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

@Eyelashesoffire that's great to hear! Well done and keep pushing those calories. I don't know about relapses as we're still v early (6 months or so) into all this. I fully expect difficulties when the time comes for DD to have more control. I just wanted to share that DD is now around 100% WFH, the heaviest she's ever been, and last night she said to me "i really like the way i look, i think i look good". It was amazing to hear that, i nearly cried.

@GrannyRoberts 🥳that's amazing, I'm so happy for you. That must be the most welcome words you've heard in a long time!!

@Girliefriendlikespuppies thanks, yes handing back control is a terrifying thought. She's desperate to have unsupervised lunches but I just can't see how it will be successful. Are your DD:s lunches unsupervised or do school support?

When unsupervised lunches start back up, I was thinking of ignoring any calories that may or may not go in and just giving a huge snack when she's back from school. But then will she stop eating lunches because she's getting enough food so I'm sabotaging progress? I can't think straight!

@Eyelashesoffire well done on 94%, it's so nice to see bits of your child coming back. I saw some photos the other day and ds looked so unwell it was really upsetting. Onwards and upwards!
@GrannyRoberts I've had a few tears for you, very well done to your daughter and you for fighting this.
We've had full on belly laughs almost every night this week, I feel like recording it, it's a sound I missed but didn't realise. We're about 94%wfh and although meals are calmer we're getting a lot of push back. I'm hoping this is the extinction burst and that's keeping me going, I will win

@GrannyRoberts That is amazing.

We are going down at the moment again. Lost half a kg at the last weigh in.

We had literally zero progress since July - weight wise and headwise. DD was crying the other day telling me there is too much fat on her body and she needs to run it off - she wants to join a running club now. we are just at 89/90%WFH and have been for the last half year. I am really getting disheartened :(

@Proseccoismyfriend so lovely to hear them laugh again, isn't it! Sometimes you're so deep in surviving everyday you don't / can't stop to notice what's missing. I share your determination in beating this illness, I think it's so helpful for our DC to have that steadfastness. (Is that a word?!) Once DD said it would never end and I shouted YES IT WILL, WE'RE GOING TO BEAT THIS. This ED is going to be sorry it tried to mess with me. Sounds a bit of a crazy moment but I could see she needed someone to stand firm and believe in her.

@Curlyhairedassasin oh I really feel for you. It's so hard to keep going. I feel like we stalled for a similar period weight wise. I didn't properly realise the bigger trends until I saw her chart because her weight was bobbing around and there was a lot of hoohah around extra clothes and water loading in the weigh ins. I was so disheartened. Looking back and trying to see some positives, I suppose we were working out which strategies didn't work, building up our relationship, I took some time off work to recharge my own battery. What do you think might help you right now? Are your ED team supportive? Obviously we're always here when you need to vent.

Dd went to a party at the weekend and had quite a lot of alcohol, which I was guiltily thrilled about as lots of CALS but obviously she has been compensating for it since🙄
She's leaving some of her food and I hear her pacing her room. She's just about getting enough cals daily to maintain as I'm shoving in as much fat as I can to keep her going.

It's hard to feel anything other than 'meh' about Christmas. I'm insanely jealous of families who can just have normal meals and enjoy treats together. I used to love doing the Christmas supermarket shop but now it's depressing as I see all dd's old favourites that I know she won't touch.

I can't quite believe this is our third Christmas ruled by ED 😥

@Eyelashesoffire Not sure what would help. ED appointments are basically weigh ins and a chat but no real help. I think I need to challenge her more but I am totally worn down. my other child has severe learning difficulties and ASD and I also work 5 days a week. My batteries are just empty and I focus on keeping everything ticking over without pushing anyone's buttons. I really think giving up work for a bit would do me a world of good but that's not possible. Dreading Xmas. DH is going away to visit family abroad so I am alone with both DDs who don't get on at all - it's dreadful. But it's encouraging to hear that others had similar in terms of stall. We also have the water loading at the moments before appointments. I am not really sure what he'd real weight is as she is so sneaky with drinking before.

