teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

@Tr1skel1on - how are you doing?

We've started a conversation here about school... DD is in Yr13 and becoming more clear that she won't be well enough to sit her A-levels' this year. She's only been in school for about 6 lessons this year.

We initially looked at her retaking yr 13 next year but timetabling at school isn't looking favourable for her 3 A-levels. She could take one this year and one of her existing next year with another a-level taught in one year. But this seems risky - what if she doesn't do as well as she could do this year, could she manage a whole new A-level in a year.... Soooooo, we're thinking about resisting the whole of 6th form - it seems the 'best' option in terms of giving her the time she needs to get healthy and the 'best' option in terms of keeping as many post school options on the table... But it will mean she leaves school at 20 and will have to fit in with a group two years younger than her (on the upside she'll no doubt be very popular as will have ID to buy alcohol to take to parties ). In the grand scheme of things when she's 40, this will not matter but it seems so unfair that her 'expected' life pattern isn't panning out - obviously I'd rather have a healthy DD rather than an ill one following the 'normal' route - but I think its okay to feel a bit of a pang of loss for her..

to her credit, she's gone from 'thats not happening' on Thursday when we had the chat with school to much more reflective understanding of benefits by Sunday

Plus she was stoked to hear from head of yr that one of her teachers described her as one of the strongest pupils he'd ever taught that particular a-level

Day I think you handled the dinner table drama fine, it was not about you eating loudly it was about your dd not wanting to eat and that was the best excuse she could come up with at that moment! I agree the care/support you've been given has been shit. I'd complain to PALs personally, can you also moan to dds GP as they might have a bit of power to try and improve things.

We've had a mixed wend, we stayed at my mums last night (we're in a bubble with my mum) and dd did well with eating all day. She had asked me about going for a run today and I told her I'd think about it.

In the end I said she could do a short run if she agreed to eat more to make up the extra calories being burnt. She did have a proper breakfast of scrambled eggs and toast and had her snack when she got home but then refused her lunch.

I was so fed up as feel like the ED just lies and breaks promises all the time. As a consequence of not eating her lunch we didn't do a trip we'd planned this afternoon but dd didn't care.

She did have a slightly bigger afternoon snack and ate the rest of the day as normal but clearly has not eaten additional calories which was what had been agreed.

Oh well not ready for running then. I should have known that really

Thank you all for the lovely welcome. Weekend went ok ISH, spent most of it arguing with dd about how big a teaspoon of butter was while trying to follow the meal plan.

She is back in school part time tomorrow. I hope full time school soon. I'm on an island not mainland UK so covid free at the moment luckily, but also zero provision for online school.

I hope everyone else is doing ok. It's so hard.

Thank goodness I found this thread. I relate to so much and we’re just at the beginning!
My dd is 16 - 17 on Wednesday! And she is basically disappearing before my eyes. She has ASD and anxiety but recently started college and seemed to be doing well. She’s always been very thin but used to enjoy food like pizza and noodles and I was never worried about her weight.
It’s scary how quickly things changed. People at college commented positively about how skinny she was etc and that’s lead to her cutting down on food to now when she’s doing 1000 jumping jacks a day and eating about 400 calories if that.
I made her get weighed last week and she was 41kg which puts her BMI at between 14-15. The GP I spoke to has referred her urgently to dietetics and she’s getting bloods taken on Wednesday.
I’m now scared this isn’t quick enough although I know if her bloods are bad things may escalate. I’m actually a biochemistry blood scientist in a hospital so obviously the first thing I wanted checking was her electrolytes!
She thinks she’s chubby. She doesn’t really want help and I can’t imagine that anyone telling her what to eat will help. She just won’t do it. Will she get counselling? Camhs have just sent us a letter saying they can’t offer her any support at this time due to covid although that was before they knew about this.
I’m completely broken. I’ve spent the last 5 years working with her on self esteem and dealing with shitty counsellors and therapists who said they couldn’t help when she went selectively mute for example...
I can’t cope if I have to fight again. Don’t know if I’ve got anything left. My marriage didn’t survive her original suicide attempts and depression and we have 2 beautiful girls who are 9 and 10 and I can’t bear that they are seeing this.
My ex is very supportive but he doesn’t understand teenage girls and mental illness at all (hence the split) so I know I’ll be doing it all myself whilst trying to work shifts.
Sorry that was self indulgent.
I’m so pleased to have found you all. You have no idea how lonely I felt until I read your posts.

