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?

Myrtle my dd has a weighted blanket, it definitely helps, I'm tempted to get myself one! Eek re moving out 😳

My dd hates her weight blanket so I have it!

Thanks @Girliefriendlikespuppies it’s so hard as you feel like everyone has an opinon and you are trying to balance and navigate as best as you can.
I’ll keep her off as that feels right for us.

@tangledzebra Hi and welcome, I think you should definitely trust your instinct and keep your daughter off school, particularly as you say it’s not always a happy place for her. She’s a very low weight. My dds lowest was 78%wfh and there she definitely was t well enough for school, her bloods etc were also fine but her pulse was quite low. She looked pale and drawn, her eyes were dark and mentally she was in a very bad place. She would have panic attacks at meal times and often hit herself in distress. She’s now 85% wfh after a massive gain last week and she’s in a much better place mentally than back then. She still has a long way to go but the meltdowns are less frequent and she doesn’t have bruises on her face and arms anymore.

I had the opposite dilemma to you though camhs didn’t feel she should go back to school until 85%wfh but my daughter was desperate to go back and claimed that being off school was making the Ed voice louder. With support from her school and the Ed team she went back two or three weeks ago, mornings only until 90%wfh. It has helped her a lot but it was a gamble and could have gone either way.

@Rollergirl11 what an amazing update! I’m so happy for you and your family.

I’ve been poorly all week with a cold and chest infection so it’s been a struggle. I’m not sure how the past week will reflect in dds weight when she’s weighed on Wednesday. Fingers crossed.
She’d gained over a kg last week so maybe things are heading in the right direction weight wise now.

@tangledzebra my dd was like yours. She was admitted to hospital at 69%wfh but even then showed no physical symptoms apart from feeling cold and her periods had stopped. She has never at any point felt dizzy or short of energy.
We let her back to school earlier than others on here, but like some, her anxiety was so much worse whilst off school. I think as parents we know child best and there's no hard and fast rule about what they should do.

@Rollergirl11 updates like yours send so much positivity for the rest of us. Well done to your dd

Betty, I had a horrible chest infection that lingered for weeks even with antibiotics. That last thing I wanted to do was think about cooking for dd so I know how you feel x

@NCTDN it’s been a tough old week that’s for sure! I’ve just about managed the cooking but some of the battles over pudding have been won by the ED. I just lost the strength to stand firm.

I’ve been anxious over dds last weigh in too. For the past two weeks we’ve weighed at home as the Ed clinic has a back log and so they asked if we could pause the physical checks and weigh at home.. all fine and good, we both hated that clinic.

Week one she was 46.2kg on our home scales, brand new digital ones. We then weighed one of DHs 12kg weights to calibrate and that was 12.2 kg, so we know they’re accurate ish.
Week two - dd weight was 47.6 kg!! She wore her usual weigh in “uniform” she took her phone out of her pocket before she got on and we weighed at the usual time. I have been “fortifying” all her meals and her milk but I can’t shake the feeling that she has somehow falsified her weight. I’m not sure she could even do this as it would be the equivalent of hiding two bags of sugar somewhere on her body. I did give her pockets a quick check as she got on. She didn’t load with water as I was with her because she was revising just before weigh in.

Maybe it’s this cold messing with my head. Her arms and legs are still tiny but then they always were, her face looks lovely and nice and has colour now. I’m probably just poorly and worrying over nothing. This is what happens though isn’t it.. the ED makes us doubt ourselves and lose our confidence.

@Rollergirl11that is so awesome to read, I am so delighted for you.Our DDs are exactly the same age I think - GSCEs coming up (Y10).

DD is now 90.03% so we are trying to reintroduce activity very slowly, to see if it is impacting on her, will be taking it VERY slowly. I am still VERY wary and it's not easy.

Saturday she asked when she had to stop putting on weight. I told her she was a loooooonnnnnnggggg way away from that! We are trying to make her life more fun now, and she is definitely a different girl (thank heavens), actually laughing and smiling sometimes and actually much nicer.

Keep calm and carry on is all I can say!

Betty I reckon your dd has finally caught up internally and now the body is ready to put the extra calories into gains. I hope so anyway!
*
Dark* I'm glad your dd is still improving and you're getting glimpses of a happier dd.

It's my birthday today, dd got me some lovely presents and a beautiful card and we've had a really nice day. Sadly though ED still managed to sneak in and ruin dds mood, dd said she had some really bad thoughts and got v distressed as believed she has stretch marks (she hasn't not that it would matter if she did). I'm starting to think about covering up some mirrors in the house, they seem to stress dd out so much 😢

Why can't it just leave her alone for one day?!

