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

[Mummyoflittledragon]

New thread. The old one is full…

She really enjoyed prom, it was so nice for her to have a normal teenage night. We let her sleepover at a friend's and agreed a pick up of 11 so a late breakfast.

I'll broach CAMHs with her later but I'm not going to make her go or be weighed this week. We've only just got back to normal and the last few days she's been out with her sister and eaten out, had snacks she wouldn't normally have..I'm not undoing all that good stuff.

I am anxious about relying on looks alone, she doesn't look drastically different despite being underweight. I think unfortunately she would have to get very poorly for it to be obvious. We'll take it a week at a time. For this week, it feels safer to not weigh.

Hi @Weightlossworried its
lovely to hear she had such a good time. I am really pleased she went and you had some time to yourself.

Remind me how you started on this journey. Did you your daughter lose a lot of weight? Has she always been small? Did they look in her red book to decide on her weight to height. I know they have said some girls can be 85 Percent weight to height as that would have been their natural path. I’m not for one minute saying to stop the help,I am just wondering what help your daughter needs.

I know the sessions have never gone well. I wonder if you showing her how good life can be will help.

I know with my daughter constant appointments etc sucked all the fun out of life. I had to be more led by her and what she needed. This isn’t advice I would give it everyone, but if she is improving and her knowing her weight is going up and down doesn’t help her, perhaps like you say leave it for a few weeks. They’ve never been worried about her physical obs have they? Sending love and support xx

She lost 5kg but she was petite to start with - 46kg at 5ft4. She'd only been eating about 600 calories a day. That's interesting about the red book, no they've not used it. I might take a look. I don't know what weight she'd have to be to be the official 'healthy' weight to height but I've always suspected it might be heavier than she's ever been.

They are worried about her obs but not because her heart rate is low, because it is high and jumps up significantly on standing. She is very stressed by the appointments though.

She's actually said she's not bothered about going this week as she knows she probably hasn't restored weight. If we go I'm going to demand blind weighing or no weighing at all. Her eating has been all over the place and her weight fluctuates so much, I really can't call what she'll be tomorrow. Either way if it's a loss the ed gets a boost and if it's a restoration we have to go through the hellish time we've only just come out of.

Hi everyone, recovery is so hard!! We just keep going up and down over and over, round and round, this week was a 0.5 loss :( I wonder if the weather hasn't helped. The dieticial was quite suprised, as she gained last week and has stuck to the plan. He has upped it a bit more, so now she needs to have 3 slices of break at lunch time and he's added juice to breakfast. Hopefully a few small tweaks will make a difference. DD cried at the appointment for the first time as I think even she was suprised.. I feel like they must think it's our fault for not watching closely enough...
I find it hard to slip in any extras, as DD finds it especially hard to deal with uncertainty, so likes to know exactly what she's going to eat. It's interesting because I read about the famous minnesota starvation study, which said that they became anxious about food running out .. our DD is like this, our fridge has to be fully stocked and she panics if someone else eats something of 'hers' or that she might be having, even if it's not close to running out.

@Weightlossworried I'm so sorry you've had such an emotional week. Crying is something I do quite a lot now.. the feeling of doom is just the worst, and the not knowing if they will ever get better ... sending love xx I'm glad your DD enjoyed her prom, hopefully it gave her a taste of normal that she will want more of.

That sounds really rough @Raspberrysins it must be soul destroying for you both when you're sticking to the plan and still showing a loss.
I always feel like the ed team must think we're rubbish and everything is our fault but I think actually that's more our inner voices giving us a hard time.
Let's try and be kinder to ourselves!

@Weightlossworried very similar here - v small framed, taller with total loss 8kg but immediately regained 3 of that so only 5kg below where they were seemingly forever more. It feels like health is in touching distance but never gets closer

@Weightlossworried
I’m so pleased to hear your dd enjoyed herself. Hopefully this will give her a much needed boost. I find my dd eats more when relaxed.

