Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

We have a doctors appointment tomorrow. I am collecting her from school soon. We are going to talk to her this evening and let her know we have a doctors appointment which is being driven by her sports club being concerned about her energy levels. Doctor was good on the phone, he said he will do weight, height, blood pressure have a conversation about how she is feeling in general and then take it from there. He was on the phone by 8:15 so he seems on it and is obviously concerned enough to have an appointment to see her quickly. School are aware, I have updated them. I don’t think we need to do A&E today, although depending on how tonight goes that may change. Really appreciate all your input.

Dinnerisburnt

Your GP sounds excellent and really on the ball. Wishing you all the best for talking to DD tonight and for the appointment tomorrow.

@Dinnerisburnt that all sounds like a lot to get your head around. Your G.P sounds like he has a plan so wishing you well for that appointment and your discussion w your DD tonight.

We've been to the ED clinic, dd has lost more weight. 4 weeks ago she was 90% wfh and is now at 88%. They said if she loses anymore they'll be taking her out of school to facilitate treatment.
I hate this illness

@CrackersCheeseAndWinePlease sorry about the loss, I hate this illness too. We've had two easier days where he's eaten everything with minimal upset and resistance and I began to wonder if we were getting somewhere but tonight has been a battle again and lots of upset and shouting. I'm so defeated

Hello everyone, thank you for your help so far. I’m finding it so scary to think that my daughter could be so ill so quickly.

So, after her recent weight check a couple of days ago it looks like she has lost almost 3kg in three weeks. Her psychiatrist wouldn’t refer her to the ED clinic recently as he didn’t consider her underweight enough. However, we were meant to have an appointment with a counsellor from a charity today ( but she cancelled), and when I told her over the phone about her recent numbers, she said she was going to ask the ED service about her as it’s such rapid weight loss.

I’m not sure what her weight for height is (and what numbers does she need to go down to to be considered ‘in danger’), but on the NHS BMI calculator she is at 30th centile. It’s so frustrating and frightening that she can’t get help until she inevitably loses more weight.

She admitted that she is exercising in the night, and she won’t eat unless someone makes her.

I’m not sure what I’m asking really, but I wonder if we need to get her seen more quickly. Her rearranged appointment isn’t for another two weeks now.

Cats how olds your dd? Can you self refer her to the Camhs ED service? 3kg in 3 weeks is a lot, how much food is she eating now?

That's terrible advice from the psychiatrist, it's not really about how low their weight is but how much weight they are loosing and how much food is going in iyswim.

Catsback

The behaviours she's showing along with the rapid weight loss should be enough to be referred to camhs ED service. Are you able to refer her yourself in your area? You could try calling them and asking what the procedure is.
Try and get extra fats in wherever possible to prevent more loss. Could you sleep in her room for a while to stop her exercising?

CrackersCheeseAndWinePlease sorry your dd has lost, its always a blow, but it's not a huge amount and she's almost maintained. Don't be downhearted and keep going. Hopefully you can use school as leverage.

Proseccoismyfriend sorry you've had an awful evening. Get a good rest and I hope tomorrow is easier.

@Proseccoismyfriend it's such a rollercoaster isn't it? DD was so defeated as she'd tried to eat more this week, I later found out school have let her do PE which I'm furious about

@BagpussSaggyOldClothCat @Girliefriendlikespuppies - I’m hoping that she’ll get a referral through the charity counsellor. If not, I will try to refer her myself. She also has an appointment with the school nurse today to take her blood pressure and pulse.

@Catsback I do think she should be seen more quickly.
Has she had bloods and a proper medical check at any point?
Losing 1kg per week for over 2 consecutive weeks is a red flag in the MEEDS assessment criteria for front line staff. I have linked it here. Download the Report (1st down load) and look at Annexe 3 this lists the flags.
Honestly she needs to be seen by a doctor ASAP if that hasn't already happened. Her original weight is not the issue it's the rapid loss that is coupled with her other behaviours.
https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233

General psychaitrists and often GPs dont know their arse from their elbows when it comes to assessing those with EDs , in my experience. DD saw counsellors who enabled her ED. Despite me desperately trying to explain my concerns.
Please get referred to the specialists.

Does anyone have a rough guide (I know each journey will be different) of how long the resistance over eating lasts or how many times is appears to settle before it rears it's ugly head? I'm just looking for a little hope.....

I think I need a hand hold. Discharge day today. I'm panicking! DD has told the staff that if she's discharged she will stop eating, start pacing and start hurting herself. Their view is this is all to do with the transition anxiety and won't play out. I do agree, but am so anxious that we won't be able to keep her from slipping backwards. Things were so horrific before she was admitted and I think DH and I are struggling to move on from that trauma. I've never experienced anxiety like this, it's crippling.

@GrannyRoberts virtual hugs sent right to you, she's right to feel scared I'd just keep reminding her she's getting better. Wish I had more advice, easier said than done but she'll pick up on your anxiety so try to hide it. I'll be thinking of you ❤️

Proseccoismyfriend

Yes it's so different for everyone and depends on their mental state and weight at the point you start tackling the ED.

Dd was very poorly and 78% wfh when first diagnosed. It took around 3 months to turn her around from severe restriction and get her eating her meal plan with little distress. Weight gain was painfully slow but once she got over 90% wfh her mental state improved quite dramatically.

I'd say we are living 'well' with anorexia now. To look at dd you would think she was like any other 17 year old, but behind the scenes many ED behaviours and often severe anxiety still lingers. However we are a world away from those first awful few months.

