but the treatment should be the same and they should be offering you something.

All I can suggest is that you shower your dd with love and affection. She ate yesterday, because you filled her soul with a little bit of joy. And right now, it doesn’t matter what she eats. All food is food. My dd’s diet is very ARFID. Lots of beige foods, crisps, biscuits, not much in the way of fruit and vegetables. The goal eventually is for her to eat a balanced diet. But she’s highly resistant.

As for your dd, I am sure you know the guilt puts her at risk of restarting purging. So if you can get her to eat more regularly, rather than becoming distracted, finally honouring her hunger (which is what she did by the sound of it) and then feeling guilty about it, as that can restart the binge / purge cycle.

Have you looked at any of the Maudsley techniques / Jenny Langley stuff or Eva Musby method? EM was a disaster with dd. But the more gentle stuff taught by Jenny and others at the Charlie Waller trust work.

Do you have any friends to lean on at all?

I hope the appointment with the psychiatrist goes well. It’s good they are an ED specialist. Your dd also sounds like a complex case.

@unbuckle I have done mantra. It is really good for digging into what causes it. It's worth getting the handbook even if your DC isn't old enough or offered it, just to see an alternative approach.

@10YellowTulips that’s a really poor attitude from Camhs 😕 there is plenty of things they can do and support you with.

Has your dd had any medications? If the guilt and backlash from the ED is very loud after eating I’d think olanzipine would be really useful for keeping that ED voice quieter.

They can keep checking your dds physical observations.

They can support you with the emotional load of caring for an unwell child.

Thry can offer strategies for when your dd refuses food.

Ultimately they can push for inpatient care if she’s not making progress at home.

Not wanting to get well is one of the symptoms of the illness ffs 🙄🤦‍♀️

Argh today has been another tough one.
I try to get her to choose what she eats but she seems to have "gone off" everything she found acceptable to eat.

When I just make her something without involving her she refuses to eat it, but when I ask her what she wants instead she just says she doesn't like anything.

It's so frustrating. So so hard to stay positive and she seems to pick up on the fact I'm at the end of my tether and that makes her even less likely to eat.

It's so hard seeing other families enjoy their sunny bank holidays. I've come off social media for now.

@CuppaTandBicky
Is your dd NT or ND / potentially ND? Mine has one of 2 meals she eats in the evening. She will eat more variety if she goes to a restaurant. Lunch is one of 2 things depending on whether she’s at home or out, breakfast is always the same. Dd has a fair amount of demand avoidance, possible PDA.

I am wondering what the issue is. Would it help if your dd were to eat the same thing every day? Or would it help to give her an either / or choice of safe foods. An either / or approach can work for demand avoidance. Or has she been accepting variety and not needing safe foods?

It’s useful to understand what works best for your dd to give a kind of template to try plan to get things in. So have you tried any of the techniques? Either Eva Musby (this is what your body needs, because food is medicine, stay out of the kitchen etc) or Maudsley (nudging - book Caring for a loved one with an eating disorder)?

As for going off stuff, that’s really common. It’s an excuse. And yes, you have to smile sweetly and talk with love. Put your ego to one side. It’s hard. Really hard.

Yes, you need to stay away from social media. It’s soul destroying.

An either / or approach has worked so far (when I say "work" I mean I have managed to get her to eat small amounts, still nowhere near enough). Today it hasn't worked.

Her palate was very limited before all this.. possibly verging on ARFID levels. I definitely think she is neurodiverse. Once she finds something she "likes" she has it soooo often she then goes off it. It's always been like this but now we are battling this it's just even harder.

Going out for a meal has always been difficult. We have always had to check out menus online before going anywhere. Or when we have risked trying anywhere new she will just have bread.... She has always been demand avoidant too. The more you pressure her to do something, the more rageful she gets and the less likely she is to do it.

I'm just reading Eva Musby at the moment. I'm not sure the classic ways of dealing with this will work.

Definitely staying away from social media for now!

@CuppaTandBicky This sounds really similar to my dd. Demand avoidance, Anorexia, ARFID and rage.

Ok the immediate is to try to get your dd to eat something. If she’s anything like my dd, negotiation won’t work. Take a breath, sit quietly and feel what you think she’s most likely to accept. Make that. Set the intention in your mind calmly that she will eat it (calm and in control of your emotions works). Take it to her room. Say lovingly ‘I’d like you to eat this please sweetie’. And leave. Expect her to say no. But if you leave her, she may just eat it. She may also throw the plate. But it’s worth a try. This technique worked with my dd when she was very ill. And she was very far gone and eating almost nothing if at all.

As for Eva Musby, once you’ve digested it, if there is anything you think will work, you lose nothing. Dd didn’t respond how the book suggested. She was 15 and really nasty and sarcastic.

