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

[Mummyoflittledragon]

New thread. The old one is full…

Thanks everyone for all the good wishes. I'd add to @Mummyoflittledragon 's thought that you're also all fantastic for providing this support for one another, it makes such a difference to be able to talk to people who really get it. Holding out hope for the glimmers for all of us.

The section has been finalised so she has no choice but to complete now and is mostly doing it by eating with some Ng tube top ups. She's already getting really distressed about how "fat" she's getting and how her clothes are all too tight. What do you all say in response to this kind of talk?

@Weightlossworried I don't recall, sorry, but how underweight is your DD? I don't think they can insist you go to appointments unless she's at the stage where they can argue she's at serious physical risk? Maybe talk to them about spacing the appointments further apart because they're having such a negative impact on her.

I would like to know how to respond to that too.

My child is currently part NG fed and says the same.

At the moment I can genuinely respond by saying it's physically impossible she can feel the weight gain, because she isn't gaining any!! But obviously this won't continue as the intake will gradually increase. I don't think there is a perfect way to respond other than acknowledging it must be hard for them.

I think you just say things like ‘I’m sorry this is so difficult for you/im sorry you’re feeling so upset/distressed etc. I know this is so difficult for you but you are getting exactly the right treatment.’

Theres no point rationalising it with them imo as they’re not rationale fears.

Once the brain starts to recover hopefully the anxiety will reduce.

Just checking in , sending hand holds where needed. Sorry to hear of the struggles of the week, particularly those in hospital.

Thanks to all who responded when I wobbled last week. Your words make such a difference. @Mummyoflittledragon particularly when you said my DD is compliant, you're so right, and that was a key thing to hang on to.
We've had a better week, or it feels like it once my own hormones calmed down anyway. DD has agreed to a snack when she's exercised, and managed work experience and some socialising. She asked for food at a friend's. Admittedly it was bloomin watermelon, but social eating is improving, and she did accept me ribbing her about that being a clichéd ED choice!
Interesting to see experiences of holidays. We go away this week, and it's causing anxiety all round. We are with family, and the idea of the big family meals is causing stress. They're aware it's tricky, but we have ND small children to manage too, and as its a holiday we've done before DD is finding not just being able to enjoy it like she has before hard. She told me her last 5 weeks of therapy have been prepping for it! We have plans, for food and for identifying and dealing with distress, and she's been brighter since talking those through. And it's a week, she's currently not underweight, so she knows if she doesn't eat enough the hard work starts when we get back. But hearing others have found it's all been ok really helps. Thinking about managing her has taken all my bandwidth so currently DH and I will be taking 3 outfits, potentially needing a wash, and winging it re work before we go...

@LurkyLurkyLou we hope you have a fab holiday. I think holidays are sort of a reminder of life pre ED? They often seem easier than we think they will be. I get the worry though and being totally unprepared for the holiday with clothes etc!

@CuppaTandBicky how are things? I see you’re mentioning tube feeding. Are you home in the same
hospitla?

@Mummyoflittledragon I was really hoping to read something from you about recovery. I have been wondering for a while if this message was on its way. I couldn’t be happier for you. You have worked so hard and been so wonderful to your daughter. You both deserve this.

@Weightlossworried I agree with others, unless your daughter is seriously underweight or has worrying physical obs, you are choosing to attend appointments. I have just called for a few and said I’m unwell and can’t take my daughter. I’m not saying you should lie necessarily, but sometimes we all just need a break and time to see if changes can be made without their ‘support’.

@Raspberrysins how are the summer holidays going? I don’t remember a summer like this for a while where you can sit in the garden!

@Girliefriendlikespuppies how are things with you?

@StressedANmum you have coped so well. I think when you can see the effect nutrition has on them, it somehow makes what’s happening easier isn’t the word but hopefully you know what I mean.

sending strength and good wishes to all. I won’t say better days are ahead like Boris did as we all Know what happened there, but I will say how good it is we have each other.

@LurkyLurkyLou have a great holiday, I'm sure the worry about it will be more stressful than the holiday itself!

My DD is 79% WFH based on her last weigh in..so underweight but not seriously so.

I am decided..I'm going to give her at least this week off. I asked my relative about doing obs and she's happy to do it but said it's easy enough to do ourselves if we got our own machine. That's worth a thought too.

I think we pull a sicky this week while I ponder what we do long term.

Thanks everyone for the support

@Pearl97 not too bad, thanks for asking 😊 dd still stuck with her routines and arbitrary rules around food but is maintaining a good weight and most importantly is happy.

The routine and rules im sure are due to ND as much as the ED.