Thank you day! She was diagnosed with ASD when she was 14 following a lengthy battle with schools due to her refusal and me telling them she wasn’t naughty just bloody terrified!
She has body dysmorphia, no body will help, she’s been failed so many times. Initially saw camhs aged 11 when she was told she could choose to be sad or choose to be happy and depression doesn’t exist in children. These conversations only made her more scared and anxious and she didn’t speak for over a year.

All the while I’m fighting with the authorities who want to prosecute me for her non-attendance at school and I just want her to have some kind of education!
I ended up de registering her and paying for a tutor. I also found a wonderful charity that did work with her and for the past 2 years I’ve been building her back up. She was doing ok but college seems to have been a massive trigger and now this has happened and it’s so quick and so scary.
Like you, my dd was always resistant and uncooperative so we didn’t get a lot of the assessments early on when she refused to speak. It’s so hard when you’re fighting for help and they push against you and you feel like everyone is against you so what’s the point!?

Hi and welcome, bellabluea

Dd1 was diagnosed with ASD at 11 - she's 17 now and still in denial about it (though can quote chapter and verse on all the latest research into it, so has obviously spent a LOT of time Googling it) She is also very oppositional so you just can't tell her what to do, no matter how persuasively you explain But she really liked having an eating plan, once she got used to the idea - the certainty and predictability of it made her feel safe, I think

I'm quite shocked at CAMHS telling your dd at age 11 that children can't be depressed and it's a choice! Dd1 first presented with eating issues and depression at 10 - she was very sensitively dealt with and saw a lovely paed nurse at the local hospital for counselling None of this 'pull your socks up' crap

I'm increasingly thinking I'm v lucky with my local CAMHS and ED service

Sorry to hear your dd is back in hospital DayB1Day and, as always, sending all the very best thoughts for you and her Dd1 used to do the thing about complaining she couldn't bear the sound of our chewing (plus she couldn't sit at the same table with non-vegans, couldn't cope with dinner table chat, hated the smell of x y z etc etc etc) Nothing to do with any of it, really, just pure anorexia talking

Girliefriend, dd2 is always trying to get me to exchange concessions - 'I'll eat this if I can do x' but I've stopped all those negotiations now as she was constantly abusing my trust She knows she isn't going for a run until she makes 90% of healthy body weight, and that's that

Weigh-in today and she is desperate to get back to full-time school, so fingers crossed, although I'm not sure she's kept to the plan enough to make it this week

That’s great day!
So true! One day they’re doing so well and the next it can feel like they’re never going to get better.
I picked dd up from college and took her into the little shop, persuaded her to get a small packet of chicken. I hope she eats it. I’m on nightshift tonight but I’ll try and make her have it before I go. It’s like 180 cals but she said it was too much. She hasn’t eaten today at all.
I don’t think she quite grasps the seriousness of it. She’s now down to 40kg - she thinks there’s loads of people skinnier than her at college but I don’t know where because I haven’t seen any!
Ugh.
At least I can go to work and think about something else for a while.

Thats great @DayB1Day - am so pleased you've had a good day! Bank that feeling to draw upon when you need.

@Bellabluea welcome along but sorry you need to be here. I hope your DD gets the therapy that some of us on the thread have been getting - albeit for poor Day it has taken a while. Like theyseeher I think I'm lucky with the services we're getting from the ED team at CAMHS.

I said something upthread and I'll say it again but it is brutal, so apologies.- The anorexia or bulimia or what ever eating disorder has an end game... It wants our DC dead, whether that is through starvation, organ failure, coma through refeeding or suicide - the anorexia (in our situation) doesn't care.

It helped us (with support) get DD to refer to the anorexia as an entity outside of her, CAMHS ask DD how noisy the anorexia is and where she (DD has decided the anorexia is female) is - in DD's head, on her shoulder, on the other side of the room etc.? The aim is to try and keep the anorexia quiet and as far away as possible.

I found this really useful as I can differentiate between "her" and " you" when talking to DD. As much as DD thinks the anorexia is on her side, we keep pointing out how much its not - it is limiting her life, it is shutting down her world and ultimately I love DD more than the anorexia hates her.