As it wasn’t working, dh and I then went into her room and said we would sit there while she ate, because the book tells us they shouldn’t eat alone (and that is the case for most anorexics). Dd became violent, tried to jump out of her upstairs window. It was a very traumatic experience and not one we will repeat…

With my dd, a light touch works, lots of side stepping. The complete opposite of Eva Musby, although I can now use some of the techniques with her, but we are 2 years down the line and I am consulting an ED coach at least once a week. And dd isn’t at an unhealthy weight, she just isn’t weight restored and still mentally unwell.

Thanks so much. It's good to feel like I'm not alone.

I did similar to what you suggested today but I think she could sense I was pressuring her and that I was stressed/desperate. I have made a few different things she would normally eat and gently placed them next to her.

I think today I'm just going to have to accept that it's a bad day and move on. I wonder if hormones may make some days worse than others too? (Mine and hers!!)

I will continue to read the book anyway.

Thanks again for your brilliant advice I'm so grateful for this group

You’re welcome. This forum was so helpful to me in the beginning.

Unfortunately the ED can sense when you’re stressed. That’s why being outwardly calm is so important, otherwise you become easy to defeat. The ED wants to overpower you, so you become overwhelmed. And argue with you, to take you off balance. Because when you’re balanced and in control of your emotions, you become a threat to the ED.

Idk about hormones. They do get a sort of second puberty when their period returns, but I wouldn’t have thought your dd was eating enough for that to happen (if hers have stopped).

That's so true about the eating disorder responding to any sense of stress or weakness from me.
What a contradiction that calmness helps this situation, but it's a ridiculously stressful situation to be in watching your child slowly wither away.

Yeah that's true the cycles have stopped so I guess I can't blame that!

Tomorrow is a new day. Calm and zen will prevail.

Hi everyone. @CuppaTandBicky it sounds like things are tough for you, I’m sorry to hear that. This group helps me to at least not feel so alone. Hot weather has made things tricky this week as food is hard to plan for. I have a question about obsessive movement and the need to walk and not sit down . Since improving with the meal plan (a bit) this week I’ve not been able to get my dd to sit down much. She opened up last night and said it’s the thing she finds hardest. The need to move is the only thing that quietens her mind. The camhs team said to try practising ‘mindfulness’ but we are not really a mindfulness type of family. My husband never stops moving. But we want to try! She isn’t running up and down the stairs or jumping in her room at least. But she is almost always up on her feet doing something and it’s so hard to manage this. She has music, books crafts etc. these don’t seem to entice her. I have said that she needs to try and learn to ‘sit with the discomfort’ but I’m not sure of another way to achieve this.

@Raspberrysins
The exercise is evolutionary. You won’t be able to stop the urge until your dd has regained quite a bit of weight. She sounds rather emaciated. The urge stems back to when we were hunter / gatherers and food was scarce. Some people would get super energy and walk for miles in search of food and / or a better place to live with more food for the rest of the group. That’s why anorexics have oodles of energy, until they suddenly don’t.

As for how to handle it, my dd hasn’t had these urges in a major way. I think a lot of this is because I have managed most of the time to have her eating enough or turned her around from relapse. If it is medically safe to do so, it seems to work best to offer exercise in a limited and controlled way.

Dd for example had to stop all exercise for a while, but was allowed to meander around with her friends, but not too far. I was giving her lots of lifts to and from the park 10 mins down the road to reduce her energy expenditure. After she put on some weight, I allowed her to dance again, but 6 months later she subsequently had to stop following a relapse. I offered the gym instead, as she really needed a form of exercise. She was initially allowed twice a week and this came with 3 PT sessions. I ensured the PT had knowledge of ED and would train her based on needing to be conservative with exercise.

As for your dd, she’s more at the meandering around stage. ED services used to say no exercise. Now some are coming round to the idea of a little exercise to keep morale up for those, always on the go.

So presuming it’s medically safe and your dd is eating regularly, even if not yet quite up to the full amount, going on the short walk she did the other day may reduce the movement at home. Therefore she may actually be using a similar amount of energy with the walk.

You could talk to your dd about this. And use it as a bargaining chip to add one thing in, telling her she can go for that walk that day, or indeed every day. Make it something worthwhile if you do. Eg Is she eating enough protein for example? It’s actually really hard to regrow new muscle, which is why I’m highlighting it. For protein, you could add in some cheese to be eaten before she goes, eg 2 full fat babybel. If she needs more fruit / veg, something like an orange, a banana or some mango (rather than watermelon, which is diet food) plus a babybel etc. Adding in the cheese reduces the GI and stops the sugar spikes. Or if she just needs to eat in general, add a flapjack etc.

And this is a good way to increase intake. Carrot and stick. It works equally well for anything they really want to do.

That sound hard especially in this heat.

