teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

Yeah that would have stung me a bit Lougle as well. That's great your dd has gained weight though and I guess demonstrates she absolutely can eat when push comes to shove!! Hopefully they'll give you a plan and more support this time for when you're home.

Good luck valley

We've had a difficult morning, Camhs via zoom first thing who really didn't have anything useful to suggest. Although she did agree that I need to stop work for a bit and said they can write a letter to my gp or employer explaining my circumstances so I guess that's helpful.

We then had the dog walk from hell, dd was not impressed with my suggestion of a walk so walked off in the opposite direction so she could walk a much longer route. I waited for her but by the time she came back she was refusing to talk or look at me. I'm wondering if I'll have to stop all dog walks (?? Send the dog to my mums for a bit) for her to get the message that that behaviour is not okay....

I’m sorry you are all having such a tough time. This bloody illness sucks and I swear it’s as hard on the families as it is on the sufferer (in some ways harder, because we know it’s wrong and they just don’t care).

DDs dietician in hosp was terrible (although not all her fault). She didn’t believe how many calories DD had been having so gave her so little food that DD was crying with hunger (one evening meal was 3 chicken nuggets and nothing else... DD was almost hysterical). We also had the issue that the cereal boxes they gave her for breakfast were out of date (by 9 months!), they had none that were in date and DD went into meltdown because she’d psyched herself up for cereal so of course couldn’t eat anything else.

Our dog is suffering as well - she’s always been very protective of DD and now that she is crying so much the dog is getting more and more anxious (I know how she feels!)

I wish better days ahead for all of you. God knows we could do with some.

That sounds awful @exLtEveDallas

Our dietician is the same one as she was seeing as an outpatient. She's had a chat with the staff about the importance of building meals slowly. I think they were so excited that DD1 was compliant, that they didn't follow the eating plan.

Oh gosh that dietician sounds like an idiot @exLtEveDallas

We met the therapist. Over an hour and a half but we're now going to meet her via video once a week and in person once a month (to check weight etc). Both the therapist and the nurse were lovely and I felt that DD responded well to them, although she said she struggled to express her thoughts.

She's not allowed any more of her oat/almond/coconut milk crap. Yay! I've been wanting her to have proper milk for ages but it took someone in authority to tell her.

I feel we're now in the system and fingers crossed we can carry on as outpatients. Therapist reckons she needs about 3kg more in order to be allowed back to school so that's our goal for whenever they reopen.

@lougle where have you got the 50kg figure from? Therapist mentioned that she should be 95% height for weight which would be about 51 if I've got my calculations right. However, she's always been on the 75th for height and 25th for weight quite healthily so I don't know that it takes account of the fact that she's so slight.

Good news, not so good news from the most recent posts - sorry that dietician caused additional problems Eve and that sounds really tough about the dog walking girlie..
valley and lougle am glad you've both had some positive progress!

We had a meds review today but no changes made by the Consultant but she wants DD to do some 'reconnecting with past' exercises which focus on memories of when DD exerted positive independence to remind DD she has the ability to look after herself safely (at the moment she is 100% reliant on us).

DD recognised the exercises as part of a recovery technique which encourages the patient to remember a younger self and think about recovering for that person as that person has had their life stalled. Apparently it is useful as recovery for present day version of yourself is harder to motivate yourself for.

In that vein, DD watches a youtuber under the name Doraisexploring - a older teen (19 I think) with an ED who is in recovery (under direction of GP/parent). The videos are good and seem to be having a positive impact on Dd (some of DD's thoughts about trying new foods have come from Dora). I know recovery isn't linear and there may be trouble ahead but we watch them together so we can all chat. I thought I'd share in case any of you wanted to check her out - as much for our own education as anything else. Some of you have younger DD's than me so may not feel it is appropriate to watch together...

"@lougle where have you got the 50kg figure from? Therapist mentioned that she should be 95% height for weight which would be about 51 if I've got my calculations right. However, she's always been on the 75th for height and 25th for weight quite healthily so I don't know that it takes account of the fact that she's so slight."

The 50kg figure I took looking at the minimum weight from the BMI healthy range for her height. If I was using WFH 95% then she'd need to be about 52 kg.

I think they're only rough guides based on the median of female population.

For example, when I asked the Cons whether they take into account that her growth has probably been stunted, given the 'norm' for our family of being quite tall, he said that she's likely to be at her current height now, because her periods have started, so they just go by weight for height.