When DH told me of the anorexia's end game it broke me (I knew it but didn't want to admit it) but actually in a perverse way it has given me better clarity - I won't give in to the anorexia's games and game playing as I know what it wants.

@TheySeeHerRowling how did weigh in go today?

As ever, sending strength and support to all those reading with us.

Welcome Bella how tall is your dd? 40kgs does sound very light, my dd is 52.8kg at 5ft 6in and still very under weight. I think I'd push the GP to do an urgent ref to the CAMHs eating disorder service, in our area they have to see referrals within two weeks.

Has the GP checked her pulse, BP and bloods?

If she is only eating 400 calories a day I imagine she may end up needing admission to hospital to start the refeeding.

As always I can really recommend the Eva Musby book who gives a comprehensive guide to tackling the Anorexia. The basic premise is that you the parent have to make all the food decisions and the child gets no say in what is put in front of them. You have to brace yourself for everything the anorexia will throw at you and it will throw everything (including the food!) at you!!

The parents job is to stay calm and empathetic but firm and not back down.

It's really telling that so many of our girls have ASD, I think the black and white thinking, tendency to obsess and general low self esteem create a perfect storm for EDs to flourish.

My dd (14yo) is on the ASD diagnosis pathway and we've been told she is likely to get a diagnosis by the end of this year.

Day my dd said very little during the initial consultation accept to say she didn't understand why we were so worried 🙄 once they told her what was going to happen she panicked and went straight into negotiation mode but they were having none of it.

She cried and sobbed and wouldn't speak or look at me on the way home, when we got home she refused to get out of the car! She eventually after about an hour came out of the car and went straight to her bedroom.

I think as much as anything for dd it was the thought that her routine was going to have to change that upset her.

My dd is around 5’5/ 5’6 so 40kg is very tiny.
She’s at GP on Wednesday for bloods so I’ll ask for BP then.
Dd never used to speak much during therapy but she’s very vocal now and by the end of things would get quite assertive especially when the school team would criticise me for not being able to get her to school
She’s very articulate and bright. Plus she has the sarcasm and wit that many ASD girls have. We had a horrific relationship for a few years when I genuinely didn’t like her because she was so vile and awful to me. Now she’s like a different girl! She’s 17 on Wednesday and we have an amazing relationship, I fear she’ll always have struggles but she just needs to develop coping strategies.
Girlie - my dd thinks I’m completely over reacting. Keeps asking why I’m so worried and thinks she’s fine.
Just waiting for this bloody appt now. ‘Urgent referral’, anyone know how long I expect to wait?

Yeah def the wit and sarcasm sound familiar here as well! My dd has been awful to me throughout the refeeding which is sad as generally we used to get on okay. I think of the ED as a separate person to dd though which makes me more determined to beat it!!

Blue I'm pretty sure you're dd will end up getting admitted at that weight, have you checked her pulse? My dds was 40 bpm at 50kg and they said if it went under 40 she'd have been admitted...

You might want to think about work as all family therapy will rely on you being around to ensure your dd eats. I also think they'll tell your dd she's too unwell for college - sorry 😕

Hi, blue, I too think the weight is a serious concern and will be treated as such

My dd (slightly shorter than yours) was around that at her lowest, and would have been admitted if her bp and pulse hadn't been weirdly ok

She's 43kg now and still not allowed in school full time, to give an idea

Day, my ASD dd was actually quite vocal at sessions after a slow start She had an incredible therapist, though, who seemed to 'get' her and knew the right questions to ask to draw her out Her ASD was helpful, in a way, as she is unable to tell you 'what you want to hear' so she was honest, even when the truth wasn't comfortable for her

NT dd, on the other hand, is basically monosyllabic!