GrannyRoberts

Your poor dd's anxiety is running at full speed because of the change and that's bound to trigger your own anxiety as you've been through so much. I really hope that dd feels safer and calmer once she's home and you can start to move on together. Sending you all love and strength ❤️

@GrannyRoberts virtual hand hold here.
Although you don't feel it i think it's key to act assured. My DD found it incredibly helpful to hear things like 'I know this is scary for you, but we know what we are doing and we are going to support you on this next phase' or something similar.
She needs to know that you have 'got this'... to ease her anxiety. She's losing her safety net and needs to know you can replace it.
Even if you don't feel like you can do that, act like you can! Fake it til you make it was my mantra.
Take all the learnings from her being an inpatient and apply them at home.
Take each meal at a time.
Keep swimming alongside her. Be compassionate but assertive about her eating.
and then scream into a pillow or come on here when it gets too much! You have got this.

@BagpussSaggyOldClothCat thank you ❤️

@Lottsbiffandsmudge you're spot on, that's exactly what I need to do. Thank you for helping me focus on what needs to be my most immediate priority. I'm stepping into my costume of confidence right now!
@BagpussSaggyOldClothCat @Proseccoismyfriend thank you for the hand hold, it really does help.

Oh, my poor sweetheart. Just has a distraught phone call from my DD at the Unit. She had been really triggered by a new arrival being restrained for an NG feed and obviously brought back lots of horrible memories for my DD (girl apparently looks like her and has a very similar name, which doesn't help). She was begging me to advocate for her coming out at her next CPA. She has a provisional discharge data of 17 November if she is at 95% WFH. She is eating, but at the current rate of gain, isn't likely to quite hit 95% by then. Thing is, although she is working so, so hard, I don't think I should advocate for discharge if she isn't at the right wfh. At the weekend, she was insisting on using teaspoons to eat instead of tablespoons - which is a trait from right at the start of her ED, and, when she gained 1kg overnight before ward round, the ward suspected waterloading, and made her do a urine test: she was humiliated and the results were apparently suspicious. She swears she didn't waterload but who knows? And she'll only accept the very lowest calorie juice on the meal plan. I'm really proud of the progress she's made, but I just don't think she's there yet, and if she does get discharged too soon, and relapses, then - given her age- our options are very limited.

Oh @NanFlanders I'm sorry to hear that. My DD was finding ward life hard as she gradually worked her way up to being the closest to discharge and seeing all the new admissions and how ill they were was difficult for her too. It's definitely a thing. We got to a point where it seemed as though the ward was no longer the best place for her. She still has loads of anxiety but apart from her weight there didn't seem to be a lot of progress recently, in fact she was becoming less engaged and less interested in returning to "real life".
Not sure what the answer is for your DD. Could you advocate for a series of long passes in the lead up to discharge? So that she's maybe away for 5 nights and back for 2 or something? That way she's still in the system but it gives you a chance to see how things are, and gets her away from the ward environment?

How was your evening @GrannyRoberts ? Hope your DD settled well.

Has anyone else struggled to get a diagnosis? We have been to the ED clinic three times under extended assessment and they remain reluctant to “saddle” DD with a label of ED. She was 79%wfh in June when she turned 11, and we’ve got her to 84% through supervised eating, bathroom restriction and dosing her with double cream/ice cream milkshakes etc.

She’s not raging against us, she just eats tiny mouthfuls very slowly and mostly eats half of what we give her, often through tears. She won’t eat meat unless it’s mince/sausage/nuggets but will eat a range of veggie foods so don’t think it’s ARFID. School have been like a brick wall and I think a diagnosis would mean they start to support her, but also to rationalise it to ourselves!

We have a further appointment (just for obs) in two weeks, so plan is to carry on with the food diaries and the supervised lunches and the reduced timetable I guess until she gains enough weight to be off their books? So tired of being in limbo :(

Nan that sounds so hard but I think you're completely right to insist she stays in as long as possible especially with those red flag behaviours. 95% is a tricky wfh I think as the balance starts to tip so the ED can sometimes start shouting really loudly as it knows it's under pressure to fuck off finally!

My dd is going to France with her bf and his family on Saturday <gulp> haven't slept well this week worrying about it. She's generally so much better but there are still loads of behaviours and rules to challenge. I feel like I keep her thinking over by pushing/reminding her to eat enough and I still make high calorie dinners.

My hope is that being with another family and completely out of her usual routine will be good for her and help her relax around food but the obvious fear is she won't eat enough and will come back worse than ever 🫤

Her bf knows a bit about the ED and has said he'll keep an eye on her, I haven't said anything to his parents as dd hasn't wanted me to and I don't know them v well.

I guess I have to see how she does, hope for the best but be prepared for the worse!

Glitter we never got an 'anorexia' diagnosis they told us it was 'restrictive eating' which is surely the same thing?!

Getting a diagnosis out of the NHS is hard going ime. Not sure why because as you've said a diagnosis is helpful in getting the right support.

@Glitterfarti our evening was good however DD was up in the night feeling very anxious and took a couple of hours to settle (she didn't want to tell me what she was anxious about but I suppose the transition, possibility of relapse, how she'll cope at home are all playing on her mind).
Diagnosis has been elusive for us too, even after 3.5 months on a psych ward they have said ahe has an eating disorder but still haven't decided on exactly what it is.
I'm sorry school have been so unsupportive. Do your team communicate with the school at all? Could this be arranged, to discuss how best to support your DD?