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

Thanks @Curlyhairedassasin I am not comfortable with this second sleepover at all. Last night the sleepover host mum (a good friend of mine) brought her home for dinner, so grateful for that.

Tonight she would eat before she goes, and have breakfast when she gets back in the morning, so technically meal times are still protected.

But I have experience with lack of sleep affecting mental health so I'm hesitating. But also FOMO affects mental health!

I read up thread somewhere that restricting activities will make them bored and want recovery more which makes sense. But I also see that seeing her friends is useful, like a carrot to eating more. So hard!

But as you said, it was a big drop in weight so we have to get stricter. It's a lesson to me in living more in the moment, I'm literally living meal to meal.

My dd is 17 so at the age where there are 18th birthday parties and sleepovers that involve alcohol which she tends to avoid, which I'm sure is because alcohol = calories.

In a way it's a relief that she's not out too much and we can stick to routine, but I'm sad she's missing out on social situations.

DD17 is at new college and moans when we don't allow her to sleepover (she has only just met these new friends who all seem to live miles from our house) - I pick up at midnight and usually DD is ready to come home then. I don't think they drink - they all seem very introvert. She doesn't miss out and we then know she has breakfast next day. She is going to a party at 6pm today - this messes with dinner time! I will try to get her to eat something before she goes. Like @Eyelashesoffire says, I am still living meal by meal 2 years since diagnosis and 9 months since discharge from the ED service, it is exhausting. DH has stepped back a little and is calmer - I must seem neurotic to him and DD about meals and I hope this doesn't project on to DD's anxieties.

@Eyelashesoffire how old is your DD?
Tbh with such a big drop in 3 weeks I would be pulling back on the activity.
If she wants to go to these events she needs to eat more.
What does her meal plan look like? How much is she eating of it?
Her social life is your leverage. I agree that social contact is good for MH but if she isn't eating enough and losing weight those benefits are more or less lost. If she was steadily gaining it might be different.
The -'life stops until you eat' is one method used to get food in. I am not saying it works for all. The ED will be taking full advantage of her being out of the house, have no doubt. Sleeping through meals and snacks is also a no no. She needs to eat regularly to help with recovery.
I would also caution anyone seeking a ASD diagnosis whilst in the grip of an ED. If those behaviours were not there before lts likely the ED. All my DDs ocd and poss ASD behaviours resolved once she was weight restored.
I don't have experience of treating someone who was already diagnosed before the ED.

@Lottsbiffandsmudge she's 14. She was looking very rigid in her thoughts well before the ED, the start of secondary school started the downhill slope of her MH.

Her meal plan on home days is dry cereal and pain au chocolate for breakfast, cereal /choc bar snack, lunch is pizza today with cake, dinner pasta and tiramisu. We probably need to up the snacks, she snacks a lot on rice cakes and fruit, which I don't think count for much. School days we send in some junk food lunch but she's obviously not been eating it. At home she eats the majority of what she's given bar the usual pouching the last mouthful of food to spit out, spilling some on the floor. It's mostly going in. I check her mouth after every meal.

I'll have to wake her up for lunch so her social life cannot interfere with meals. She's getting weighed this afternoon so we'll have to make a decision then.

It's a big wake up call hearing @Nomoreplease23 say you've been discharged and you're still having to monitor every meal. I'm not sure how you maintain this level of vigilance over such a long term.

@Eyelashesoffire I hope I haven't worried you with regards to my continued hyper vigilance of DD two years in to recovery. Tbh I probably don't have to be vigilant meal by meal - but my anxiety is so high I still work at crisis mode which is probably not fair on DD and does wear me out. I am mentally stuck in the early days of DD's illness when I followed everything she ate whereas DH has moved on with DD as she moved through the phases of recovery. I think my reaction is PTSD.

Could you please put on the link for this?

For the weight for height calculator?

@mirabella84
I don't have the link. I downloaded it ages ago and just ran some numbers of Prosecco

Okay thank you.

@mirabella84
For weight for height if you use the NHS BMI calculator and put some figures in until you get 50th centile that will be your 100% wfh.
Then calculate the actual weight as a percentage of that.
Hopefully that makes sense..!

@Nomoreplease23 I can totally imagine being stuck in crisis mode, it's such a draining, traumatic situation. I can recommend EMDR as a trauma therapy, pm me if you want to know more, so I won't have to bang on about it here!

In today's good news, the weigh in came in at 89 WFH, thank goodness! She was 91 before so just a bit more to go to overcome the blip.

She's asleep now after a good lunch. She was determined to go to the second sleepover, but it'll have to be dinner first. I'm hoping she'll just keep sleeping 😴

Hi everyone,
It is understandable to stay in crisis mode. I know when Dd was in recovery and then relapsed I had lost my 'battle rhythm' if that makes sense and it seemed to take more out of me to respond and be 'on it'. However, as I've shared on here before, Dd forced us to try to move out of crisis by legitimately asking how she could move into 'not having an ED' if we always treated her as having the Dd. She explained that it meant (to her) we were seeing her as "Jessica with anorexia" rather than just "Jessica" (not her real name). That hit home so we had to fake it will we made it. Not saying its not difficult - its damn hard but it felt right (if scary) to be respecting her route of recovery.