As for the weigh in, I think you’re so right to keep insisting on this.

@Raspberrysins
The black fog will lift eventually. I’ve had plenty of those weeks and I am you’re finding it so tough. You will get through this.

I hadn’t heard of the food scarcity. My dd doesn’t seem to have that. I do actually though Dd has always been very fussy with her food so I’m now programmed to stress if we are running low of anything.

@unbuckle I agree. It’s relentless. My dd lost at least 14 kilos, possibly more. She’s put on less than 6 so it just seems insurmountable. I am pretty sure she was a little heavier before this last relapse.

My dd is on holiday now. I’m just crossing my fingers and toes. She told me in the car on the way to the airport she was going to go out alone to the strip at 11pm if her friends didn’t want to go. I’ve nipped that on the bud. But it’s not just the ED here. It’s her naivety and impulsiveness. And she’s also highly suggestible.

@Girliefriendlikespuppies
How is your dd?

I hope her holiday goes well @Mummyoflittledragon I imagine it's going to be no break for you at all, as you'll be worrying while she's gone.

Just back from a CAMHs appointment where after a discussion about blind weighing they decided to not weigh her at all for a while. As she's 16 they said they can't refuse if she requests to see the weight so not weighing at all might be better.

DD is furious. Which for me shows she is way too obsessed with the scales and this needs to happen. I'm hopeful that this might break the fixation but we'll see. We just can't keep feeding into it by weighing her every week. They'll do her obs and keep trying to engage with her but that's it.

I also asked what would happen if she refuses to come to appointments. They said they'd come to the house and if they couldn't get her to engage at all but were worried about her mental/physical health they'd consider using the mental health act. I assume they mean they'd potentially section her if they had to and she was refusing treatment?

Thanks @Weightlossworried she seems to be doing ok. Out till 3am or later 2 nights in a row. Fingers crossed on the eating front. I just have to have faith. She started drinking cocktails 3/4 months ago, so even if she perhaps isn’t eating as well as I like, hopefully she will make up for it that way.

As for a break, I do feel as if it is one. I am not as stressed as I thought I would be. I prepped her as much as I was able, keeping herself safe and right down to the discussion in the car on the way to the airport that - hmm maybe it’s not such a great idea to go out alone tonight if your mates aren’t up for clubbing when you arrive.

I’ve had 2 short naps today. I’m exhausted.

I agree with you re the weighing. Anything to do with weight or food, that makes an anorexic furious is maladaptive behaviour. You’re probably in for a rocky ride now unfortunately. And you can just defer to CAMHS if she’s a rule follower and that helps. It’s tricky, I know.

I presume they do mean a potential section, but they would try not to do that. When my dd was still under CAMHS and I took her to an appointment A&E for basic obs (as there was fear her heart may not restart if she had a seizure), they were clear. She was going to allow them to do the obs or they wouldn’t be able to allow her to leave.

If it does come to that, I imagine they will try to say it in a less threatening way than section iyswim.

@Mummyoflittledragon dds well thankyou for asking, she’s been home for a couple of days and I’m relieved to say that she looks well, definitely hasn’t lost any weight (may have even gained a tiny bit) and is eating similiar amounts to usual. She had a brilliant time in Australia and I think the come down may be hard bless her.

I hope your dd has a good time, a break may be good for both of you and definitely use the time to recharge your batteries.

@Weightlossworried that sounds sensible from the ED team although I think is bullshit that they can’t just blind weigh her 🙄 I think it’s good they’re talking about a possible section, it tells your dd and the ED this is the reality of the illness 🤷‍♀️ for some teens being sectioned is what triggers recovery.

It’s the ED not your dd that was furious with not being weighed, your dd is probably relieved. Does your dd have the anorexia voice? My dd had a very definite voice that told her horrible lies about herself and other people when she was really unwell.

The gene for anorexia is very closely linked to the gene for schizophrenia which is why antipsychotics such as olanzipine can be really useful.