@Weightlossworried that’s fair enough re your dd and the appointments. My dd never engaged with anyone at Camhs so I only took her for physical obs and moral support for me.

I'm glad to read your DD is doing so well @Girliefriendlikespuppies

Just told DD we're not taking her to CAMHs this week..at first she looked panicked and said 'but I want them to weigh me'..then she quickly came round to the idea.

She confessed she'd already been debating cancelling plans to eat out with her sister this week because of what she might see on the scales. This has reinforced that I'm doing the right thing, it's madness to keep doing something that is actively stopping her from eating.

Hi everyone, sorry I've not been on for a while. Just had a quick read through, good to hear the positive updates but also so sorry about all the tricky ones, sending thoughts and strength to you all. Just a little update here, we're finally home! 🎉 Almost 7 weeks in hospital, but DD finally reached a weight the team were happy with, and she was discharged a few days ago. Daily meal support since and first weigh in tomorrow, which I'm dreading.... she's straight back to negotiating to lower calorie options but I'm trying very hard to stand firm this time, it's so bloody difficult though, and I'm already exhausted! Plus my younger child understandably wants to spend as much time with me as possible, actually wish it wasn't school holidays, would be a lot easier to manage!

@ThatSparklyOliveBird I am so pleased you’re home. 7 weeks in hospital is very draining. It can be a lot longer, which obvs I didn’t want to tell you at the start as I know I was wanting a position to hear that. I remember thinking a week or two when we got admitted.

How are you finding the meal support?

@Weightlossworried you are in control. See how this week goes for without the appointment. Did you say your daughter is having private therapy?

That's such good news @ThatSparklyOliveBird and well done on standing firm, it really is draining though I know. And yes, the timing sounds particularly difficult with school holidays.

@Pearl97 thanks. I keep telling myself that I AM in control. She started with a private therapist last week and sees her again today. She liked her straight away so I'm hopeful it'll really help her

@Weightlossworried it is great she likes her and shows she is willing to accept help. Please don’t worry about cancelling the usual appointment, it will do you all
gpod tk not have that feeling of doom! Xx

As an adult my dc missed lots of appts. Their discharge includeds monthly observations for 3 months, to give you the context of what is considered 'safe' physically in the adult world.

I found it terrifying at such a low weight and given the previous insistence on weekly obs. I have come to live with it and to realise the weekly check is more is this treatment working than mitigating immediate physical danger. You can also get your gp to do the bloods, if you have got an old blood form they can see what's needed and do it. They may not be able to interpret though.

Thanks @unbuckle yes, that's is terrifying actually if they're at a really low weight.

You make a good point about what the appointment is actually for. It is very much presented to us as mitigating physical danger but really, I think you're right it's checking if the treatment is working. And I need to believe that I can mitigate the physical danger myself. Plus the appointments are actively stopping the treatment working at the moment.

I've ordered a blood pressure machine. I think her obs might be better at home. Be interesting to see if my theory is right. Possibly a concrete argument to take to them to lessen the appointments.
She's actually fine with the blood tests, the ed nurses don't do them, she goes to another department in the hospital.

I already feel lighter knowing we're not going to the appointment this week

I think the fact that my dd was ill at the height of Covid worked in our favour because there was very little face to face contact with anyone!

Is the therapist ED trained/aware @Weightlossworried? I’ve been in this game so long that I know some therapists are not that great with understanding EDs and FBT. My DD saw a counsellor at school who actively undermined me and agreed with dd that I was controlling 🤦‍♀️

Even dd saw the funny side in the end when I pointed that controlling her food was literally the treatment plan that I was told to do!!!

Im glad you’re feeling more relaxed and it’s good that your dd was aware that the appointments were causing her to be more anxious.

Yes she used to work in an eating disorder team in another county, we had a lot of correspondence before the first appointment so I could sound her out.

Just had a good session with the CAMHs family therapist, just me and DH. She is so positive and we end up feeling hopeful at the end of the session - we pointed out that this is very different to the appointments with the nurses where they say nothing positive and just focus on what we're not doing.

Hi everyone. We are plodding along at home. Thanks @Pearl97 yes the weather has been amazing but finding it challenging as I’m sure it reduces everyone’s appetite and makes eating even less appealing! We had a good week last time gaining 1kg. But sadly still not back to where she was at the start. Dd is finding it ok but increasingly wanting to isolate herself and eat on her own. Her schedule gets her out of sync with the rest of the family due to massive snacks etc. she is really good at doing it all herself but I do worry this is a bit controlling. She is sticking rigidly to set foods and times. But at least she is doing it. For her though, by far the hardest thing is resting. She literally won’t sit down. Hardly at all. I am hoping this quiets down soon with some more weight restoration. She is also very down now and feeling alone. I bought a book written by an autistic girl (livlabelfree) on instagram who recovered for anorexia. And she said she relates to it which I think is a great sign. I hope she reads the whole thing.

