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

[Mummyoflittledragon]

New thread. The old one is full…

Strugglingandtired
Because I read purging I just wanted to comment.
Dd from young age would binge, steal siblings chocolate etc. However she did a lot of sports so remained skinny. The lockdown came so no sport so she put on weight. Then the purging started. Purging became so frequent that she lost weight. With help of camhs she battled the purging, but basically started restricting.
After discharge from camhs back to binging and purging...

Anyway,
Watch for the purging, I never figured out when she was actually doing it.
Keep an eye on her teeth, I only found out when she needed 10 fillings!!

Just giving a hand hold to everyone this weekend.

Weekends in hospital always seem long, so I hope a pony or other nice visitors call
in, and I hope you get some time off the ward on your own. @CuppaTandBicky @ThatSparklyOliveBird

@Weightlossworried I hope this weeks appointments went ok.

@Raspberrysins I hope your school continues to be supportive as you enter the next week of your two weeks off.

@Mummyoflittledragon thanks for all of your input this week, I hope now the exams are over you are able to take some time to yourself. You really deserve it. I also hope that your daughter continues to improve.

Sending love and strength to everyone xx

Hello all.
So sorry to read all the updates. I've not checked in here for quite a while.
My daughter is in many ways a lot better than a year ago, forexample' she sometimes prepares breakfast or lunch herself. i am grateful but it's still so hard and I'm exhausted and sad all the time.
Shes never managed the 3 meals 3 snacks consistantly. But we were sort of there. Meals were very controlled but slowly we saw small improvements.
She's now finished a-levels and school and without the routine Im worried where things are going. She misses breakfast as she gets up late and goes straight to lie on the sofa. Also as she is now going out most nights, dinner is basically a snack. What I'm really struggle with is her mood when she eats less it's so much worse. I've talked to her today about needing dinner and she's furious. The upset compounds as she wont eat when angry. But i feel I have to be 'bad cop' and say she should have breakfast and dinner.
Any tips for this period. I think a job would be useful - to get routine back but I have to approach everything very very gently.

oh - and on the food throwing posts. Mash potatoes stick out in my mind.

Wishing you all some good moments this weekend. Maybe a hug from your poor loved ones.

Hi everyone, I'm so sorry for those of you having a really rough time - it's such a ride! This time a week ago I was in a very dark place but today I am feeling a bit more optimistic. Thanks @Pearl97 yes I have one more week off work before I need to go back - my brain has turned to mush! I am now just a dictionary of calories and snack options! My DD has been sitting some of her Year 10 mocks at home under my supervision. She's not done any revision! Very good news with our Camhs meeting where she gained 0.8 kg this week, and has actually stuck to the meal plan. She has decided she is going to continue to stick to it, but I guess we'll see... I still can't get her out of the kitchen!!

@Thisnowtoo
I’m sorry you and your are dd still struggling so much. Mine has likewise just finished A levels.

I’m not sure that your dd would have the stamina to hold down a job. Especially if she’s not eating the three meals and three snacks. Jobs their age are often very manual and she would come unstuck waitressing for example, especially as it will be shift work and she may end up not eating at all during those hours. but I get the need for structure.

My dd is finally ready physically to work, but I don’t know if she is mentally. And she’s going away such a lot that it won’t happen.

I get it’s much harder now that our dds are older. My dd wasn’t playing ball at the start of the year as she decided she was an adult. So I basically sat on the sofa in the kitchen for a week during February half term and every time she came down, I just said grab yourself something, grab yourself something on loop. Idk if that’s realistic for you to do. It did work to turn my dd around. And from that relapse, I got her back on track slowly, but only 3+2 rather than 3+3 as she refused morning snack.

When your dd gets up and goes on the sofa, do you ask her to go and get her breakfast? Because that’s what I do with my dd. It pisses her off, but I just ask her, walk away, then a few minutes later, she does it. And if your dd isn’t at the stage to be able to reliably get her own breakfast, I would take it to her and say ‘ here’s your breakfast, can you eat it please?’ Then leave her. I’m figuring that your dd is getting up and eating it quite late, so I’d be trying for a substantial breakfast and counting as morning snack all in one.

If my dd is in an okay way, she gets her meals herself. If she isn’t, I often have to go and remind her and during her exams, I was taking it to her. And it really is a case of just persevering, persevering. I just take the food to her. I poke my head around the door or text her and say it’s lunchtime, it’s 4 o’clock can you go and grab yourself something to eat? Can you go and get a snack?

