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?

Hey all I wanted to check in as I have completely fallen off the radar and I keep thinking about you all and wondering how you are all doing. I can't catch up with the pages and pages of mutual support and help on this and the previous thread but I am sure there are many new faces and also that there have been ups and downs for you all.
So I just wanted to give you the positive news that my DD (now 14) is really in a good place. It seems incredible to me that merely a year ago she was in the grip of her ED (without at that point me being aware).
She is maintaining her weight with very little input from me (she eats snacks without asking and has tried new meals and meals out- in fact last Saturday we booked to eat out with DD and DS2 and 2 of DS2's mates and I didn't even think about the ED side of it!).
We have stopped weighing her and are allowing her hunger to dictate what she eats above the normal amount.
All her fractures have healed and she has started her life with Arsenal academy and after a difficult start with confidence issues is growing into it and has had good feedback. She is still very nervous but we are using some of her CBT techniques to help with that.
Her blood tests were all fine (after we finally got them) and so her fractures appear to be just bad luck. She still has not had her first period but has developed hips and boobs and looks more womanly.
All that is left is to get her off olanzapine and we have a psychiatrist meeting tomorrow to get that going.

So I want to say that recovery is possible. We were in a very dark place for months and months. Life was almost intolerable and it had massive impacts on our family. We are all still healing from that.
She will may never eat without thinking about it but I live in hope that that will come.
I hope you can take some heart from this and do not mind me dropping by to say hi and catch you all up.

@Moomarre all that attitude and the behaviours are her ED speaking. It is rattled and being challenged and pulling all the tricks in the book by pushing all your buttons. The ED is trying to push you away so you stop making your DD better. Your and your DDs goals are at complete odds with the EDs. Your DD is being held hostage. My DD completely changed when she had her ED. She was violent to herself and others, suicidal, rude, hysterical, disinterested in everything, socially excluded and just in no way herself.
As hard as it is just keep going. It sounds like you are doing the right things. If the ED is not pissed off with you (ie your DD is pissed off with you) then it is happy, and the ED should never be happy.

Lovely to hear from you lots I was thinking of you the other day and wondering how you were doing. That's amazing your dd has continued to do so well and is eating so well 😊 inspirational really.

Moom I echo everything lots has said, your dds brain is still starved and so the behaviours and thoughts can not be rational. At 84% wfh I wouldn't worry too much about school, she probably will struggle to retain any information anyway.

What I find really hard to believe is how even a tiny amount of weight gain or loss can have quite dramatic effects on Dds state of mind. The difference for her between 98% and 100% wfh is astonishing really. All the ED thoughts and behaviours are so strong at 98%, at 100% she is much more relaxed and open to trying new things, finishing foods and is generally a nicer person to be around.

Lots it's so good to hear positive story.

DD saw the GP today. He's ordered an ECG and blood tests as a precursor to referring her for some sort of therapy, which I think she is finally conceding she needs. He mentioned group therapy that has sent DD into a complete spin - talking about feelings is anathema for her, but the thought of talking about feelings in front of others is appalling. I've suggested she shouldn't pre-judge and reminded her that things she builds up in her head often aren't as bad as anticipated.

On the sleep front, the GP said he believes it's linked to her ED as Cortisol levels will be raised by her anxiety. He said he won't/can't prescribe sleeping pills and suggested trying over the counter remedies such s Nytol. Anyone ever found that helpful?

Weight has broadly stayed the same, but has dropped be a few ounces this week even with all the effort she believes she's putting into trying to take in calories. She say her days are spent wandering into coffee shops trying to decide what to eat, not being able to decide, walking out and going to another, then another etc. Not much head space left for studying. Do you think a weekly meal plan might help - I'm thinking it might take the pressure off her each day trying to decide what to eat?

I'm off to meet her again tomorrow, and then she'll be home on Monday for reading week. All being well with a planned C-Section, she'll become an Aunty on Tuesday (and I'll become a step-Gran )- might be a welcome distraction for everyone!

HI all, good to catch up with you all. @Moomarre this happened word for word to us today:

We go into her ED appointments and her urgent care CAHMS appointments and she just completely shuts down. Sits there with her head down and her hair hanging over her face and just shrugs or completely ignores everything they say to her. It’s so rude!

