Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Have you got her red book from when she was a baby? It'll give you a rough idea from that.

Well done to those that attended the March 👏👏.

Curly, sorry to read what you’ve been going through. All sounds terribly stressful.

With school we just informed them that DD would be off for a length of time but we couldn’t confirm how long. They just accepted that. In the end DD was off just under 3 months and she went back at c78% WFH.

As others have said, I think it’s all so individual. DD was def still underweight (although she has always been slim & sporty) but she was so keen to return that CAMHS agreed that it was in her best interests - social, psychological etc.

It’s hard though because then we lost control in terms of the meal plan etc and she hasn’t really progressed since. In hindsight it might have been better to keep her off for longer to try and get higher WFH.

girlie, yes I do. But weight & height records in there stopped a long time ago. She was a bonny baby and toddler and started to slim out after 5/6.

Tomorrow, her meal plan will go up. She is already extremely stressed about it. Will see how that one goes and will have a chat with the team about the options of moving forward. But she will have to manage significantly more food before I will take her home. With the thread of the NG tube removed, I cannot see her playing ball.

At least she had all her meals so far today (with some hiccups - she hid the roast chicken in her knickers (🙈) when I took my eyes of her for a split second. But I body search and check the bed after every meal so I found it. I made her finish the chicken!

I think it's quite clear from all our different experiences that WFH is not a foolproof method for determining recovery!
CAMHS /ED teams may be happy at a certain wfh but if they then reduce support without making sure improvement is sustained its likely to lead to relapse.... (altho this can happen anyway).
Its important to understand that 100% WFH is actually the 50th percentile (not 100 percentile). It took me a while to get that!
My DD was always slim and tracked much lower than 50% for weight and height and she was very sporty.
She still had to get to 105% wfh (so over the 50th percentile) to fully recover.
I have learnt a lot more about fuelling sporty kids and its now obvious to me she hadn't eaten enough for a long while before the ED kicked in. Coupled with puberty and trying to grow it was a killer combo as soon as she started to cut back on food and do more exercise. She had no spare at all.
Since recovery she has stayed over 100% wfh and is so much better for it. She had anxiety and ocd when younger and these haven't come back since recovery. I actually think she flirted around being underweight for a long time.
Sometimes she looks a little heavy (in off season etc) but then she gets leaner (and hungrier!) in the main season.
I will never worry about her carrying a little extra ever again.

Hi everyone, have been a bit shattered today - I think the travelling and the emotional nature of the march took it out of me. Have you all seen Jeff Stelling (of Sky Sports Saturday) piece on EDs? It is clearly personal and very impactful - his status though as football pundit gave it huge cut through on social media.

It was so lovely to meet @NanFlanders and in a weird turn of events, our respective DH's work in the same field and know each other a little bit! I hope your DD's day out went well today Nan!

Curly well done for being alert to hiding food - I wasn't and once, in hospital, dd managed to stuff food up her sleeve whilst I was in the room and kept it there (undiscovered) even during an obs check from a nurse 😮

Lougle - lovely to see you and am pleased your DD is better physically although am sad her MH hasn't improved. I have seen you on other threads giving such generous counsel and advice and it was great to see your name on here again.

How is everyone else doing?

Keeping up with school in some way is a good thing. Coming out of hospital it is much harder to catch up. There are great resources on line and a lot of it is quite fun - maths games and vocabulary puzzles as well as video lessons.

What's the chances of that Myrtle and Nan?! Well done and thank you for being representatives for us all.

Lottsbiffandsmudge, interesting reading what you said about your DC. I have also wondered about whether I had somehow"starved" DC before her ED started. During lock down she wasn't able to sport as much, she shot up a lot in weight and height, filled up from being skinny, puberty started...social isolation, friendships breaking down, not as good in her sport, and all went downhill from there.

@myrtleWilson it’s good to see such positivity on this thread - despite the struggles that we are all going through. Here we are plodding along, food OK but mental health not great. Since DD’s diagnosis for the life of me I can’t sleep properly - does anyone have any tips?

