Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

@Girliefriendlikespuppies
I’m so pleased your dd is feeling better. Hopefully that means she’s eating a little more? It sounds as if she can be strong and quite resilient when she puts her mind to it. And that will stand her in good stead… I must say, I’ve no idea where she gets that from. 😉

As for dropping breakfast, I think what is happening with my dd is that she and all her new friends stay up late in the night either partying, then snack when they get back, or chatting and snacking. When breakfast comes around, I think perhaps they then aren’t up for eating breakfast. Has your dd mentioned this is the same for her? Dd said she’s not getting much sleep. So this is me reading between the lines.

It’s disordered for sure and I imagine days, when my dd has lectures finishing at 1pm, she’s not eating until maybe 2. If your dd is doing this sort of thing too, I imagine it’s the copying thing / trying to fit in. You’ve said she’s like my dd. And the autism means dd doesn’t feel hunger until she’s really hungry. And the ADHD means she forgets to eat. Then gets really hungry and reaches for the snacks to fill up quickly.

@Weightlossworried
I am so pleased to see you have a bit of a pause. It’s much needed mini respite. Take full advantage, you deserve it. Good luck for tomorrow. I know you’ll be bracing yourself for potential fallout. And yes, our dc are doing better now than a lot of kids out there. It takes an enormous amount of energy and effort as parents to do it. And still some sadly just aren’t able to.

@StressedANmum
I hope things go well for your dd in adult services. Are you allowed to go with her for moral support if she wants you there?

It’s good your dd isn’t independent yet in some ways, because it’s easier to deal with than a teen, who thinks she knows everything, but is seriously lacking in many areas. Your dd will get there. It will take longer than perhaps some teens her age. I hope she will allow you to take full advantage of that time to help her to gradually increase her skill set and independence in a really positive and healthy way.

My dd is naturally independent, but doesn’t have the skills as yet. She’s chosen a much more difficult path. And I think she’s going to be ok. I also think she has been morphing a friend for about 2 years, whose parents had a messy separation a couple of years ago. This girl doesn’t really trust either parent and her parents will only ever allow her to be ok with one or the other. I think the friend has seen what dh and I have been trying to do under her lens of understanding and projected a lot of her stuff onto dd, who is very vulnerable and has taken it on board. I’m hoping now dd is really identifying with a girl, who is close to her family, she will come to appreciate that independence doesn’t mean pushing her parents away.

unfortunately DD is still feeling really low. Yesterday she hardly spoke all day, we had a tough appointment at the ED clinic. They said they think it’s better to focus on her general low mood and the drivers for it in sessions rather than eating. Let’s see if that helps. Today we’ll see the potential new school. Dd currently doesn’t have anti depressants but it’s been talked about. She takes atomoxetine for adhd but refuses olanzapine.

I’ve not managed to make much progress with getting her to reach out to friends. It’s her 16th birthday soon - it will be bittersweet because the celebrations will be low key. I want to take her to a nice restaurant and she will have a day out with the one friend she talks to regularly. I hope she will eat at the restaurant! It’s sad because she used to have parties with lots of friends when she was younger - now there’s zero possibility of that.

@Mummyoflittledragon so glad to hear you’ve realised your DD has made a lot of progress. It gives those of us who aren’t seeing progress yet hope.

@Girliefriendlikespuppies glad your DD is feeling a little better - must have been scary. Did you persuade her to stay home for a few more days?

@littlebabycheeses99 that sounds really worrying but at least CAHMS told you. No doubt stopping the sertaline suddenly has contributed to his difficult behaviour. Ragrsinf money and spending - can you try to only give him small amounts at a time. So just enough for lunch that day and if he doesn’t spend it at a food outlet he doesn’t get more the next day?

DD shops a bit but it’s not too bad and I can see everything she spends. She earns some of her own money cat sitting.

@10YellowTulips no she went back Ystd against my advice.

I’m really fed up tbh. I dropped her back as felt like I had no choice (she was saying she’d get a friend to do it if I didn’t) and most of the food I’d bought her when I stopped her off was still there. She has definitely lost weight (some of that will be with the recent illness) and I left her with a depressing sense of foreboding.

I did try and talk to her in the car about the risks of not eating properly but I have no idea if any of that went in.

The fact she went back when she was obviously still ill (temp was down but she was really weak with a bad cough) makes me think she’s not making sensible decisions 🫤

Im also annoyed as I have had zero thanks from her for looking after her, taking two days off work and running around after her (two 4.5 hour round trips in 5 days!!)

And Breathe 🤦‍♀️

Thank you everyone.

@Mummyoflittledragon I don't know about his step count at all unfortunately - he has always shied away from exercise however so I'm hoping he doesn't go down that route. There haven't really been any signs of excessive walking really.

@Weightlossworried DS has been faking taking the tablets, I'm yet to find out what's happened to them @StressedANmum I hadn't even considered that he might be storing them. I've hidden all the tablets in the house, but I just didn't think about the Sertraline. I will try and do something about that thank you.

@10YellowTulips sorry to hear things are so difficult. Hopefully the school visit will be a positive one today? I understand how you feel about your DDs 16th, my DS also had a very low key one and it was hard not to feel sad. He also went to lots of parties in primary and had many friends.

@Girliefriendlikespuppies I'm sorry you're feeling so disheartened. Our teens rarely think of anyone but themselves unfortunately - a lot of them are just wired that way. I think the restricted eating makes that worse too.

The issues with us continue, college were very abrupt when I messaged them having not been able to get hold of them on the phone. They confirmed that Camhs had told them DS was medically well for college but that's about it. Said that his tutor would have been in touch if there had been any issues academically.

