Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@ChristineBrooke
Good luck with the GP appointment. Do be vigilant though, because now your dsd is eating the GP may say no action is required. If that is the case, it may set her back. I would therefore argue with them that although she has managed to increase her intake somewhat, she still needs to be seen.

Have you monitored how much she’s actually eating to see if it’s enough? She’s going to need to eat the calories she should have eaten in the first place to put the weight lost back on. She’s 13 is that right? She’s going to need to eat like a 13 year old girl plus a few to several hundred more a day to do that. And as a reminder, we don’t talk calories to ED sufferers. Energy requirements / intake.

@ThatSparklyOliveBird
I’m so pleased your dd is putting on weight. Hopefully her heart rate will catch up soon. Poor love. I hope you’re doing ok. You always seem relatively buoyant with it all, but idk if that’s really the case.

Are you allowed off the ward now?

@CuppaTandBicky
I totally get how infuriating it is. My dd has also accused me several times of being mentally ill. A few months ago, she was also regularly accusing me of being a narcissist. In the end I suggested whe look up what meant. She refused, but I know she has, because the accusations quietly stopped!

I’m so pleased that you’ve come to the conclusion that you need time out. I did similar to what Pearl is suggesting, but at home.

Easter 2 years ago, a little army of friends took it in turns to take dd to a restaurant or the cinema to eat. Dd’s rules were eating once a day in the evening, and she was only able to eat if a friend was with her.

Then I had that blind panic when the friends all disappeared back to school after the Easter break to study and sit their GCSES, which is perhaps similar to how you felt this weekend. School helped to reason with dd by getting her to eat a tiny lunch and dinner to be allowed to attend. I now know I shouldn’t have allowed dd to go, But this was all pre the ED coach as the first appointment was the day after exams finished.

You can do this and it will be much easier with the help of the people around you. I definitely couldn’t have done this alone. Dd would have needed hospitalisation for sure. And it’s ok to hand the reins over to someone else, even if the bulk of it will be on you,

And as Pearl said, the remote can be replaced. I had a little smile at how much they send us to despair, but how we get up, dust ourselves off and do it all over time and time again, out of pure love. And I also wanted to give you a hug all at the same time. This will pass. I know it will. And at some stage, it will be but a moment in history.

Thanks for your wise words @Mummyoflittledragon

I hope no more random objects come to any harm during this difficult time! Honestly it's not my proudest moment.

Hello folks, hope you don't mind me joining your thread. I don't know anyone in real life who has a child with an eating disorder and I find people don't really understand the issues.

We're quite far down the ED road, after a couple of months of support from CAMHS and then 6 months working with the outpatient ED team, DD17 was admitted to inpatient care about three and a half weeks ago. We don't have a specific eating disorder unit where I live so it's a young people's psychiatric unit, most of the kids are there for other reasons, but there are a few other patients with eating disorders.

She went in as a voluntary patient but because she's so underweight (72% WFH) they've very quickly moved to Ng tube feeding and have said if she doesn't either eat or consent to the Ng, they will detain her so they can administer it without her consent. We've been a bit blindsided by the heavy handed approach - she's trying really hard to eat, and is definitely eating considerably more than she was before she went in, and has sometimes accepted the tube, but she's understandably quite scared of being detained and it's actually making it more difficult for her to eat as she's so stressed (she's also ASD so the whole ward environment is really overwhelming for her).

Has anyone any experience of this kind of inpatient approach? We feel like we trusted them with our child and then they've suddenly whipped all control away from us (and her) and she feels very trapped.

Thanks in advance for any advice or support.

@StressedANmum
Thank you for reaching out to us. I don’t have experience of in patient care in this situation and you will get responses from people, who have.
My dd is also 17 and im so incredibly sorry you and she are going through this.

I can imagine a little how difficult this must be for. her. The lights, noise and smell of the hospital if she has sensory overload will be very stressful. Has your dd been offered any adjustments to help with this? Idk if realistically that is possible as many of the patients may have similar needs.

I’m imagining you’ve tried things like noise cancelling headphones, eye masks etc. I’m just wondering if BEAT would have any concrete advice. Have you spoken to them?

As for forced feeding, this is of course a last resort. We are using an ED coach and she told me if dd were to go into in patient care, this would be the likely outcome for her as she would be too anxious to cooperate. So I would be heavily advocating for you dd for any adjustments they can give her to reduce her anxiety and allow her to eat more easily. And I would be arguing that as ED is the mental illness with the highest mortality rate, they really need to be going above and beyond for her.

At such a low weight, unfortunately there are limited options. She needs to eat and it comes a point, where they have no option. Howver, everything should be done to try to prevent her from getting to that point. Have you spoken to the nurses about it at all? An empathetic nurse with experience of ED can often give brilliant advice.

