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

[Curlyhairedassasin]

New thread as old one is filling up

@PermanentlyExhaustedPigeon80 CAMHS seemed to object to medication almost on principle. I think medication does have a place in the treatment of mental illness. I asked for a psychiatrist appointment and she was prescribed a low level of antidepressant. To be honest, it was a sub-clinical dose and didn’t seem to improve anything. Two years later, she has a cocktail of olanzapine and two antidepressants. It does finally seem to help with anxiety and self harm. But then she has a low weight and restricted meal plan so her anxiety is lessened.

I’ve never posted on here, but used to follow it when my dd was in the throes of anorexia. She’s out the other side now after 4 years of it. The decision to recover came from her, so it was thorough. I’m just sending you all strength. It’s an utterly cruel and brutal illness and I still don’t think it’s properly understood.

Hi there, we are new here. Our DD12 was diagnosed with atypical anorexia last week with a wfh of 89%. She had started restoring weight before her ED assessment as I had realised what was going on and taken full control of her eating. Made easier by ND need to please and comply. She has started treatment immediately and been offered a nutrition course online, 20 week FBT programme and a dietician input.

Hello everyone- I posted once or twice on the last thread. My 16.5yo dd has anorexia but refuses to engage with any services and I’m at my wits end. I’m not in the UK but we have a similar CAMHS set-up. Dd essentially doesn’t leave the house. She’s been out of school for almost 2 years also. She had been prescribed ssris for anxiety but isn’t taking them at the moment- I can’t get her to the gp either. She’s been getting more and more restrictive around food and is definitely losing more weight - however she is not fainting etc so I can’t justify dragging her to the ER (even if that was possible) but I can see that things are getting worse. I just don’t know what to do any more. She really only has dinner in the evenings and that is quite fraught now. What do you do with a child that won’t engage?

@Spendthrifting She needs a whole battery of physical checks (in the UK, this would be done at a&e: bloods (to check potassium levels etc), ECG, blood pressure. how many calories is she eating? I would be most concerned about her physical health from what you write. DD was admitted twice to hospital for re-feeding when her weight became too low/food intake too restricted. The problem is, if they are very underweight and restrict heavily, it really affects cognitive function and their ability to engage. So the first step is usually re-feeding. Once they have gained a certain amount of weight, it is a lot easier to engage in therapy. Do you know who much she is eating and her WFH?

you also do not wait until they faint to see help via a&e. Please do not think you cannot seek medical help in the absence of a fainting episode.

Thank you for your reply - I know it seems so stupid - I just don’t know what the ER would say if we rock up and tell them my daughter is refusing to eat dinner (it’s actually the only meal she does fairly reliably eat). Her starting weight was about 59kg possibly 60 (at 5 ft 6), then it dropped to about 53 rapidly with restriction - it sort of stabilised there and now it’s taken another nose dive to 50.7kg - all with clothes on and I’m concerned that it’s dropped further in the last few weeks. She wears massive clothes all the time (she’s cold). I’m upset because I thought she would see the gp this morning but then refused at the last minute (her usual tactic).
She doesn’t look well, she’s extremely pale- my friend’s son didn’t recognise her yesterday evening when he saw her for the first time in a good while.
we did have a routine where she ate breakfast lunch and dinner but I can only really say she eats dinner now. I have found stashed food etc that she said she had eaten, stashes of chewed-up spat out food etc.
Dinner would be decent ish- a hamburger with 4 chips, chicken curry with rice ( she’s autistic and we rotate the same 4/5 meals), nachos etc. We have takeaway once a week. She might look like she’s eating the odd biscuit/ice cream during the day/evening but she no longer eats those in front of us so I suspect they are rarely actually being swallowed.
I can see in her legs that she is losing weight - everything else is so covered up.

Just to add re the ER - I don’t know how I would get her there as she just refuses all help. Refusing meaning she shuts herself in her room, very distressed crying, self-harm etc

@Spendthrifting Sorry you find yourself here. I would echo @Curlyhairedassasin 's post though. My DD only fainted once, but was hospitalised numerous times for a struggling heart. (Can you measure her heart rate with an app or similar? If it's under 60 she has bradycardia and should be going to A&E - which doesn't mean that she's okay if it's above). I don't know what the set up is where you live but my DD refused food for a few days and refused to go to A&E - when we did persuade her to go to her regular appointment, we were told I'm not uncertain terms that we should have called an ambulance.

