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...

Love the video calling seems a bit ott, it wasn't like that when I joined.

I'm not sure if it would be worth it as you're pretty clued up and know what you're doing. Any question is now answered by admin which allows for no debate or discussion, the groups a lot poorer for it imo. In their defence I think they were dealing with an unmanageable amount of comments and dodgy advice to police.

@Girliefriendlikespuppies i thought that but didn’t want to judge too soon ! I spoke to a nurse about any parental support and she actually advised agaisnt the Facebook group because she said she had a few parents become almost militant and almost too harsh in their approach which had detrimental effects further down the line however I took that with a pinch of salt because it was an NHS nurse so they may dislike it for other reasons

Love they definitely have a one size fits all approach. That said I wish I'd be on the fb group earlier on when dd was first ill as I think I would have pushed through on a lot of things where I ended up backing down (leaving food, dropping a snack etc.)

I think someone mentioned another fb group which sounded even more militant tbh, it might have been the FEAST one...

How's everyone doing/surviving?

hey @Girliefriendlikespuppies
we're doing ok - third Christmas with official diagnosis of AN but much better than the last two.
We went for a middle eastern themed day - so I made challah for breakfast - which she ate and we went for homemade extragavangza of chicken shawarma for main meal which was more relaxed for her - she could pick chicken up to fill up her pita's - add fillings etc.

She had a major wobble in the evening - but nothing like previous years - no self harming etc. Generally, we're good - challenge is her marathon next year and re-setting her AN brain to understand she needs to fuel up to run that far

Hi @Girliefriendlikespuppies - much better than anticipated tbh. DD stuck to her meal plan and I plated up Christmas dinner for everyone else in the kitchen so she wasn't faced with a lot of food. Also visited my mum and DH's parents and ate in the garden (and coped with a few tactless remarks!) Sad we can't host or go to others for family as previous years, but nothing smashed and no-one sworn at! I'll take that!

Hi All, I’ve been reading your posts and Xmas seems to be going OK for most. For those new to this thread, I’m sorry you find yourself here - I can assure you of the experience and support you will receive from this group, it has been a lifeline for me.

Xmas and the last few months have been going OK. CAMH are discharging DD in the New Year and I am working on a relapse prevention plan (probably for my own sense of security than DD’s, we’ll see).

The last fourteen months have been the toughest of my life, and I have had a few seriously traumatic events in my life previously. I feel selfish writing this when I know my DD is suffering but my mental health is rock bottom, my anxiety is sky high and I think and worry about DD all day everyday, leaving nothing for anyone else.

I’m going to take a break from the thread and wanted to thank you all for the tremendous support and advice, no where else in my life has anyone understood and helped me as much - and whilst you are all ‘strangers’ I have opened my heart out to you in the comfort that you all know what I am dealing with, as you are as well.

I will let you know how we are doing - but in the meantime I wish you and your DC all well - I have never before come across such a determined and committed group of parents, I wish the world knew just how hard it is for us behind the closed doors.

All of you take care and wishing your DC strength.

Appointment yesterday. Dd has gained slightly, obs very good and therapist was happy she has eaten mostly normally over Christmas. Dd wouldn't engage at all as usual. I feel a bit blindsided as therapist mentioned discharging dd from camhs ED team to other camhs services that focus more on her MH issues. She seemed very focused on the fact dd has very regular periods and as such her body is obviously 'working well' on the amount dd is eating. She said all this in front of dd and god knows what effect it's going to have. Is this a usual procedure when weight starts restoring and periods are regular? Or could it be due to dds complete refusal to engage? Is she just wasting their appointment time and they want rid? I often feel a bit stunned at the appointments and can't get my brain in gear to ask questions.

Tbh I find the therapist quite ineffectual and she can be quite condescending to us both, but the thought of discharge and being put on another waiting list is frightening. I'm really annoyed with dd for not engaging and I keep telling her I'm not qualified to do it all myself and she needs to accept help. I need to know what to say/ask for in our appointment in 2 weeks if anyone can help? Thanks.

D1ANA22 wishing you and dd well. Thanks so much for your help and support. Take care of yourself and try and take time for yourself to heal 💐

@D1ANA22 Thanks for all your support. Wishing you and your DD all the very best.

@D1ANA22 good luck to you and your DD. I too took a break when DD was weight restored and discharged. I was v anxious too. I still am on occasion. Which gets me berated by DH and DD. But I remind myself that DD is in a place to roll her eyes because I fought so hard to get her well. Forgive yourself the worry. I promise you it does get easier. Look Fter yourself. We will be here if and when

@BagpussSaggyOldClothCat what wfh is your DD? Is she eating more freely? Is there stil a lot of AN behaviours? I would fight to stay with ED team if you are not happy to be discharged.
Not engaging is the norm..it doesn't mean the sessions aren't useful. If nothing else its another voice insisting on eating.
The other part of CAHMS won't be useful unless she is at a weight to access anything they may offer. What would she be referred for?

