Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Curlyhairedassasin - that's really concerning, I would ask for an emergency mental health assessment. Your poor dd, it's horrible to feel like this and very frightening for her and you.

There will be an 'unscheduled care' service for people whose mental health deteriorates who need to be seen urgently. It is sometimes located in a&e.

Hopefully you've been able to access some help today already, thinking of you both x

Thanks @squashnsqueeze . Saw cams today and they think it's most probably due to stress (I am not convinced). Her eating isn't great either and I wonder if the stressed of the ED in combination with the lowish weight may be at play. We see the psychiatrist early next week. We will tweak meds (increase in symptoms coincides with a change of dose of ADs, so this is something else to explore). We are keeping a very close eye on her for now and take things from the psych appointment next week. But really worried about her.

@Curlyhairedassasin that does sound really worrying. I'm so sorry, your poor DD and what a strain on you. Do think about the meds as it sounds so similar to what a friend of mine experienced on Sertraline, when she reduced and then stopped taking it the symptoms reduced too. She was put on a different AD which was much better for her.

I hope it is this @GrannyRoberts . We will get a new prescription early next week when we see the psych. But it's difficult to say. I think only time will tell. I am going out of my head with worry about her. Suddenly the AN seems minor.

Do you happen to know how quickly things improved after the dose changed?

@Curlyhairedassasin I'm not sure, I think it takes a while for it to work through the system. Usually it's a gradual wean off so maybe a few weeks but she said the difference was huge.

Completely anecdotally curly but when I took antidepressants I had awful side effects including intrusive thoughts and feeling suicidal. I'd taken them for anxiety and never felt suicidal before.

If it reaches crisis point I'd take your dd to a&e and ask for an emergency psychiatric review.

I have her at home with me. she says she isn't able to cope in school but she is calm here. If we can I will wait till Monday morning for the psychiatrist but will go to a&e if needed.

I hope you & your dd will be ok @Curlyhairedassasin I have no advice I'm afraid but I'd be very worried too.

What’s the thoughts on modelling with an ED?

DD and me has been asked to go for a meeting next week at a top London agency. She was approached when shopping yesterday. It isn’t the first time she has been asked and is already planning her new career.

She has done a shoot before her ED was discovered late last year.

I can sense her psychiatrist is going to have a meltdown if I ask her for advice 😞

no direct experience but I wouldn't touch this modelling stuff with a barge pole. It's an industry which is full of underweight young women... I would worry that this would only fuel the ED if anything. I wouldn't even think about letting her do it.

I agree with Curly to approach with caution. Your dd has gone through hell and she’s on the mend now but from all that you’ve said, she’s nowhere near well and this could send her spiralling. I don’t know anyone with experience of the modelling world. My hairdresser used to work on cruise ships. He said all the dancers had eating disorders because they were regularly weighed and had their contracts terminated if they went above a certain weight. I imagine the modelling industry to be similar. I hope my dd won’t express an interest and tbh I was thinking last year about suggesting it to her as she is very attractive and well groomed (doesn’t take after me) albeit she’s too short for catwalk. But I wouldn’t want my dd to go into it now with an ED.

DD is very tall, I don’t want her to go, but not sure how much influence I am going to have on this long term as she is 18 next year x

Dinner I agree with the others, I would strongly oppose any sort of modelling as it just reinforces the thin is better message.

How mentally well is your dd? I think you should approach the psychiatrist but with your concerns. Last year you had no idea your dd was so ill and you / she applied then. I find the more I face up to the situation, the easier things become. Bottom line, circumstances have changed and perhaps the psychiatrist can give you some ideas of how to keep your dd safe / to be strong to stop your dd from pursuing this career.

My thoughts are if your dd is insistent that she wishes to pursue modelling, you could perhaps aim to get your dd to agree to use her earnings to pay for ED therapy so that she can remain mentally well / continue to recover. I know your dd will be an adult. Idk how it really all works when our kids get to 18 as they’re legally adults but still have a long way to go. So the question is whether your dd will allow you to can continue to treat her as a child due to her ED. I have to treat my almost 16 yo a lot younger than her years for her own protection. Is that the same with your dd?

How's everyone holding up? @Curlyhairedassasin you've been in my thoughts.
My batteries feel so empty today, the constant battles over food, amounts and refusal I'd love to hide under a rock.