@CuppaTandBicky
Seriously don’t beat yourself up like that. You need an outlet. The remote control was that moment. Are you talking any time for self care? Maybe you could get some counselling through the GP? Or does CAMHS have anything at all? When my dd was briefly under CAMHS, they had a parent turned listener (or whatever they called her) and she was lovely to talk to and gave some really good information / advice. So calming. Maybe your CAMHS has someone similar.

@StressedANmum sending my thoughts your way. We have some experience here. My daughter is on her second T4 admission. Age 17. She was detained. It’s a general psy inpatient. Seems about 50/50 EDs/ other psyc conditions. She is NT.
She has been NG fed in general hospital due to being so physically comprised. Interestingly this was at a higher weight than she is now. She is under 70 % wfh and not remotely gaining or eating. They will only use NG as an absolute last resort where she is. The approach you describe does she very heavy handed and traumatic.
Have you got an ambassador? Sectioned or not you and she have rights, if you feel she might have a MHA assment the MIND website is good for understanding your and her rights. Have you got a point of contact and open comms with her care team ? Can you ask for a meeting asap to understand their approach and adaptations for her being ND. Please feel free to message me x

@StressedANmum I'm so sorry that sounds really hard.
I know that is just what the treatment has to be to make sure they get the nutrition they need to stay healthy but that must be so difficult if she is ND.
Does she have problems with sensory issues around food too?

Does she have a hospital passport in place for reasonable adjustments?

Sorry we don't have experience with this as we are on a general ward. I know that the general ward 'gentle' approach is not working for us though...

@StressedANmum I’d not panic and see what the daytime staff say - sometimes decisions and talk over the weekend can be a bit off-field with staff who are less familiar with the patients..

Also, I observed that staff sometimes play hardball because many patients will eat if they think detention and ng feeding is inevitable otherwise. The poor things aren’t actually messing about, I think they can internally reason with the ED voice that they have no choice but to eat. If that’s the approach, I hope your daughter can do that.

Mine was sectioned on several occasions and ng fed. It sounds worse than it was and she was better for some nutrition and knowing that no one would let her starve herself. That’s not say she isn’t traumatised by the experience. If it comes to it, all detained patients have access to an advocate. whether you can get hold of them is another matter.

Thanks so much to everyone who has replied.

So we have lots of communication with the staff, we speak to a nurse every day for an update, and have also had meetings with her consultant, dietician etc. They just seem very rigid in their approach. DD went in willingly, she wanted the help to get better, knew she wasn't capable of doing it at home and has tried massively hard. She had increased from half to three quarter portions on her meal plan and was managing to almost finish those (this is from a starting point of around 500 calories a day at home).

Since she went in she and I have repeatedly asked for some accommodations (she has all the usual stuff like headphones etc), she used to manage her dysregulation by walking but as she got thinner and we stopped that, she liked to go for a drive with me and listen to music. She'd like to be able to do this during evening visiting for a bit (other patients are allowed regular passes out). She'd also like for me to be able to bring her in an alternative snack sometimes - the food is very school dinners and repetitive. Unusually for an autistic person, she's really adventurous with food, and especially likes spicy stuff so the bland food and endless toast she's getting are not very motivating.

We had a meeting last week and they refused any accommodations. Their attitude seems to be that those things are rewards for when she gets her weight up, whereas she sees them as things that will help her achieve that. Everyone says forced feeding is a last resort, so she can't see why they won't let her try those possibilities first to help her avoid that. They put her meal plan up to full portions but her eating has declined since that meeting and she's been refusing the Ng tube so it's more likely now that they'll detain her.

I've explained our point of view countless times but they don't seem willing to listen. They talk about the intensive support she's getting but they're so short staffed it's not really being provided. She's supposed to be on one to one observation and meal support - over the weekend she was sharing meal support with other anorexic patients who were on quarter portions and eating nothing, which really made it difficult for her to eat, and this morning there was no-one on meal support at all.

They're supposed to have a neuro affirming pathway and a communication passport but we provided the info for that weeks ago and it hasn't appeared. I don't want to be completely critical, there are some absolutely lovely staff in there but they rely a lot on bank staff so there's little consistency.

I guess I just feel like they're demotivating her by being so rigid, she really does want to eat, but she's very susceptible to being disrupted by the circumstances around her. I should also say that the idea of being restrained is terrifying for her - I know it probably would be for any child but she already has cPTSD from a traumatic experience so it's an even worse prospect for her.

I am speaking to the social worker and the patient advocate soon, but I can't see that things are going to change. Part of me wants to just take her out for a drive anyway since she's there voluntarily, but I don't want to make them think I'm undermining with her treatment. She just really needs a break from the relentlessness of being on the ward.

Thanks for replying, I really appreciate it.

