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

[Mummyoflittledragon]

New thread. The old one is full…

@Pearl97 lunch was ok. A bit awkward but we had some very useful conversations with the team.

@Raspberrysins that’s what I hoped you would say. It’s a strange experience but it’s time to chat and there’s nothing else to do but chat. I found I spoke the most in the lunch sessions!

@CuppaTandBicky as hard as it is I think you need to come home at night and get some sleep. You’ll need all your strength for when they discharge her.

Your dd will be upset but being able to manage her distress is part of this.

@Raspberrysins that’s good she has accepted she can’t make safe or sensible decisions, I’d also push encouraging blind weighing now as well.

This explains a lot. Perhaps because he was a single parent/widower, he is very sensitive to anyone implying he hasn't done a good enough job as a parent, or has let them down in any way. I think he would/does take it as an accusation of less than perfect parenting. So the answer might be more understanding of the nature of the things, as you explain it here. Thanks x

@ThatSparklyOliveBird thanks. I am so sorry your dd isn’t allowed off the ward yet. That must be very suffocating for you both and wishing for better news tomorrow. I hope you managed to give your younger dd lots of hugs and that she’s doing ok. My dd is an only. I can’t imagine how hard this must be when you have more than one child.

@Raspberrysins
I’m really sorry your dd has lost weight this week. Unfortunately the ED can be incredibly sneaky. They just can’t help it. My dd left to her own devices will simply just give herself less and less, which is why it is so important to make habits of something of set amounts, eg dd makes herself a sandwich with 3 slices of cheese.

I think it becomes more difficult when the certain quantities are needing to be done by sight or measurement. And knowing what constitutes enough for a meal, without the ED taking over. I have needed to step in with my dd. Despite being almost 18, she has a lot of magical thinking and thinks she is in control of this. Because of that, she has no need to admit to herself there is a problem. And although I think subconsciously she knows, in her rational mind there is none. It is therefore great your dd is relinquishing control. It’s a step forward.

@ChristineBrooke It’s really tough when you can see something and the other person can’t. I agree with @sammyspoon that as a parent, there is a lot of denial and justification, then guilt when you realise what’s going on. My dd was restricting for a very long time before I took action. I thought it was a phase and year 11 GCSE anxiety. And she didn’t want to talk about her eating, got incredibly defensive. And I thought it would pass. After all, I did the same at exactly the same age, but I didn’t become mentally unwell. And what I now know that’s because I don’t have a genetic predisposition. It wasn’t until dd became very unwell after the trip to A&E for an unrelated matter, when she ate almost nothing for 2 weeks and hardly drank any fluids that I realised this is very serious and began to take action.

If your dsd is trying to prove she’s ok, it is likely she will crack, because like anything, you can only keep something up for so long. Is she eating at school do you know? And have you talked to school about it to see if they’ve noticed anything? What about PE?

@Shedqueen I agree. I get the rationale as there’s only a certain number of places. However, it’s the job of a civilised society to treat the difficult cases, because as you say, it’s not that they won’t, it’s that they can’t because of brain starvation. I really thought my dd would be further along by now. But she’s just a couple of light meals away from the start of relapse constantly atm. So that’s just a functioning anorexic. I do wonder what difference there would have been had ED services kept her on and if the NHS didn’t allow 16 year olds to discharge themselves.

@CuppaTandBicky I think you should heed the advice from @Girliefriendlikespuppies to go home and rest. You will no use to your dd if you can’t function. I get she’s really struggling as well. But you will have more energy to encourage her to eat and to advocate for her when needed. And get a little space for self care, which is really important, so that you don’t crack.

Hope you get better news from the ED consultant. It always seems to be them who make the decisions regarding what we can and cannot do..the medics/nurses just follow what they say regardless of numbers.
May be worth mentioning you find it a bit stifling not being able to leave the ward.

Thankyou, our community eating disorder therapist came in today for the first time, to chat with us about how things are going. Good to get reassurance that there'll be a firm plan in place for lots of support once home, with daily meal supervision at a minimum. Meanwhile I've been advised that the consultant doesn't want me staying with dd for any meals or snacks now, I think mainly to give me a break. Nice in a way, but also really hard on the times she's upset. I'm currently eating a ready meal in the ward kitchen while she's got a nurse she's never met before sat by her bed!! Ah well, guess it'll all help xx

Enjoy the time alone. I know that's easier said than done. They've never said that to me but I don't think they'd have enough staff to accommodate somebody sitting with her for that long to be honest.