@Mummyoflittledragon I'm glad it feels like a break and you've managed some rest. You certainly deserve it. Well, DD calmed down really quickly. When she stormed up to her room and slammed the door I thought we were in for another awful few days but she was fine by lunch.

I feel like you're right @Girliefriendlikespuppies , the non-ed part of her is relieved. DD hates the idea of an anorexic voice so I don't know if she doesn't have one or just feels like references to 'the ed voice' are us not listening to her. She certainly has two sides to her at the moment, the illogical ed side and the more rational normal side.

They didn't talk about sectioning in front of her - I asked in private what would happen if she refuses. She hasn't refused to go yet and I didn't want to give her ideas! I just felt we were close to that last week. I find it reassuring that they basically said they wouldn't give up in her or us. I know others haven't had that experience with their older teens. It also gives me something concrete to tell her if she does try and refuse to go in the future.

@Girliefriendlikespuppies
I’m so pleased your dd has come back in good health. And even better that she may even have put in weight!

@Weightlossworried
That’s great your dd managed to settle down quickly. hope things are still calm.

My dd seems to.be doing ok. I haven’t badgered about her eating. The friends she’s with eat a decent amount of food. So I’m just crossing my fingers that she’s taking her lead from then and eating well. They’re partying every night, around the pool in the day and not walking round much and I’m hoping that will have been good for her.

As for dh and me, we managed to go out for a drink on Friday night and are going out for late lunch in a bit, which with all this and my health just never happens.

How is everyone else doing?

@Mummyoflittledragon so glad you're getting some quality time with DH. Keeping everything crossed DD enjoys her holiday and you can relax, and things go on a positive path when she returns
@weightlossworried not weighing definitely sounds like the right mive for now. Hope it helps keep your DD on an even keel

A bit up and down here, and I'm having a tough day, it just never ends. On the plus side DD passed her driving test, is buzzing, and has been out for the day with a friend. But at our 6 weekly weigh in this week they were concerned with her weight, and lack of proper periods, and want us to tweak things to reverse that. It has been a busy few weeks, but the main thing is she's upping her exercise, as agreed, but not upping the snacks enough, it now seems
Us pushing back, camhs challenging her to eat more variety and in more places, means the ED is fighting back and now every meal and every day is that bit harder again
She just got back from her day out and asked if we could delay tea so she could go for a bike ride, which I agreed to if she had her snack first. She chose not to go out, and has been withdrawn since. I know its the right thing,but its sad, and tough always be the one nudging her (with DH) and seeing her struggle makes me want to cry.
I need to pull on my big girl pants and keep on keeping on, as I see all of you doing. But hot nights, menopausal mum and ED DD don't make that easy!
Sending hugs to all

@LurkyLurkyLou
Congratulations on your dd passing her test. Thats great. And I’m sorry you’re struggling. It is good your dd is still compliant. Do whatever you can whilst she’s like this as it’s much harder when they’re not! I totally get the menopausal symptoms happening et the same time though.

Dd reckons she’s eating. I would be surprised if she’s eating enough. But I’m hopeful she won’t come back in full relapse. I’m pretty sure she’s drinking at least a couple of cocktails a night, so that increases her intake a little.

@LurkyLurkyLou it's very hard isn't it? The relentlessness of it and all those tough little decisions where you know they're going to be upset.

@Mummyoflittledragon I'm glad you've managed to do something nice and have some rest while she's away.

I've got my pre CAMHs appointment jitters - it's tomorrow. It'll be interesting to see how she is when she knows she won't be weighed. It'd be nice if she's less stressed. We found a therapist for her privately and she had her first appointment this week. It seemed to go well and she wants to go back which is a relief. She's finally drinking more water and engaging with my attempts to get her to up her calcium (she just won't drink calories so we struggle with this). I'm hoping not weighing will help us nurture these little green shoots for a bit.

