Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

Happy new year to you all and I really, really, really mean that - hoping that for everyone of us 2022 is better than 2021.

It's a weird time for me because it was between Christmas and NY last year that we realised that DD had an issue and it escalated fast. I've been reading the thoughts that I wrote down and I was in shock and confusion, but was also woefully naive. I don't think I'd have believed that we'd still be here a year on.

On the one hand, DD is 6 or 7kg more than she was then.

On the other, she was absolutely horrible yesterday. She was possessed, screaming at me, waving a knife at DH, grabbing me really hard as we wouldn't answer the question 'do I look underweight?'. It was terrifying.

@zingzow - really good luck. It's crap but you'll find lots of good advice here. Lots of kindness which has kept me going.

Valley that sounds scary
It got us last Christmas that there was an issue with dd but took until may before it was properly recognised. She's so much better now but anxiety still rules so many things for her.

Hello, `I've been lurking on this thread for a few months and it's been invaluable, thanks to all the regular posters for sharing their knowledge.

dd is 17 and had a major crisis around Halloween. Up until then she had been suffering with a bit of school related anxiety, but she was still eating 3 meals a day. It's astonishing how quickly she went downhill. A couple of trips to A&E, two UTI infections which she couldn't shake and a week of total starvation are among the low lights of the last 2 months (feels more like 2 years tbh). By the beginning of Dec she was at 15.7 BMI.

Despite all that she has made a lot of progress in the last few weeks. We're not in the UK so the system is slightly different, but we couldn't wait the 2 weeks we were given for a CAHMS referral, so we are in a private clinic which has been brilliant. She has a psychologist, a dietician and a psych nurse assigned to her, but Christmas has really messed with the routine and she hasn't seen anyone for nearly 3 weeks now which is a struggle.

She is sticking to her meal plan, even on the worst days she has been eating everything even if it takes a huge psychological effort. The big problem is the guilt after eating and the feeling that she doesn't deserve to eat and to get better. She gets very upset, and punishes herself by not allowing herself to do anything distracting, let alone nice for herself, even watching a movie is branded as indulgent by the ED voice. She feels ashamed and worthless after eating even the basic amounts on her meal plan. It is absolutely heart breaking as she is the sweetest, kindest girl and is so loved by us and all her friends. I know so many of you can relate to this, it's so sad.

What I have been wondering lately is if she might need some medication to help her through this awful stage. She has a lot of insight and she knows its the ED voice trying to cling on to her but she says the voice is screaming in her head and it's all she can hear. It makes it so hard for her to fight. I feel like she is fighting a battle on two fronts, one with the food and the other with the feeling of guilt and shame that the ED voice is forcing on her. Also she talks a lot about really wanting to get better but the fear of eating and disobeying the ED voice is too strong for her and that she just doesn't have the strength to fight it.

I was wondering is anyone has any experience of using meds to 'drown out' the voices as it were? I'm going to talk to the clinic about it this week, my instinct is telling me she needs something more to help her.

Thanks for reading this, I know it's so long. It's so hard to even write these things about our beautiful girl who is just a shell of herself now.

@Valleyofthedollymix I can so relate to that. Sometimes it's as if Dd is possessed, the way she talks, her tone of voice, even her face changes when the ED takes over. It is horrible.

@Valleyofthedollymix just a big hug for you. I don't think I'd have dared answer 'do I look underweight' if my child had a knife in their hand. Either answer could be drastically wrong.

@LizzieDarling I'm sorry your DD is struggling too. We only saw a turn around in DD1 when she started olanzapine. She had already been on fluoxetine for some weeks, but once they prescribed olanzapine, she became really hungry and very willing to eat. It is sedating at first - DD1 did nothing but eat and sleep for a few weeks (DD1's BMI was 14.1 at the start of treatment). After a while, she was able to stay awake for longer periods.

Oh God valley that sounds awful, sounds terrifying. I think ED 'anniversaries' are really difficult 😞 how was your dd today?

I went through last year's calendar (moving bdays over to this year) and was really shocked at how many appointments dd had. From Dec through to June time she was averaging at least 3 appointments a week!