@Weightlossworried im interested in how the private therapy goes. Is it face to face or online? How do you feel not getting her weighed? I think I would find that scary but I know it’s been really awful for you. Everyone has a different path in this awful journey! One key bit of advice I remember from Maudsley is that you ‘try something’ then if it doesn’t work just try ‘something else’ and basically do this on repeat until you find a way that does for you. It’s all just a series of try and fail.

The not resting sounds stressful @Raspberrysins but otherwise it sounds like she's making progress which is great. I might take a look at that book and see if it would resonate with DD..

The therapy is face to face, DD wanted someone in person..she had her second session today and seemed to open up again. I'm not expecting great miracles tbh, but I do hope it helps her to have someone to talk to.

I'm scared not weighing her. I'd far prefer a weekly or fortnightly blind weigh in just for reassurance but they won't do that and we couldn't keep on as we were. Like you say, we have to try something else if what we're doing isn't working. The CAMHs family therapist we spoke to today seemed to agree with us re: blind weighing which was interesting. I'm hoping she may speak to the nurse. I think it makes them nervous not weighing her too so if we can hold our nerve perhaps they'll crack first and agree to blind weighing..

Im interested in how blind weighing actually works. Do they let you / parents know? If so then how do you not say whether it’s ’good‘ or bad news? Are they allowed to know if it’s gone up but just not the exact amount?

We've always had blind weighing. Early on DD would leave the session before we did and the therapist showed us the results and talked about them. As we progressed the therapist would talk about being "in a safer place to exercise" or "making progress" with DD in the room, but never shared numbers with her. Now shes only weighed occasionally they are more open with the pattern, if not numbers
DD always knew vaguely what the results were, but the physical side was only part of our discussions, and handled well, taking the focus away

@CuppaTandBicky @StressedANmum

Exactly what Girlie said. And you can vary it with things like:
I love you very much and I can see how hard this is for you. Increasing your intake will (or has helped) help you / allow (has allowed) you to do x activity.
Once things have improved a bit, reflection may be good:
I can see how tough this is and I can only think you’d rather be doing x activity you can now do now than how it was a couple of weeks / months ago.
For a rule follower, perhaps:
The medical team know what they are doing and we can put our trust in them.

When I say activity, idk how strong you dds are. This may be being able to walk around the ward. Thinking of you. It’s so hard xx

@Pearl97
Thank you. I am hopeful dd will progress. However I don’t feel she will if / once she leaves for university. We have come back from visiting my mum and she forgot to eat breakfast this morning. And she mistimed things so that she missed afternoon snack again today. That’s twice in a week. When I say something, she has a robotic response of she managed just fine on holiday.

@LurkyLurkyLou
I’m so glad we could help you through your wobble. It’s hard. With my dd, she eats much better with others. But she’s all about networking and relationships. For example, she could eat well with us yesterday, because her teen cousin came to the pub for lunch, then back to my mum’s for pudding (unfortunately still not cake, but dd ate ice cream). Once we came home today, it was business as usual with her eating.
Apart from your younger dcs, are there any kids your dd’s age? Idk if that’s will be helpful or not. If she’d going to struggle, having a back up plan, such as one of you taking your meals to the room could be helpful. If you prepare for that and if she’s struggling, the option is there. Or eating just the two of you. It doesn’t have to be everyone together for every meal if that’s too much.
As your dd has been preparing for it, you can ask her what strategies she’s going to employ and what if anything you can do to help. It’s so positive she’s doing that. Very different from what we experience here.

@ThatSparklyOliveBird
It’s great your dd has been discharged. Good luck with the weigh in later today. I can imagine you feel really stretched right now. I am hoping the holidays will be as easy as possible for you.

@Weightlossworried
I am so pleased you’ve had such a positive response from the CAMHS family therapist. It is so important to have someone to talk to, who gets where you’re coming from.
it sounds as if you’ve got back up options to explore for your dd if you need one, which is great. And I think you’re absolutely doing the right thing with regards to weighing. You’ve got a real structure of support right now to pull on if / when needed.

@Raspberrysins
It’s great your dd is relating to someone, who’s recovered. And yes, the restlessness is to with the low weight and will resolve. I can’t remember who on these threads said they actually don’t use that much energy if just moving around in a confined area, eg at home. But it’s still energy out. These things take time, they can’t be rushed too much. Your dd will get there. And she’s motivated to see changes in herself.

