Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

@nospoonsanymore my daughter is now doing well. But it has been a very tough battle. You need to arm yourself with all the information and support you can get, because it gets worse very quickly. My daughter started skipping breakfast, then skipping school lunch or throwing it away (unknown to us). In just a few weeks she was struggling to eat at all. It escalated quickly but thankfully she admitted she needed help and we got a really speedy CAMHS referral.
You need to focus on getting her weight up. You might have to talk her through every mouthful to start with. That's where the Eva Musby book helps. I hope you get good support... they should take it extremely seriously and refer her for ED help. Feel free to DM me.

Also I agree with pp ... we took our daughter to A&E when she had eaten hardly anything for a few days and she admitted how much weight she had lost. They took it very seriously, did ECG, bloods, and an immediate referral to ED clinic.

We found that whilst our DD was at a ‘normal’ weight we couldn’t get any help and poor appetite was attributed to various stresses in her life. However, you may get taken more seriously if she has refused to eat for 3 days in a row. I sincerely hope so!

Thank you. I've left CAMHS with a plan for meals and have got bloods/ECG booked for Monday. Referral to ED clinic pending. I'm in shock, I think. It went from fine (well, just about ok) to extreme so quickly.

So glad your daughter is doing well now, Sammy. It sounds very similar in terms of what happened. I have order the Eva Musby book.

Good luck with the meal plan. Is your dd on board to eat as directed?

@nospoonsanymore i know you must be reeling but I am delighted to hear that plans are in place and she is being monitored physically. Be prepared for the rage that may follow the introduction of the meal plan. As well as Eva Musby I would recommend reading the book “skills based caring for a loved one with an eating disorder “by Janet Treasure. It will help you to understand what DD is going through and gives you tips on how best to respond - or not! You will need the patience of a saint as you go through recovery with your daughter but just remember that you are human too and will slip up and sometimes say the wrong thing. If you do, you’ll find out about it pretty quickly and the best thing to do in those situations is to just say sorry. Acknowledging how hard this must be for your daughter is also a good thing to do - again and again. And again!

Thank you, will get that book too. I am good at putting my foot in it so this sounds useful.
She is enraged, hates me, hates school (for raising the alarm), hates CAMHS, hates anything else you could think of, but yesterday she ultimately ate a sensible amount of food. Which is great. I can see that things are going to get worse before they get better.

This is a fantastic start and bodes well for recovery because at the end of the day a sensible amount of food is what will get her better. Her metabolism may be screwed up which might mean she needs more but I would let the dietician dictate this and you and DD follow the meal plan. It needs to be non-negotiable (something we really struggle with but my daughter is now a young adult).
They always say that the ED fulfils a function, maybe numbing feelings, control etc, so giving it up is going to be really hard. It is unsurprising that she is full of rage at everyone. Try to stay calm and, if possible, try to get someone to tag team so that when you are overwhelmed they can take over. It could be a while before DD feels any compassion for what you are going through!

@Curlyhairedassasin how are you and your DD? And @Mummyoflittledragon, @WoodenTrain @Proseccoismyfriend and everyone else. Thinking of you all.

@Minicooper did you find any unit that can help? I remember the worry and despair I felt when we were trying to get help and things were deteriorating rapidly.

@Nicolabodeux I suggest your DD follows Beth, theeddietician. She might also be an option for dietetics.

@NanFlanders you and your amazing daughter continue to be my inspiration x

Thanks @Shanghai101. We just plot along. Food intake still very restrictive and the same food everyday but weight stable at about 88-90%wfh. She couldn't cope in the 'normal' PRU so started in a sub-provision now for those who need more help than the PRU can give. She has up and down days. Still suicidal. School setting is temporary but we are going through the EHCP assessment now so hopefully by early Summer we have something permanent in an alternative setting in place. I don't think she is better in herself at all though. But things around her are falling slowing in place (like the EHCP assessment, we also are on the waiting list for a right to choose assessment for ASD now which hopefully should be done and dusted by mid 2025). Was thinking of @WoodenTrain too. Hope things are a bit better at your end.

@Shanghai101 Thanks, but everyone on here is a hero. I really don't know how we would have got through it without all your support - particularly you, @Girliefriendlikespuppies and @myrtleWilson but also many others - I remember crowdsourcing a brilliant letter on here while DD went on the the run and the hospital were threatening to discharge her 'into the community'. Without that letter, God only knows what would have happened to her. And also phone calls and advice when she was being transferred to adults services. I really believe that - with support - all of our kids can and will get better. DD did the hardest work. She eventually realised that you can't have any kind of life with anorexia - after her second absconsion from the ward, she wasn't even allowed out to education or trips. An
additional motivation was when her brother's exam results were affected. (He took an early GCSE when she was on the run and - unsurprisingly - underperformed.) DD still has a wobble sometimes but she is just about to head off to London for a theatre weekend with her younger brother. She saved up her wages from her part-time job to treat him because she recognises what a rough time he had when she was ill (though we and he have told her a million times it wasn't her fault). So incredibly proud of her. Hang on in there, everyone.

