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

[Mummyoflittledragon]

New thread. The old one is full…

They were very focused on the externalised model when we did multi family therapy, and my impression was that most of the other young people related to it, but DD didn't.

@Weightlossworried that's so frustrating that the CAMHS appointments set her back so much. I don't suppose she'd consider blind weighing? DD can have a similar reaction to gains, unfortunately there's no way she'd agree to not knowing but some kids would.

@Mummyoflittledragon just wondering if you found resources specifically for ND anorexics ever? I could really do with something to back me up when talking to her professionals. I have no idea when/if the passport will ever materialise, I keep asking, and I keep highlighting her communication needs each week on the care planning form.

I didn't get to speak to the consultant yesterday. I did speak to the ward manager though, she was incredibly surprised at the idea of DD being allowed to discharge herself, so that may lean more on the side of it being a misinterpretation? Regardless of what was said on Tuesday, she said there's no way they're letting her go home, she lost another 0.5kg since Monday, and if they don't see an improvement over the next few days, it's likely they'll start the process for detaining her and forcing the Ng feeds. They're sufficiently concerned that they've changed their minds about letting her go for a drive even if she does complete her meal plan.

They also said she's clinically dehydrated, which I feel is their fault, to be honest, she always drinks whatever water they give her, but won't drink the milk or juice, they are supposed to replace it with water if she doesn't drink it but they rarely do, so I did flag that up to the manager. We bring water with us when we visit and she usually drinks that too so god knows how dehydrated she'd be if we didn't.

Does your dd have her phone? And if so, can you see if messages are read?

I would try connecting, texting, say something like this. Change the order or add bits / take stuff out. ‘I love you so much and you’ve been really brave going to CAMHS. I can see how tough that is for you. And I am so sorry about that. I can see how hard you’re working to get yourself recovered. You’re such a fantastic big sister. And it’s been such a pleasure to see how happy you’ve been this week. And I’m just giving you a big hug over the phone, just to let you know that we are going to have a great family summer.’

Let her process that. Maybe it will give her the space to rage at you about going to CAMHS. Idk.

As for now and eating, could you try the grab yourself something, have a bit more of that etc?

@StressedANmum
I don’t have anything directly for ED and ND. Jenny langley does the rolling 3 part autism workshops. They’re really a follow on to the 5 part workshop she wrote. She delivers the autism and a few people at the Charlie Waller trust deliver the 5 part series.

If you do a see all of my posts on this thread, you’ll get all the info there. The stuff she does works with ND people. Not all of it. And you can ask about that in the 5 part session. As an example, they talk about affirmations. These were far too aggressive for my dd at the height of illness and would set off the ED voice and sarcasm. So I used softer ones.

As for books, the new Maudsley book caring for a loved one with an eating disorder is packed with the stuff you learn in the workshop. There is a training manual accompanying the book and a lot of the pages are on the new Maudsley website (link on my post upthread).

Perhaps if you familiarise yourself with that stuff? For ND people, a lot of stuff can feel like aggression, especially when emaciated. Asking them how they are can send them in a spin. Lots of observation and asking gentle questions. If we use the example of your dd not drinking the milk / juice (mine wouldn’t either). ‘I noticed you aren’t drinking the milk. (Pause) Can you tell me anything about that?’ She may then rage and this requires really gently nudging. Look up Socratic questioning.

Thinking about the milk. Jenny talks about how someone got a sufferer recovered slowly by challenging them amongst other stuff in sure to drink a thimble of skimmed milk and building it to glasses of full fat.

I am sorry your DD isn’t getting the care she needs. It’s really important to keep her fluids up. Anorexics stop drinking if they’re not eating. So that can’t be helping with her eating either, especially if it’s making her constipated. Constipation will make her not want to eat. I would be concerned about that and for her electrolyte balance. I’m also so sorry your dd is struggling so much.

@Weightlossworried
Just realised I externalise the ED there myself. It does help. You’re right. But we don’t have to do that with our dc if it doesn’t work.

@Mummyoflittledragon we use messaging by phone a lot, and usually get a positive emoji response, rather than a snarl or an eye roll if we say the same things directly. So lots of 'thinking of you' 'hope x goes well' 'sending a hug' type things that seem odd to send to someone in the same house, but seems to go down well

I've been texting her, sending her photos of happy memories. I've written a letter just telling her how much I love her and all the reasons why I think she's amazing.

Normally there'd be a glimmer of response by now but nothing. I had hoped she might respond to her sister if not us but she can't get much out of her either.

Reading your other response though, I'm going to go back over my workbook from the Beat course I did and see if there's anything I can utilise

@Weightlossworried I wouldn’t take her to anymore appointments unless they agree to blind weigh her 🤷‍♀️ it’s completely counter productive.