As for my dd, it’s crunch time for filling in forms for disability at university and DSA. None of this was possible until I’d given her the diagnoses… Dd won’t do any of this stuff herself and she has just told me she doesn’t have autism, so that won’t be declared. She has given me permission to go through her emails on her iPad and sort it. But only declare the ADHD and her seizures, not ED either. She has also said it’s no point anyway as she won’t go to disability services for help.

Idk what to do right now. All she wants to do is have fun and party. And she’s spending way too much time with friends to be able to focus on any of this stuff. She can’t even manage to sort out her big pile of washing. Almost a week on from coming home and most of the holiday stuff is still there. Instead she’s having endless sleepovers at the friend’s house, who dd is following to university (never here). The friend has always wanted to live there. Dd otoh has other dreams for another city.

@Mummyoflittledragon thank you for your words of encouragement always xx
it sounds like you are indeed going through some worrying transitions now. What a difficult thing to watch her try to become independent and then with her forgetting breakfast etc. I’m not sure what the answer is, I guess she has to prove to you that she’s capable of looking after herself. I guess the good part of uni (that I remember) is the constant socialising and eating lots of junk food / drinking alcohol and cocktails. So this might actually work well for your dd? I can imagine that routines might go out of the window in terms of staying up late etc. is she good at keeping in touch while you’re apart? Will she be quite close by?

Also it might be useful to know about one of my best friends who recovered at a similar age. She said she just got sick of it (the ED) and that friends, clubbing, boys and booze were much more appealing to her so at this point she sort of grew out of it slowly by herself as she just wanted to have fun! She is now fully recovered, with two children working as a primary school teacher.

Mummyoflittledragon,
It is difficult, I have actually two daughters with various mh issues.
One completely refused any help from professionals or family. Only came home a few days for Xmas.
I did email the uni disability on various occasions, not even with dd1 agreement or knowledge. Not sure it was helpful. Strongly suspect ADHD, autism, PDA.
I also was briefly in touch with a parent of a school friend. I just asked him to check a bit on my daughter whenever he was visiting his own daughter. As in not looking too skinny etc.
Is there any food your dd likes, special biscuits? I would sometimes send these by post to her.
Although not all agree, I don't feel I could have done anything for her to accept help. She did eventually complete uni, but still has a lot of issues. I just keep sending little gifts and cards etc. And hope for the best.

Other daughter accepted help from DSA. Through GP also got some further help (although with difficulties).

As mentioned previously maudsley website has some information on DC starting uni.
New-maudsley-capsule planning for university

@CuppaTandBicky @Girliefriendlikespuppies thanks, that's the sort of thing I am saying but you're right, she's not really rational enough to hear it at the moment. Is your DD not putting weight on with the tube feeding Cuppa? I'm amazed at the variation in this, some people saying their child can't put on weight at 3000 calories or more. DD has gained on three quarter portions, so about 1800. Mind you she's got a long way to go, she needs to gain at least 12kg, but it seems to be going back on quite easily (or is this just an initial leap and will change as her body gets used to being fed?).

@LurkyLurkyLou I really hope you can have a decent holiday, especially with your younger kids, it's very hard on the rest of the family. Fingers crossed it goes well. DD often ate better on holiday than at home, but she likes novelty in food, which helps.

@Pearl97 thanks, we're early days with the nutrition going in but I'm hanging in to the fact that she does seem to want to get better.

@Weightlossworried that sounds like a good plan to me, you're keeping an eye but reducing the specific thing that stresses her. And hopefully the therapist will help too. I am kind of amazed at what outpatient services expect parents to cope with though, when DD was at 75% WFH in the community and only eating 500 calories a day, I was pointed to the meal plans and told to get her up to full portions over 10 days or so, with only a brief mention of refeeding syndrome. Meanwhile over 8 weeks as an inpatient she's had blood tests daily, blood pressure and blood sugar checked multiple times a day, because of the risk. Necessary or covering their backs, who knows? CAMHS insisting on weekly appointments might be a bit like that.

With regards to the meal plan, I was never able to get DD to follow it, nothing I said helped, and she used to get very cross if I said anything that sounded to her like 'therapy- speak". Although of course the professionals haven't succeeded either, which is why she's now on a section.

@Mummyoflittledragon it must be so stressful contemplating your DD leaving home, I hope the others are right and she will be positively influenced by the other young people around her.

Sorry if I've missed anyone, bit knackered today!