Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Thanks for starting the new thread, @Curlyhairedassasin. Just place marking.

Just checking in. Thanks curly

Thanks @Curlyhairedassasin - think I'm going to be here for a while, so marking my place. Feeling quite relieved we've got all the way to Wednesday without ending up in hospital, and might actually make it to our community CAMHS ED appointment tomorrow morning. Never thought I'd be saying that!

@PermanentlyExhaustedPigeon80 We have been doing this for 2.5 years. It's a rollercoaster but this threads have been a lifeline at time for us. Good luck with the appointment!

DD is starting to cut corners again with her eating. I just hope we can keep the momentum going. She ate a lot post discharge (wayyy more than the meal plan) so not sure if we are in a phase of normal adjustments but she keep saying openly she is struggling with her body image. She started her periods a few days ago for the first time (never had them due to low weight) - this floored her. I knew it wouldn't be that easy. She will start school on Monday after being out of education for many months now and is looking forward to it.

That's great news about school @Curlyhairedassasin - is she going to be on a phased return, or going straight into full-time school? I imagine it will be a big change for all of you, and hopefully a positive one. I think it's really good that she's talking openly about body image, rather than keeping it to herself. She must really trust you and want to get better, which is huge. Looking forward to school is a really good sign too. I have everything crossed for you!

@PermanentlyExhaustedPigeon80 Its a Pupil referral unit and only part time fir the rest of this school year. She was in there before her admission but the place was withdrawn when she was inpatient. We just got the EHCP finalised and she will stay there until the end of her GCSEs in year 11. Her mainstream school didn't feel they could support her so in effect off-rolled her but it's probably the best long term as she didn't get the right support in there and went downhill whilst attending. Education was always big for her so hopefully restarting school will help to settle things.

Hello everyone. I've been lurking on this this thread since DD was diagnosed last September and it is just invaluable to hear everyone's experiences, so I'd like to contribute ours in the hope that it might help someone else.
Summary: she started restricting last May, told me mid July, at which point she'd gone from 47kg to 41kg. Wary of people's experiences with CAMHS I initially sought help from a private ED coach & dietitian who used the FBT approach. Total nightmare. She complied for a week, gained some weight and also became suicidal (actually ordered some rope to hang herself). So went for CAMHS referral. They've been amazing in terms of what we have been offered: weekly sessions with a psychologist, input from dietitian, psychiatrist, paediatrician - even an intensive 4 day multi-family therapy course over Oct half term.
She didn't engage with ANY of it.
Worse, she saw CAMHS as threatening her and developed an intense fear of them. She has sat in silence through 20+ sessions now, occasionally running away. The only thing she's taken up is the offer of having supplements prescribed. She sees these as medicine and they have been a more acceptable way of gaining weight than having to eat a lot.
Realising that ND & PDA criteria definitely fit and it helps so much to hear other people's experiences. I felt like the worst imaginable failure as a mother reading Eva Musby's book. DD just stonewalls in response to any of the strategies.
She continued to lose weight steadily throughout the autumn. We took her out of school in December as she was just so ill and weak (she insisted on going back after Christmas though). And somehow something turned around. I think it may have been the very real prospect of an emergency hospital admission plus the hope of changing schools.
What has worked for us has been almost the opposite of everything stated in FBT. And realising that what looks like stroppiness and defiance is actually terror. Partly the ED but also this is who she is - this is the child who at the age of 2 countered our attempts to offer choices with "Not yes OR no!!"
She started at a new school last month. Has gained around 4kg since the start of the year but remains at around 78% wfh.
I feel like we've got our DD back since the school change. She has stopped zoning out on her phone for hours, taken up her music and art again, is throwing herself into schoolwork. Yes there is a long way to go with weight restoration and she is ambivalent about this, sometimes on board with it, sometimes struggling.
This has felt like a long lesson for me in what I can and cannot influence. Ultimately I cannot make her eat. In parenting her in general, what has always worked has been to drop things into conversation gently and then step back. Pretty much the opposite of all of the current ED protocols. It's been a horrible dilemma.

If you've got this far, thank you for reading! This support thread is a club I never ever wanted to join but I am so grateful it exists. I hear so much love, patience and strength from you all. Keep going.

@Curlyhairedassasin i hope your daughter stays on track. Starting periods (or restarting in my daughter’s case) was a hurdle because it was a clear sign that she’d gained weight. Mine went backwards both times this has happened so i will have to tred gently next time.

A psychiatrist told mine that this meant she was weight restored but I don't think most people believe this is fully sufficient. Hopefully no-one has told your daughter that and she will be excited enough about going back to school to carry her through any blip. Sending best wishes

@ExistentialistCat that sounds like my daughter . Ever since she was little, I’ve had to suggest stuff and then step back do she can work out her own solutions. Every so often I remind myself that she was always like that, not everything is the eating disorder.

