Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

@NanFlanders thinking of you and hoping for a good day for your DD today

Bring it is overwhelming and I second everything the other parents are saying. Work has to wait but I appreciate that bills still need paying. Definitely start an application for DLA, I'm not sure if you're on the fb page but there's lots of support if needed to complete the forms on there.

You will also find your food bill will double, I spend a fortune on food and also things like eating out, take aways etc which are all part of the recovery plan.

Thanks @Lottsbiffandsmudge x

Had a row with dd tonight, she's eaten half of what she's meant to all day and I lost my temper with her.

She came back with 'this is who I am now, I chose to have an eating disorder and that's my choice'

I spent the rest of the evening in tears and she's completely ignored me.

I honestly feel like I'm going mad, I've had over two years of this now and it feels never ending.

We're going to Portugal Thursday and it's just going to be the same shit there that it is here 😢

@Girliefriendlikespuppies just wanted to send some virtual hugs. Soŕry its so tough for you at the moment. It's really so hard this illness. My daughter has said word for word the same as your daughter on many occasions. It's really hard, so difficult and complex, but tomorrow is a new day. Recovering is not linear, there's lots of back and forths, up and downs, as I'm sure you know. But all I can say there are times that I sometimes feel I'm winning or at least progressing in the right direction. We are 8 years in, lots of bad times. Still struggling but at the moment I feel something small but significant has changed and I really didn't expect that to be the case just 2 months ago when we were looking at another admission. Hang in there, you are doing a good job xxxx

Hi @Girliefriendlikespuppies sorry to hear what a difficult day you’ve had - I find it heartbreaking when you hear what they are thinking (we’ve had ‘I can feel the fat on my legs when I sit down’) - to hear the twisted thoughts of this illness is soul destroying, especially when you feel like you are making progress. I follow your posts and was thinking of your holiday this week - I pray the illness does not spoil things for you both. I hope today is better than yesterday.

@Girliefriendlikespuppies So, so sorry. It's so upsetting when they (or rather the illness) says such fatalistic things, isn't it? Nonetheless, you have done so well to get her weight-restored. Keep on keeping on. Your girl is in there and you will win. Hugs.

Thank you everyone. I know you all get it.

Today is a new day so on we go. I don't think the heat helps as I genuinely don't think she's that hungry.

It's just the things she said can be so hurtful and she's so cold towards me even when I'm crying my eyes out. She was always such an empathetic girl who hated seeing me cry so it's hard to see this change in her.

Blue I'm glad you feel something has shifted in the right direction, that's fab news.

@Girliefriendlikespuppies Hope today is a better day for you both, and for everyone on this thread. I have already learnt so much from you all and really value your support - I wish I could offer similarly sage advice but can only really say hang on in there, you have both come so far x

After nearly two weeks in hospital, DD has still hardly eaten a thing - she stopped eating straight after her GCSEs and after a week was right back where we started 7 months ago - dangerously low heart rate, fainting. However, thanks to the NG tube, the consultant says her obs are now 'beautiful' and suggests removing the tube. DD now even more adamant she doesn't need to be in hospital. Consultant also suggested that DD would be 'bouncing in and out of hospital for a while' as she 'doesn't want to recover yet'. I could have wept. Is that it then? How can we go on like this? We take her out, sit with her all day while she refuses to eat , she goes in and out of hospital? She's out of school, I'm off work. How have other people turned this around?

I think the consultant sounds clueless tbh nan. I think I'd want them to take the tube out but have the threat of them putting it back in every time a meal or snack is refused and for your dd to know that would be more calories.

Taking it out with no clear plan is crazy, what do the ED team say?

I agree with girlfriend on this. Did you say it's Alder Hey?

The ED team have a meeting on Thursday - I think they'll make decision about the tube then. It seems crazy to me to be taking it out before eating is re-established though. (We had the arrangement previously that we went up to A&E for a tube feed if she refused a meal, but ended up using that option more often than they'd bargained for, and insertion was often traumatic, so I'd sooner it stayed in until she's eating). In fairness, we do get fantastic support from the ED team, but everyone seems to say something slightly different - one thinks it would be good for DD if I was back at work (I've been out a long time so worried about keeping my job now); another that I need to be there co-supervising hospital meals...
Meal supervision also not going well. DD was really rude and uncooperative when I tried to supervise her dinner tonight. She has asked that I only come to the hospital every other day - and has asked me to leave twice this week.

Sorry, I'm just venting here - it was the idea of 'bouncing in and out of hospital' that really upset me. I'd been hoping that the point of a longer admission was for some kind of traction to be achieved. Hope everyone else has been having a better day.

Hi @NanFlanders and sorry to hear where you and DD are currently at right now. The consultants comments seem tactless. I can only offer our experience, the NG tube was not removed until DD had eaten for three days. Eating was unpleasant with the tube in but DD had to experience that to know that is not what she wanted to continue. Tube back in if she stopped eating.

We constantly had the same meal supervisor at hospital and she was so strict, at the time I thought she was too harsh but looking back she did what was needed. On the rare instances she wasn’t there the ED pushed the other eating supervisor around.