I feel the same, bagpuss I am green with envy of other families who can have a normal Xmas. It's our 2nd and eating is worse than a year ago. Having a 3rd must be really hard! On the upside, we are alone and I don't have to host and cook. Silver linings and all that!

@Eyelashesoffire yes! There have been several times I've said this disorder has picked the wrong mother 😂
I'm sorry @Curlyhairedassasin I'm not surprised you're so worn out. I'm not 100% sure but I wonder if the ed does need to be challenged more. That's the only time we started seeing any progress was to rattle it, it's been so tough though and there were several times I so desperately wanted to quit. I couldn't have carried on working at the same time though, the break was what I needed to find the fight.

@Proseccoismyfriend I think you are totally right. I know I don't challenge enough. It's my fault (in a way). DH decided he is done with the ED stuff and withdrew all support. so meal support and appointments are all my sole responsibility. I should really do more. I am off work for a week over Xmas. I hope I can muster up some strength to force things a bit more. With DD being off school this may be a good time. plus DH will be going on holiday so we won't be on each other's throats when things kick off.

@Curlyhairedassasin it really does sound tough for you. I'm starting to realise we've been lucky with our CAMHS team, they've been great at helping us to set boundaries and maintain them. However, I know that I couldn't have pushed forward and challenged anything without the time off work. 2 people I don't know especially well could see how stretched I was (and weirdly my lovely podiatrist!), they persuaded me to call in sick. They almost gave me permission. Honestly I would say something has to give, it really really can't be your mental health. My CAMHS team said at some point they always have the conversation with parents, which one is stopping work, which was quite sobering to hear. But ultimately helpful.

I mean which parent is stopping work

Oh @Curlyhairedassasin I'm so angry on your behalf at the lack of support you're getting. We haven't been good at challenging the ED either, but I have become very sneaky about adding fats wherever I can and I make that my "up yours" to the ED. I know it's hard with your DD as she doesn't eat home cooked food. So many suggestions around 1,000 calorie smoothies and giving puddings etc seemed completely out of reach to me. Then someone on here had mentioned adding double cream to milk as a good way of upping the calories. I was sceptical as my DD is pretty sensitive to changes in taste and texture, but I started with a tsp in a glass and have increased it now such that I add a 400ml tub to each 2 litre milk carton. She hasn't noticed. I've heard so many people say that fat is needed for brain healing, and I have noticed (possibly coincidentally, possibly not) that her mood is much better since I started packing in the fats. I've also upped calories generally with maxijul in OJ and cheese toasties which are basically fried in butter...

@GrannyRoberts Thanks you. DD will not have smoothies or anything home made so all these options aren't for us but will try your cream adder:

Do you add it just before pouring the milk or does it blend in well into the milk if I add it to the big bottle and give it a shake? What's the best method of conceiling it?

@Eyelashesoffire the team have suggested it a few times going off sick or stopping work but I really cannot it. and I have a lot of work place issues (so bad that it may go to an employment tribunal - currently waiting for a legal merit assessment through my union) but I am absolutely not in a position to take sick leave. neither financially nor in practical terms because of the things I am dealing with at work. I need to sit that out.

@Curlyhairedassasin it mixes in really well. I add it to the big carton in a oner and give it a good shake. It doesn't seem to separate out after that. At first I bought a small (1 pint) carton and added just a few tsp to that, built it up slowly. She hasn't said anything, and she definitely would! The only thing is it clings slightly more to the side of the glass, although my DD hasn't noticed that, I tend to serve in a mug so avoid that.

Thanks granny, will get some and try that. she has milk out of a mug so should hopefully work 🤞

Good luck @Curlyhairedassasin, start small and hopefully you'll get away with it!

@Curlyhairedassasin you've got a lot on your plate, hope you can recharge your batteries over Christmas.

@GrannyRoberts did you get the maxijul on prescription?

@Eyelashesoffire I bought it on Amazon but it is quite expensive. I'm using up what I have but not sure I'll buy it again as I've since discovered double cream in milk which is easier, cheaper and much more calorie dense.