@Dinnerisburnt@Proseccoismyfriend
Thanks you, weekend is up and down. Found out on Friday morning via school that she had SH again even though we have to lock all sharp things away. I raided her room found a brow shaver. She must have bought that on the way to school or back as it's nothing I keep at home. Her legs look dreadful with all the cuts :(
she wanted too see a friend yesterday but couldn't. She said she sees and hears things and is overwhelmed and she cannot do it. At home, she seemed calmer. I took her out for dinner later yesterday to a safe place (calories on menu) and that went ok. She is already worried about school next week. We are trying to get a few adjustment in place to enable her to keep attending but it's slow progress. We see the psych on Monday morning. I hope she has some better ideas as to what is going on and how to address them.

She cried though that she is only a bit skinny and she wants to be very skinny. I think in a way it's all stress driven by the ED or related to the eating in some way.

Sorry dinner I tagged you by accident and I cannot erase tagged names. Weird. Anyone else having this small tech issue?

@Curlyhairedassasin hope the appointment goes well today.

Thanks for asking @GrannyRoberts .

Not sure how it went. We don't know her current weight as she is water loading a lot. Psych thinks all the symptoms she is getting is depersonalisation (or depersonalisation disorder) which is triggered by intense anxiety around stuff (and a few other things). We are reducing the Sertraline. And are pushing school for certain adjustments in school to take the pressure off but it's hard work. But I have DD1 with complex needs and many years of experience in battling things out with schools in terms of support so hopefully that will be a useful skill set!

Just over 2 weeks left this school year. Probably good that the school hols are around the corner. Worse case, I don't send her full time until the end of the term. She did all the exams this year and it's just winding down from here so she isn't missing too much. But she texted from school a few times how overwhelmed she is. It's hard. I am not sure what's best right now. I have to work and cannot give that up. I am already only PT because of DD1 and financially it's not easy. If I could resign, I would just keep her with me I think until she feels better.

@Curlyhairedassasin that sounds so tough. I really hope the school holidays bring some relief for her, and for you. And maybe just maybe reducing the sertraline will help. She sounds as though she's exhausted bless her (and you too).

how are things at your end @GrannyRoberts ?

@Curlyhairedassasin that's a tricky one to answer! Buckle up this may be a long post.....I've been doing a lot of reflecting (and a fair bit of crying) the last couple of days. Yesterday was the one year anniversary of the day DD was admitted to hospital on medical grounds, however as you may remember, after 3 nights on the paeds ward she was transferred to the psychiatric ward where she stayed for 4 months. So I am thinking a lot about that, and where we were this time last year compared to now. I think I still have a fair bit of trauma around that time that I need to work through.
DD is in a good place with her weight. She eats 3 meals, 3 snacks, without much fuss. Her wfh has been sitting around or above 100% for several months.. However, we feel a bit stuck - breakfast and all snacks are always exactly the same, no deviation, no spontaneity, and certainly nothing that she perceives to be "unhealthy". She has high levels of anxiety around germs, handwashing, illness which impacts her life in a significant way. She spends a lot of time alone, by choice, in her room although is still motivated to spend time with her friends and has been happy to go to school etc. We are in Scotland so the holidays have started and I have her booked into a couple of things (with a friend) which she seems to be enjoying but she's not interested in any "family" activities really.
CAMHS are in the process of completing an autism assessment. Everyone in her team think she will be diagnosed, and they have been approaching her situation through that lens for quite a while now. DD thinks she is autistic. I agree. This sheds a different light on some behaviours which, if viewed as ED behaviours, we'd be trying to stamp out. E.g. the strict routine around food, limited range of safe foods etc - for an autistic person, routine and familiarity comes from a place of safety. But coming from an FBT angle - fear foods would be challenged, no choice should be given etc. So I feel quite conflicted on how we move forward from here.

DD says I am being paranoid, she's happy with her mealplan, she's "fine" and I need to just get over it! In her mind she's moved on, the ED was in the past and we need to get off her back. And actually I do agree to a large extent, but it's really hard not to jump straight back into that hyper vigilance at the slightest blip. I am really worried about the transition to high school in August, and how this will impact her, both in terms of eating but also more generally in terms of anxiety/overwhelm and what mechanisms she might use to cope with those feelings. But she feels ready, she is excited. It's early days still and I don't think I will ever be able to fully let go of the fear of regression.
I've been reading and listening to Livia Sara who writes about her own experience as an autistic person diagnosed with an ED, and am working hard to try to think about this alternative perspective on things. So, in short, we are nowhere near back to "normal" but I am coming to realise that probably we never will get back to where we once were. None of us will come out of this unscathed, and maybe if it helps us to understand a little more of my DD's inner world, then that may at least be something good to come from it all. And maybe for her "recovery" will not look the same as it might for a neurotypical person.