The approach was the tube stays until you eat fully, then continue eating without it or it goes straight back in. They bullied the ED. Also looking back as parents we made life too comfortable for DD is hospital - we didn’t want to leave her and brought her everything she wanted from home, buying loads of books etc., looking back in a polite way the hospital kind of said to us ‘don’t make life comfortable here for the ED’ at the time we were is shock but looking back they were right, we could have left her overnight as she is safe in hospital - and we wouldn’t be jumping to the ED’s demands.

We co-supervised meals which meant the ED could not hide, the ED team were effectively training us at the same time as showing the authoritative stance we have to take against the ED at mealtimes.

I had this rather fantastical idea that when DD was at home if she stopped eating then community services would come to the house, assist with eating until DD was back on track. This would be cheaper to the NHS than a hospital admission surely? It never happened and we haven’t seen anyone in community however the ED team did mention once that the strict meal supervisor I refer to above could make home visits. I could see on the meal supervisor’s face that she did not fancy this - we live a long distance from the hospital, I hope it wasn’t a passing comment but something they could actually accommodate. It’s a long shot I know but in your shoes I would ask and enquire if they have provided this ‘home’ service before.

My opinion is that you have to stay off work and supervise your DD. Like my DD she won’t eat on her own and if she doesn’t you will end up back in hospital and off work then.

I imagine you will reach the point when you can slowly phase your return to work (part-time helped me) - my head space isn’t 100% in the job but having something in my life away from the ED helps me and in turn helps my DD - but you’re not there yet.

Thinking of you both today.

Telling you to go back to work is so unfair Nan your dd is so ill I can't see how you going to work would help anyone. I'm sorry the team aren't giving you consistency, that really doesn't help.

I would ignore any demands or rudeness your dd makes though, that's just the ED spewing it's hatred which is what it does when it's feeling pissed off. If the ED is pissed off then good, it should be.

Have you spoken to hr about how long you can take off work? Most places allow for a year although that may not be paid. Have you applied for all the benefits you can have?

Things have settled here a bit, dd (sort of) apologised for being horrible the night I was upset and made me a lovely bracelet which was nice. It reminds me just how Jekyll and Hyde this illness is though!

We're off to Portugal tomorrow which I'm feeling quite stressed about, praying it goes well and we both have a good time.

Thanks @D1ANA22 - I was just a bit down last night. It's been 7 months of this and we don't seem to have made any progress at all - she won't eat for the meal supervisors and she won't eat for us. The tube builds her up, she gets discharged and she goes down. Aarrgh.

@NanFlanders i feel so sorry for you. Personally I would challenge any decision to let her home before she is properly eating without the tube. If that means taking it higher, then that's what I'd do.

I guess I was kind of hoping they'd keep the tube in until her brain was better nourished and then she'd be more likely to think rationally.

@NCTDN - Thanks. I'll look into that.

@Girliefriendlikespuppies Hope you have a great time in Portugal - you deserve it! And it sounds like your DD is fighting the monster now - maybe the other day was an extinction burst?

Work - I actually am desperate to get back to work, though i recognise that's not realistic right now. For the mental health benefits more than the money really (I do work from home) I think the ED person was worried about me going down! Benefits - we can apply for PIP but need DD's permission for us to act as her agents as she's 16. She won't give this because she doesn't think she's ill!

Anyway, today is another day! Long overdue haircut this morning and then up to the hospital for lunch. Hang on in there everyone :-)

@NanFlanders going back to work is obvs a very personal choice and has pros and cons. When my daughter was first assessed by CAMHS, she was admitted immediately, at the same time as I was being made redundant! So I started my redundancy a bit earlier and had a small payout to live on. I got another job and they were very understanding and agreed to delay my start date for a bit. Eventually I went back to work after about 3 or 4 months off. My daughter was in tier 4 unit by then, mealtimes were protected and very strict visiting rules anyway. I found work a welcome distraction, definitely helped with my mental wellbeing. My daughters first admission was nearly a year long, so it wouldn't have been healthy for me to stay at home for that long. But difficult decision and all our situations are so different.

@Bluebuddha10 Thanks for sharing your experience. I hope your daughter is doing better now.

@NanFlanders i am sorry you are having such a difficult time in hospital with dd. I am completely new to this but I do have experience with challenging hospital approaches to treatment in other circumstances. If you are unhappy with the treatment plan, please keep fighting. You have a right to a second opinion so perhaps you could ask for one?
It is really hard to challenge medical professionals and they can make you feel very disempowered. One consultant told me dismissively that there was nothing wrong and I was making a fuss; he was wrong.
Returning to work must be a hard decision, and a very personal one for you to decide not for others to dictate.
I am wrestling with the idea I might have to alter my working schedule as I came late to my career and I love my job. It is physically, mentally and emotionally demanding but the thought of not doing it fills me with dread. I am also the main wage earner so the financial implications of not working scare me. I think as it is such early days for us and the holidays start next week I am burying my head at the moment.
@Girliefriendlikespuppies have a lovely time in Portugal. It sounds like your dd has some insight and understanding and that must be a positive thing.
Hope you all have positive days. I am back to work tomorrow after a week of FBT, which has been going well - lots of resistance and talk of wanting to die but every mouthful eaten. My Dh and mum are in charge so we’ll see how it goes.

@bringmethehumous - 'every mouthful eaten'- that is FANTASTIC!! Well done you!

Thank you - we have been lucky this week as we have had 3 adults sometimes 4 to 1 ED! Dh and I keep reminding ourselves this might be a honeymoon period.