@CuppaTandBicky @ThatSparklyOliveBird I am surprised the ED team don’t supervise at least a meal a day Monday to Friday. We had someone do that as they wanted to see the portion etc. It does make sense the hospital staff can’t,but they should!

I was surprised how much the ED team ruled. We were medically discharged way before the ED team let us home.

It is good you will have help when home. The thought of people in my house was a lot, but in practise it worked well and we often went outside to chat to one of them while the other stayed with my daughter. It made me feel less alone.

@Weightlossworried I am here to take some of your worry about tomorrow away. I will be thinking of you xx

Thank you so much @Pearl97 I really appreciate it. I can't wait for it to be over but also don't want tomorrow to come! We've had a nice week with DD in a reasonably happy and calm mood.

@Weightlossworried we will be on your shoulder. I would say try something slightly new on your reaction etc. Remember you are in control, you choose to go. I had to keep telling myself that! Xx

Hope it goes well tomorrow @Weightlossworried

@Weightlossworried I just re read my last post and I think I sounded patronising. I’m sorry, I just remember calling my friend crying after a meeting and them saying, you wouldn’t let this happen at work, you need to stop being such a yes person with them xx

@Weightlossworried i hope today's appointment goes well for you all. The week my DDs weight went up - turns out she'd drunk lots of water before hand which probably influenced things. Our CAMHS teams noticed she went to the loo aftwards and told us to watch out for it. Then this week when she lost 1.1 kg, she basically confessed what she'd done, and tried to make out the loss wasn't so bad, as last weeks 'gain' was most probably just down to the water!

Hi everyone. Need a hand hold. Today has been utter shit. After agreeing to let me take control DD has been horrendous. I am not cut out to deal with this. How can I do this every day? Latest was she poured a glass of milk all over the floor because I wanted to watch her drink it. Then lots of screaming , door slamming, telling me to fuck off and die. This is no way to live our lives. My poor younger DD is out playing in the garden no doubt listening to all the screaming.

Aww it is shit.

I think it’s fine to go and have a good cry in your bedroom on days like this.

It helped me to know that I was seeing the ED is all it’s hideous glory when dd was being vile and you have to see the dragon to slay the dragon iykwim.

The ED will be massively riled because your dd has given consent for you to take control. You have to think of dd having two completely separate personalities now, there’s your lovely dd and there the parasitic ED that wants to control her.

All you can do is stay outwardly calm, the ‘side effects’ of FBT (high anxiety, aggression, hatred towards loved ones, self harm etc) have to be managed in the same way you’d manage if she was having side effects from chemotherapy. Patience, kindness, compassion and pure grit that you will not let this illness take your child.

Clean up the milk, pour her another glass and tell her you love her and she absolutely has to drink the milk in front of you.

Offering my hand @Raspberrysins, that sounds incredibly tough. Does it help if I tell you I think you're really brave to confront the ed? I think part of our problem is that we are too worried about upsetting DD. It may be more peaceful but it means she's stuck. I hope things calm down for you this evening and tomorrow.

Our appointment went ok. You weren't patronising at all @Pearl97 . I think your advice is spot on actually.

We had the dietician with us today and she did most of the talking. I really like her. She's much more practically helpful and sympathetic than the nurse. DD has restored 0.3kg. she was upset before we went in as she felt bloated. She's really upset now. We'll see how dinner goes. Snack went out the window.

The dietician thinks we are compromising too much with the ED. We probably are TBF. We are too scared she won't eat at all if we don't compromise a bit. Dietician basically said we need to let go of that fear, if it comes to it then they'll manage her medically but we need to be uncompromising in what we offer. I've decided I'm not going to allow any more threats of hospital. They can't ask us to be brave about this stuff while simultaneously terrifying us with tales of how awful hospital is.

I did push for her bloods to be done again. The last ones showed elevated amalyse which indicates she's been making herself sick. DD is adamant she hasn't been making herself sick. Whilst I'm not convinced she's being honest, I do think after a couple of weeks of us supervising her closely to ensure she isn't, it's worth repeating them to make sure nothing else is going on. The dietician agreed.