@Curlyhairedassasin it’s good that she sticks to her meal plan, we still struggle with that, but sorry to hear that her mental state is so poor. I really hope you get the diagnosis soon and things move quickly then because just knowing that you are supported at school can make all the difference to a teen.
@NanFlanders your children are incredible and show such kindness and forgiveness to each other.
I agree @myrtleWilson and @Girliefriendlikespuppies and some others whose names I cannot recall were all a huge support when we were in the depths of despair.
I too firmly believe that all our kids can get better. It is something that Jenny Langley believes too and it really reassured me to hear it from an expert in the field. Prior to that I had been told 1/3 1/3 1/3 which is that one third fully recover, one third recover enough to have a fully functioning life but still have thoughts and one third never recover. For anyone still being told this, it is outdated. UCL have much more promising data. I think it just takes some of them longer to process than others. And ASD makes it incredibly difficult on so many fronts. And the treatment options available on the NHS, whilst evidence led, are not suited to neurodivergent patients, although that is changing slowly.
I cannot recommend workshops and support groups highly enough. I learned so many useful tips and felt better able to cope once I understood more about the illness.

We still have some bad days but start again afresh the next day. Sometimes I feel like it will never end but then I watch my DDs resolve and feel full of hope again

Thanks for asking after us @Shanghai101. And I agree the support on here has been invaluable. I am glad you and your dd are doing ok. We are plodding along. Dd’s brain is starting to recover so she’s a bit nicer, even loving at times and not wishing me dead anymore...

I was hoping the gut issues that started a few months ago were resolving but she’s been having them again, which makes her super sleepy and feel really ill, and triggered the episode of allowing herself to binge on Christmas Day. Her eating has been all over the place since then and I’ve had to help her to build up her eating 3 times between Christmas and now. Ie Get her to eat smaller amounts and build it up over a few days so called normal levels again. Except once she’s feeling better, she gets hungry, irritable, won’t listen to me and the cycle repeats. So the weight remains stubbornly about the same. I’ve no idea really what that is as she refuses to weigh herself.

On a really positive note though she has stopped wearing copious amounts of makeup since just after Christmas, which has been her mask since the anxiety increased and the ED kicked in last year. We are still working with the private ED coach and my marriage, which has been super stressful with this all seems to be improving. My chronic fatigue, however, isn’t great. It’s the most awful time of year for me though so I’m in bed so much of the time.

I hope your dd improves and is able to work well at the PRU @Curlyhairedassasin. I also think of @WoodenTrain. Her ds is the same age as my dd.

It’s good that your dd is eating @nospoonsanymore. The rage is the ED under attack and you’re holding your own against it. As Shanghai says it’s important to stay calm and loving in these situations. Your dd can’t help the way she’s reacting and the ED is going to try to get you to be really angry. Because when you're angry you’re not in control.

Hi everyone, it's been awhile since I last checked in. I'm sorry to see the group has expanded but to everyone new, hello! I will catch up properly soon.
Thank you for thinking of us @Shanghai101 I'm scared to say it but we are ticking along nicely, challenging fear foods (one a week) it's going much better than previous times. We are sitting about 102-105% wfh, I'd ideally like this a little higher as I feel the anxiety is much less with more weight but we've been coming off fortisip so hoping we can gain a little to also add a buffer.
We finally got on holiday which was cancelled last year and it was so good, we ate in different environments with others cooking and actually enjoyed it. Writing it down makes me realise how far we have come this past year, it all seemed so far away and unachievable as if we'd never leave the house again or have a meal without distress. I'd like to think we are making good progress into recovery but I am constantly on the edge and the slightest thing sets me off in floods of tears, I think I am just so run down and constantly focused on food and calories the whole thing has been completely draining. I remember at the beginning of our journey feeling we had lots of support which over the months gradually faded away as people don't understand the struggle behind closed doors and as he looked better I think they thought all was well, work seemed frustrated with all the time the appointments have taken and the fact that we aren't discharged yet. Most family members have been great but overall I've mainly felt lonely and isolated. I'm rambling again!
To all of you in the depths of darkness right now hang on in there

I didn't really introduce myself or explain how we've got here, but we've had a short but brutal journey. Dd14 had struggled with school for just over a year and school reported us to social services for child neglect for failing to force her into school. The Dr said she wanted to be in school but her body wasn't letting her. Referred her for assessment for autism and pda.

The social worker came round in October half term and until then she was eating normally. The following day she didn't eat much - saying her tummy was full of worry. This continued for 3/4 days then she ate nothing at all for 2 days, so we took her to a&e and they admitted her for refeeding. We were there for 6.5 weeks - on ng tube after a week and it was horrifically traumatic. Discharged on 23 December, but hospital's focus on weight and calories has created a monster. She is eating the bare minimum and losing weight. We know she will probably have to go back in but are utterly terrified as it was so horrific. No idea where to go from here and very scared...