We remain very in the dark. DS has now dyed his hair bright green and seems to have got himself a piercing today. I can't really say anything as I used to have multiple piercings! But he's now asking for money for food and drink when I know he's just spent it on a piercing... so what do I do?! I feel blackmailed really.

@10YellowTulips Your poor daughter. It's awful seeing them so low. I can relate to the sadness over birthdays too. My DD had no real friends to spend hers with so we went away for a weekend.
It's good that her team are going to help with the low mood though. I hope it helps her a bit.

@Girliefriendlikespuppies I'm not surprised you're fed up. It must be so hard having all that worry for her and not being able to do very much now she's at uni.

@littlebabycheeses99 he does have you over a barrel there really doesn't he? In normal circumstances you could give him some sort of packed lunch and let him learn the natural consequences of his actions but these are far from normal circumstances we're operating in unfortunately.

Our appointment was both good and bad. DD absolutely refused to be weighed. She got very distressed. The nurse took her upper arm measurement and it has increased. That's obviously great news, it looks like we're finally having a bit of consistent restoration. I feel slightly vindicated in allowing her to eat independently at college. The family therapist had implied yesterday we were giving her too much freedom so I was worried all night that we'd messed up. I was banking on the fact that DD does seem to make less ed-led choices around food away from us and the meal plan and - for now at least - that seems to have paid off.

@Weightlossworried am glad you've had some positive news there, and that you were right to let her eat independently away from you. I really hope it continues.

@Weightlossworried I am really pleased to read your update. How did your daughter react to the arm measurement? Could they look at doing that going forward? Your daughter seems to be making great progress, I am really pleased for you both.

Thanks both. They've been doing the arm measurements for a little while now with weigh ins every few weeks - now supposed to be monthly. I asked if we could just stick with that indefinitely and the nurse seemed on board but has to check with the psychiatrist. DD seems fine with the arm measurements, she doesn't even seem to look.

@Girliefriendlikespuppies
I’m really sorry. I thought your dd had turned a lot of corners with her having gone away in the summer. I’m hoping for you both that it is just a blip. She’s a strong young woman. Just like you. I’m just playing the comments of the Ed coach in my mind. And wondering if your dd is doing what the coach thought my dd might do. Ie lose weight in the first month, but that I should try not to worry too much.

As for thanks for doing things, unfortunately that’s also not something I get from dd either. I actually ask her to thank me tbh.

@10YellowTulips
I hope the school visit went well. We’ve now been through dd’s 16th and 18th. We didn’t really celebrate her 16th. She saw friends, because she distanced herself from us, not from friends. Still, it was pretty low key. And her 18th, well she completely tanked that with us and was mean. Everything was wrong and I didn’t magic up a family party when she’d said absolutely no to any kind of party.

You just do what you can. And I really hope your dd will eat at the restaurant. What has helped with dd is looking at menus online. And leaving her to decide the restaurant and what she will eat before she goes. If she’s going with a friend, she may like to do it together with her?

@littlebabycheeses99
Thats really frustrating about the money. It sounds as if whatever you give your ds will be spent on anything other than food. Idk what to suggest as it doesn’t sound as if the credit card option would work and like us, may end up costing you a fortune. As for the step count, I was just thinking of when you say he gets cross and goes off. But if he’s not going off walking, that’s good.

Is he hanging with a different set of friends from before he got ill? I’m just wondering if he’s identifying with anyone, who has ED. Just you say he’s changed his hair and got piercings, which seem like new behaviour. The ED may have started some time before you noticed btw.

@Weightlossworried
It’s great that your dd was responsive to arm measurements again. And that she continues to put weight on. It sounds like a really good compromise. Better to have some form of measuring than nothing.

I don’t have any kind of experience with CAHMS work. I am a bit surprised the family therapist thought you were wrong to allow her to eat independently at her age. The whole idea is to get her to a point, where she can self regulate. I suppose I’m looking at this from a different angle as my dd eats just fine when with friends. The only time she didn’t was when things were completely out of control.

I think she meant the regularly eating independently of us would be something they work towards at a higher weight and at a better place mentally. So once they get closer to weight restoration and are more actively engaging in recovery I believe they do start working with them on independently managing their food.

So I do get why she said it - it was a risk we took for sure. I always felt that if we just went and had lunch with her, her weight would stay the same, but if we let her eat with peers there was a chance she'd eat more and potentially gain weight.

@Weightlossworried I think it’s different for different children. FWIW I think you’re doing the right thing. I think you had to try it, and I do understand they are cautious, but sometimes they are over cautious.

We can wait too long for things and then there’s never the right time, so I think giving them as much independence as you can as early as you can is the right thing to do. You can always retract it if necessary xx

Absolutely. If it had backfired we would be meeting her for lunch from now on. I also felt she deserved a chance to have a 'normal' lunch time as that was very much what she wanted.

It's a bit of a conundrum sometimes with DD, the meal plan, the appointments, the supervised meals all seem to make the ed louder but we also have to be careful about how far we step back!

Its such a juggle isnt it! DD has been in control of lunch for a while, and chooses snacks within limits, and whilst they're not what we'd choose we have to balance control and independence and recovery
And away from the grind she has surprised us at times, its like she can be different somewhere different sometimes, maybe where the appointments and battles don't loom so large

Yes that's exactly what it's like for DD, she can be her old self and make more 'normal' choices around food away from us and the meal plan .

I’m pleased to report the school visit went well and DD will start on Monday. She will still have a few lessons at her old school as she asked for a fuller timetable. I really hope it will help her.
she’s still so down and refusing to eat properly - it’s mainly fruit vegetables, some beans and pulses and the odd yoghurt.

That's good news about the school @10YellowTulips Maybe a fresh start on Monday will lift her spirits enough for her to start eating better. That must be so worrying for you.