@Weightlossworried
I’m so pleased your dd wants to see the therapist. What a positive sign and hopefully one, that she actively wants to recover. Every tiny step, including drinking more is one tiny step closer to recovery. My dd is the same about drinking calories. She now has cocktails and I’m not sure she thinks about the content of these. But she is allowing herself to have them, which is positive. Micro steps.

I hope all goes well tomorrow.

As for dd, she’s home and she seems ok. She was very tired the early hours of this morning when I collected her, so not much talking. But what she did say has led me to think she’s had enough to maintain where she was when she left… I imagine the cocktails helped!

I am now realising that just how much of a break I had. And how much hard work is needed now. Mainly non ED to get her as prepared as possible for moving out as that’s her plan! I’m thinking if she’s prepared, she’s hopefully going to have some band width to think about eating.

I'm so glad she seems ok! Maybe a sign that, with all your amazing support, she can manage moving out.

Thank you. ❤️ I’m not so sure about the moving out bit just yet. I have a book - Successful Life Skills for Teens. I’m a little nervous as it talks about unhealthy foods. However, there is a lot of simple stuff about nutrition and so many aspects of independent living. I’m going to try to go through some of it with her. What will be will be.

I do think there comes a point especially when they’re post 18 where we have to step back a bit. I’ll always support dd and encourage her to make good decisions in regards to her health. However ultimately she is now an adult and full recovery needs to come from her.

I have the same concerns @Mummyoflittledragon for when dd goes to uni in September, she is going to have to buy, prepare and eat 3 meals plus snacks a day. I am encouraging her to make her own meals now but she still finds things like using fats and knowing what portion size difficult.

@LurkyLurkyLou you're doing a great job holding the line with your DD, I always struggle with the enforcement side of things, as my DD is so unhappy it feels really hard to be the person making her yet more miserable. Brilliant that your DD passed her test though.

@Weightlossworried fingers crossed for the CAMHS appointment tomorrow, and that's really good news about starting with the new therapist, hopefully it will help.

@Mummyoflittledragon that must be quite terrifying, the idea of DD moving out and being fully responsible for her own eating. But it sounds like you've put an incredible amount of work into supporting her and getting her as much help as you can within the limits that she's created, so I guess all you can do is trust that will help to keep her stable.

We've got a meeting with DD's consultant this afternoon, which I am not looking forward to, they continue to be incredibly inflexible. DD has been there 8 weeks now and is absolutely desperate for a break from the ward, but they keep refusing. Even though she knows she really needs the help, she's adamant she will discharge herself the moment she can do that without risking being sectioned, which means she'll not actually get to the point where they provide therapy. So we'll be back to square one in no time. She is so distressed, it's getting more and more difficult to get her to go back onto the ward after visiting.

We need to get them to see that if they want to keep her engaged with treatment, they need to allow her a bit of freedom so that she can gather the strength to keep going, but I am not hopeful that they are going to see our point of view.

@StressedANmum I hope the appointment goes ok this afternoon. It sounds incredibly frustrating when you can see what would help her engage with treatment and they won't listen.

@StressedANmum
Your poor dd. It’s so tough on her. I hope she manages to reach her goals so that she can go out more. Good luck with this afternoon.

As for my dd, yes it is pretty scary. I think her going, and I’m presuming she will go, will be very good for me. I’m not sure about dd just yet.

@Girliefriendlikespuppies At 18, I agree I have to step back. The issue is dd hasn’t yet admitted to being unwell. I think she’s aware there’s an issue with her eating, but that I’m making a mountain out of a molehill.

As for what you’re talking about, my dd has no idea how to do all that stuff. And I will gladly teach her. She did well on a week away with 2 girls, who eat very well. That’s a big step forward. But they will have supported her through this as unlike many teens, they eat breakfast. It’s not remotely in the same league as your dd.

Thanks @Weightlossworried

I have literally just had a message from DD to say they've just told her they're starting the process to detain her so they can force feed, without even waiting to speak to us!!