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

[Mummyoflittledragon]

New thread. The old one is full…

I'm thinking some sort of SSRI (for me and DD!!)

Today's home visit to try a meal here was a delight.

Today I'm remaining stoic after this disaster....and looking for humour in this dark dark situation... Just wondering what the worst food your child has thrown? Today we experienced beans splattered down a dining room wall. Not great but I imagine there are worse? Chocolate Fortisip on a carpet must be a stubborn stain!

I am sorry to read all this pain. I also know the doom and waiting to know if dd has survived another night. I used to go into her bedroom in the middle of the night to check she was ok. And sometimes just sit in her bedroom for a moment, because she wouldn’t allow me anywhere her. it’s amazing what we can withstand.

I agree about having personal therapy. Or some place to sound off. I speak to someone periodically when I’m really struggling emotionally with it all. As for ADs I can’t stomach them. I’ve tried. And dd wouldn’t take anything like that. She won’t even take the vitamins / supplements she really needs.

Yeah my DD has flatly refused them too.

Definitely understand the bedroom checking too.

Oh bloody hell 😢

I've only had Coco pops and a belvita chucked at me so far. I think the beans beat that honestly.

What fun, hey.

Hmm I dunno did the Coco pops have milk on?

I remember on what the FB groups for parents of children with ED that the vast majority of the parents ended up on antidepressants 🫤

ive had various sandwiches and a yogurt chucked at me. I remember on earlier threads one mum said her daughter put a foot through the oven door 😱 and another child kicked a window out of the car. The mum drily said they didn’t do snacks in the car after that 🙈😂

You do have to try and find the humour in these situations when you can!

They did indeed 🙄

Dd wouldn’t take anything not authorised. Demand avoidance. The only time we really tried to force her to eat something was when we tried Eva Musby pre ED coach. She booted dh in the chest hard and tried to throw her food, which I stopped, otherwise her bedroom would have been a disaster - fajita wrap with crème fraiche, cheese, veg (the ED made her go veggie).

She automatically throws anything she hasn’t agreed to. So I don’t attempt anything non packaged, but she’s thrown plenty of pain au chocolat before finally agreeing to eat one as part of morning snack. My strategy has been to attempt to shut her bedroom door before she’s had chance to throw it.

As for ADs for parents, that doesn’t surprise me. I can’t take them unfortunately.

I'm slowly realising Musby is NOT going to work for us. It's all her you tubes the ED send me to watch and it's her book they recommend. It does not work for my daughter at all.

Just planning tomorrow's meal. Nothing liquid. Nothing mushy! And definitely won't be serving it on a tray. Trays can be used as weapons!!

Oh my 🙈. Yes a tray is a weapon. As for Musby, is your dd ND? Or suspected ND? I think they can be too heavy handed for a lot of people, who aren’t NT. You may, however, be able to soft touch some of the techniques when your dd is well into recovery.

Is your dd coming home still as I thought that was just at the weekend?

Refusing the supplements is so frustrating when these are just a basic to plug the lack of nutrients. Luckily dd did take them when she used to get stomach migraines, because one was to support that.

@CuppaTandBicky oh we’ve had bread torn up and thrown , babybel’s thrown and the worst was a glass of milk poured on the wooden floor. It’s probably gone between the slats and will come back to haunt us soon 😂

also magic plate didn’t work for us. We plan evening in advance and agreed beforehand. There are set snacks which go on repeat. Luckily DD is sort of in a routine. She is trying to let me make some things such as breakfast but refuses to leave the kitchen as she finds it too stressful with the element of unknown. I can’t sneak anything in secretly but our team told us not to. I figured as long as we’re following the plan it’s ok if she’s helping.

She loves cooking and apparently my omelette is below par. She wasn’t happy with the amount of butter today and scraped some off which was against the plan though.

I know we’re a bit further along than some others though in terms of what is being eaten. But she still isn’t putting on any weight 🙄

Yes we are 99.9% certain she is ND. She certainly has all traits and has been completely avoidant of demands since being very young. Everything has to be her idea.

