Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread 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

Hi there. Just wanted to add how helpful the posts are above. I’m new to this club with my just realising my beautiful 12 year old has an issue.

speaking to the GP tomorrow. She is actually now eating again but only because I have said she can’t go to school. Given anorexia seems about control then I’m a bit nervous about this approach!

Hi @BeethovenNinth, our experience with the GP is that they fobbed us off for three visits over the course of five months when DD was losing weight. I now know GP’s have about 2 hours training for Eating Disorders so don’t always detect these. Push for a referral to CAMH’s and an urgent referral if your DD is losing weight rapidly and only eating tiny amounts. We lost months and DD ended up in hospital for two weeks which I believe we could have avoided. I wish I knew then about this thread for advice and support.

@myrtleWilson thank you for the advice regards to distress tolerance, I have previously seen your post red/amber/green and will revisit this to see what may help. I’m really pleased to hear of your DD’s progress - great news. I want to thank you for setting up this thread and for everyone who contributes - the advice and lived experience helps through the dark days, we are at the early stage of recovery and I have never dealt with anything so difficult.

Which brings me to my next question - DD has been offered some CBT therapy with CAMH. My thoughts are that this is too early, she does not engage with any of the family therapy and hates the hospital and all her memories are negative about the place. Also she enjoys school and her friendships, I’m of the opinion to not take up the offer as taking her out of school to the hospital for a long journey for an hour, I think will be counter productive, particularly in her GCSE year. I really feel that we the parents are doing the hard work and the CAMH’s meetings set us back. We are now above 95% wfh and so some of her pre ED activities are opening up so we are effectively working on her state of mind in real life rather than a therapists office. I have no experience of individual therapy, however a friend of mine whose niece had one to one therapy said it divided her family as the daughter would say things like ‘my therapist says … ‘ and it let the ED triangulate parents and professionals. What is everyone’s experience of individual therapy with their DC?

Hi Bee it's a common misconception that anorexia is about control, it's actually a genetic and biological illness that is caused by weight loss. It might seem like your dd wants control but actually the ED is the one with all the control and your dd is at its mercy.

So yes you are taking the right approach, the treatment is food, food and more food. 3 meals and 3 snacks a day and you make all the decisions around what food she eats. It needs to be high calorie/high fat and you're aiming for a minimum of 3000 calories a day. Food is non negotiable and you will need to learn to separate the ED from your dd.

I'm some areas you can self refer to ED services so it's worth checking if that's the case in your area.

The EDSUK fb page is useful for support and guidance.

D1 we've had mixed experiences with therapy, dd has had CBT and while I think it was helpful in giving dd somewhere to go with her feelings it didn't help change her mentality which was the hope.

She is currently seeing a school counsellor, she's only had 2 sessions but I'm really disappointed as she's seems useless and clearly has no clue about EDs 🙄

Personally I'd take any therapy offered as you might as well, you never know something useful might come out of it.

Dd started her GCSEs this week, seems okay so far although she's been nervous it's not effected her eating.

I seem to have dropped off this thread. DD1 was dx with a 'complex feeding disorder' in January 2021 at 15. Initially hospital and bed rest for 9 days, then home, bedrest and wheelchair until 80% WFH. For her, Olanzapine was the complete gamechanger.

We're a year on since she returned to school. School are trying their best but we're counting down the days (1 month, 6 days!) until she leaves school. Some concern about college because she has a different picture to us about what college will 'look like' (LDs).

In terms of diet we're good now. We spent a long time making fortified pancakes or giving 3 chocolate croissants for breakfast, etc. - anything to get the weight on because she was only 68% WFH. Over time, we've transitioned to a more normal diet, although she'd rather eat snacks than proper food.

She sits around 55-57kg now, generally. She's grown another 1.5cm. Today she's down to 53kg (93% wfh) because she's had a D&V bug and hasn't eaten for 3-4 days, but completely normal given the severity of the bug she's had. She's just started eating this afternoon.

We stopped the olanzapine a couple of weeks ago. We saw a slight uptick in bad thoughts about food and resistance to the main evening meal but not enough to worry about it.