@Girliefriendlikespuppies Happy birthday for yesterday 🥳 I’m glad you had a good day.
I think that’s a good idea about the mirrors.
My dd has a big mirror in her room and a smaller one above her desk. At the start of refeeding she took them both down. We were amazed and a bit alarmed as one is really heavy! We don’t have a full length mirror anywhere else at home. It’s heartbreaking to see them struggling. It’s hard to comprehend at times too.

I hope you’re right about the body having caught up internally. Fingers crossed and time will tell.. in the meantime as @DarkBlueEyes says… keep calm and carry on!!

Hi everyone. Popped in to update on my DD (15.5, year 11)after 2 weeks of 'supervised' eating. It's been up and down. I did manage to get her to the GP for blood tests etc, one hurdle down. She had to go back to have some repeated so we're awaiting those results. The 2 appointments were 7 days apart and in that time (with supervised eating!) she lost 4 lbs so I'm very worried. 4 days of the 7 she was with her Dad and he's not really 'on board' yet but I'm working on it, I've given him all the info but, sigh, I will keep at it.
Her BMI isn't particularly low at 19.3 but she's so thin and her mental state is bad, she's cried at almost every meal.
@Lougle would you be able to do the WFH for me please, if I PM the relevant info?
I don't think CAMHS have even triaged her yet. The referral was made on 5/11 but they need all the info from tests/repeated tests. I know there are other criteria apart from BMI but I don't expect she'll be seen any time soon. It's very tough trying to manage this on my own. I did go into school a couple of days in week 1 to get her to eat lunch in the car, but agreed to drop that at present as she was so unhappy; she has told a good friend who promises to let me know if she doesn't eat. Not ideal, I know. She's told me she was previously throwing away lunches, I think for a good couple of months.
Thanks for your support ladies.

@NCnora welcome is the wrong word, but hello and I'm sure you'll find amazing support here as I have.

I had a phone call from the Care Centre today. DD has been arriving with her snack open and is being very secretive with the nurses, so no prizes for guessing what she's trying to do. She asked me "when can I stop putting on weight" over the weekend, and I think this is a reflection of her discomfort.

So it will be back to me handing the snack to the care centre at drop off time. Until I think I can trust her again.

Will this ever end? It feels like we go backwards every time we go forwards....

How is everyone else doing?

Hi @NCnora yes, of course.

In the midst of a meltdown here, I’m hiding away whilst dad tries to diffuse things. DD says her jeans are too tight and don’t do up, she says she hates me because I’ve made her fat and ugly. She screamed at me asking why I’d done this to her (made her fat). She’s been good all week and happy but with weigh in approaching she’s finding at too much.

Just when you think things are going well it all seems to go to pot. I’m trying to work and keep life to some kind of normality for her sake and the sake of her brother and sister but this afternoon is a reminder of what’s still tormenting her.
It’s just so cruel and heartbreaking.

Oh no Betty clothes are really tricky, on one hand your dd must know that to recover will equal weight gain but the reality is torture for them.

Can you buy her some new stuff the next size up? I pointed out to dd that it would be weird at 15yo to still fit clothes she could wear age 13/14yo and that growing up means exactly that growing!!

Due to sensory issues dds never been a fan of tight clothes luckily so most of her stuff I could just gradually replace as she gained weight.

I am absolutely full of cold and have felt dreadful all day 😩

Thanks @Girliefriendlikespuppies that’s a good way to explain it to her. Her body shape wj be changing as well. Ok the whole she wears baggy, lose clothes so it’s not been much of an issue. She was due to get her hair cut and she kept saying short hair would make her look fat. I didn’t think she’d make it as she was so upset but she did and the hairdresser made such a lovely fuss of her gorgeous hair, which has been thinning lately and she worries about that.

She loved her hair and was ok during the evening.

I wish she could see what we all see.
Weigh in today and I’m so anxious about it. I’m praying for a gain.

@Bettybarkalot123 good luck with the weigh in. that sounds like a total nightmare re the clothes.

I threw out a lot of DD's clothes - especially the effing Brandy Melville skirt that I think started all this (one size fits all my arse, even my tiny then 12-year-old couldn't wear it). Anything new that's bought is a loose fit.

We had a couple of bad incidents including one 23 hour food strike after her weigh in. And a lot of anger at me for making her such a fat, greedy pig (I hear you @Bettybarkalot123).

What I'm learning, or trying to learn, is that she will have these horrific meltdowns, but she does recover from them and we get back on the horse. It's one step forward and one step back but so long as the step forward is 10cm longer we'll eventually get there. But they leave me utterly exhausted and wrung out.

We're now in what will be a hard phase as she's officially a 'healthy' weight i.e. the very bottom of the range but no longer medically underweight. She says that recovery is so much more difficult when you're no longer underweight. It wasn't exactly a picnic getting to this stage. However, she says she has decided to go for 'all out recovery' (quote from Ro Recovering, I think). I'm sceptical but even saying it feels like it could be some sort of manifestation.