@GrannyRoberts - a lot of it sounds very familiar: The never changing meals etc. We have them too but DD pushed a bit back so is not eating the full plan. We are stuck around 87/88 WFH. But still most meals and snacks are eaten.

It's just so much more than weight recovery, isn't it? When it started, I just thought we need DD to get to put on weight. How naïve that was. I gave up hope that things will ever be normal but I hope we find a way for us long-term also in relation to DD (undiagnosed) ASD. But psych, I and she think she is on the spectrum.

Great to see you are making progress with the ASD referral. We have been referred too but waiting list is 5-6 years. Given that she is 13, we probably won't get a diagnosis under Camhs but will have to join the adult pathway.

I will look up Livia Sara. I think I need to get much better understanding of her ED and Asd.

Have you had transition meetings with high school? For us, high school was the time when everything fell apart. Academically she is utterly brilliant but everything else unfolded. It's so different to primary. so much bigger, so much more demanding and socially more complex. I'd try to put as much support/awareness with staff in place as possible before she starts.

@Curlyhairedassasin we've had a few transition meetings, but DD has refused to come to any of them as she's "fine" and we need to stop "making a fuss". Her not being at the meetings has meant that we've been able to talk more frankly with the support coordinator about her needs, and that includes, as well as the issues around food, discussing her anxiety, and something else that has also become apparent through work with CAMHS SLT, is that she has delayed processing (working memory) so it's really good that we are aware of that now, as now the school know and can hopefully accommodate that and support her with different strategies. School are saying all the right things, we just have to wait and see how they deliver. They will provide her with a toilet pass and a time out pass so that she can leave class if she needs to (bathroom anxiety is a problem for her so I think this will help to reduce some of the potential stress). The social side is something the school can't really control obviously, but we're working hard with them to put in place as much "background support" as we can. She absolutely doesn't want to be singled out so any mention of quiet areas or wellbeing hubs are met with absolute resistance.

In terms of the ASD assessment, it's being done by her team at CAHMS on an ongoing basis so we are not waiting for one "assessment" as such. They know her, and us, pretty well now and it seems to be a matter of piecing together various bits of information/developmental history/clinical observations and a few assessments here and there, to give an overall profile.
I do recommend Livia Sara, she has a couple of books out (Rainbow girl is the one I have read) and also a podcast "Live Label Free" which has some really interesting episodes about the autistic experience of EDs (her voice takes a bit of getting used to, but she offers some really valuable insights so it's worth persevering).
If you're on facebook, Autism and Eating Disorders - A Place of Care & Understanding, is a helpful group, as is the Autistic Girls Network Group.

Really interesting to see others experiences of neurodiversity/traits alongside ED - I’m getting fed up of people asking me if we have considered autism for DD, but a small part of me is thinking now maybe they’re right and we just can’t see it because she presents so differently from the (diagnosed) men in my family.

DD has been hovering around the same weight for so long, but now it’s warming up her appetite has dropped and we’re back to 82% wfh and 4th centile. GP has re-referred to ED clinic and they have agreed to see her again. She just sleeps all the time, it’s so sad to watch. The person who accepted the referral spoke to DH about autism and I believe they can do some sort of pathway without putting us in the general system with the ridiculous wait.

Glad you've been accepted back @Glitterfarti fingers crossed for you.
Does anyone know what treatment options are suitable/available after cbt?
We've had 8 weeks now and I think it's made very little difference and we still have ed traits & behaviour that wasn't there before. Will this ever go? We've been at a good weight for so long but meal times are still a struggle and I'd hoped by now (maybe I am expecting too much too soon) things would be easier. The clinic feel certain things are safe I.e. eating at home and eating the same foods so I'm still challenging this and putting variety out but some days I just don't have the fight.
It's coming up to a year since restriction started but it feels like we've been stuck here for so much longer if that makes sense.