Does anyone's young person have a diagnosis of Atypical Anorexia? I think that's what we're dealing with here, and I'm not sure how much awareness there is of the condition. DD meets all the criteria, and I'm increasingly worried her symptoms are being taken less seriously because she's not currently underweight, although clearly heading in that direction. Does anyone know if the treatment plan is the same as standard AN? And how much value is there in having a diagnosis? We're currently on a 'brief intervention' pathway, as the CAMHS ED team weren't sure at her assessment whether DD's presentation was primarily ED or mental health related. I think she's technically still being assessed, but it's all feeling a bit slow, as if they're waiting for her to get more ill.

Argghhh day 4 of refeeding, and after a weight gain, the brakes have been slammed on. 😥 She didn't even come home last night, is back just now (midday), refusing to eat and is crying and angry and says she isn't going to eat any more and no one can make her. She's obviously terrified. Stupid bloody eating disorder. 🤬

@Curlyhairedassasin good luck with school restarting. I hope it can bring a bit of normality to her life and bring good habits and routine with it.

@ExistentialistCat gosh that's quite a ride you've been on!
My DD has always been a stubborn strong willed girl too. I wonder if it's a common thing with these kids.

@PermanentlyExhaustedPigeon80 don't have any experience with that but it was similar when DD had suspected ARFID- she didn't have nutritional deficiencies so no one was really concerned. She has all the other symptoms though! Do you have private clinicians or do you have to wait for the public system? I'm not sure how it all works over there.

@wandawaves Argh this sounds SO familiar, a brief period of compliance and then shutting down. I don't have any answers, can only share our experience: it helped me to understand PDA (I love that Jenny Langley has renamed the rather shaming Pathological Demand Avoidance as Pervasive Drive for Autonomy). DD resists that label but it helped me to realise that her extreme stubbornness and meltdowns actually come from a place of fear. I will try to attach a diagram I found really helpful, taken from the PDA Society.
Also, accepting that I ultimately cannot make her do anything is an ongoing lesson I am learning. I know this goes against the grain of FBT and the whole rhetoric of fighting the ED, doing whatever it takes to save our children, but that path was destroying me and my DD. Ultimately I said to her - and I repeat this still - that I love her so very much, that we want the same thing (a life free of this terror) and that I cannot make her do anything. It got to a point a few months ago when things really deteriorated and we were looking at an emergency admission, and the reality of that seemed to be a wake-up call for her. Sadly, that does seem to be what it takes for some people to begin to turn things around.
Sending you strength.

fuck, I think we are starting again. Refusal of this and that. Cutting out all butter/fats. When I insisted she eats, she pulled my hair so hard so I had to bend over, then pulled more to drag my head to the flood, and kicked me hard in the head with her feet. It was awful. Screaming, shouting... she was eating so well when we were discharged. she thinks she saw her weight in the ED clinic and isn't happy plus her periods started. I hope this isn't the start of the whole thing again. She is getting so incredibly violent towards me again. 😥 I really thought we'd be moving into the right direction esp with school starting again on Monday (she is really excited).

Oh, @Curlyhairedassasin , I'm so sorry. Recovery is rarely straightforward - but you know eating can be achieved, because your DD has done it once. School may be a motivator, i.e. she can't go if she hasn't eaten breakfast. Do not put up with violence though - call CAMHS emergency line every time it happens. You need support and they need to log that.

Thanks @NanFlanders I keep telling myself we can do it. I have logged it with the ED team. They are aware. Planning to use school as a carrot. That worked in the past too (to some extend).

I’m sorry @Curlyhairedassasin I’ve seen my daughter eat in hospital and on discharge for a while and then find it too difficult. I hope you and she can keep going eating enough to get her to next week and getting back to education. Perhaps that motivation might help her fight the noise in head.

When something similar happened for us last year, she went back into hospital very quickly to try to get her back to the meal plan. It didn’t work for her but I saw others who did. I hope it doesn’t come to that though as she’s so near to school return and that the ED team give you some support ASAP. Sending best wishes for you both

Oh no @Curlyhairedassasin - so sorry to hear that. Hope the closeness of the return to school is enough motivation for your DD. It sounds so hard for you. Please look after yourself too.

We had a disappointing Case Worker appointment this morning. I thought they would be really concerned, and impress on her the seriousness of her condition and the potential consequences. Instead they seem to have had a getting to know each other session and some gentle exploration of DDs emotional issues around food. I get that this is important too, but it all feels too slow and relaxed. Meanwhile she's getting worse every day at home. They didn't speak to me at all, so this is all from DD. I don't even know if she's lost weight.

Feeling pretty abandoned and helpless right now. She's hardly going to school, eating 500-1000 calories a day, withdrawing from social activities, and we're just supposed to carry on trying to get her to follow the meal plan (she won't) and wait for the next appointment, which is a week away.

Is this others' experience? It feels brutal.

Thanks for the PDA diagram @ExistentialistCat - it's really useful, and very recognisable!

@PermanentlyExhaustedPigeon80 I absolutely get that this softly softly approach must be incredibly frustrating for you right now. But it may not be all bad. With my DD, who sounds similar to yours in so many ways, CAMHS came down very hard & fast and the result was that she became terrified of them and refused to comply altogether. If they'd spent more time getting to know her at the start, perhaps she'd have engaged more. But who knows...
Glad you found the diagram useful. It helped me to see how DD could flip so quickly between compliance and utter meltdown, that she was already highly dysregulated in an apparently compliant state.