Thank you. I'm so sorry to hear about your situation, it must be horrifically draining. It sounds like you're doing the right thing..
Yes, I am not sure I believe it at all, but it does make it tricky to keep going. Just trying to keep the channels open in case it's a front.

Thanks for all your advice I will remember the lingo. I haven't, no my closeness to her comes and goes depending on her mood, so I just do not have the access I need to know that sort of detail most of the time. She's 12, but very tall, and now very thin. Will hope the GP is on it. Everything you say about not being alone does make me nervous -- I need some more back up I think, if it emerges my suspicions are right. X

@ChristineBrooke lots of families have had good initial appointments with their GP. The ED team said to us they would always rather a GP refer someone and they can decide if they need to see them! Xx

@StressedANmum hello, so sorry to hear what you and your dd are going through, sounds tough all round. You're right about the 'reward for good behaviour' approach, we've definitely noticed that for my dd. She was firstly 'rewarded' with being able to leave the ward in a wheelchair, and today they've talked about increasing her snack options, as she's sticking to her meal plan.

Argh, a frustrating day here however! No weight gain since Friday, despite eating everything on the plan 😞 So, it's being upped again, much to my daughter's distress. So confusing though, she's been told she can pick more options, however she can't chose when to have them, that's still down to me to decide...!!! Hoping for a bit more clarity tomorrow. Sadly, no closer to going home today, really hope for an improvement as the week goes on. So fed up of being stuck here now!

@ThatSparklyOliveBird good news about the snack choices, I think they think you will have to be in control for discharge, I agree it just makes it harder for both of you though. They could definitely ask her!

The Monday and Friday weigh ins. I had to remember there isn’t much time between the Friday and Monday ones. Did the dietician change the plan or the doctors?

I really hope you get some news about home soon. Have they started talking about it at all? Xx

@Pearl97 thankyou, joint plan i think. The consultant saw us today and said about changes needed, then the dietician is tweaking the plan, once again sooo much yogurt! She's redoing the snack list, so will see any updates tomorrow. Re going home, sadly still not. Think there's another meeting on Thursday, following a further weigh in, so got everything crossed there's some improvement and hopefully the start of a discharge plan x

I really hope everyone had a better day yesterday xx

Thanks @ThatSparklyOliveBird it's incredibly hard on the kids but it's so tough for us as parents too, isn't it, the amount of stress we're all carrying is phenomenal. Having to stay with your daughter all the time in the hospital must be a huge strain, we're only allowed in evenings and weekends. I hope you get home soon.

I've got a meeting this afternoon with the consultant and the social worker, I have a horrible feeling it's going to be about detention.

@StressedANmum I was telling a friend yesterday, I didn’t realise this emotion existed. I’ve experienced death, ending if relationships etc but the feeling of doom in my stomach isn’t something I knew existed until my daughter was poorly. I’m thinking of you xx

Struggling here too. Its such a lonely place.

I don't know whether as a voluntary patient there is a right to choose and there are other services? Forgive me if that's way off. This stick/carrot /reward stuff belongs in the 50s

@Pearl97 absolutely, I never imagined I could feel like this, sadly for us the eating disorder is the culmination of more than five years of spiralling mental health issues, so although inpatient care is far from ideal, it's still sort of a relief. You have all my sympathy.

@unbuckle hope things improve for you soon, it's so hard. Unfortunately we're not in England so no right to choose, and as far as I can find out no private options either - this is it.

Yes I too am familiar with the doom feeling. It’s horrendous and at these times you want to give up. But then somehow you have to motivate yourself to dust yourself off and keep going. Plodding on but feeling like you’re not getting anywhere. Our whole family is feeling it and I feel like it’s up to me to keep everyone positive, but most days I have to go and cry somewhere.

It is such a lonely sad existence isn't it.
I've been wondering whether to seek some medication from the GP to help me but I know I'd be ok if the situation was different so not sure if it would be helpful.

Sending you all love and hope..as long as this can stretch on, it's just temporary

I did find therapy helpful. At least it gave me someone to talk to. Most of the time I'm ok. Today I'm so tired of the daily wait to know they've survived another night

Sending lots of love to everyone. It really is a lonely, sad existence. It must be even more isolating when you're in hospital. Even at home it feels lonely. My family don't ever ask how she's doing or check in. I find that very hard. I've supported them through all sorts in the past but now I need them it's crickets.

I've also thought about therapy. Camhs are arranging for us to speak to their family therapist so I'm hoping that helps.

I would think about personal therapy if possible. The aim of family therapy isn't to support you personally but to support their recovery. I'm sure you do want to support recovery but I would be cautious of making the therapeutic space you need essentially about someone else

It's not for family therapy, it's for me and DH without DD for now. She's not weight restored enough for therapy yet. It's supposed to be support for us. But yes, if it isn't helpful I'll definitely just consider getting my own therapy.