We aren't at the exercise stage... We appear to be at the depressed lethargic stage. But we have watched lots of series on Netflix together which has given her something to focus on. Could that help? Or stupid things like games on phones... Bejeweled, candy crush etc.

Another bad day for us. Managed to stay very calm but she just simply refuses to eat anything I bring her. I feel now we are just talking to the ED. It's taken over and probably "fueled" by the lack of food.

My DD struggled with not moving. Partly because she was into sports and her ED started from over exercising, partly because she had always been active, but mostly because of the ED.
She would pace obsessively. Its a calorie burning technique, as is constantly standing, all ED driven.
My DD had 'permitted' exercise. She had days with no exercise allowed and these rest days were the absolute worst.
We had to bargain with her. Pacing meant a reduction in her permitted exercise.
So I agree with PP that maybe having some agreed exercise (short walk would work) on some days to replace the pacing may help.
Lots of distraction too. We watched a lot of TV, she built lego kits (those ones made for adults if you can afford them), crafts anything really. The key was me doing these activities with her.
And yes she does have to sit with the anxiety of not moving, but distraction helps.
Weight gain really comes from food. Pacing and standing is annoying as hell and tackling it is the right thing to do as it takes that power from the ED, but in reality the cals used are low. Some days I failed to stop it (once famously when she paced around the garden in socks and t shirt in the snow, before curling up on the trampoline and refusing to come in- I took her a coat and finally distracted her when a perfect snowflake landed on her sleeve and we marvelled at that).
If she had eaten I tried to let it go for that day and try again the next.
It will calm with weight gain..

@CuppaTandBicky
Good job staying calm. It’s the love and care and kindness, that will get you there. Unconditional love, that’s what sufferers need to recover. And what you’re doing is really good. Anything you can to stay connected. This is so important. It’s often recommended to watch tv, play board games, cards etc whilst eating a meal / snacks. Anything to calm the mind.

If your dd won’t eat what you give her, what is she eating? And will she eat with you? My dd will only eat with us twice a week. We have scheduled days for that to happen.

And fuck it’s so hard right now. With my dd staying connected is really hard. She isolates herself from us, but especially me the more she restricts. I was and still am sending her so much unconditional love. For about 6 months, she was absolutely vile to me, wishing me dead, telling me how much she hated me. And me telling her stuff like that’s ok, because I have enough love for the 2 of us.

And my dd ate at a friend’s house yesterday for dinner and evening snack. She clearly didn’t eat enough, wouldn’t tell me what she had, she only does that if she’s eaten enough. I thought she was going to be violent with me just now, when I went to see her to ask her to get her breakfast. I am still after all this time trying to get her to eat before doing her skincare... This is really important, because she forgets to eat in general when she’s stressed, when she’s excited, when she’s getting ready to go out etc, which is why she keeps on relapsing. So she needs to think to eat first...

And I’ve just realised I have a fight/freeze response to her. Fight because I’m supposed to stand my ground to the ED. Freeze because she can be so scary. So when she tells me to get out of her room, I get now why I can’t.

So there’s me balling my eyes out, because of the stress response. So much for staying calm eh!

@Mummyoflittledragon you've got this. You always give so much encouragement to everyone else and you know what to do! Allow the tears. Then you will again pick yourself up and keep going because that’s what we have to do. We’ve had the saddest of half terms watching everyone else being out and on holiday. We’ve just decided to book a little last minute caravan break. We know it will be the same shit in a different location but we just all need a change of scene. You are not alone in this! I’d recommend watching ‘I swear’ which we all enjoyed last night. My mantra for parenting when they were little was ‘I am the mountain’ and they can be just like the wind around me. The mountain is strong and doesn’t move. It always stands consistent and calm. Be the mountain! I am using it now more than ever

Just sending love and support to whoever needs it today.

Half term and especially bank holidays seems really hard and you remember previous ones and hear about what others are doing xx

Thanks @Raspberrysins and @Pearl97
So I had a session with the ED coach earlier. We had a long talk about all of the anorectic behaviours, that are creeping in. There are different ones as she becomes older, particularly in relation to her self worth. She was still a girl when this started and she’s kind of trying to be a woman now. I showed her a recent photo of dd and she said she looks really vulnerable and unwell in it. I knew she did. But don’t think I’d realised just how much weight dd has lost recently. It’s hard to gauge as dd refuses to weigh herself. I just realised a couple of days ago she is once again able to get back in the shorts she wore when she was really unwell. They were big on her at the time, but they were also too small last year.

Sending lots of love and support.

We are in hospital now as CAMHS were worried about her physical health and said family therapy can't start until she's stable medically. They've given her a meal plan today and she is outright refusing anything. They have said she will be tube fed if she continues this (that makes it sound quite threatening... They were nice about it)

Does anyone have experience of this situation?