@Curlyhairedassasin so sorry to hear about your downturn. I was rooting for your DD and the apparently amazing turnaround. It's such a bumpy ride and we've been there too with the violence, so hard to remember that this is a terrified child when you are actually being hurt. We were advised to try to steer a steady ship, don't get too excited about improvements and not too devastated by downturns. Equanimity, I guess. But I'm far from being a Zen master when it's my child's life at stake! Sending you strength & stamina.

@PermanentlyExhaustedPigeon80 i have shared your frustration at times. Weekly appointments mean it takes so long while they are deteriorating rapidly. They are just at the start when you know it isn’t the start of the illness for her or you. It can be worth phoning up to ask to speak ti the case worker and explwhat is going on at home. In CAMHS I had a good relationship with the caseworker who was very open to communication. Not so much with adult services now

@Curlyhairedassasin I'm so sorry to hear that. Are you ok?
I really hope school can be a bit of motivation for her.

@ExistentialistCat thanks for that diagram, yes it is very recognisable in my DD! And yes to the very rapid escalation. I'll have to do some reading about PDA, I've never considered it actually. We are borderline needing hospital. DD's doctor has given her until her next appointment to make some changes, otherwise he wants her in hospital. I was hoping this would be motivation for her. But I dunno. I'll have to point out to her that "hospital" for eating disorders does not mean her nice cushy private mental health unit that she goes to for depressive episodes, as she actually doesn't mind going there.

@PermanentlyExhaustedPigeon80 sorry to hear you didn't get much practical help at your appointment. That's very frustrating.

Well DD eventually calmed down last night. I just kept going in through the day to check on her and remind her how much I love her and I'm sorry she's feeling so scared and overwhelmed. Then I left her be. I pre-warned her i would bring her dinner as I do every night, ie not part of refeeding, and she actually ate it and said thank you, and gave me a hug.

No idea how today will go though! I'm feeling a bit anxious about it as I'm pretty sure she won't be compliant.

How do you all deal emotionally with the ups and downs of recovery? It's something I've always struggled with, with all her mental health battles. For some reason when there's been a step backwards, I see it as a big fail and that everything is going to come undone. Catastrophise it, I guess. I don't know how to stop doing that and to just see it as a little hiccup instead. And I get sooo sad about it. I am on antidepressants now which has definitely helped. But I'm also a terrible perfectionist so I think that contributes to my difficulties.

Thanks all. She ate more (and more normal) for the rest of the day. The last two days have just been really hard. Today is a new day.

Oooh! New thread!

sorry it seems like a hard week. Onwards and upwards….

Marking my place. Interesting to read all your messages since I last posted. Our week has just been so so busy. We have an Intensive outreach team from CAMHs helping us but they have seen us 4 times this week on top of a case worker appointment and a hospital appointment with the lead ED consultant. I think we've hit it lucky with our team and my DD is eating. We get push back occasionally and she wants to be involved so she's allowed to choose her snacks from a list. I'm off to have the team watch another snack (3rd this week) and lunch in their clinic. I'm talking each day at a time because last week was so horrendous. The lead ED said school after half term is realistic so fingers crossed.

@wandawaves I think the question of how we cope as parents is so important. When DD was first diagnosed I was in a state of visceral panic 24/7 - couldn't eat, couldn't sleep. Low dose antidepressants have really helped with that. And the whole experience continues to be a very intense lesson in knowing what I can and cannot control and where my boundaries are. At the most awful times where I feel utterly powerless, I try to remember that the only thing I have any control over is how I show up in this awful situation. And I get it wrong every single day, which is also an important lesson for my inner perfectionist and a good thing to model to my DD - yes, I'm human and I can apologise and we can move on.

Also, I tend to turn to books for comfort and reassurance. "How to cope when your child can't" (by Welham, Sharon & Saunders) was really useful.

Glad to hear your DD has had a better day @Curlyhairedassasin - it's such a rollercoaster isn't it?

@littlemissy12345 - the support your getting sounds amazing. Whereabouts in the country are you, if you don't mind me asking? I think DD really needs intensive outpatient treatment, but we're stuck with one Case Worker session a week, which feels nowhere near enough. We're in South Yorkshire, and the service here seems very limited - under-staffed, under-resourced, lots of cancellations because no cover when staff are ill. Very inconsistent at times too.

Dietician this morning, which I hope will help. Not quite sure what to expect or what to ask in that session, and it's online too which isn't ideal for an ND/PDA profile.. any tips on getting the most out of a meeting with an ED Dietician? Hoping she'll be very firm with DD, and that she'll actually be able to take it in.

We've also got a meeting with school later to discuss a reduced timetable. What have others found works in terms of school? I'm thinking of suggesting half-days for the time being, so she can have lunch at home. I think she'd struggle with a full day given the amount she's eating, and how high her anxiety is. But I'm in two minds because I don't want her to get used to part-time school and then find it even harder to go back to full-time. She's only in Y8 so luckily no impact on exams yet. Really hard to know what to suggest for the best, and school seem happy to take our lead, which is good in some ways, but a lot of pressure!