Hope everyone’s day goes OK.

@D1ANA22

my sleep is horrendous too - I just cannot calm down and switch off.

I found these really help me. they make me sleepy after half an hour after taking it so I take them when I get ready for bed. Worth a shot?

www.savers.co.uk/Health-%26-Wellbeing/Vitamins-%26-Supplements/Sleep-%26-Relaxation/Kalms-One-A-Night-Tablets-21s/p/242153?gclid=CjwKCAjwgqejBhBAEiwAuWHioKCrGZOkxwoud3GMWCsOzEHfEYMtQBI34zEnwp6FrKBbCnQss63wCxoCzFYQAvD_BwE&gclsrc=aw.ds

@D1ANA22 I find I have to wear an eye mask now to even attempt sleep, otherwise my mind races when the tiniest glimmer of light creeps in.

Thank you for the recommendation, I will try both.

I think the link between being under weight and having mental health problems/anxiety is definitely an area that should be researched further.

I know when I was a teen and I lost a load of weight due to illness and then suffered with crippling anxiety for over a year it only improved after I gained weight.

Dd is doing okay at the moment, she's very loved up with her boyfriend which is definitely helping her mood! She's seemingly making some good choices, came in Ystd evening and helped herself to chocolate for example. She also got drunk on Sat night which in a weird way is nice to see as she's being a normal' teen!!

We're going to London next weekend with lots planned so I'm hoping she'll be able to eat okay to keep her fuelled up.

I love that two mnetters met in the wild 😁 and it's definitely a small world if your dhs vaguely knew each other!!

oh, and yes to the eye mask. I wear one too. the total darkness helps too.

Girliefriendlikespuppies That's so lovely to hear. Wonderful to see some 'normal' teen behaviour!

I've always had sleep issues long before dd got ill and now I have the wonderful perimenopause! I dont get hot flushes yet but (yet) always feel a bit too warm in bed so I've got a 4 tog quilt which is wonderful and just warm enough.

My friend gave me the tip of keeping my kindle under my pillow to whip out if my mind starts to race, set in very low light I find Donna Ashworth (poems) Anne Tyler and Maeve Binchy books really comforting. I often only need to read a few pages and my mind starts to settle.

I also swear by having warm milk and something carby before bed like a few crackers or some breadsticks.

I'm dreading it getting warmer at night and absolutely hate the hot summer nights.
I'm probably the only one who is very happy with the cool weather at the moment!

Thanks @BagpussSaggyOldClothCat - I wake too early and then start reading all around anorexia on my phone !!! (tbh I have been doing this for 18 months now). I also use my phone to listen to podcasts to send me to sleep (not the wave / rain sounds but boring chats). I fall to sleep very easily at night, but at 4am my mind is whirling again and I need something to make it stop. I tried reading books, but I woke DH who is a light sleeper so can't really do that.

Warm milk and crackers tonight then.

@Girliefriendlikespuppies I read your post and found it very uplifting - have a great time in London. Can I ask, when your DD went to sixth form college did you liaise with pastoral care about her ED and if so what (if anything) did they offer that was useful?

Hello all, it's been a while.

We're knee deep in GSCEs and lots of complications with my parents (one with Parkinsons, other with dementia). It's a terrible thing to admit, but I really resent segueing from caring for DD to having to deal with my parents. It brings on a similar sense of pure helplessness, guilt, a sense that whatever you're doing it's not enough. I'm not even doing the hands on care and I feel overburdened. Not that I could do the hands-on care given that my father needs it 24/7 now. I just feel that my sense of self is getting further and further eroded as has any hope that I can return to do interesting work.

A sorry-you're-here welcome to new people and I hope you find this board as invaluable as I did.

On a positive note, DD seems to be doing really well. I'm very watchful but she seems to be eating fine. She's remarkably unstressed about the exams, I think she's just reached the point of boredom with the whole thing.