I don't think we'll ever be able to completely forget about the ED or her propensity to it, but we're as close to normal with her eating as we're going to get, I think.

https://www.bbc.co.uk/news/health-61480898

I've not posted in a while, MN logged me out and it was a faff getting back in.
We went on holiday last month DD did amazing with food and had gained when we returned home.
Since then it feels like we're back at square one, we're at the ED clinic today so will know if she's lost weight which I suspect she has.
I fucking hate this!

@cantthinkofabetterusername we were planning a holiday but have decided not to go ahead, worried that taking the ED with us would ruin things. Shame for our younger DS. Do you think it is a case of the Mood on holiday being good - mood = food and then the ED punishing your daughter when you return.

It is thoroughly soul destroying - we can only have hope and I am finding this group supports my MH and resilience, we are only early in recovery though.

@NCTDN the ED nurse said referrals have quadrupled due to the pandemic. It feels like as the world opens up we are left behind with the consequences of lockdown on our DS mental health.

@Lougle your DD’s progress sounds like positive news. I seem to recall you have an app that calculates wfh, if so DD DOB Jan 2007, height 165cm and 52.7kg, could I ask you please calculate? Thank you.

@D1ANA22 I think being away from home helped her and the routine of eating at set times on holiday helped her too, she was like a different girl when we were away but now the ED is pushing back.
We've just got back from camhs she's had a slight loss but not as much as I was expecting. Onwards we push

@cantthinkofabetterusername glad it’s only a small weight loss, weirdly our DD eats on schedule each day like we have programmed her and she kind of tells her ED voice she has no choice, it’s the quantities that she restricts though.

Hope I’m not asking too personal a question but how do your CAMH’s meetings go - we have a parent meeting for an hour and another hour at the hospital DD with DH and myself - weight and obs taken, DD is invited to speak but doesn’t and we talk with the ED nurse and then DD leaves in a bad mood. Sometimes I think just having the parental meeting would be better and obs taken by a physician, DD gets nothing from the meetings. Is this your experience? We’re at the start of recovery.

@D1ANA22 we're still early in recovery too.
DD finds camhs helpful, her ED doesn't though and the voice will often tell her we're trying to make her fat and not to listen.
We see the same therapist every week and fortunately dd really likes her and feels like she can be honest. We're having family based therapy, I find it really useful to help me learn how to react and not react when the ED is in charge of her

@D1ANA22 96.17% with a mid-January birthday.

@Girliefriendlikespuppies DD1 has lots of stretch marks now. I was upset about it because I knew I had done that to her by making her gain weight quickly, but I still think it was the best thing to do. Putting on 500g per week, for her, would have meant a really long recovery time.

Hi Lougle nice to 'see' you! Yes I feel a bit guilty about the stretch marks but then I think bloody hell she's alive, sitting her exams and the majority of the time living a normal teen life so it was worth all the tubs of double cream 🤷‍♀️

We went to a prom dress shop after work today and it was lovely to see dd trying on beautiful dresses, they looked stunning on her 😍

D1 my dd never engaged with Camhs, she did initially as she quite liked one of the nurses but unfortunately he left and she hated his replacement from the off. In the end she didn't attend and I used the sessions for support for me.

Dd has made a few small moves forward this week, she has allowed herself a lolly and an 'extra' drink today which I know is nothing really but given how rigid she's been for two years to see her finally trying to relax the 'rules' is a relief.

Small steps that are sustained are so much better than big steps that are a flash in the plan.

Thanks @Lougle for the wfh calculation and agree with ‘baby steps’

@Girliefriendlikespuppies I note what you say about CAMH, aside from the medical obs the meetings with DH present are unproductive. CAMH offer individual therapy, my DD may use this opportunity to triangulate us as parents from the professional help, my friends daughter attended individual therapy and would come back saying ‘my therapist says …’, undermining the parents and setting back recovery. I’m also worried if we don’t take CAMH’s therapy offer that we may be reported for safeguarding - or am I being over sensitive?