Oh another thing that might be interesting to those who have daughters who've always been at the very low end of the BMI scale.

The psychiatrist at the clinic was always talking about her getting to 100% WFH as evidence suggests that this is most likely to lead to full recovery. However, the clinic has now recalibrated to say she has to have three consecutive periods and +1kg. I think this will probably end up as being somewhere between 85-90% WFH.

I know lots on this thread feel very strongly 100+ is needed and that might well be right, but I've always felt that it needs to be more nuanced given how averages are just that, averages.

Valley I wholeheartedly agree. DD is hovering around 95 to 97% wfh. Since she got her periods back she has had 5 and they have been regular as clockwork. I think she got her period back at pretty much the exact same weight that she lost it. CAMH’s initially said that they wanted her to get to 100% wfh or 2kg above the weight that she was when her period first came back. But now that her periods are back and regular they are happy with the weight she is currently (and they have now discharged her). As am I.

I am also conscious that lots say your should go higher to achieve best recovery and to be guided by state not weight. But DD’s mental state is really good at the minute. She is still anxious but a lot of that is environmental; she is about to do her mocks next week. She went to a gig on Saturday night, was confident enough to push through a sea of people to get to the front to find her mates where she rode on someone’s shoulders. I think it’s fair to say that her mental state is the best it’s been throughout this horrible process!

They are all individual and we know what is best for our children. Pushing DD to some arbitrary higher weight just because other people say you should seemed counterproductive to me. Obviously I will remain hyper vigilant and if at some point I feel further weight gain is necessary then I won’t hesitate to get DD there.

@Valleyofthedollymix thanks, yep she’s a big BrandyMelville fan 🙄
And yes, she says I’m making her ugly and fat and why am I doing this to her. As you say she recovers and we move on. On the weigh days I let her make herself a Buddha bowl for tea, as long as it has four falafel, hummus and couscous she can make up the rest. It seems to help and we also have a couple of tough days afterwards too.

When she was born she was 8lb 11 and right at the top of the chart but me, my daughter and my mum all seem to have gone through a skinny phase round about 15-18 years. She looks fuller in the face and has more of a bottom now, but her arms and legs are tiny. She loves her hair thank goodness.
I’m at work but will read catch up properly later.
Hope everyone has a good day. X

Betty we were at the stage that I think you are now over the summer. DD refused to wear all the lovely clothes that she got for her birthday over the summer because she hated how she looked in them. She said it was all my fault because i had made her fat. There was one skirt from she bought from Urban Outfitters online. DH actually brought it up to her while she was in hospital. It’s a size XXS (the smallest they do) and was too big for her. At the time she vowed to get better so she could fit in the skirt. But then when she did fit in it it then meant she was fat. So she didn’t wear it.

Now she is in a better place when it comes to her clothes and is wearing much more of them rather than the blasted same hoodie and joggers. She still maintains that she hates the way she looks but she admits that she didn’t even like how she looked when she’d lost the weight. Nothing was ever enough for the ED. She was telling me the other day that she has been able to separate how she feels about the way she looks from what she eats. And she realises that not eating something will not make her feel better about how she looks. Basically now she is at the point where the benefits of eating far outweigh the benefits of NOT eating. I think that is the mindset that they need to get to.

I think knowing the 'right' weight for individual kids is almost impossible to predict which I suppose is why state not weight is likely to be the most useful guide. From my own experience regular periods plus a kg would still have been nowhere near the right weight for my dd. I also think clinics can sign kids off at a 'healthy weight' when actually they do need to go much higher.

I think also that pushing your child above where they would naturally sit weight wise kind of forces them to confront that underlying fear that weight gain means their life is over.

Saying all that reminds me I really need to book dd in for a weight check!!

Roller it's wonderful your dd has had that realisation and insight, that's what I keep praying for with my dd!!

She did say something Ystd, they'd been studying in science how the body needs sugar and energy and how this is transported around the body. She mentioned it to me and I pointed out that even lying down and not moving the body is constantly using energy to keep functioning. Every single cell in our body needs energy in the form of glucose to function.

I could see her letting that sink in...

Hi all. Such an interesting few posts, thank you all for raising those things. Feeling a bit meh tbh. Weigh in yesterday was only a 200g gain, and mentally she is not in a good way.

It's such a shame as she has been gradually allowed to do more things, and she WANTS to do them and says she'll eat her meals and snacks but then pushes back hard. Standoff over breakfast this morning where she ate less than half. Matter of factly we said no school until you eat enough to our satisfaction, and drink your drink. I calmly sat on the sofa and just waited it out. She was rude and nasty, but did eat more and did drink the drink. We made it to school.

I just want her to see there's a life out there for her and she just needs to grab it with both hands. It must be so bloody boring being her.