@Spendthrifting Dd's 1st hospital admission was via ambulance. Do you not have the option to call one?

What kind of support are you getting for her? Sounds like you are very much alone ?

Thank you both- She is with CAHMS but refuses to attend any appointments- myself and my husband have been to many appointments without her. We know what we’re supposed to be doing but it’s not working well at the moment at all. We could call an ambulance though I don’t think she is bad enough yet for that- i really wanted the gp to see her and tell me what I should be doing. She has pots and has had an ecg which was fine apparently. She’s had blood tests a year ago but refused that today also. Other than vit d being low everything else was fine. However she has lost more weight since then.
It does feel like we are just waiting around until she becomes more obviously unwell until something can be done.
where I am there are very few state-supported paediatric eating disorder beds available- if she is brought to the ER she would be put in a general ward and then back out once stabilised (if overnight stay warranted). A child I know went through this several times before essentially involuntarily admission to the specialised paediatric eating disorder unit.
She appears to have eaten something today and will hopefully eat this evening- she knows I was very upset this morning - I framed it around needing to see the gp re ssris rather than her restrictive eating.

when was the ECG / bloods done? Dd's went from egc and bloods fine on a Saturday when I took her to a&e to being blue lighted and admitted to the HDU 2 days later. a things can tip very quickly with anorexia. an older ECG is no reassurance at all.

@Spendthrifting I hope you got to the GP . It sounds that a medical review is needed at the very least.

We are hanging on here. She has been sticking to her meal plan ostensibly. I thought it was going suspiciously well and then I found the telltale signs of purging. Disappointing but not surprising. Does anyone have any advice on dealing with purging. The dietitian said to be with her to distract her for an hour after meals.

@Shedqueen we had this. been told to make sure she has no access to the bathroom for 30-45 mins after eating. After that time, the food has been broken down quite a bit and purging isn't very effective anymore.

We are going ok for a change.. We had a lot of aggression as she cut back on all snacks but she keeps eating the meals I cook which are quite calorie dense. had a weight check this week and somehow, weight is stable (didn't expect that). Things have calmed down now a bit as I haven't pushed extra food since I know what she is having is enough. Hopefully, we can settle into this routine and keep going.

Sympathy to everyone going through this. So hard.

Dd is complying with magic plate gained 4 kg but now stabilised. BMI 17. CAHMs appointment after GCSEs finish. She isn’t defiant or unpleasant to us as such but won’t discuss the ED and rails against our minor restrictions as if we are being terribly unreasonable. Have explained so many times how we were complacent for months and she was nearly hospitalised so we can’t take that approach again.

Weirdly been easier with the exams as she’s at home more as are most of her friends so we can monitor. Am worried how it will be when they finish she is desperate for independence but we still don’t fully trust her to eat properly.

Older sister just got back and is a good influence as eats normally.

Hi all, quick update here as dd is back from her first go at travelling.

She has been island hopping in Greece, overall has done well but eye balling her I think has lost weight. I was also hoping she’d come back having moved on or relaxed done of her ‘rules’ but sadly this doesn’t seem to be the case 😕

The positives are she had a fantastic time and it’s definitely helped her confidence but my hope was that she would want to move on from the ED and it doesn’t look like that’s the case.

Travelling would use up a lot of calories though. Dd1 who is a great eater no ED whatsoever just got back and is visibly slimmer despite lots of beer and tacos. So may not be as negative as first appears her eating may have been ok but she burned it off. Dd1 was doing an insane number of steps a day while travelling without trying to.

No gp visit unfortunately. I have just tried to get her weight for an appointment with CAHMS tomorrow with no success either.
i know they can do home visits but she will just shut herself in her room and refuse to come out.
I think I know what has caused this most recent downwards spiral. She has had a friend in school (tiny school that she hasn’t been attending), she went in for one day a couple of weeks ago and apparently that friend’s mother has since told him she doesn’t want him spending time with my daughter. She was sent home one day over a year ago now because she took off her jumper and the principal saw (oldish) self-harm marks on her arm. This parent is on the bom and I’m sure it the incident was discussed. Perhaps I’m reading more into it but I suspect this (friend-blocking) has contributed to things worsening.