I also wanted to share some news. I started the first of these threads in the summer of 2020 as Dd (then 17) was admitted to hospital at her first CAMHS appointment. As some of you will know Dd wasn't able to stay at school and missed her a-levels and the path we assumed was mapped out for her (ha bloody ha said anorexia). Dd has been in recovery and has reshaped her relationship with her body through weight training. For the last two years she's worked (part time) in hospitality and now retail. Work was important to her as having expanse of time with no structure was a goldmine for her anxiety.

She's gained from being work and yet didn't see a long term career future in either sector and wanted to do something which gave her new challenges and today she was successful in getting a job in a new sector, with tonnes more autonomy and an opportunity to feel she's making a difference. Its in the voluntary sector and opens up new future options in terms of transferable skills etc

I'm beyond proud of her and what she's done to get to today and now to think positively about the future, not only maintaining ED recovery but a path that now is beginning to feel adjacent to the one we blithely imagined pre GCSEs rather than continents apart.

I know how dark the darkness can get living with this illness and I know how much these threads supported me. I'll still pop my head round the door now and then but now I'm hopeful to see thread 1-10 as our journey (paraphrasing BuzzLightyear) 'to recovery and beyond!'

@myrtleWilson I'm so pleased for your daughter and your family. Hearing positive things and knowing recovery is possible keeps me going ❤️

Oh @myrtleWilson how wonderful to hear your update.
And many congratulations to your DD on her new role..

@myrtleWilson

that's fantastic news, well done to your dd, thanks for sharing!

@myrtleWilson you must be so proud of her. It must have been so scary to let her 'test the waters' but look at her now. Thank you so much for sharing

@myrtleWilson I'm so pleased for you and your family, such uplifting news! Congratulations to your DD on her new job. It's really great to hear about recovery and hear about a positive future.

@myrtleWilson so happy for your daughter, and for you! Thank you for sharing. Stories of hope really help in getting through some of the darkest days.

We have our 2nd community CAMHS app today including weigh in. I'm quite nervous about it as this has been our first full week out of hospital and I'm worried she may have lost. She's been eating pretty much everything on her meal plan but she's definitely had a more active week with cousins visiting and a school disco which she waa desperate to go to. At 97% WFH I think it's OK that she's had more activity and we do obviously have some wriggle room now but if she's lost and the meal plan needs to increase I know it's going to be a huge fight.

@myrtleWilson Thank you for the update. It's always so encouraging to hear these stories of recovery. You must be so proud of her!

@myrtleWilson such good news. I personally owe you so much for creating this thread, from which I have extracted so much advice, knowledge, real life experiences and of course the support from everyone.

I need some more advice; DD17 eats all types of food, three meals a day with some snacks in between (not as routine as when we were going through phase one FBT) - however she has a habit of leaving say a small bite of a burger or a few fries on her plate and rarely clears her plate. My understanding is that this is a 'peace' offering to her ED voice. She (rarely) may complete the whole plate but always completes her bowl of cereal - the question is how do I approach her about this. She is stubborn (like all our DC's dealing with their ED) - but at 17 I feel I have to take a different approach to how I dealt with the 14 year old where we had more control and we were at 'life stops until you eat'. I am wary about 'negotiating' with the ED (we still get 'I am full', 'I don't like that' for some meals).

I appreciate all your thoughts, advice and comments.

@Nomoreplease23 hi I don't have any advice as we're nowhere near that stage but DD always leaves one bite on the plate. Well usually 2/3 bites - I can encourage her to eat those last couple but she stops resolutely at that last bite. It's so interesting to hear the similarities, like they have a manual!! Weirdly my granny always did this.

So yesterday was horrendous, definitely No.More.Sleepovers. She was exhausted and wanted to go to sleep at 7pm but she hadn't eaten dinner. It was the worst meal so far, crying so much, saying she was so full she felt sick. I couldn't have done it on my own, DH distracted her talking about her dolls (current collecting passion) and she finally ate barely half a dinner but managed a small dessert. Despite the horror, we managed to get about 2000 calories in her yesterday. Getting out of routine is a genuine disaster. Thankfully she said she didn't want to go to the second sleepover. She couldn't have gone realistically but very hard to get her to accept that from us.

I have dreams about fighting and shooting people that have hijacked buses- obviously the battle with the ED is being processed in my dreams!

I have a question for everyone, who have you told? I haven't told a huge number of people, though the people I have told have been very supportive. I think there's a stigma around the causes (parenting style, mum dieting etc.) and I don't have the brain space for other people's judgement.

@eyelashes I have told a minimal number of people. Initially it was because DD was sitting in total denial so very much against what she wanted. However with time I have chosen a few friends who know how to be practicality supportive as well as emotionally (one gorgeous friend takes my younger DD when she needs some time away from the drama at home)
It has definitely made me re think some friendships because this kind of realness is not for everyone but I think that is not such a terrible thing. I focus on the brilliant friends who get that some days I want to vent and sometimes I need to escape.

@Eyelashesoffire and my dreams are wild too...I was locked in a room in my dream last night that I couldn't escape :( and I am massively night grinding