As for your dd for dinner, you need to be telling her that’s not a proper dinner. She needs a proper dinner so that she has the energy to do what she wants to do tonight. Then when she comes home, try to engage ask her how her evening was and then say to grab something. Her attitude will turn in an instant I imagine. But it’s the only way.

What about her lunch? Is that enough? At the very least, it should be the equivalent of a meal deal.

Idk how much of this she will bear. If she’s not used to it, it’s going be a tough gig. So if your dd really is eating very little, I’d try the kitchen thing if you can as she will respond better to all the prompts… but I don’t know how realistic it is to be in your kitchen a lot or if you or she even home enough.

What is her approximate daily intake in calories?

As for money. How does she get that? Because to a certain extent, she shouldn’t be being allowed to do all of this stuff if she isn’t eating enough. I get that she’s probably 18, but she still lives in your home. And you’re going to worry about her whether she’s 18 or 58.

With my dd, I got her back onto morning snack by getting her to agree to eat 3+3 if we paid for her to go on holiday with her friend’s family. And I can’t let her go unless she’s eating enough, which she finally is now. The other part of the agreement is to be open with her eating and to check in with me at least once day as she’s going on a holiday in three weeks, just with friends (this one is a holiday, that she planned without my agreement, so she’s paying for it).

Is there anything that your dd really wants to do? Maybe you can use that to get her onto meal plan.

I only take food to my dd that she’s agreed. I only make meals that she’s agreed to eat. So the only food throwing I’ve had was morning snack. And that was a pain au chocolat and she’s eating it now.

Other tips include: sharing the food they eat. It can be hard for them to open food. For dd that’s things like crisps and biscuits, because of feelings of guilt. But if they see that you’re eating it too, that gives them permission. And I put the food dd eats at the front of the cupboards and the fridge. We have 2 big kallax fabric drawers in the cupboard. One containing crisps, one containing biscuits and sweets. Dd’s intake is very ARFID.

I get it’s tiring. Dd became ill in year 11. It’s looong.

@Pearl97
Thanks. Am very depleted and not in a great way. But it’s time to put myself first a bit more!

@Raspberrysins
I’m really pleased you had a good week. It makes such a difference.

Thank you @Mummyoflittledragon you are probably right about the job.

She went to adult ED services in Jan. Her ED therapist passed a message to us not to tell her she should eat as that makes it harder. So i only occasionaly gently ask if she wants help with breakfast. It was going OK she'd normally miss breakfast on Sundays but aside from that ok - we'd get her the meals she wanted. She dropped morning snacks but would have chocolate and crisps early evening.

But since school finished it's become harder.
Talking to her today she made a parallel between missing breakfast and only having a snack for dinner 3 out of the last 4 nights, to something the ED therapist said about a light lunch being OK if you are going out for dinner. I did say its nor really comparable. She just got cross.

i did just tell her she had to have dinner but she just got very very angry. I worry it back fires. She is now refusing to have even the snack before she leaves.

If she is in a good place she'll eat chocolate so we always have that in stock. Yes. I make sure she sees me eating lots of food and snacks and chocolate.

I can't really think of anything she wants - to motivate her. Unfortunately we gave her some money for finishing exams. She has friends now but she's really just building friendships after becoming issolated - so no holidays planned with them. I think that must be hard for her as all her new friends have holidays planned. if i try to stop her leaving the house that will get very messy. I did that when she was really ill. It was necesary then but horrible.

Sorry, i just feel like the illness takes her away and I cant reach her. Hopefully she'll find a way out again. My DD has been ill for about 1.5 year. You are doing a great job to keep going - but I can imagine how exhausted you are.

The food throwing was a while ago. I thought the thread was amusing - black humor.

Oh god yes I totally get not stopping your dd from going out @Thisnowtoo. We stopped dd last year when she was still 16, because it wasn’t safe. It was cold, winter, she was deep in relapse and we wanted to get her to agree to go back on meal plan and add a coupe of foods in her diet. She tried to escape out of an upstairs window, became violent and called the police on us.

Your dd has got a friendship and it’s so important for her to socialise.

As for the ED therapist, idk what she meant by a light lunch if going out for dinner. My dd eats more at dinner for sure and her lunches are never particularly copious, ie a meal deal. And I have tried hard as much as possible to get her to eat evenly throughout the day.