Hi everyone. Sorry to hear how things are going @Spendthrifting. You can call an ambulance if you are concerned about your DD's physical health - they can often be very persuasive.

Also sorry to see so many of you are still getting substandard care. If any of you are interested in campaigning for better treatment for EDs, please do join us at the 3rd Dump The Scales march in London on 21 June. Just DM me and I'll add you to the WhatsApp group. https://www.instagram.com/reel/DGckhFOo_q1/?igsh=MXRlMTRvZmczZWhrdg==

Ha, just found you all again! Haven’t seen any notifications in ages so I went searching today as it seemed too good to be true. So sorry to see that some have had a very hard few weeks.
@Spendthrifting I noticed that my DDs heart was struggling when I observed (by eye) the irregular rhythm of the artery in her neck as she was lying on the sofa watching TV. I took her to A&E and they did all the obvs and confirmed a number of things were off - all in keeping with a diagnosis of AN.
@Curlyhairedassasin sorry to hear about the violence towards you. I agree that it is directed at you because she trusts you never to turn your back on her. But you have to set boundaries too. It is not acceptable.
I was at a meeting recently and one of the attendees said something that will stay with me forever. She said never to underestimate the damage that the world does to people with neuro diversity. I think that it is as important to get some form of therapy to gain coping strategies for neuro diversity as it is to address the eating disorder.

@NanFlanders looking forward to seeing you and others at the march on 21st

So I went to the appointment this week by myself and the upshot is we’re having a home visit next week - eek! I’m so anxious now. I will wait until the day before I think to let her know- she’s going to be so angry with me.
i also think that she will just shut herself away and they won’t be able to see her. Am I doing the right thing?
on the positive side she says she has her period which is a relief- am I making this out to be more serious than it is? I feel slightly like I’m going mad.

@Shanghai101 we are now starting an intense course of therapy on the NHS (2 times a week for almost 6 months) to address some of the issues. Hopefully, she can develop some better coping strategies. I have to attend half of the sessions too - I hope it will give me also some better tools to deal with things. I sometimes wonder if rub her up the wrong way.

Weight wise we are stable and in the healthy range now (about 100% WFH) even though she is cut out all snacks. But she is for now home cooked meals which are very calorie dense (my pants are getting tight now) which appears to be working. She is walking a lot though in the house. I saw a glimpse of her step counter and she is doing about 20.000 per day. This is new and only started a few days ago and she gets now aggressive when I asked her to stop. Sigh. also, the pacing for hours in the house does my head in. Stomp, stomp, stomp... I really struggle with the noise itself.

@Spendthrifting Really pleased you are having the home visit - your DD is clearly poorly and needs some professional assessment. Often professionals could talk my DD round to getting weighed etc. when I couldn't. Sick kids often convince themselves it's just parents overreacting, while an HCP saying something is extra leverage to fight the ED. I don't think you are overreacting - stopping periods is often a sign of malnutrition, but some girls never stop their periods. Hope it's a positive visit and that you get some. effective support.

@Curlyhairedassasin Great news that you have managed to get your DD to a healthy weight - well done! And I hope the therapy is helpful
Exercise - I remember the compulsive exercise all too well. One occasion my DD was crying because she didn't want to go out in the cold and the rain but she 'had to' exercise. On a very few occasions, I could divert her into a yoga session online or at the gym, as a damage limitation strategy - which also helped calm her down. Might be worth a try?

How is your DD getting on @NanFlanders. Is the ED still present in some form of has DD been able to leave it pretty much behind? (apologies if I missed a post, I am sometimes not quite up to date).

Hi @Curlyhairedassasin. Thank God, she still seems to be doing really well. She says the thoughts are still there, but she is eating well and freely - we don't have to supervise her now and she makes really good choices. She discharged herself from adult services as she found them really unhelpful and triggering. Having her autism diagnosis has been really helpful, as for many years she had been very depressed about feeling 'different' and I think that was one contributory factor. Antidepressants have been very helpful. She still thinks about the ED unit a lot - she is coming on the #DumpTheScales march to advocate for better treatment - and on occasion will get upset and feel guilty about the way she treated the family - although we all emphasise that we know it was the illness not her. She is very motivated to stay well by the desire to go to uni - she has an offer to study psychology at Oxford after she wrote a cracking personal statement about her experiences with AN and autism. So grateful for all the support we got from you and others on this wonderful thread to help us through the worst though!