Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

m.apkpure.com/instant-weight-for-height/weightforheight.geneticdigital.co.uk.instantweightforheight

Here's the app. If you don't have Android, let me know and I'll plug the details into my app and give you the WFH.

DD is weight restored but I am still seeing signs of the ED rearing its head. Pre diagnosis she began to drink black coffee, I thought that this was a natural part of growing up and socialising - coffee shops are this generation's pubs. Post diagnosis and we stopped her drinking coffee (as a diuretic and DD believing it aided weight loss). She's not drank it in a year. In the last week I found a coffee cup in her room with the remnants of black coffee in there and this morning she was looking for the instant coffee jar (I had taken it to work).

Question is how to tackle this, I associate black coffee with the depths of her illness - I'm not even sure she likes the taste (never ordered a black coffee in Starbucks) - I thought maybe buy some coffee drinks in sachets, the likes of Starbucks Cappuccino which contains milk powder to see whether this is ED behaviour or DD likes a cup of coffee.

Have others got experience of this behaviour.

@Girliefriendlikespuppies the EDSUK group I can find on FB has only 34 members - I'm assuming that's not the right one? Do you have a link?

www.facebook.com/groups/430874960395142/?ref=share @LittlePickleHead - I have a link.

D1 if you're sure it's an ED behaviour then I would simply not buy any coffee for a bit. My dd has started drinking coffee but it's normally a cappuccino or latte so I'm thinking it's not an ED behaviour but now you've got me thinking!

@Girliefriendlikespuppies I refrained from buying coffee sachets from the supermarket at lunchtime - same thoughts as you regards to reopening that can of worms. Not knowing your DD but those drinks she has do contain milk products and maybe high calories - my DD was drinking black coffee, if she drank a frappuccino I wouldn't be concerned :)

@SwattyPie if you can't download the WFH app (I can't), it's fairly easy to work it out via the NHS BMI calculator.

Go here
www.nhs.uk/live-well/healthy-weight/bmi-calculator/

Put in your DD's age and date of birth and then put in a made-up weight that feels average and press calculate. You'll get a centile answer and you can play around with the weights until it says the 50th centile. That's 100% WFH. So let's say your child weighs 40kg and the 50th centile for their age and height is 50kg then her weight for height is 80% (ie 40 divided by 50 multiplied by a 100).

This way you can always check the weight for height yourself. The annoying thing is that as they get older and taller the 100% WFH just higher and higher. I've just done it and it's about 4kg more than when we started with this.

As an aside, I think it's a really unreliable guide. Weight loss and rate of weight loss are far more important. I listened to a podcast about anorexia in larger bodies that really drove it home to me. If you've got an overweight person who's losing weight, obsessing about food, restricting, doing all the things our children do then they get congratulated by everyone for becoming smaller. And then possibly at some magical point they are considered to have gone too far and everyone shouts anorexia. But all the damaging behaviours were there from way back and there's no difference in their mental state from either side of this particular point.

Thanks. I'll investigate the app and the BMI algorithm. Having a really bad day here. She's reached angry and defiant. I know this is normal but it's thrown me into a complete spin. My anxiety levels are through the roof.

@SwattyPie I and probably many others on this thread can relate to where you are now, I hope that provides you with some consolation. My experience was the feeling of my whole world being turned upside down over something that should be so natural - eating.

My opinion is that you are ahead compared to where we were then, you have the support and access to help from real life experience. I find it hard being a carer now for my teenage DD at a time when she should be independent - I don’t want to stress you but no-one else knows your DD better than you and you are in the best position to help her. Advice from this thread and from those with lived experience has been better than anything CAMH could provide - keep asking MN.
And hospitalisation, at the time I thought I had failed as a parent when in fact it was the start of DD’s recovery. I had to push, turning up at A&E when CAMH’s wouldn’t admit her (they should have earlier). DD’s ED hated it - but the ED nurse trained us on meal times and showed us how regimented and strict we had to be, a total about turn compared to our previous quite easy going parenting style - but it worked.
And anxiety - I was prescribed anti depressants and sleeping tablets, I take neither now but it got me through the rough early stages.
Reading your posts you are doing a good job, a job you didn’t want. Reading stories from recovered anorexics they are thankful for their parents saving them at a time when they couldn’t save themselves.
Take care of yourself as well, it is lonely and isolating but there is no reason why your DD won’t improve.

SwattyPie Sorry you're having a bad time. I struggle with the anxiety too. I sat at breakfast this morning struggling to swallow a mouthful because the sausages I bought aren't dds 'safe' ones. It's ridiculous how my heart was pumping over sausages. She did eat them but the adrenaline will continue to affect me for a while yet. I'm outside wrapped up warm with my tea scrolling and watching the birds. Whatever the weather the garden makes me feel better.

Can anyone advise on clothing. Dd needs new jeans. I'm guessing size 4 or 6 at the moment. She always had a tiny waist even at normal weight. I'm dreading going shopping. How will she cope if they start feeling tight which is the whole aim of recovery. I've tried a gentle conversation about it and suggested sticking to joggers and leggings for a while but as usual she says she's ugly, she looks ugly in everything and I'm making it all worse etc. Slammed door 😞

Thank you both.