@Minicooper Sorry to hear your story. I think all of us have been surprised by how quickly this horrible illness took hold. Is your DD on any meds? It didn't work for us, but a lot of people here have found olanzapine to be helpful with the extreme anxiety attached to refeeding.

@NanFlanders No medication at this stage. Just will power! It's not enough... I think we will need to explore therapy and medication, but fear she's now too medically unstable and will need to stabilise things before that can happen.

@Minicooper mirtazapine might also be an option. It’s a sedating antidepressant which increases appetite.

@Minicooper I am so sorry to read how hard things have been and how quickly they escalated. We were also terrified at how quickly the weight dropped off. Even DD was in shock as she thought that she could just add in a snack and she’d start to regain the weight she’d lost. Anorexia had caused her to think that she could control her weight but she couldn’t and once weight loss started in earnest it needed intensive support to get her to eat enough to stop the loss.
i felt exactly the same as you before my daughter started at Orri. I was out of my mind with worry and not sleeping. She was seeing a private psychiatrist, therapist and dietitian but nothing was working. The psychiatrist was for my peace of mind really as I feared that DD could collapse at any time. It may have helped for DD to hear my concerns repeated by an ED psychiatrist but she was so deeply entrenched in the illness by then that she was in complete denial and was even telling the medical professionals that she knew more than them.
The dietitian, whilst she knew her stuff lacked compassion and DD refused to engage with her. She told me that she had patients who desperately wanted to get better because they wanted to have children but, even with sores on their bottoms, they still couldn’t do it. This really terrified me especially as the Therapist had told me that one third of people with anorexia never recover (this is out of date information). So all in all my own private team did a lot to kill any hope I had. Thankfully, Orri shared my belief that anyone can recover and luckily we were able to afford to send her there and they agreed to take her even though she was very ill by then and needed daily bloods and obvs. By then everything hurt so she was motivated to engage with them. Being able to come home at night was so important to her and for many months she was on the cusp of needing hospital admission but managed to eat enough to stay in day treatment.
if your daughter is neurodivergent and you can find a day unit for her, then that might be best as sleeping in her own bed every night meant so much to my DD.
We don’t know whether or not meds help my DD but her mood seems better so they are sticking with them for now. She had meds prescribed for anxiety and depression before AN was diagnosed but DD said they didn’t help. They had to be stopped when her weight plummeted but were restarted once she was in intensive treatment. She’s had many combinations and nothing has made a dramatic difference but they help a little we think. Therapy seems to be the biggest help for my DD and although she probably didn’t absorb a lot of it early on I do think it enabled her to keep going with the meal plan.

Anxiety, particularly social anxiety, plays a big part in my DDs struggles and the therapy is helping her to understand herself, her social battery and how to protect her recovery. It’s all about building resilience so that she will be able to cope whatever life throws at her. It’s a slow process.

@Shanghai101 Thank you so much for such a full and thoughtful reply. I spoke to Orri after I messaged you, but my dd is too young. Its exactly what she needs. She had severe separation anxiety so the thought of Tier 4 is traumatic for her and us. We are so desperate to keep her here, but some support. I don't think it can happen in time...

Could you contact the Maudsley and ask them for a recommendation for a day unit for a 14 year-old? Maudsley and Orri seem to have a similar ethos

@Minicooper
My 16 yo dd still has lingering separation anxiety and I would feel the same. If your dd does need to be re admitted, you could ask the NHS ED clinic if it is possible for her to be a day patient on the condition she agrees to engage with the service.

My dd was 15 when this started and I didn’t find anywhere willing to take her for in patient. Like your dd she just basically stopped eating for a fortnight and we were so lucky that her friends got her eating again, only once a day and they took her out for meals on rotation. It was a start.

We are using an ED coach, who doesn’t live locally. She was recommended to me on Mumsnet as someone with a lot of experience with working with people, who are neurodivergent.

We have been working with her for about 6 months now. Dd still has a long way to go. Her eating is very rigid and she is putting weight on incredibly slowly. But crucially her brain is now recovering. I also did several workshops with Jenny Langley and the Charlie Waller trust.

I can give you the details of the clinic.

@Proseccoismyfriend you’ve done an incredible thing getting your dd to over 100% wfh. Mine is quite some distance off that when she was on the heavier side before. I totally understand the grinding fatigue.

@Mummyoflittledragon Thank you, that's really helpful. And yes, if you could share details for the ND friendly ED coach, that'd be great.

@Proseccoismyfriend well done for getting so far. It’s great that you got to go on holiday. I suspect that you have carer burnout. Now that things are so much better I hope that you can look after yourself a bit.
May I ask how you go about challenging the fear foods? Once they’ve been tried, do you try to include them every week or thereabouts? My DD will try fear foods but they don’t make it on to the meal plan - yet.