This time last year was a really dark time, dd was so unwell, we were just entering another long lockdown and I was trying to work and hold it all together (not v successful!)

This year generally we are in a better place, dd is at the right weight, has faced fear foods, is generally more relaxed around food. However we still have to tackle the leaving food for the ED on the plate, the many ludicrous rules around when she will eat/drink and trying to get her to want to recover and let the ED go....

Shouldn't be too hard right?? 😉

Hi everyone, I’ve had a bit of a break and haven’t had chance to catch up properly with the thread.
Hello to all the new posters. Glad that you’ve found this thread, it’s been so helpful to me.

My DD is now two weeks (I think) into taking fluoxetine (10mg). It’s been great, no side effects at all so far. She says she can’t tell any difference but we can. She seems brighter, she’s laughing and singing more and she’s reading again. A small thing but something she found almost impossible to focus on at the peak of her anorexia.

She’s still not great weight wise, she’s 47.7kg which I think is about 87 maybe 88% wfh. But she’s had covid over Christmas and still ate and didn’t lose which is a bonus.

She is less anxious around food but still not challenging any fear foods. On Christmas Day she ate with us, I made a vegetarian mushroom and Stilton Wellington. She asked for a piece and ate half, she even went back for seconds of roasties, gravy and veg. I did feel very happy I can tell you.

Hello
Just popping by to wish you all well. I was hanging onto to this board as a life raft April to June last year. I can't thank you all enough. DD is now 18 and thankfully had got back to a reasonable weight by the summer. Thanks largely to following the 3+3 approach and taken setraline. It did take 2 months of no progress and utter despair before she turned around. The ED still has a voice now 6 months on but I think the winter depression and fear of the future is louder. Our kids have been through so much since March 2020 and I'm very sad about how badly this has affected some of our kids on this board (and us parents) . I do suspect we would have faced an ED anyway regardless of covid as I think the underlying anxiety was always there.
I wish so much that I'd dealt with her anxiety by getting her help before it morphed into anorexia. Just kept hoping she'd turn a corner.
Glad the new posters have found this board, but sad you are here in equal measure as I know what you must be going through. Those were the bleakest months of my life last year. I've never felt so helpless and such a failure. Utter despair. I think we are all a bit traumatised still. But I look forward now to the year ahead and recognise how far DD has come and I'm very proud of her.
Wishing you all the best for 2022. You are all warriors. X

@Sm701 was it your daughter that was repeating y13?

Hello no not us. dD now in yr13 for first time. Think she's probably looking at similar unis to yours based on another thread I've seen! It's daunting thinking of them going off to uni in September isn't it?!

Ah I knew I knew your name! Do you feel confident that you're dd will be ok moving away in 9 months? I go through phases as to what I think

gosh @Valleyofthedollymix that sounds so scary - I hope you're all ok now?

Sounds like many of us have been reflecting on the last year - I was in the car with DD today (she likes to go on drives when she's feeling anxious) and reflected that this time last year we were literally driving across the country over lunch times so she could eat lunch in the car (with much crying and anxiety).

Dd is going to start supported exercise next week - am a little bit anxious given her previous HIIT compulsions but we've agreed not cardio etc & focus on toning/building muscles. Her new boyfriend is very clear in that if she exercises she has to eat more - so it is nice that she's getting messages not just from us...

@Sm701 - so lovely to read your post and hope your DD continues to progress well!

@NCTDN- we're not repeating yr13 but were in year 13 last year, and have re-started yr 12 (initially due to timetabling but actually now 100% better option in terms of DD's capacity to engage etc) don't know if it us you were thinking of?

DD is in her first year of university, she wanted to be away from home and we knew we had to support her decision even though we didn’t want to. The deal was that she did a generic degree that she could possibly transfer close to home if needed. She is mostly weight restored but still anorexic and still struggling.
The university have arranged monthly weigh in checks, dietitian appointments and monthly bloods. They also arranged disability support.
She has had to stop exercising as the anorexia was starting to take hold and we now FaceTime or she records her eating for accountability.
She is enjoying her time and maturing, it’s a shame that anorexia is a shadow that she can’t shift at the moment. But she still fighting and the university have been amazing.

