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

[Mummyoflittledragon]

New thread. The old one is full…

Not as yet. We have gone up to 2000 cal today so fingers crossed.

Thanks for your responses. It is very worrying and dd is blissfully unaware. I bought her and her friend the book Success Life Skills for Teens and gift wrapped them. It’s pretty good and ND friendly. It’s American so some of the saving / budgeting stuff isn’t relevant. NB And does say something brief about unhealthy foods, so may not be good for everyone, but for the most part, it talks in good terms about healthy fats, whole foods, eating enough protein.

Dd has pretty much no knowledge of any of this stuff and I’m betting her friend does, so maybe she will say something. Idk. I have a copy for me as well. And I intend to go through some of the shopping, cleaning, organising bits with her. Get dh to do the saving / budgeting as she has no respect for my input on that score 😬.

Dd copies people to fit in, so it may work well @Raspberrysins. But she’s going to be very overwhelmed and it’s a big risk. I know her and if she actually realised what she’s signing up for, she wouldn’t do it. However, once she’s there, she wouldn’t drop out and come back either unless forced to do so. I also hope she gets sick of it all and starts to eat normally.

@Anothersetback
Thaf sounds incredibly difficult for you. I hope your both your dds mental health will improve. As for contacting the university, unfortunately disability won’t communicate with me on specifics unless dd is present. She has at least given consent for me to talk to them (as I say with her present). Maybe well-being would be less stringent if their input were needed. Idk. As for biscuits, in principle yes. However, dd has been unable to open a packet of biscuits for several months now. She can open Doritos but not Wotsits. She needs to know they’re being eaten by others to assuage the guilt I imagine. And once the packet has been started / opened, she can finish them.

I will look at the Maudsley stuff thanks for the heads up.

@StressedANmum
Telling a parent to get up to full portions from 500 calories in 10 days sounds completely unrealistic and potentially dangerous. Your dd will need to increase her intake to continue to see weight gain, yes. Idk how much that will be. It depends on the individual. And it depends whether she enters hypermetabolism or not. This is where the body needs a lot of calories as metabolism speeds up, which is common once refeeding starts.

Mummyoflittledragon
Trust me, both dd refused me to communicate with any HCP, or university staff since they were allowed to refuse (so since they were16 years old).

But that doesn't mean you can't email them. I emailed both cahms and disability department but with the standard reply from them they won't be able to discuss anything with me. Hopefully they take/took some of what I said on board....

Yeah I know what you mean by not opening the packet of biscuits themselves but hopefully they would like to share with others... Especially in halls where they have close contact with other students....

@Mummyoflittledragon it was totally unrealistic and we never got anywhere near it. But even when she was first admitted to the ward, we were told several times that they aimed to get her up to full portions within a week to 10 days. She finally got up to full portions yesterday after almost 9 weeks, and only then because she can't now refuse.

It sounds like you're doing everything you can to make sure your DD is prepared for going away, hopefully it will pay off.

My dd seems very oblivious to how under prepared she is for uni @Mummyoflittledragon, I think she’s probably in denial about it tbh.

Yesterday she opened the cupboard and exclaimed the snack fairy’s been that’s good 🤦‍♀️😂 I was like you do realise the snack fairy isn’t following you to uni right?!

Im going to start pushing her to buy and prepare a lot more of the food she needs now to try and get her into the habit.

Does the uni your dd is going to offer accommodation and meals? I know some unis do which might help.

@Anothersetback
That’s good to know about just contacting the university. I get this feeling the ED will take longer to go than if she stayed at home. Que sera.

@Girliefriendlikespuppies
That doesn’t surprise me about being underprepared. And lol at the snack fairy, exactly!

Your dd fed herself for the 3 or so weeks she was away. From what you’ve said I think she will cope. And a lot of that is down to your perseverance and love.

Dd doesn’t want catered btw. She eats a limited number of foods. Catered wouldn’t work for her. I am guessing that’s the same for your dd.

Anyway she’s declared today she’s off meal plan and has blocked me, refused to have lunch, went off in her car for a couple of hours. This really pisses me off so much. I’m not worried. What will be. I’m fed up. Perhaps she’s eaten now. Idk.

Dd is funding her accommodation from her trust fund, which is causing a lot of friction. She thinks we should pay for it. But we won’t as we don’t have money to burn. Dh is just donut to lose his job I think and she’s on a course she doesn’t want to do at a university miles away, all because she is following her friend, who has always dreamt of living there.

Dd refused to even put the course she wants to do in second place. It’s now the only one in the country doing exactly what she wants as a lot of universities have dropped MFL. And it’s an easy commute. Or if she insisted on living in, I could get there easily. And it is higher in ranking. The offer was not to be sniffed at!