Why** clothes buying is a minefield, I think Eva Musby covers it a bit in her books but I would go with a size bigger than you think and keep an eye on clothes that might be getting a bit small.

Interestingly dd said she thinks she's a size 12 now but seemed okay with it, she also chucked out a couple of pairs of size 8/10 jeans without a melt down.

She is tall, with broad shoulders so I think naturally fall in a size 12/14 as an adult (the same as me!)

I think her anxiety levels generally are okay at the moment so it makes these sorts of issues easier ti deal with. A year ago she would be screaming and self harming at finding her clothes were too small.

She's started a new job at Primark today which I'm praying is going okay!

Girliefriendlikespuppies

Thank you. I'm looking for jeans with a bit of elastic in the material or an adjustable waist. I found some on H&M website so will give them a try. Dd has put nearly all her pre-ED clothes in bags for the charity shop. I'm not sure whether to hang on to the better stuff or not. Might they be a trigger? It's all such a minefield.

The very best of luck to your dd in her new job!

Another question.... Is there any kind of rule about when periods are likely to return? Is it likely when they hit 95% WFH kind of thing? (I promise I'm not really obsessing about WFH, it just seems to be the only measure I have at the moment). We're a long way off 95% but I am curious.

@Swattypie I'm not sure there is a rule of thumb. My DDs period returned when she was about 83% WFH - but I know some kids never lose them, even when very ill indeed.

DDs periods stopped early on - sue only stated them aged 15 and they stopped again at 16 when she lost weight. A gynaecologist said that generally you need to be above 45kg to have any. DD got to 100% wfh (around 50kg) and they still hadn't restarted. She ended up seeing the gynaecologist again who gave her a boost of progesterone to kick start them.

@SwattyPie dd never stopped having periods even at 74% wfh. Seems to be quite variable between different people.

Thanks again all. This is such a useful page. It does seem very varied re periods. I think I'm being a bit optimistic somewhere deep inside, although in reality I know the situation I've landed in. When does the feeling that your life is over and that this new normal is somehow manageable kick in? I just can't see how I can keep this up forever.

I feel the same @SwattyPie. Six weeks in it feels like nothing will ever be normal again.

Being off work is adding to the feeling of being disconnected from the real world.

To start with it feels never ending. Then one day you will get a small glimmer of your DD. And then gradually a few more. Then you'll have a setback, a week with no weight gain or a loss or a refusal of something previously eaten and it will feel awful.
But bit by bit as the weight goes on more of your normality will return. And life will get back to usual. Well a new usual.
I can honestly say that in the last few weeks I have stopped thinking about my DDs food. She has been weight restored for 15 months and it took us 8 months to get there from diagnosis but she was ill a lot longer before that than I realised at the time. She was 74% wfh at her lightest with a heart abnormality and compulsive exercising. She was v ill and on the verge of hospitalisation. And our journey was quite quick....my DD never had dismorphia and it was always about her fitness and her sport. She once told me that if I made her lose her six pack she would never speak to me again. She has and she has forgotten she ever said that!
So it is a v long process. But it is not all as awful as the first few months. How long that period is I guess depends on how underweight your DC are and how much weight goes on. For me the first and most awful part was 4 months.... then my glimmers started. we had many many set backs and it's important to look at the overall trajectory and not individual weight ins or weeks.....

My dd lost her periods at around 90%wfh and needed to get above 95% to get them back. I think in my dds case it's not necessarily the weight she was but how much food she was consuming. Once I started getting the calories in they came back quite quickly.

I'm over the initial shock but it still breaks my heart daily. I just wish it would all go away. I love dd dearly but at the moment she's sucking the life out of me and dictating everything I do and it's hard to see how we're ever going to live normally again.
I went out for an hour this afternoon and left dd at home with dh. I had to pick up some shopping and took my book to sit in the car and read. I must have had 20 messages from dd asking what I was doing and when I was coming home. It's like she's regressed 10 years and needs me near her all the time. It's so claustrophobic and stifling. A few months ago she would have been out with her friends and would barely speak to me. It's one massive extreme to another.

I didn't know this thread was here - wish I'd known before! 21 Yr old (v. Young for age) has an ED and has been waiting 18 mths since referral to ED service. I've placemarked this thread and will be reading through the links, thank you x

Yes @Whyisthishappeningtous DD13 is the same about needing me there ALL the time, it makes me feel like I'll never have a life of my own again.

I'm signed off work for the month but I usually travel a couple of times a month for work (just within the uk for a night or two) and it now seems impossible to think I'll be able to do my job in the same way.

For those that were signed off, how long was it for and how did you know when to go back? It's all so unpredictable and exhausting I can't really imagine in 3 weeks anything will have changed. But I'm so worried about not being at work and not being there is adding to my own sense of isolation with all this