@LurkyLurkyLou @Weightlossworried
That’s lovely. You’re both amazing mums. ❤️❤️

This not being able to speak to you will pass. I agree about not taking your dd unless she is blind weighed. I was hesitant to say it as I am in a very different position to you and I don’t want to pull you away from CAMHS. You could also consider if it would be more beneficial to the next appointment without her.

As for getting advice from CAMHS, you could call and ask to speak to one of the MH nurses. They are at the coal face and may have some useful advice.

I think I'm going to have to do that. She did say she 'didn't care' whether she saw to the nurse. I'm going to ring them on Monday and insist we try blind weighing

I only ever used Camhs as a support for me, other than observations and blind weighing there wasn’t anything else they offered for my dd.

Have medications been discussed @Weightlossworried?

I did ask about them in the parent support group. They said they use them when there is extreme anxiety around food. It sounds like the threshold is quite high, they'd have to be really struggling to eat anything. I think I'll ask again though. This is day three of her basically being like a zombie. She won't speak to us or interact at all.

@Mummyoflittledragon thanks, I will look back through your posts when I get my head on straight, I find it really difficult to focus to take in new information at the moment I must admit. Re the drinking, it's not that she won't drink, she will happily drink more water, she's just not being given it. I have raised it with the staff.

On the plus side we've managed two drives! At the weekend she only has to complete to lunchtime to be allowed out, and she was able to do that yesterday and today. During the week it's teatime, which I can't honestly see her being able to manage but at least she got out.

@Weightlossworried DD has found olanzapine a bit helpful, perhaps you could enquire about that? She has never got a far as eating nothing although she did go down to 4-500 calories a day for a long time. Hope she's talking to you again by now.

That sounds really positive that you've managed a couple of drives! I hope that's a definite step in the right direction.

My DD has just responded to a text for the first time. I'm completely broken though honestly. The silence and the way she's looked at me over the last 5 days or so. I'm debating a trip to the GP tomorrow. Maybe get some anti depressants or something. I'm struggling to stop crying whenever I'm alone

@Weightlossworried I'm so sorry she's still shutting you out. It's so hard the way they behave towards us sometimes when you're doing everything you can to help, I'm the only person DD feels safe taking her feelings out on but it's so difficult to carry that. Definitely see your GP, can they offer any talking therapies for you at all, it might help to get a lot of your feelings off your chest to someone neutral? You're doing an amazing job, you need support too.

I'll ask them about talking therapies. We had a session with the CAMHs family therapist last week - just DH and I. It was useful but we don't have another one for a couple of weeks.

It's so pathetic that her freezing me out has hurt me so badly. I wish I could be stronger for her.

Despite eating what to me look like good sensible meals my DD is still losing weight. One bit of good news though is her hair has stopped falling out (her hair was her crowing glory but was coming out in chunks a few months back) and it’s also growing back in her bald patches. She’s coming home next week and we are going out for the afternoon but she won’t eat out as she finds it too stressful. Home it is for fish cooked in my new, as yet unused, air fryer.

DD was always bling weighed at the St Ann’s clinic.

@StressedANmum
I totally get the not being able to process stuff. And I do understand your dd will drink. I was meaning they should be taking better care of her as a the implications of not drinking are well known. I hope she’s drinking more and eating better now.

I forgot to say. That’s great news about the drives. The weekend only sounds sensible. Something easier to work towards. Baby steps. I hope it has raised her morale. And yours.

@Desdemonadryeyes
It sounds as if your dd may have entered hyper metabolism. This is where she will need an inordinate amount of calories to start putting on weight. In any case, every calorie she didn’t consume when she was supposed to needs to be eaten to restore her weight and perhaps a lot more besides. My 18 yo dd needs a minimum of 3k to gain anything. Some need in excess of 5k.

It also isn’t uncommon to continue to lose for a short while. It is great news her hair is growing back. That means her body is being nourished enough to feed more then just her vital organs.

That’s great news she’s coming home. I hope the trip out is good. For a long time, any time dd went out with us, she ate in the car. Perhaps you dd will agree to that.

@Weightlossworried
It is not pathetic at all. You are having a perfectly normal reaction to a very stressful situation. Your dd is complying for the most part. And that’s good news. She is making improvements.

Idk if she’s angry about her recent visit to CAMHS and blaming you. However, it is likely she is punishing herself for eating too much or enjoying herself or something similar. And she has needed the space to process that. In any case, this is not about you. It’s all about her. Well done for persevering and keeping going.

And i also think therapy would be an excellent idea. As for CAMHS, I agree with Girlie. I also used it for me for the few months dd was under them, that is until she signed herself off at 16.