Our Care Coordinator said she was really pleased with how DD is doing DESPITE knowing she reacts badly to being praised. She shut down completely and went ballistic at me when we left. Getting her to eat her snack was a mission and she said it was the hardest snack she'd ever eaten :(

OTOH, she's now 84% WFH, 43.7 kg. The highest I've ever got her to was 44.5 so I know we are in the danger zone. I told her that actually she's not doing very well, she's so far away from being able to play sport that it's ridiculous and she has a massive way to go "but you won't tell me my weight so how do I know?".

She's just so low at the moment, and is vile too "I hate you you stupid woman, go away".

And then has the brass neck to ask us to book a holiday for Xmas! No way, not until she's 90% at least and has been stable for a while AND her mental state is good.

We had more screaming and food throwing on Friday, despite the olanzapine.sigh

@myrtleWilson what are your DD's digestive issues? My DD has terrible tummy pains and she says she feels bloated and is constantly sicking up (heartburn) into the back of her throat. Gaviscon is not attacking it at all.

We persist. That's all we can do I guess.

Love and strength to you all. (and wine)

Hello, everyone, great to hear so many positive updates.
We had a maintain with weight this week, there seems to be a pattern of gain, maintain, gain, maintain going on. At least it’s not a loss though.
She’s 82% wfh now and desperate for part time school next week. She has her mocks coming up which she will go in for.
She’s been working none stop for them. I think she wants to prove everyone who has told her she’s running at a 15% deficit wrong!
Her mood is up and down. She can seem completely normal for some of the time and then other times the ED is really strong.
She’s going to try extra hard this week and push herself for the weight gain for school.
I’m still stuck though, camhs are useless, have the time I can’t speak to anyone there. I asked about DD having an appointment with the psychiatrist and was told she’s booked in the next available appointment which is in December.
I’ve asked about meds but was just told to get her to complete a mood diary for a week.

Feel like I’m banging my head against the wall and am hoping to get a GP referral to a Priory Clinic near us. The relationship we have with the Ed team just seems none existent.

Lovely to hear from you lotts and I'm so pleased to read your positive news... a real tonic for us all!

wether am pleased your DD saw the GP. Re the sleeping tablets - has your DD tried any otoc ones previously - I've not so I'm afraid I can't offer any good advice. Hope baby's arrival is smooth and you all get to bask in some joyous moments - especially if DD is home.

Dark - apologies as I can't remember but is your DD on any meds for her mood. Mine has just had her fluox upped and it does help her immensely. Her digestion issues are awful, poor girl. She's on a tonne of laxatives but have no effect. Following an x-ray it is apparent her entire colon is entirely blocked and her stomach just isn't digesting food (I presume due to the anorexia meaning her stomach had no food to digest so slowed down to a snails pace). There is no space inside her so she feels bloated and in pain after eating (in fact pain isn't just after eating). She's on two months of treatment and I hope that resolves it - I'm worried that the anorexia may have done permanent damage. Obviously I've foolishly googled and discovered 'gastroparesis'...
Betty gain, maintain, gain, maintain is a great pattern. I think/hope being back at school will be good for her mental health - I remember CAMHS telling us that the ED fills the space available so to put in as many activities/distractions as we could to take back the space (back in the day when we had to literally plan out her day in 1/2 hr slots - actually we were re-reading those plans today - as difficult as life still is, I'm grateful we're not in that space anymore) It sounds like your DDs immersion into school work could be a great way of squishing the ED up into a smaller space...

@myrtleWilson I wish you were our daughters ED nurse! You’re so positive! Our nurse has said she has to gain weight every week to stay in school. Not just not lose but not maintain. Seems so unfair to me.
The way you’ve described it is exactly how we see it. She met her friend today and went to the library and she’s been so happy, she’s eaten well and without any breakdowns today. I can’t help but feel she needs as many destinations as possible right now.

Betty my dd has always gained, maintained, lost a tiny bit, gained and repeat. I'm not sure a weekly gain is realistic, surely as long as the overall trajectory is in the right direction that should be enough. My dd has done no work for her exams 🙄

Dark I stopped taking my dd to any ED appointments, it was completely pointless. She wouldn't look or speak to any of them and it set her back for days. In the end I saw (via zoom) the psychiatrist once a fortnight and would talk through any current issues or concerns with her. Tbh I've not always agreed with her advice but it is a useful source of support for me nonetheless. Dd does get some cbt separately but I get the feeling they're looking to stop that and I'm not sure it's been v helpful unfortunately 😕

It's good to read about your progresses. DD1 has maintained her weight this week. Her Psychiatrist agreed with me that it was right to keep her on the starting dose of olanzapine and that maintaining while she has Covid is ok. We can look to gain back the weight she lost once she's better.