A year ago today, dd was admitted to hospital totally out of the blue. We thought it was an initial meeting with the ED team but her wfh was so low (despite me begging professionals for months for some help) that she was taken in straight away. It feels like yesterday. She was hysterical, pleading with me to take her home and promising to eat all sorts. Looking back though, it was the right thing to do.
Apart from anxiety, she now has very little similarities to then. I've no idea about her wfh but from lougles initial calculations I think she must be around 100% which is at least a third more of her bodyweight compared to a year ago.
We were never offered camhs despite asking. I think it shows how it's a postcode lottery when it comes to support. We paid for private therapy and eventually got some cbt through the nhs just before she turned 18. She engaged with this well and the therapist said she had no concerns about her going off to uni this September.

@NCTDN that's brilliant. It's still traumatic when we think back though, isn't it? I remember begging for help for DD1 and when we were finally asked to go to A&E, I was midway through cooking dinner, so just abandoned it. We were taken to pards, she hungrily accepted the offer of a bowl of Coco Pops and orange juice. I felt so frustrated because I thought 'great, she's eating, they'll think she's fine!' but she was admitted 'overnight for tests' then her new Consultant came the next day and spent about an hour talking to us and told her she was staying for at least a week. She howled.

@Lougle and @NCTDN the memory of hospital admission makes me cry, we had to fight for DD to be admitted after months of being fobbed off by the GP. We slept in her room not knowing if her heart would make it through the night. Hospital admission was the kick start to her recovery and her doing FBT at home.

@NCTDN could I ask what did the private therapy and CBT involve and do you feel that it was beneficial? I honestly think if we as a family were set some CBT ‘homework’ then we would manage this better than DD talking to someone for an hour a week. DD doesn’t acknowledge she has an ED.

Both lots of therapy were very much for her, not the family. The private one asked for my opinion lots of the time but it was really a chance for her to talk without feeling she was being judged by us. Each week she had some
'homework' to complete which was usually the challenge to eat a particular fear foods.
The nhs therapy was slightly different because by this point she was a lot more accepting of the condition. The only appointment we could get was when her dad and I worked so after the initial one she went to them all on her own. I think because she turned 18 during this time, it meant that they didn't need to discuss anything with us.
DD didn't want to swap to the nhs therapist as she really liked the private one, but in the end I think the nhs one was more effective.

We are 4 months into family-based treatment after two hospitalisations. We have 2/3 meetings a week at the hospital. I'm signed off work to support her full-time. She's on meds. And she doesn't seem to be getting better. This weekend she took cheese out of her pitta and threw it in the bin. Broke flapjack into lots of crumbs which she put in her tea so we couldn't make her eat them. DH had to physically remove her from kitchen with her clinging onto the doorframe by her fingertips, banging head on wall, tore up meal plan, ran upstairs with lunch and tried to throw it down the toilet... She's actually lost weight since her diagnosis. Where the fuck do we go from here?

I’m so sorry nan

is it worth asking to try different meds?

@NanFlanders sorry to hear what you are going through. I live in hope and the proverb that ‘this too shall pass’; but it is so hard and please remember you are not alone.

Oh Nan I'm sorry to hear things are so shit, which meds is she on?

All you can do is get through one meal to the next, any food that is chucked or crumbled has to be replaced and keep going.

It's horrendous.

Are you on the Fb group? It's not perfect but I've found it useful and there's loads of residing the files.

Things have been up and down here, dd managed a day at work on Saturday. It was okay but she had to stand for much of the day and her feet and legs were sore when she got home. Yesterday she really tried it on with eating less than normal, we fell out by the end of the day and I insisted on watching her eat her evening snack (usually trusted to eat it independently.)

Not sure if it's linked to work or a coincidence, will keep an eye on it.

That said she's eaten much better today so who knows.

Hi @BeethovenNinth - thanks. We did ask today actually. She takes olanzapine, but a very low dose so might be a possibility of going higher. DH and I both got very tetchy with the (nice) psychologist today. We said we couldn't go on like this and he just said, "Well, what's the alternative?" @D1ANA22 - thanks for your wise words. Hope you are hanging on in there too xxx