I totally understand the alienation side of things. My dd threw pure hatred to me for at least 6 months straight at the start. I have even after all this time been destabilised this weekend. She said she didn’t have time to spend any time with dh and me for her birthday between last Thursday and this Tuesday. Then got mad at me for not organising a family party, despite never wanting to go to family parties!

I really tried to do nice stuff for her, but she didn’t want it. She really sabotaged the whole event for us as a family, then is so angry at how weird we’ve been, because according to her, we’ve not made an effort at all. I also tried to do a meal with wider family. All refused.

i get this is all anxiety. And possibly because she’s been telling me for months now she’s an adult and can do what she wants. I’m trying to keep the eating going…

And I told her this afternoon that she has AuDHD. I have been talking more and more about ND on this thread, but she’s only just diagnosed. I had to wait until after her A levels and ready to hear it, but I wanted her to know before her holiday. And she needed to be told about the 2 together as it would be confusing otherwise.

Thank you @Mummyoflittledragon

I think you hit the nail on the head, she was very angry with us for making her go to CAMHs. The problem is, her weight fluctuates a lot and we had no way of knowing she'd restored anything, let alone a relatively large amount..I also think you're right about her punishing herself and trying to process things. We definitely use CAMHs more for us and just for a physical check up. We've said she can just do the physical stuff and then go but she doesn't like us talking without her there. She's actually 16 now so I am wondering what will happen if she refuses to attend. I might ask them.

That all sounds very difficult with your daughter and her birthday. It sounds like you absolutely couldn't win whatever you did. What a shame her anxiety ruined it for you all. How did she take her diagnosis?

@Weightlossworried I think you’re being hard on yourself, you are being strong for your dd. You’d have to be made of stone not to feel depressed when caring for a child with anorexia, it took me to the darkest places I’ve ever been to mentally.

My dd is on her way home tomorrow, can’t wait to see her. She’s done the sky dive, scuba dive and bungee jump 😱 she said for the bungee jump they weighed her 5 times and wrote her weight on her hand 🤦‍♀️

It was hard to gauge when FaceTiming her how she felt about that but she said it was ‘fine’ and shrugged her shoulders. I guess I’ll see how she goes once she is home.

@Girliefriendlikespuppies thank you.

Wow to your daughter having all those incredible experiences, the weighing 5 times sounds like the scariest bit to me - I hope she really is fine.

It's always so good to hear what kids further into recovery are doing, it gives me hope for what my daughter's life could look like.

@Weightlossworried
Unfortuately sometimes you just have to leave them to process things. So tough to do. And I’m not great at it. I get it’s hard to important to keep an eye on things weight wise. My dd won’t weigh. I go it by sight/ how clothes fit. It would be great if you can keep CAMHS even if your dd refuses to go.

Dd took her diagnosis just fine. I think she was expecting it tbh. Her friend, who has had a ADHD diagnosis for ages was recently diagnosed with autism. That will make it all ok for her. But she needed both at the same time as she doesn’t see herself as being just straight autistic at all, which is understandable as she presents very differently from someone, who doesn’t have both.

@Girliefriendlikespuppies
What a relief your dd is on her way back in one piece. I have been wondering how she’s getting on. I hope she won’t come back too depleted.

I'm glad she took it well @Mummyoflittledragon

I have wondered about ditching the scales completely. I saw an Instagram reel from someone advocating it but I can't get my head round the worry of not being able to see just how compromised her health could be. After all, it took me a while to spot she had the eating disorder. She wears a lot of baggy clothes. She's under 80% WFH but you wouldn't necessarily look at her and think 'this kid is seriously underweight' you know? We may get to that point though - if she refuses to be weighed there's not a lot we can do after all.

I haven't discussed this week's appointment with her yet. She will potentially want to go to see if she's managed to get her weight back down.

I look at hands, if that helps? Always visible. Can't be hidden. Doesn't look like much but def different if they are emaciated.
It would be no good for monitoring an the effect of an outpatient protocol and gaining x per week. It does tell you if there is a significant fall. Mine also starts fainting when their weight goes below a certain level

The hands are a dead giveaway for us too. It's heartbreaking to see but they're blue/purple and so cold 😥

I'll be watching her hands like a hawk now.

We are back on a reasonably even keel. She has her prom tomorrow so I'm going to park any discussions about CAMHs and weighing until after that. She's missed all the school leavers stuff. I just want her to have one nice thing.

@Weightlossworried
I really hope your dd enjoys herself tonight. As for the weigh in, it is easier for me as my dd doesn’t hide her figure. But it’s a hard one. If your dd is taking days to get over it, it then you know it becomes counterproductive. Personally I would be tempted to go by myself and talk to them alone about her reaction and their suggestions.

As for the hands, my dd’s fingers not only went purple etc, hers swelled right up. I got her diagnosed with Reynaud’s as I hadn’t realised the link. She hadn’t even been restricting long at that stage either.