Hi Lottsbiffandsmudge dd is around 88% and gains about 1% every 2 weeks. They looked at her child growth charts and as she's always been a low percentile they seem to think her target weight won't be much higher. Even at 78% when she was first assessed she was having regular periods.

ED behaviours are present although it's not really about the eating, it's having meals at set times, having favourite meal/brands, knowing in advance what we're having etc. For instance if I change what we've planned for dinner she will struggle so she's definitely not eating freely at all. Her social anxiety is as bad as it's ever been and was very present before ED and food restriction was her way of coping. I feel if we can get to grips with that it will ease the ED maybe. I've looked into private counselling which we could just about stretch to if she was willing but she says she won't talk to strangers.

I'm not happy about possible discharge and will oppose if mentioned again. Even if dd won't accept help, I still need it.

Take care @D1ANA22

@BagpussSaggyOldClothCat - does DD have any interaction with other parts of CAMHS at the moment? My DD was under the ED team but as she neared 18 we had additional resources thrown at us including what was termed in our area "Intensive Home Treatment" - this team worked on anxiety and keeping her safe from self harm. It took a while to find the right groove (my experience was that CAMHS methods are more generally suited to young/mid teens rather than those on cusp of adult services). That said, when they clicked it was great - she'd practice social interactions like going to Starbucks and ordering a drink and sandwich as well as working on techniques to calm her anxiety when it was spiralling. It helped too because it meant the ED team could focus on eating/food knowing that the IHT team were looking at wider MH/anxiety.

In your position, I'd push for a twin track approach - so no discharge from ED team unless/until the 'IHT' (or equivalent named service) was up and running with demonstrable results. Don't be afraid to be pointy elbowed asking questions about what in their experience is likelihood of relapse and what would the protocol be for that.

Nan** glad Christmas went better than expected, that's definitely a win.

D1 I totally get it, I think a lot of us have a form of PTSD from the trauma of dealing with this. I'm sure I do, I find my anxiety levels will suddenly spike over fairly minor worries and I'm not convinced I'll ever fully relax when it comes to dd and food again.

Bagpuss my dd never worked with any of the ED Camhs team, she hated our main nurse and the psychiatrist!! I had a Teams meeting fortnightly with the nurse and dd had fortnightly obs done with them. Personally I feel unless they want to be there and to recover it's pointless forcing them to go. I used it as support for me, I didn't always agree with them but it was useful as somewhere for me to unload a bit.

Would that be an option for you? I wouldn't be happy with dd being discharged at 88% wfh with lots of ED behaviours tbh.

Morning everyone,
I’m currently helping my second daughter through anorexia (plus anxiety and depression), two years after my younger daughter had anorexia!! Younger DD is now fully recovered thankfully. Does feel like all I’ve thought about for 3 years is food though and I’m sure when I have time to process it they’ll be some PTSD. It’s so intense from day 1.

in the last couple of months we’ve learnt that the daughters of three friends have also been diagnosed with anorexia - its so scary how prevalent it is at the moment.

Could someone remind me how to calculate WFH please? a friend has just sent her daughters measurements to me and they sound really alarming.

Keep going everyone - we can do this xx

myrtleWilson what you describe certainly sounds what my dd's care has been lacking so far. Her social anxiety is affecting her whole life and undoubtedly stalling her ED recovery. I try to model good social skills when we're out and about as she won't ask for anything in shops or pay by herself (despite being able to before lockdown). She does go out with friends but they enable her a lot.

Her therapist is very nice but her tone and language make me cringe, let alone my highly sensitive dd. I can see how that sweet chatty approach works with younger ones but for an older teen it comes across as condescending. Wearing masks really doesn't help either.

Girliefriendlikespuppies it does seem pointless. The only way I can get dd to appointments is to say it's for obs only. Then we manage maybe 10 minutes of me talking to the therapist (same old questions- groundhog day) before I sense dd is highly uncomfortable and we wrap it up. That's all the help we are getting. A day or two either side of appointments dd's anxiety hits the roof. She'll constantly say she's not going and makes it really difficult. We're always late and that makes me really anxious, so by the time we get there I'm not in a great state to advocate well for her. I dread it tbh.

Hi Stylinson I'm so sorry to hear you're going through this for a second time with another dd. My heart goes out to you. Its awful how many of our lovely teens are going through ED and other MH issues. It's like another pandemic 😞

Bagpuss in which case I'd definitely not force her to go, use the sessions for yourself. Fwiw my dds social anxiety and anxiety in general has improved with weight gain. I think anxiety and a low weight seem to go hand in hand ime.