I get very confused by the weight for height percentages thing. At our initial appointment with camhs last summer they said dd was 91% but they've never said what weight we're aiming for.

In my mind dd needs to be back to her pre ED weight plus a bit extra so gain another 4-5 kgs at least. Dds always been quite an athletic build, she was really strong before this started 😕

This lady was recommended on the fb page https://tabithafarrar.com/?fbclid=IwAR1mIgSOf-PqOBHkrziBfI9IX6OFxbNIHPXkBTpEG8zndd1oNLg3VlvM8fI the theory of anorexia being a biological response to weight loss is really interesting.

I was told 95% today.

Hi all some good and not so good news from today from everyone. Glad some have had a more positive day.
Everything I have read on target weights says to go over by a good margin to give a buffer for growth (if that is relevant), puberty (again if relevant) and illness. But still understanding a target weight is difficult, I have no idea what DD weighed pre her ED as I never encouraged weighing with my kids (thinking it would make them paranoid....ha ha). Her school didn’t do a year 6 weight and height check so the only accurate weight I have is from when she was 12 months old..... somehow without ever having met her her dietician has told me she is now 83% wfh.... go figure...
Difficult day here on day 2 of my exercise clamp down. She reacted about as well as expected to the idea of me accompanying her on her permitted walk today. So we set off and she goes so fast (it’s really power walking which I am quite sure was not in her coach’s mind when he set up the exercise plan) that I could not keep up. Any attempt to run after her made her go faster. So in the end that was a big fail. She then wanted to meet a friend after school so they could walk and I said no. And we had a 2 hour meltdown. Which included suicide threats, kicking, head banging and finally pacing round the garden. I had to count backwards from 5 with the threat of losing tomorrow’s permitted activity to get her in. Like she is 3 again.... god knows what the neighbours think of me. Not that I really care.
Then she ate dinner, took both of her pills (one at 6 and one at 8), drank her smoothie (which I have started adding double cream to) and ate a rice cake (extra to plan).... so I went from being a ‘old fat cow who needs to grow better legs’ to ‘don’t leave me until I am asleep’ ....
This is totally exhausting. Got to stick to it though. The ED is just testing my resolve by throwing insults, tears, furniture and a lot of other crap....
Good luck for tomorrow everyone.

@Lottsbiffandsmudge what an awful day.

Re. WFH, I think they take look up the age of the child who sits on the 50th centile for their height. So, for example, they may be the 'median height of a 13 year old', even though they are 15. Then, they look up the BMI that is on the 50th centile for that age (not their actual age). Then they divide the actual BMI by the BMI they looked up, then x 100.

So for DD1, they've done 13.67÷20×100=68% Although with DD1 I wonder if they've used BMI for age, as the growth chart shows her height as above 50th centile for all ages up to 20 years old.

Lots your dd sounds very similar to mine on the exercise and general up and down behaviour front!! Ystd Eve after a horrible afternoon she cuddled up and we watched cute animal videos on her phone. It was lovely but so at odds with her telling me to fuck off all afternoon!! I put double cream in her smoothie as well and someone said about adding a teaspoon of avocado oil which is another 100 calories so bought some to try as well (praying she can't taste it!)

I've got an appointment with the dietician tomorrow so will ask about dds weight for height then.

I was reading on the fb page that getting a zinc supplement into them is meant to be as effective as an antidepressant, something to do with zinc deficiency causing all sorts of issues in the brain...

How confusing... and does it take any account of them not actually being 50% for anything pre ED ..I have heard a lot about state not weight ie putting on weight until their mental health improves....anyway either way there is a long way to go before worrying about that. For most of us...
And I have no clue how to deal with the exercise. I find it painful to watch. She says it's about keeping fit for football but it so isnt. It is so the ED. Hence trying to cut out all money 'permitted exervise' first before dealing with the v skewed content of her permitted stuff. If she was actually at her training sessions with her coaches she would be doing less than she is.
Bloody lockdown

Non permitted sorry

@girlfriend my problem is getting out to buy the cream as she is with my constantly. Except when she is locked in a room swearing at me. My mum is coming over quite a bit to supervise her. Tomorrow I am going on my first BEAT course via Zoom. Quite nervous tbh

No, it doesn't. I think it's just a guide.

According to this www.paediatricpearls.co.uk/wp-content/uploads/2020/04/MARSIPAN-risk-assessment.pdf then they can be 85% weight for height and the therapist said that too, although they prefer 95%.

I worked out what the median was just by fiddling with DD's dob and height on the NHS BMI calculator.