I don't always challenge the ed, sometimes I just don't have the energy as it's not like it's one meal it can be several and come dinner time I'm usually in no mood! Due to the arfid side we struggle to pack in calories so the shakes from the clinic have been great for us, they sold it to ds as medicine and he needs it x4 a day similar to an antibiotic, they're 125ml so just a few sips and 300 calories each. Once you find something that works and you start to see progress and improvement I feel that gives you the boost to get going. I'm sorry your DH has checked out and isn't supporting you through the ed too, I sometimes count down the hours till mine is home to help and take over so you really must be on your knees. Your amazing to carry this alone and I'm sure once your dd comes out the other side she'll appreciate you so much more 💗

Hey everyone,

Gosh, it's great to hear how well things are going, it's so lovely to hear the progress. Granny - I had a little tear about your dd saying she feels comfortable in her body - amazing! And Prosecco - wow that's brilliant progress, so great to hear about the belly laughs, and the weight progress, but the belly laughs are almost better!

@Curlyhairedassasin - sorry things have stalled. That's a great idea about the cream and milk, I'm going to keep that in mind too. It's so hard to keep up the momentum with this, and I don't have other children with equally important and potentially complex stuff going on like your other dd. Do you think your dh will ever change his mind about supporting you to go a bit more full on with the ed? It feels like such a big ask for you to do it by yourself, as well as working any everything else.

I don't even know how to summarise how we are - everything feels really bitty. Dd is now about 101%, which I know is good. Her hair has stopped falling out, which I'm also really glad about. I had a bit of an irrational fear about alopecia, my friend had it and it was hard for her as a grown woman who didn't have an ed, but I think it's ok for dd.

We have not really seen a huge amount of progress with 'state' yet, there have been some awful awful humdingers over the last couple of weeks. We are back to her yelling to fuck off in my face. I feel like one of those cartoons where I look like I'm in a hurricane or something 😂 so we are keeping on adding weight, but I am so tired of it all.

I'm struggling with my mood again, I'm back to bursting into tears at the drop of a hat, and I ended up bringing my Xmas hols forward because I felt like I was going to lose my mind a bit with all of the pre holidays rush at work, and the screaming in my face at home. I'm doing the usual prep for Christmas, but I cannot wait for it to be over, and that's not like me. I feel so bad for my other kids, but I just can't face the usual stuff. Hoping a break over Christmas helps me stabilise my mood a bit, a bit of sleep can't hurt.

You're all on my mind over the next few days, hope it goes as well as it can. X

Just wanted to say thanks to @Whippetlovely as I guess your post was for me. I feel like we’ve just been told to bugger off and crack on. Will see what she’s doing at next weigh in (in January at GP). It’s hard because we both work in public services so no time off at all over Christmas, and she’s going to need to fend for herself to a degree over the holidays. I imagine she will lose, I know her sister will nibble on things if I make sure there’s chocolate/pretzels/candy canes out before I go to work but DD2 just isn’t interested. She will plug herself into her headphones and just stay there all day.

DH is able to work at home until Jan but his job is extremely stressful so he just lets the girls get on and expects them to manage their own meals - if I was at home I’d be pushing 3+3 but he thinks if we’re not under ED team then it’s fine to go with the flow.

Our health is suffering too - his BP is through the roof and he’s had to start meds this week, and a random blood glucose I had was ridiculous so I’m having screening later. Guess it will be a family bonding experience eventually!

Sorry you’re struggling with mood @greydoor but excellent news about the weight!

@Curlyhairedassasin was thinking about you in the wee small hours. I wondered whether it may be worth looking into beat? They do some really good workshops and I thought about compass and whether this might help. I think it's 1:1 - the lack of support you've had is shocking but this may be a good space for you to talk things through. I havent done compass but I found raising resilience and "coping with christmas" very helpful https://www.beateatingdisorders.org.uk/get-information-and-support/support-someone-else/Compass-carers-coaching-support/