@Boulshired that's good of the uni - where is she? Did she put in her initial application that she had an ED?

I’ve sent you a PM just for her privacy

Hi @NCTDN when I can't sleep it's usually that racing through my mind. Reassuring to hear about the support for your DD @Boulshired , although sorry the ED is persisting.
What I learnt last year is to take each week (sometimes each minute or hour!) as it comes , so I'm really trying not to think about it. But that's so hard isn't it.?!
@myrtleWilson , yes I've been thinking back the same to the chaos and appointments, and it's important to recognise the progress isn't it. DD had been taking an exercise class once a week for a month or so and it definitely helps her self esteem. By contrast we found a gym membership was a trigger (how much time to spend there etc) but a structured weekly hour has worked ok.
So much to think about!

Betty I'm really pleased that your dd is doing well on the fluoxetine, I know you were worried about it.

Myrtle I would feel anxious about the exercise class as well, sadly I think we will all probably be constantly looking for signs of relapse for ever!

Dd came out of the orthodontist today with bands on her teeth 😕 they connect the top and bottom jaw together. She can take them out to eat but she's already been in tears about wearing them at school. I've told her not to worry about it and just wear them at night... I'll ring the orthodontist tomorrow as I really don't think it's appropriate for someone with an ED to have them!!

@Girliefriendlikespuppies DD2 had those. It only took a day or two to get used to eating with them. The first day she was like a little sparrow, posting food through the gap. But then she realised how far they can stretch and she was fine.

@NCTDN and @Sm701 - I'm on university threads too but for DD's older brother. It's kind of surreal flitting between those ones ("I have 7 children already at Oxford") and here ("yay for a 600g weight gain"). The plus side of having a child with MH issues is it really puts everything in perspective and I've relinquished any competitiveness in favour of god, please be happy.

Really hope that your girls can see university as a reason to get better. Hadley Freeman has written in the Guardian about how it was the thing that finally prompted recovery.

In other news, DD got her period today. Good, obviously, but also she thinks green light to not having to put on more weight.

@Valleyofthedollymix dd hasn't felt great the last few days (not Covid though) and I'm really hoping it's because her period is on the way back. To me that's a huge sign of recovery!

I had a small epiphany yesterday, I was thinking about something dd said about if I had made her finish all her food she'd be dead by now. At the time I thought well maybe letting you not finish the food was the right approach (I load up with hidden calories and put more on her plate to compensate for food left.)

Then on reflection I thought well actually if you think finishing a plate of food will cause you to die then obviously you're not going to want to finish it! My job is to show her that clearing a plate doesn't mean she will die/have to kill herself.

I think I've been enabling the ED for so long as I've been scared to rock the boat.

DD has been saying she's had a feeling that her period was about to come for about the last three months and finally got it right. She did have a load of proper period spots (the ones with a head that come up overnight) and her explosion was a couple of days before.

It is, as you say, a huge say a huge sign of physical recovery but has highlighted how disordered her thinking is. She is now determined not to put on any weight so is tweaking her meal plan accordingly. Neither she nor I can imagine a world where she eats freely.

DS said last night how for the last year he's dreaded coming home after school and how he can't wait to go to university. I can't help resenting DD for ruining this time for him and for us.

Cross post with valley I would completely dismiss any talk of periods returning and recovery. It's obviously a sign things are heading in the right direction but my dd has been having regular periods for a year now, is a stone heavier than when they came back and is still nowhere near recovered.

I resent the ED and by default dd all the time, it's such a destructive, selfish illness and has caused such heart ache. I often think if I had an illness that caused my loved ones such misery then that would make me want to recover, even though I know it's not as simple as that sadly.

Yeah exactly girlie - she refused her bedtime snack yesterday which was right after the conversation when her brother had said he couldn't wait to escape and her sister said she only feels happy during lesson times. And I thought, how on earth can you listen to that and see the pain it causes your parents and not want to make it better?

As ever I'm in awe of how you're managing it.

I think we're all bloody amazing warriors on this thread.

It's truly one of the most horrendous things you can go through as a parent and apart from anything else it goes on forever!! Come Easter it will be 2 years since dd first start restricting 😩