If it’s the word eat that’s triggering, ‘grab yourself something’ is not, at least for my dd. We use an ED coach for dd and that’s what she told me to say. The idea being to work a lot on innuendo. So not actually saying the words. But dd knows what i mean.

And if it is just the word eat, which is triggering for your dd, there is always ‘I’d like you to have this’. And I would also say stuff like, ‘grab yourself something real quick and we can get going’ when taking her somewhere, but she’s driving now. Again this is exact wording given by the coach.

For a while I couldn’t use the word snack with dd either, but now she’s eating more, she’s over that one.

From what you’ve described, it sounds as if your dd may be going into relapse. If she’s missing breakfast and dinner and not having snacks, how many times a day is she eating right now?

Btw all of the techniques I’ve described on the thread have come from the ED coach. These are for ND, demand avoidance, which she specialises in. And yes it’s been a bloody hard slog. It helps that I don’t have a job. I do stuff on the side. But I have fibro / CFS, so it really doesn’t help!

Could you try texting your dd if it is less confrontational? I use phrasing like, ‘just wondering if you have worked out how you’re going to play dinner’.

As for your dd not going away, I think that’s a good thing. And I get it’s hard for her. But if she were ill on holiday, it doesn’t sound as if these friends are long term and you don’t know what would happen. They may be lovely and come through or end up ditching her.

My dd is not really ready. She could potentially come unstuck - I’m on about the one she’s going on alone. And I’m not sure the friends she’s going with will help her out. One has ED and is needy. But the saving grace is dd told me a friend, who is a year older than her and sounds really sensible (not met her) will also be in the resort. And a lad, who I do know will be there too for most of the time. And I trust him to help dd out if needed.

And yes, it’s important to laugh I get you…

Thank you, again @Mummyoflittledragon
I think you are right about the vocabulary. I am by nature quite direct and i like clarity but the innuendos will be less triggering.
She mentioned pancakes and a lunch for father's day so hopefully that will get things back on track. Lets hope she doesnt pull back on those suggestions.
What is your dd planing to do now schools over? I think a focus on rest and recovery with as many fun activities is probably what we need. She's hopeful to go to uni this sept - but i really can't imagine that working.
Sorry you have so much to contend with - with health issues of your own. The stress can't be good for your CFS. My job has been great but after over a year of this, the expectations are for me to at my desk full time. I think I'll take some annual leave over the next weeks.

@Thisnowtoo its so hard. Mine dropped out just before a levels. Has been nocturnal for a year. Responds badly to any suggestions
Has nothing they want.

Its hell, and I am just waiting for it to be over one way or another

But - they are able to go away. Even at a very low weight they broadly coped
I think it helped them. It definitely helped me

I am sorry you are so deep in this @unbuckle
How did the sleep over go? Did you dc have fun?

Seemed to go well, they stayed a long time x

@unbuckle it is incredibly hard when they're so disengaged and unhappy, seeing your child like that is hell, you have my utmost sympathy. My DD has been out of school for a number of years and we have had long phases of being nocturnal. Ironically this last year when she's had the eating disorder has been the most productive she's been in years, she managed 3 GCSEs and some other activities before it all collapsed. Starving her brain seemed to numb some of her other mental health issues, which is worrying because it seems like that's a disincentive to getting better.

That's really great, so pleased to hear it. Having a bit of social life can make such a difference.

I just let myself have a bit of hope services would force engagement by coming to the house. But they declined, services won't do a mandatory assessment, and so here we are. I just want another adult to have some form of oversight and responsibility, I guess going back to feeling alone has really hit me.

It feels so unreasonable you have to do this alone. Other serious health issues are provided restbit.
I am becoming isolated from my family too, as they contact me less and rarely ask how dd is. I can see I am a downer but it would be nice.

Really nice that they enjoyed the sleepover. @unbuckle

@Thisnowtoo
I am likewise very direct and had to learn a whole new language. The ED coach gently told me I was basically pushing dd further away and into herself.

Hopefully your dd has managed breakfast and agreed lunch plans. I think rest, recovery and as much fun as possible sounds good.

Dd has 3 separate holidays, the one week abroad I’ve been worried about (she’s paying) plus an unexciting week with us in France near fil’s care home and another week with another friend and her family. Apart from that, she’s going to be out and about seeing friends loads and I’m sure she will go clubbing a few times. Plus going to see my mum soon. She doesn’t stop, always been the same, which would be great if she could remember to eat. And she struggles with that.