For those who don't know her story: she started dieting in lockdown, lost weight, was diagnosed with anorexia a month after 14th birthday, had a terrible terrible 15 months and then somewhat miraculously something switched and she's been really good since last summer.

She missed loads of school but she managed to pull it back and now she's excited/scared about going to a big bustling sixth form so long as she gets the grades. I can't believe we've got here.

In answer to previous questions about WFH, I'm a big believer that what really matters is the intake rather than the actual weight. When she wasn't eating enough, it was terrible. When she ate enough, even if her weight was still low, she got her periods and her mental state improved. I've no idea what she weighs now but I'd be surprised if it was over 90%. For her, that works. For others it wouldn't.

Valleyofthedollymix I'm so sorry about your parents. My PIL are needing a lot of care right now. Dh takes on a the bulk of it. It's exhausting and it's not just the illness issues and the appointments, it's dealing with their finances, house maintenance, pets.. the list never ends!

So glad to hear your dd is doing well. If she's happily sitting her GCSE'S then her brain must be in a good state! Having future plans and being excited for them is such a good sign and is such a good motivivator to keep going 💪

D1 I did mention to dds tutor that she had an eating disorder but tbh the college haven't been very useful. It feels very much out of my hands now, if dd wants support she has to be the one to ask for it.

Re sleep I find lavender oil works well, I wake up at 4am go for a wee and then douse myself in lavender oil to get back to sleep 😂

Nice to hear from you valley, that's great your dd is doing well and hope the exams go well. Sorry to hear that both your parents need support though, that's rough and I can understand why you feel fed up.

Hi
In case you've not seen Hadley F is doing an AMA on MN tomorrow night - details on chat homepage - just sharing so we can post questions or you know to avoid if too difficult to deal with right no

I did get a lot out of the Hadley Freeman book. It's inevitably narrow view of anorexia but one that happens to coincide with our experience (very underweight, perfectionist, clever, awkward girl). I have lots of questions in my head for her but they're quite niche so I don't know whether I'd fling them at her on a public forum.

Like for example, I disagree that anorexia is characterised by being severely underweight. Or with her assertion that all mothers blame themselves for their DD's anorexia. I don't! I blame myself for not doing something sooner but I don't think it was my fault.

Anyway, will read with interest.

Thanks for sympathy re. elderly parents. You're on the nail Bagpuss, the admin list is endless and I feel that I'm constantly searching for solutions that don't exist.

PS part of my resentment about doing all this elderly care stems from the fact that my parents were utterly indifferent about DD's illness. Complete refusal to even acknowledge it.

Just checking back in. We had some up and down days in hospital but DD is eating the mealplan now. No NG tube so far. She is still losing a tiny bit of weight but we are not on the final plan yet.

Feeling a bit more hopeful now. She is in different place to last week when she got admitted. We also doubled the olanzapine which I think may be working too. Still nowhere near discharge but we take every eaten meal as a win.

I am feeling a bit better in myself too but I am very tired. I find it all, esp in combination with working from the ward and caring for DD1 in the afternoons/evenings very hard but I think I can cope a few weeks longer.

Hope everyone else is ok.

@Valleyofthedollymix I understand the caring responsibility bit. Not easy at all.

@Curlyhairedassasin that sounds like progress!

Curly, your update sounds very promising. I hope the meds + nutrition get your dd into a better headspace very soon. I hope you're feeling better now. Is dh being supportive?

Things are quiet here. We are stuck. The days go by and nothing changes. We usually have a holiday or something to look forward to but nothing all planned. Dd hasn't been weighed this month but her clothes look ok and her colour looks good. She is still just eating the same meals over and over but I managed to get her to eat a different type of curry which she liked and said 'This is my new favourite dinner!' I could have cried.

She says her life is boring and she thinks she'll have to sit in her room forever, never go to uni, have a job, travel or someone to love her. I know from past experience to just let her talk as most things I try to suggest end up thrown back at me. She needs find the will to push herself doesn't she? I just don't know how to help her with that.