She had home visits during the day at the weekend but they went badly (as in she wouldn't eat a thing). The plan now is to try home visits at lunchtime again today and tomorrow and see how they go. As you can imagine i was dreading today and am dreading tomorrow even more.

Milk is the worst! Although our cat might sort that out!!

I imagine Eva Musby and her daughter are lovely lovely ladies, but entirely different characters than me and my family. I weirdly envy them their positivity and closeness despite what they have gone through.

The idea that breezily announcing I know what they need and suggesting we sit down and scrapbook together afterwards will have a positive effect on DC is almost laughable to me. If I prepared a magic plate they would never leave the room to find out what was on it. The only reason I can only imagine my DC giving into this to is to make it it stop. But given they can just walk away this seems incredibly unlikely! But - it must work for some, it is so heavily recommended.

I think a lot of the treatment approaches and carer support sessions are predicated on having someone who is fundamentally amenable, either wishes to get better or wants a certain outcome - holiday, school, friends - enough to tolerate getting better. I have never seen any advice or role play or scenario which even considers the idea the edi won't leave their room for food, they all begin with the parent and edi sat next to each other with a plate in front of them, and the edi openly expressing fears the parent can respond to. It doesn't cover the person who will only come out to scavenge some scraps once they are 100% confident you won't see them, or the person who asks for a meal to give you the impression they're eating then chucks it down the sink, or the person who never tells you anything except they are fine but hunts down pencil sharpeners so they can remove the blades

Totally agree with this.

Me too. DD is ND with demand avoidant traits and there's no way we could do that.

On the food throwing, tender stem broccoli roasted in sesame oil and soy sauce will not come off the wall sadly. She actually loves it, but that was a very bad day.

Oh no I can imagine soy sauce being a tricky one!!

Just out of interest have you come across anything that has worked for Nd/demand avoidant child?
Today I am trying to agree a food, any food (not necessarily meal plan), present it to her and she either eats it or she doesn't. If she doesn't we go back to the ward. I'm not mumby-ing today!!

I'm in 2 minds about whether DD is ND. She certainly shows traits but that could be the ED.

We have had success with doing a weekly meal plan. It means she still feels some control and part of the decision making but we're not doing it at meal time or right before when stress is high for her.

I'll be interested to see what others suggest. We have no luck with prompts to eat at meal time - she absolutely hates them and they seem to do more harm than good. She won't be distracted by games/TV or anything like that. It feels so daft to just sit there at the table though with her demanding to leave over and over.

I have both the Eva Musby book and the Maudsley one (skills based caring for a loved one). I like bits of both. The animal metaphors in the Maudsley one annoy me but I like the idea we are supposed to be gently guiding our kids and there's a lot in there about how to talk to them about change and their feelings. I think Eva Musby has more practical advice about meal times, albeit we haven't had much success with the advice.

I think Eva Musby works better for the younger kids, I think her dd was about 11 when she first became ill? My dd had just turned 14yo when she was ill and I found the book and techniques helpful.

Once they’re post 16yo I don’t think it works as well as they have much more autonomy.

I think you have to trust that you know what works best for your kid, you’ve been making them do stuff they haven’t necessarily wanted to do all their lives.

@CuppaTandBicky I definitely think that’s the right thing to do, talking her straight back to the ward. You can only ask so much and have so many colours added to your kitchen xx

My dd. I have been told it’s anxiety demand avoidance rather than PDA. School didn’t spot a thing in the ND front, so zero adjustments for her despite having very high needs.

I think you’ve read a lot of the stuff I’ve said about my dd. Because of her profile she eats mainly alone. Only twice a week with us. She decides what she eats, but it has to be enough. I can’t hide stuff in food. I did it all by increasing the amount I gave her by imperceptibly, which makes a staggering difference over time.

Get yourself in contact with Jenny Langley / Charlie Waller trust. I think I’ve put links on this thread. She talks about adding a drop of oil as a starting point. Thats about all you could get away with if your dd is like mine. Dd has lots of baked broccoli and I toss that in a tiny amount of oil.

If you need to go my route, you will find all sorts of tricks to to help give her access to food Opening packets as it can be hard to do that. Eating desired foods in front of her a lot. Putting stuff in full view at the front of the fridge/ cupboard.