I know what you mean about university. Dd has a conditional place a couple of hours away living in halls. One of her friends is going to the same city. But they would be in different universities and halls and it’s not the course she actually wants. The only place in the country now, that does the exact course she wants / wanted is relatively local. In the end, she rejected that offer, because she wants to get away from me (ED related). She’s now not sure if she wants to go at all, but still wants to get away. I am hoping that will change as it would be good for her to take a year to recover and decide what she really wants. And I think it would be good for your dd to defer as well.

Thanks for you well wishes. It is not good for my health. And I hope you can take some time off to help your dd.

I’m sorry you feel so alone @unbuckle like @Thisnowtoo i don’t get contacted much either. It is very lonely. I hope you have one nice thing to look forward to. I find it a struggle to put myself first. And I’m glad the sleepover went well.

@StressedANmum
I can understand what you mean. I am sorry it’s been such a long slog.

So sorry that must be really hard. My child is younger so I guess I have a small element of control... Although not much!! I suppose if things got really bad physically (hopefully they won't!) there would be the chance of a section? I would hope nobody in mental health service would allow a young person to put themselves in grave danger just because they don't engage or consent to treatment.

We are now home 🙂 under the instruction to return to hospital if we have 48 hours of no eating.

Things are better than I expected (i was expecting to have to go straight back to hospital!!) We have been discharged on a very low meal plan though (still not on 2000 cal) so weight has not increased at all whilst in hospital. I'm guessing at our next appointment and increase might be discussed. She also isn't quite managing everything and there is a LOT of negotiation around things..

So far I've found limited success in letting her get half involved in the meals...i.e she can come shopping and choose the protein, the carb and the veg but I make and serve it. "Luckily" the slightly improved mood and energy has worn off now she's started eating again so she is back to depressed and no energy, so no attempts to join me in cooking!

She also eats alone, not at the table, but I'm just making sure she doesn't have any way of hiding or getting rid of the food.

I hope everyone is having an ok weekend.

I'm glad you're home @CuppaTandBicky and things are going better than anticipated so far.

I'm also so sad for those of you who have been left to support your children all by yourselves. It feels so wrong that help falls off a cliff when they're officially adults.

We had our appointment Wednesday just gone and a restoration of 500g. As ever, any gain we see is more luck than adherence to the meal plan. I think she'd relaxed a bit around friends and eaten slightly more or differently to usual. Meal plan wise the only progress we've managed is her occasionally eating the fruit we've added to her afternoon snack.

She is now very very anxious about the next weigh in on Wednesday as she is 42.9kg.and is terrified of being 43. We continue to try to persuade her to agree to blind weigh ins. We are supposed to be going to a concert on Wednesday night but I think it's going to be a nightmare either way. If she's lost weight I'll have to call it off because it involves a lot of standing. If she's gained I don't think she'll be able to enjoy it.

She's also become extremely stressed about lunch times, she blames CAMHs for 'restricting' what she can eat. They're not. She is restricting herself because she wants to weigh out pasta and I won't let her and she won't eat any oils or dressings so she 'can't' have salad. We're now stuck with only 2 choices of lunch she's rotating.

I'm feeling very tired and frustrated at the moment.

@Weightlossworried I’d keep banging on to the ED team about how damaging it is for your dd to know her weight. She sounds so similiar to my dd and I’m eternally grateful they agreed to blind weigh her as without it I don’t think she’d have ever progressed.

Im not surprised you’re feeling frustrated, it is frustrating! Well done on holding the boundaries though, you’re doing a great job.

@Thisnowtoo my dd needs a routine to eat so I strongly encouraged her to work once she finished her GCSEs. Generally she eats better when she’s busy and doing things. Being at home without enough to keep her ticking over was what triggered the ED in the first place (lockdown 🙄.)

I think the monitoring and prompting them to eat is going to be ongoing, my dd is currently in Australia and I’m still asking her about food and checking photos for any signs of weight loss. I think she has probably lost some weight but overall she seems to be managing okay.

Thanks @Girliefriendlikespuppies I definitely will be telling them. She's all over the place today, poor kid.

@Weightlossworried this is so hard when they fear particular weights. I always like to use the, I’m confused she’s not well enough for therapy but is well enough to know her weight when putting on weight is her greatest fear! Have you chatted to your daughter about blond weighing or is she adamant she wants to know. The idea she is adamant to know shows it’s crazy for her to know! I know you know all this, but I want you to feel we well are here and understand your frustrations xx