@StressedANmum
Nine weeks doesn’t surprise me. These things take time. It is good your dd is on full intake now. I’m sorry she’s needing to be forced. Poor thing.

As for my dd, yes, I am hoping my hard work will pay off.

Thanks
After breaking down and not wanting to come at all it's so far so good on our trip, including managing(home cooked) dinner on the flight. DD currently isn't adventurous with eating unfortunately, so I think there will be sticking points.
The smaller children are DN. We've always all helped look after them, DD included, but that will need to be different this time, and I'm ready to do more if needs be to facilitate that. Just us so far though so more chill

Keeping everything crossed for you @Mummyoflittledragon
The balancing act between support and independence is always tricky i guess but more so with an ED in the mix

Thanks @LurkyLurkyLou,

I am so pleased the holiday is going better than expected. I really hope things will go smoothly for your dd and the Littles as well. And that hopefully your dd will be able to relax.

As for my dd, this is a recurrent issue. And yes it is tricky. Dd gets distracted and forgets to eat. She’s been zooming round, not rested and recovered from her holiday, missed a couple of afternoon snacks and probably not eaten as much as she should over the past few days.

I really hoped after she came back off holiday that this wouldn’t happen. I thought she’d turned a corner on that score. However it’s probably that her friends were eating a lot (they both eat well) she copied them. And she’s still pretty horrid today again.

Dd is equally dreading going away with us. She only agreed as we are going to see FIL. She’s really annoyed we haven’t booked a hotel with a pool, so as she can sunbathe and meet people her age. Where are these hotels?? We aren’t going to a tourist destination. I’ve booked a nice Airbnb with a hot tub 10 mins drive from FIL and a train line. I get a pool is nicer, but the very reasonably priced place we have been to before with a shared pool (in the arse end of nowhere) was fully booked and it’s 45 mins from FIL now he’s in a home. Then she complained we should have gone to center parcs, except that’s door to door over an hour and a half to FIL and I cannot imagine her wanting to stay there every day and it would have been useless for day trips etc.

I’ve been off thread for a long time, hi everyone, I hope you are doing ok. We’re going round in circles - been ‘in treatment’ for a year but still hovering around 81-85%wfh. I don’t think any of her psychological needs have been addressed, it all just hinges on a meal plan we can’t comply with because we have to work. I took four months off last summer, can’t do that again.

how do other people manage? The therapist is basically saying ‘people are normally under the service 3-6mths’ and pushing autism screening again (we’ve done it once before and she was screen negative so no assessment).

That sounds incredibly difficult @Glitterfarti

I can relate to the being stuck, although we've not been at it as long as you. We've been told the average time people spend in the service is a year. 3 months seems incredibly short for such a complex illness.

In terms of how we manage - sheer luck. We both work flexible hours from home. We can work around each other to provide meal support.

I don't know how the hell we'd do it otherwise. This is the issue with fbt. It makes a lot of sense but it's not practical if parents have to work.

I wish I could suggest something practical but we're as stuck as you unfortunately so I can only offer solidarity

Remind me how old your dd is @Glitterfarti? How much is she currently eating? I think if all else fails I’d push for inpatient support, has that ever been mentioned?

Hi @Glitterfarti what wfh did you start on, and what are the team aiming for?

As I have said here many times, I’ve no idea how we’re supposed to do this and work!

4 months off can’t be repeated as you say!

@Weightlossworried how has your week been?

@Pearl97 pretty good..she's properly finished a few meals this week, as in a completely clean plate. Normally even when she eats well she leaves something. She's also drank strawberry milk - first-time she's drunk calories in ages. I was feeling pretty hopeful for once.

However, just done a quick sweep of her room and found a vape. I know a friend of hers vapes and I imagine she's going to claim it belongs to her. I am wondering if she's feeling unsettled by eating well and is using it as an appetite suppressant? I'll ask her when she's home.

We didn't hear from CAMHs when we cancelled this week's appointment..I thought they'd be straight on the phone. I plan to ring tomorrow to discuss whether we can do obs and blind weighing at home. And if they won't go for that I'm insisting on very infrequent blind weighing. It's been so good for her to have a few weeks off seeing her weight.

@Weightlossworried that is great! Not about the vape, but these kids all seem to want to try vaping!

I wondered if they would call. You would hope they would call to check you were all ok. I think that gives you hope that you can ask for less appointments etc. I suppose it depends what help they are giving you and how helpful they are being. I think you’ve handled this well, I really hoped you would have a good week. Definitely call them before the appointment this week - do they message each week with an appointment? It’s lovely to read a positive update from you xx

They tend to make the next appointment while we're there so we're currently 'appointmentless'.

Me and DH do find it helpful to speak to them but we can't really talk much in front of DD. I was nipping in for a quick chat on my own before she came in but she's now so distressed while she's there I just can't do that to her. In an ideal world we'd do obs at home and check in with them once a week for advice.