Sorry, Myrtle, didn't mean to ignore you there - dd weigh-in wasn't too bad, a little bit more gained, though not sure if it'll be enough to permit the full-time school return

We'll find out on Weds, I guess Very glad your dd is getting all the good care and attention she needs It makes all the difference when you feel properly supported

Thanks so much for all your advice and help, it really means a lot that you all sadly know what it’s
like and can prepare me.
She only goes to college 2 days a week so it’s not too full on, it’s basically aimed at getting her back into education because she has missed so much with her anxiety and school refusal. She’s been doing so well too but I suspect that’s because she’s focussing all her anxiety on the eating issues.
I just bought the Eva Musby book kindle edition so thanks for the recommendation. It looks like a fantastic resource to dip into.

hello everyone. A sad welcome to Bella and Tr1. I am (only a little) further down the road than you guys and I can remember the horror of it very easily.
I check in on my lunch hour at work so this is why I am a little sporadic in my posts.
My daughter started treatment at home just as lockdown began in march and I have to say it was a blessing in many ways: no worries about what other kids were thinking, no question of doing sports/activities, husband wfh to keep an eye and make sure she ate lunch, siblings at home to entertain her, school zoom lessons so she didn't feel she was missing it. If I had to advise anyone, it would be get your child away from school for a bit to stabilise, to take away the peer pressure. Then they can go back slowly, 1 lesson a day to start.

We went to feed the ducks a lot - it was obvious from this that food was a good thing (if it worked for the ducks, why not for her), it felt nice to be outside, not arguing about food, and i could drive there so there wasn't any walking involved. we slowly built up to a 5 minute walk to feed the ducks.

Before that we had been managing with family members having her for a day a week. Worked quite well in that she felt under the social pressure to eat and managed to eat to some extent. We bought lots of craft kits to do (painting by numbers knitting a hat, that sort of thing). I carried on working because I felt work was my refuge and I struggled to face 7 days a week on feeding duty. I think it was good to have others involved too, because she could talk to them in a way perhaps she didn't feel able to me. She said some awful things to us in those days.

My DD was awful in the beginning and we just couldn't make her eat. How anybody can say 'I was just firm and she ate' - we just got a howling demon who fought her way out. My moment came when we spoke to Eva Musby and she looked upset we were having all these arguments. I realised that I couldn't make my Dd eat, I could only support her. If she didn't eat, well I could look sad, but ultimately I knew that if she didn't eat and gain weight they would admit her again (she was very unwell). To be honest I was so worn out I was half hoping they would. However, me being calmer seemed to help, and we could rebuild our relationship while she struggled to conquer her eating problem and I struggled to keep her safe from self-harm. We needed a lot of distraction techniques - television, cat videos, games, alexa doing daft things.

We quickly learnt that any 'deals' had to be based on the eating happening first, and then the activity! No food no walk. It was sad because we were a family that did a lot of activity (like walking or bikes, not so much football) and that was all curtailed.

We had a plan to see theatre shows and disneyland when she recovered (she is now holding that over my head and I am sad we can't go at the moment). However the distraction of looking at brochures and learning songs for the shows helped immensely. singing is so good for your soul!

I got lots of feeding ideas of the FEAST website, so would thoroughly recommend.

We are in a much better place, so there is light at the end of the tunnel. We are still feeding and I am still on high alert, but she eats lunch at school unsupervised now.

Incidentally, I also wondered if my daughter had ASD while she was ill and we didn't know it, and those behaviours have all resolved. It is important to understand that ED can lead to some children being diagnosed with ASD when actually it is the malnutrition that is causing it (this is not to deny that children at ASD may be more at risk of developing eating disorders).

we weigh at home (lockdown) and she knows the weight now, but doesn't read it off the scales. She didn't know for a while but then found out by accident and we then decided to be open. She had already started to feel better so I think it was easier for her to manage.

Beat have a service where parents get a mentor to help to support them - i really suggest anybody rings them if they are struggling to cope.

'It always seems impossible until it's done' Nelson Mandela

Hello everyone
I dont post very often but I do read all your posts, and so sorry for what everyone is going through. It is really tough and I so wish I had a magic wand for you all.
Little update from me. Things not great. My daughters BMI has now dropped below 14, not been this low for a few years. Some recent tests also revealed abnormal heart and also some dodgy blood test results, predominantly with platelets/bone marrow. Been in this situation before, it's not good.
Her therapist has had discussions with her about an admission to the Priory. It's all very difficult and worrying but I feel much more helpless now she is under the adult services, no input whatsoever. Not sure what the next few days will bring , she might come back home for a bit to see if I can help her get back on track. Otherwise looks like another admission is looming. It's like deja vu 🙁