Thanks everyone for the support. It’s good to be reminded that it’s the ED not her.

@Lottsbiffandsmudge it’s great to hear such a positive story, I’m so pleased your dd is doing so well.

@whethertheweather I’ve had sleep problems in the past and tried lots of otc medicine. I found sleepeaze marginally better BUT I will say that it didn’t switch my brain off. It kind of made my limbs heavy and my body relax and made it easier to fall asleep and drift in and out of sleep but it wasn’t a magic sleep all night thing. The best thing to break the cycle of no sleep for me was three nights of codeine but I’m not necessarily advocating that. I use white noise now which really helps me, could be worth a try?

@myrtleWilson we’ve had the same thing about the ED filling the space and needing to replace it with other stuff. DD hasn’t been very cooperative so far with coming up with anything else she enjoys or used to enjoy though!

@Girliefriendlikespuppies yeah my thoughts exactly. School should be dependent on her not losing weight. If a pattern emerges then we should pay attention to that, it may be natural for her. She eats reasonably well - possibly still edging towards too healthy for someone recovering but for example yesterday her lunch was a thick slice of white toast with half an avocado and two extra large eggs, poached on top. Followed by a bowl of yogurt and fruit. It may not have been slathered in butter but the avocado was the compromise as butter (and oil) is her biggest fear.
She takes vitamins and vegetarian omega 3,6 and 9 and I’ve managed to add an extra half weetabix to breakfast, so she now happily eats two and a half every morning, with banana, orange juice and a chia seeds.

They took purging bloods a couple of weeks ago and they were all fine and she’s not exercising apart from a daily dog walk, which is limited to thirty minutes.

Surely her body is just taking time to catch up.

The thing that gets me is the Ed nurse complains that gain is slow and she knows what school means to dd and how desperate she is to get back but they’re still not able to do anything else to support her to gain weight more rapidly. Ive asked about meds, supported meals anything that might help DD achieve what she wants but I get nothing back. I know it’s our job I guess but she’s eating good meals, but I physically can’t get her to eat things like a big pudding or chips cooked in lard. The most she will eat is a custard pot for pudding. Prior to the Ed though we never even had puddings after meals, except at weekends maybe.

I know dd is using her exams as a distraction. I think it’s great but the nurse has reminded me that she will be burning calories whilst studying and as she’s maintaining or gaining slowly maybe it’s too much.
She sets her alarm for 7 and comes down and asked me for breakfast so she can have a shower and start her work at 9 🙄
I do tell her studying is dependent on eating and if she doesn’t eat snacks, lunch she doesn’t get to carry on in the afternoon. It seems to work.

@whethertheweather I use something called nuebria rest which h I got from Victoria health. It really works and one tablet is enough. Natural product and worth a try.

@Girliefriendlikespuppies can you just decide to send her to school, perhaps for half days initially to see how it goes? On thr understanding that if she loses she stops? That's what we are doing and DD is 84%. ED clinic very supportive.

We had a 700g gain at weigh in yesterday. Unfortunately the care coordinator told DD she was really pleased with her progress and then the shutters cake down and she totally freaked out. Oh dear. I took her to her friends as planned and I checked in with the mum and they had a great time so hopefully that distracted her.

Keep going everyone!

Dark was that comment for Betty?

Betty I think your dd is going to be someone who needs quite a lot of calories to gain weight, will she eat scrambled egg? I found that a good way to add butter and cream without dd knowing. With regards to pudding would she eating banana and homemade custard? You can make up powdered custard with cream. I would also keep pushing pudding aa the new normal. We never used to eat it either but dd knows it's non negotiable now and it's been a useful way to get her to gradually face fear foods. Through pudding she can now eat chocolate, cream, sweets, cake etc.

Also if she eats out of pots start decanting them into normal bowls, i decant everything now as finds dd eats better that way.

@Girliefriendlikespuppies scrambled eggs is hit and miss, she used to love it so will keep trying.
I’ve been adding avocado oil to our main meals, lots of it too. Also butter to mash that kind of thing. She’s always been quite tiny, she’s got quite an athletic build. Prior to the Ed she played lots of netball and sports at school.