@Weightlossworried I would definitely ask for what you think is best. You are in control. Unless they are worried about her physical obs or she is very very low weight.

I bet it felt good to write appointmentless! You have the private therapist so you’re not denying she needs help.

Thank you. Unfortunately she did not take the conversation about the vape well..she admitted it was hers and she was using it to help her feel less stressed. She's not speaking to me and refused dinner and her snack last night. She's also saying she won't go to therapy any more..

I wish I'd never checked her room. I've basically managed to ruin everything. I'm still going to ask to do the physical checks at home because CAMHs won't help with this. I can only hope she gets over it quickly.

Sorry for the me-rail @Glitterfarti

@Weightlossworried don’t feel bad about checking her room, the vape is an unhealthy coping mechanism and I’d view it in the same way as self harm or finding blades etc. It’s fine to hold a firm line on it, you’re letting her and the ED know that stuff doesn’t get passed you and the ED won’t like that 🤷‍♀️

I know you're right really. It's just she'd come back all happy from a trip out with her dad where she'd had a chocolate milkshake - absolutely amazing choice of snack from her. And then it all fell apart.

@Weightlossworried
My dd vapes. Not all the time, but when she’s out. She accidentally sent me a picture of her holding one. By then she was 17. So many of them do it. I’d seen her with one a few months earlier, however, she claimed it was her friend’s. I didn’t really believe her, but because I was under such pressure and control by her, it was more than I could deal with. My dd is very punitive.

I think as always, you just give lots of love. Little messages, which you know so well how to do. I get it’s so easy to panic. You really haven’t ruined everything. You are muddling through and doing so well. And now your dd knows you know and disapprove. This reaction could be all about her, not you at all. She could and very likely is really beating herself up about. Just hang onto how fast she’s turned things around from her last CAMHS session.

I imagine you read my last comments about dd having not eaten enough. I was feeling as you are now. As dd has so little reserves, she was teetering on relapse and became as ever in these situations, nasty. She declared she was off meal plan and went down to eating 4 times a day. 3 meals, 1 snack and breakfast at midday, lunch at 4pm etc. I have managed to turn her around, although breakfast timing is still sticky, so lunch is a bit delayed. She’s been back on afternoon snack for 2 days and I had to remind her yesterday. You will do the same with your dd. Just give yourself a hug, go somewhere and have a good scream or whatever you need.

As for the therapy, idk about that. If you would lose the money for the appointments, maybe talk to the therapist yourself? They may be able to give you a bit of respite and have ideas on how to get your dd back on track. Please try not to panic. My dd has refused to speak to the coach from February. She’s had 2 short periods of talking to her. You can get her go back to therapy later if she still refuses.

Just as a general thing, the way I tackle things with my dd, unless really severe is to do it by referring to a friend, kids in general, something I’ve seen on the tv etc. These things sew seeds. So when I knew dd was making herself sick, I tackled that, gently. And stopped it.

@Glitterfarti
I am sorry it’s so hard. I don’t have any solutions for helping you to get your dd to eat more. As for the autism assessment, idk how good prescreening is. And as your dd is no eating to plan, I would wonder how they can tell. I was always told by both the coach and CAMHS you need to be eating well to get the correct outcome as people, who are NT can take on autistic traits when restricting. I know that’s not terribly helpful for you right now either. But just fyi.

How much is she eating atm? And is she definitely eating that? As in can she be trusted to actually eat and not dump food?

Thanks everyone. @Girliefriendlikespuppies shes just turned 14. She was 76% at diagnosis and I got her to 93% when I was off work. She eats when I’m with her but doesn’t when I’m not, I have to be physically present, she eats next to me on the sofa. Admission has been vaguely discussed as a threat to encourage her to eat more but it’s all very wishy washy. Agree that a starved brain behaves like a ND one, no idea how they hope to unpick that.

Well done on turning her around @Mummyoflittledragon Your strength and persistence is genuinely inspiring.

Tbh, I wasn't too concerned about the vape as I know it's so common. Not ideal but it feels like we have bigger fish to fry. So my reaction was just to ask her about it, why and when it started etc. Obviously I couldn't just leave it with her though. I can't believe how much of a reaction it's provoked from her.

She has actually eaten breakfast this morning though so that's a good sign. I'm actually out of the house in a meeting today so maybe absence will make the heart less hateful!

The nastiness is hard isn't it? I'm sure your daughter will look back one day and appreciate everything you've done for her @Mummyoflittledragon

@Weightlossworried I don’t think you’re wrong to check her room or have a conversation about vaping. How old is she? I do think it’s very, very common even in young people who wouldn’t dream of smoking actual cigarettes.