Mind you my oldest friend just pointed out that she weighed 7ish stone at 5 foot 7 all through university, most of her calories through alcohol and had periods etc. Mind you, she nearly failed her degree. And friend who I was walking with today says her 15 year old is over six foot and 8 stone. Clearly both these examples could do with putting on weight but there are variations in body shape and size.

That said, I agree that you want to have a buffer. Plus I don't want to get too fixated on numbers.

Sorry to those having to deal with challenging behaviour at the moment.

DD just hurt her foot doing her ball mastery session... is it wrong of me to be secretly pleased....she is limping badly. It should make tomorrow’s rest day easier to manage. I hope...

Did you trip her up on purpose Lotts?

Not unreasonable at all lots 😉

This is something I think about valley I guess everyone's healthy weight is fairly unique and the ED issue is about the intense fear of weight gain. So I guess if you're super skinny but eat like a horse and couldn't care less if you gain weight that's okay. Unfortunately for my dd being super skinny came at an extremely high cost ☹️

I have got friends though that sit at around 8 stone quite happily and eat what they want 🤷‍♀️

Not sure if anyone had a look at the link re the biological theory of anorexia? From what I understand the theory is that when you lose weight the primal/animal brain assumes there's a dangerous food shortage so starts preparing you for migration. In preparation for migration (to somewhere with more food) the fight and flight response kicks in hard and and also appetite is suppressed. Apparently this is common in lots of animals not just humans...

I've had a wobbly day and burst into tears in a Teams meeting 😬 tad embarrassing. At least my colleagues can see I'm a wreck I suppose and hopefully understand why I'm going off sick for a bit after tomorrow.

Just going back to the above theory it does tie in with an experience I had as a 17yo. When I was at college I went on a school trip for two weeks which unfortunately was a disaster as I was ill with stomach trouble the whole time. I got home almost a stone lighter 😳

What followed was a year of severe anxiety and panic attacks to the point I could barely leave the house. I had never previously suffered with anxiety and (luckily) didn't develop an ED possibly because the weight loss wasn't intentional.

However I eventually recovered after I left college (having failed by A levels) getting a job in a very boring shop and regaining the weight I lost....

It's taken me over 20 years to make sense of that!!!

DD1 is doing really well with eating in hospital. So much so that I'm wondering why we're here and why she hasn't been doing this at home. I am worried, though, that she's figured food=home and will eat much less again once home.

She's been very angry and shouty about being in hospital, but the Consultant told her to zip it and that he was in charge!

Her Consultant was worried that she'd need her electrolytes IV this morning, but her blood wasn't terrible and he was happy to continue with oral as long as we increased the Sando-K to 3x daily. He's also prescribed laxatives (lactulose and senna) as she gets really constipated.

If she stabilises her blood levels and intake for 2 consecutive days, they may let her have some home leave over the weekend.

I've got a banging migraine so I've had to take loads of meds.

Her weight was down again today, slightly. 37.3 on Monday, 38.1 yesterday, 37.78 today. They've said it is fairly normal.

I feel like I've gone crazy. One minute i'm thinking "wow, she's put on 800g (500g based on today's weight), what are we even doing in hospital?" then I catch myself realising that she is still 12-14kg below a healthy weight.

I think I must be still processing that she really is ill and she really does need help, after being fobbed off for so long. Her Consultant told her she was in a real pickle and she needed lots of help to get out of that pickle, and I was thinking "well she's not that I'll", but I think she is

@Lougle it is surreal isn’t it feeling so happy about a 800g weight inc when they are so underweight. The consultant sounds great! Funnily enough my DDs dietician said she was in a pickle maybe it’s a ED thing! Glad she is eating.
@Girliefriendlikespuppies I have read somewhere that there is a theory that genetically predisposed people get EDs when they restrict their intake intentionally or not... ie the genes needs trigger and malnutrition can be that trigger.
My DD maintains that she only started restricting her intake because some girls at school told her she ate too much (she used to eat a lot as she does so much sport) and that she got confused about what was right to improve her fitness and keep it going through lockdown number 2. Plus all the healthy eating crap they get fed drip by drip all the bloody time from everywhere has not helped.
And now here we are with a full blown ED and exercise compulsion and it is no longer about doing the right thing but satisfying eh ED with exercise and not eating some foods.
So this theory sort of rings true to me.