Stylinson welcome to the thread although I'm so sorry to hear you're going through this shitshow twice. EDs are really very common and I think teens are caught in the perfect storm of sudden awareness of appearance and wanting to fit in, social media plus needing a lot of calories for brain development and growth so slipping into calorie deficit is so easy. And that's before you add genetics into the mix. The fb page might be a quicker way to get a wfh EDSUK.

@Stylinson WFH is essentially a percentage of the average weight for a child your DD's age and a height (the 100% WFH).

Confusingly this 100% is the 50th centile on a BMI chart. So I work it out by going here
www.nhs.uk/live-well/healthy-weight/bmi-calculator/
and toggling around with numbers until I get the 50th centile. So with my dd's DOB and height, the 50th centile weight is 58kg. Then I take her actual weight and work out what percentage it is of 58kg.
So say the 50th centile weight was 50kg and your DD was 40kg, then she'd be 80% WFH.

I don't know what DD is as we haven't weighed her for months but I'm guessing she's around 85-90%. However, she looks well and her eating is miraculously normal so I'm happy with that.

Well done to everyone getting through Christmas one way or another. Take it as a win. Last Christmas DD ate surprisingly well and the made herself sick so it felt like her gift to us was a whole new eating disorder. Fortunately (as far as I know) this never happened again and this year she joined in and was no stress. I can't believe how different it is, yet remain vigilant. I hope everyone else ends up with a greatly improved year.

@Fluffle55 sorry that you're here. Don't beat yourself up about not doing something sooner - we've all been there and you're doing something now. We can all offer our experiences and there's no judgment here.

@D1ANA22 you're probably wisely staying off for your sanity but if you read this, really good luck for the next few weeks.

We've made it through Xmas and NYE. Here's to a better 2023 everyone. Hang on in there. Good luck to you all. X

Last night was difficult. Dd was holed up in her room and dh was struggling with no seeing her for days and I'm afraid I poked the beast a bit due to the sheer frustration of it all. We had lots of tears from dd but she calmed down and we managed a good chat. The only way we can seem to move forward is by causing upset. It's exhausting.
Anyway, it's all calm this morning. Dd was up early and accepted a large bowl of creamy porridge. Happy 2023 everyone. Sending you all love.

Happy New Year everyone. I hope it brings you all some positives.
@BagpussSaggyOldClothCat I think that poking the ED is inevitable and almost desirable. It is hard to not feel like one is maliciously making one's DC distraught but I realised that the ED was doing that not me. I was merely making reasonable requests. Although DD hated the ED being separated from her I had to think like that for my own sanity.
And yes I agree my DDs anxiety has improved massively with sustained weight gain and maintenance.
Interestingly my eldest DS went to uni this year and lost weight just because he wasn't organised enough to cook properly. His mental health took a nose dive and his anxiety spiralled. All my kids are lean and athletic naturally and I think it's easier for them to become underweight quite quickly and it has a massive impact on their well being.
That's why I am a not someone who buys into the thinking that a low wfh% is 'normal' for some. Imo its best to overshoot and come back to a natural level from that side not the other way round. Certainly for my kids it's better if they are slightly over than slightly under.

I agree lots when I was a teen I lost a lot of weight when I went on an ill fated college trip abroad for two weeks. I was ill the entire trip, barely ate and came back home having lost a stone in weight.

My mental health took a massive nose dive, I was anxious to the point of not being able to leave the house, I have vague memories of following my mum round the house (I was 17!) and I couldn't eat in front of people. It wasn't an eating disorder as I had no interest in looking a certain way or fear of food but definitely disordered eating for a while.

The anxiety was so bad that I ended up failing my A levels.

Once I regained the weight the anxiety went and I actually signed up for Camp America and had an amazing summer in California.

In my case the weight loss caused the anxiety and weight gain cured it.

I've noticed a similar pattern with my own dd although she still has a few ED thoughts and behaviours which I didn't have to contend with. Her anxiety has been dramatically better now she's a good weight.

Happy new year everyone, here's hoping for a happy, healthy and peaceful 2023.

And interestingly I now think my DD was underweight for a lot of her childhood/ early teens. Her anxiety is lower now than then ie from years before she had an ED. And yes maybe I learnt to manage the anxiety better with her but I do honestly believe she wasn't eating enough esp when hitting puberty so say 11ish. And that was nothing to do with her as I fed her as she was a child! I didn't realise how many cals preteen girls need. The boys never stopped eating and so I fed them bigger meals portions but didn't do the same with DD at the same age. As she was/ is an athlete I now believe she was hovering around or actually a little underweight for a long time. So when the ED hit it went dramatically wrong dramatically quickly.