She knows PE is a no when she goes back.
I’ve asked the team about a return to school on Monday at 82 hopefully 83% (by then) wfh but they don’t respond to my emails and our Ed nurse is off this week so we don’t have an appointment.
Think I’m going to email them and say look this is what we’re planning - school until lunch time, no pe, lifts there and back and a supervised morning snack … will you support us or not? If I don’t hear from them I’ll have to just send her in.

I took my first citalopram this morning too, I’m hoping that will help.

@DarkBlueEyes fantastic weight gain, I’m so pleased for you and your daughter. X

@Bettybarkalot123 what does the nurse mean by slow weight gain? Ideally they gain between 0.5 and 1kg a week but there are some practitioners that argue that 500g is the ideal because it's much more sustainable - I know from when I've been on diets that's been the case, if I lose it slowly it stays off. And also weight fluctuates - there is no way you can compare with 100% accuracy one week to the next so if she gains, say a kilo, one week and then loses 200g the next then the upward trajectory is fine. You can't keep putting her in and pulling out of school. I'd do exactly as you suggest - email to say, this is what we're doing re. school.

I'd also respectfully disagree with the previous poster who said she won't be able to retain information at 84%. Dd's work slipped with she was restricting, but when she was eating well (i.e. gaining or even just maintaining weight) she smashed her school work at a lower WFH than that and her period came back. It really does depend on the child - she may well be fine. I was gobsmacked DD did so well in her end of year exams given that she was still underweight, missed a whole load of school and most of her brain was filled with thoughts about food.

@DarkBlueEyes great weight gain!

@Moomarre honestly DD can be just vile to me. And denying that there is a problem is one of the defining characteristics of ED. She continues to blame us for all the things she's missing out on, rather than anorexia.

@Valleyofthedollymix her weight gain seems to vary from 300g - 600g one week, then a maintain.

It is going in the right direction, just a bit slower than maybe would be ideal. She hasn’t had a loss for a few weeks now.

It was the Ed nurse that said about her operating at a 15% deficit cognitively compared to her “normal” peers. 🙄 She asked me if I thought it was fair of me to let her go back to school when this is the case.

I honestly think that ED nurse is a bit stupid - that's such an illogical thing to maintain. If anything she'll be eating more and better than her peers so has a 'surplus'.

@Lottsbiffandsmudge completely forgot to say how wonderful to hear your news. Your DD sounds like she's flourishing. Such an inspiring turnaround.

We have just had an appointment through to see the psychiatrist in December. Our first appointment with them since we were referred. It’s not in person but via teams. Not sure if this is normal but can’t see how they can assess someone over a video call.

@Bettybarkalot123 I hope the citalopram does the trick for you. I've been on sertraline now for two months and it is an absolute game changer I have to say.

DD is on olanzapine and 25mg sertraline for whoever asked. They will up the sertraline once she gets to a certain weight (though I don't know what this weight is, although I have asked) and if it has the same impact on her as it has on me I will be delighted.

It is really tough right now. She's pushing back and crumbing/smearing again which is SO bloody hard to stop.

Do you all wish you could fast forward your lives? I certainly do!

@betty my DD1 had an assessment with a psychiatrist via zoom. It really wasn't good, and in the end I had to get rid of him as there was just no therapeutic relationship there. new normal or not, it's not good IMHO.

@DarkBlueEyes thanks I’m hoping it will take the edge off and maybe help me be stronger for my daughter.

I do wish I could fast forward but often I wish I could rewind. I wish I’d listened to those initial thoughts and worries I had, I wish I’d made her start eating properly sooner. It’s even hard to look back at pictures of her now. We had a family barbecue at the very end of May and brag was the last time I can remember her enjoying food, like she used to.
So sad.

@DarkBlueEyes thank you for the recommendation of Neubria Rest. I've just ordered them online so DD can try them out when she's home next week. Her local pharmacy refused to sell her the Nytol the GP told her to try, despite the fact she is over 18 etc, so I got her some when I went to see her today.

I've struggled today, just had to go and have a cry in my room. It's just the relentlessness of it, the fact that we have the same bloody arguments about food or exercise every single day. I think I'd be scared to fast forward as not sure when/if this will get better 😢

I also think back, the last time I can truly remember dd enjoying food and looking happy and relaxed was at her 14th birthday. We had a small family gathering and it was a lovely day. They was about a month before the first lockdown and two months before dd first started restricting food.

I've had leave this week but as usual the ED has made sure I'm completely miserable, I've not had a holiday that the ED hadn't ruined in nearly 20 months now.

I will stop feeling sorry for myself by tomorrow and carry on as always.