I actually hope she was making herself sick and we've successfully stopped it. That might mean we don't need to do too much with the meal plan to continue to restore. I think this might be the first time we've had 2 weight gains consecutively...

@Raspberrysins I am sending you strength and hope too. This will feel shit right now, but you are facing it head on. It’s a monster truck fight and you will win. This isn’t your daughter this is the ED. I do know that atm you just want to say F@ck this and run, but you are her constant and she loves you - this won’t last forever. I know you were hoping these few weeks would be better so I totally feel your pain.

@Weightlossworried I’m really glad the dieteician was there. They’re totally right and just keep saying hospital is like telling a child not to climb on a climbing frame, they’re not going to listen. Your daughter doesn’t care about hospital, and you need to move forward as you are or you’re just going to be dreading these appointments forever. I really hope you feel like you’re in control now, both of your daughter and of how the treatment she receives is given. Xx

@Raspberrysins
That sounds just like my dd unfortunately. I had 6 months of that straight at the start and her telling me I’m not her mum. We aren’t a family - she still says this one now if she’s restricting. It’s so demoralising. And it’s absolutely ok to need to take a breath for self care and to cry.

With my dd, showing her any kind of weakness or letting her know in any way that I am upset encourages more nastiness. And gives the ED a signal that it is getting to me, so to keep going until I crack.

The best response is as @Girliefriendlikespuppies said to calmly get her to drink the milk, to remain calm. And to shower your dd with love. She really can’t help, it even if it is so incredibly painful for you. She does love you.

With my dd, at the stage your dd is at right now, there were no consequences or criticism of behaviour. It was incredibly important to talk gently, lovingly, to find connection wherever possible. I sent so many text messages of love, connection, hearts, kisses, encouragement to tease her out slowly. So much positivity.

Your dd is likely at a stage, where she can’t really feel complex emotions so she can’t really give the love back. And the response to ‘I hate you’ is ‘thats ok, because I love you and I have enough love for us both’.

I feel for your younger dd witnessing this. She’s going to also need lots of love and reassurance too.

@Weightlossworried
That’s great your dd has gained weight. The vomiting if that’s what she’s doing may be guilt. Did they explain the mechanism? Because if she eats an unusually large amount of food, ie a binge, this can trigger purging.

I was where you are, being held hostage by the ED for a good couple of years. For me, it’s because due to demand avoidance, dd would have followed through on not eating and gone downhill fast. And I needed to keep her well enough not to need hospital. So whenever I heard the words, ‘I just won’t eat then’, I was filled with fear. Whereas now, if she says that, I can just ignore it, because I know she will eat.

I would try being very nonchalant about it if she says she won’t eat.

I'm so sorry @Raspberrysins it sounds like a tough day.
I'm in the cocoon of hospital at the moment but fully expect scenes like these when we leave. It was similar before we came but without the knowledge that her heart was struggling!

Currently working my way through Eva Musby book which reminds you that these behaviours are due to fear and anxiety rather than a choice. I haven't yet got to the chapter about what level of this kind of behaviour to tolerate!!
I also relate about the younger sibling who just has to get on with it whilst all this is going on.

Tomorrow is a new day. Step away, have a cup of tea, and look after yourself.

I expect to be posting similar myself very soon!

@Weightlossworried Glad it went reasonably well and sounds like a good idea re. The bloods.

Thanks @Mummyoflittledragon

I am pretty sure that's exactly what DD will do; follow through on her threat of not eating. But maybe that's what has to happen. I have to let it play out. We're in purgatory at the moment, maybe I have to let it get worse to get better.

She definitely hasn't been binging in the way I'd think of it but I guess after restricting yourself to 500 calories a day, a normal amount of food must feel like a binge.

She's just eaten her normal amount of dinner. She tried to leave without dessert and I called her back. She ate it with a bit of slamming of doors first.

Hopefully she'll be a little happier tomorrow.

If it helps my dd now says she has no memory of most of the time she was really ill. She actually said ‘was I horrible to you when I was ill?’ I was like ‘umm you had your moments sweetheart but it’s fine I know it was the illness talking not you.’

At the height of the illness she was screaming she hated me and wanted me dead at every meal and snack time…