As for immediate eating, which is what you’re actually asking now I’ve thought about it. Very low demand. So non threatening low level communication. ‘Here is your breakfast / lunch / dinner / snack. I’d like you to eat it please’. Put it down next to her. Shut the bedroom door.

When things had gone wrong, I’d get a no at times, especially when she was eating 500 calories or less **a day, but generally she’d eat even if she refused. But as I said, apart from right at the start, I only gave dd what she’d eat, upped quantities slowly. And once her brain was working a little better, I could start nudging and slowly negotiating.

Is your dd truthful in general? Mine is, albeit there’s has been occasional sneaky stuff, but nothing like anyone NT. As you’re not doing the eat alone, you can see if she will eat with you. If not, perhaps sit away from her.

I wish I could say I had, but unfortunately no I haven't, which is why we're on the verge of detention and Ng feeding. I tried working with her to give her some control as her previous mental health issues were related to lack of control, and she was 16 when the ED started so I couldn't treat her like a child. We had phases where we made a little bit of progress but it was never sustained. DD actually really loves food and is fascinated by other countries' cuisines, so the most I ever was able to get her to eat was by taking her out to new restaurants and cafes. We've tried all sorts - jellyfish, chicken feet, you name it we've tried it! But she tended to compensate for that by eating less the following few days, and as she lost more weight she stopped being willing to go out to eat at all.

We also tried taking all control away but that was a disaster to be honest, screaming, throwing food, and she began to be a bit violent towards me - I'm pretty burnt out after six years of trying to manage her mental health issues at huge cost to my own health and sanity, so I really struggled to cope at that point, and that's when she went into the psych unit.

Best of luck to you and everyone else today with mealtimes, I got a more flexible consultant in our meeting yesterday so we are being allowed to try some tweaks today before they go down the detention route thankfully.

I also agree about the very astute comments regarding Eva Musby. Dd was coming up 16 when I tried it. It’s all a bit ‘The Walton’s’ for me. Even some of the stuff taught in the Maudsley 5 part course / Maudsley book are too complicated for dd. A menu of options to a very starved brain didn’t work for her. It was lots of work at upping quantities first as described above, establishing eating twice a day, failing dismally at 3 times. And shortly after that, forcing 3 meals 3 snacks on her by telling her the holiday is cancelled if she didn’t.

As for the animal metaphors, these are of course symbolism. I get they can feel a bit patronising @Weightlossworried but the techniques of micro steps and following the principles of the dolphin, very gently at first, and the St Bernard st times really work over time.

Maudsley can be infuriating, because it doesn’t necessarily seem to work initially. But it often takes the demon avoidant several times of hearing the same thing to start responding. And the responses are so tiny each time. But cumulative over many months. And dd has come such a long way.

it’s her last exam today - French, which we’ve been working on. She’s just about to finish. And we’ve crammed like crazy for it. So I hope she’s going to do really well. It feels as though she is. Poor girl, just one more sheet I put together, translation etc. Luckily I have a degree in it and taught English to adults abroad for several years, so I just put my knowledge together and tailored to her needs. It will be interesting to see how much her mark improves.

@StressedANmum
I’m pleased to read you have someone more flexible. I really would recommend the Maudsley stuff. I’m pretty sure you could join the courses as well. They ask for a contribution as it’s free. And the techniques aren’t just for ED. They work for MH in general if you adapt them. I hope something changes for your dd soon.

As for your dd’s reaction to trying to take control, this is exactly my dd’s and why the ED coach recommended modified FBT. Ie allowing her to eat alone but not all of the time. A balance. And just enough family input to be bearable as without that she says dd would come unstuck.

@Mummyoflittledragon thank you, I will check out the Maudsley and also the Jenny Langley/Charlie Waller you recommended up thread - your DD sounds like she has similarities to mine. She also mostly ate alone, and preferably only twice a day, one snack on a drive with me in the morning and then a small dinner mainly on her own, but sometimes with us.

Couldn't help but laugh at the demon avoidant typo - it certainly feels like that now and then! Hope the French exam went well.