Hello everyone
I hope you don't mind me coming in on this post, but I have been following the thread and bit my tongue so many times - so here goes.
I was diagnosed with anorexia at 13. I also have OCD. I relate to so much on this thread (although I am now in a much better place and studying for a masters in clinical nutrition and eating disorders). I wanted to offer some advice on the things that helped me.

Firstly:

• I was incredibly depressed before I officially 'got' anorexia - although I didn't know it. I thought it was normal to feel so hollow and empty. I was very badly bullied at school (but didn't tell a soul). I was never a fan of breakfast (I hated - and still hate - milk so would always eat cereal dry unless it was cocopops!). I was quite a cuddly child (it was puppy fat) so thought that loosing weight would fix my unhappiness. It didn't - although lots of people said I looked great, the bullying continued over other things anyway. I restricted more and more until I lived off a satsuma at lunch and supper in the evening. The school noticed and called in my mother who took me to the doctor who referred me to CAMHS. In the meantime, we went to priory to speed up the process. However, I would caution rushing to private treatment as I was told that 'I had a wee weigh to go until my weight was really bad' - a red flag to anorexia. They were more than happy to prescribe 3 different therapies a week (costing a small fortune) until all our savings were gone. Unsurprisingly, it wasn't long before my weight was a huge concern. However, we had run out of savings so I was referred to CAMHS. To cut a long story short, I did end up on an inpatient unit as I deteriorated over the following year.

I would urge you all to look at the Orri website. I didn't go there (sadly) - it didn't exist when I was poorly. However, their blog is very interesting and they have some excellent resources.

What advice would I pass on to people suffering? Here goes:

• Family - we had to 'hunker down' as a family and focus on building up as a supportive unit. This is very difficult as there is so much anger, fear and sadness. However, please be aware that friends, grandparents and other family members can be very insensitive (without realising) about weight (whether it is their own or your DC's). I would urge you to talk to family and friends ahead of them interacting with your DC and ask them to not to mention weight/looks appearance in any form. Even society's attitude towards weight can be really tough when you have an ED and are being told to put on weight (especially if you have body dysmorphia). It is hard for siblings to understand, but try to get them on board. If they exercise, try to get them to be mindful / discrete about it so that it doesn't 'trigger' your DC (e.g. plan a time which is likely to be calm for your DC). I wouldn't advise out-right lying as this just made me paranoid. If they are exercising, be honest about it and say 'XXX has gone for a run' and if it is challenged, it is helpful to say 'but I love you and want to keep you safe, your bones are too frail at the moment if you fell over.' Reinforce that your behaviour/the restrictions are driven out of love (Anorexia will want your DC to feel unloved).

*Self-care - this was impossible for me. I could not waste anything nice on myself - no nice bath stuff, clothes etc. HOWEVER, my mother, was incredible (I am nearly crying writing this). My mother would gently massage my dry hands and cold feet with hand creams and gently wrap me up in soft and fluffy bed socks. Anorexia didn't like this at all but she would calmly say 'you are my darling NAME and as your mother I want to look after you and protect you'. These small acts were like seeds of hope.

• Following on from the above, a lot of my Anorexia was driven by feeling worthless/unloved - I thought the world would be a better place without me. My mother would just hold me (even after I was utterly dreadful to her) and just say that it we had each other. For me, Anorexia was about disappearing - she would say things like 'I need you and love you, let me just take care of you.' *Distractions - jigsaws in a calm place, a pet (our dog was a hero) and books. I cannot stress the last one enough. Escaping into a good book is such a good way of immersing yourself into another world (it helped me and my Mum). Scented candles, fun films etc. *fear foods - I can't be too much help on this one as we always ate home-cooked food as a family and I have always cooked since a young age. We didn't eat chips anyway (or though we would make homemade wedges etc). I would say (and not everyone will agree), pick your battles. If pasta is hard, try wholegrain versions. If rice is difficult, try brown rice/quinoa etc. It is about baby steps - and continuous exposure - but it is a good way to gradually build up (I know it can be expensive). My mother ate what I ate - this was incredibly helpful for me. *talk - continue to talk and laugh with your DC. Even if they ignore you. The inner battle of anorexia is awful but I promise you that every kind word is remembered. My mum wrote me cards and would leave them on my bedside table (I still have them in a box under my bed). She also bought me a bracelet which I still wear to this day (a circle which shows her unconditional love).

I think I will stop there as I know this message has gone on for a while. What I want to stress is every person is different so try not to compare. One thing that I would tell any parent is that no one chooses anorexia and the thoughts are intrusive, bullying and dreadful. The best thing you can do is show up every day and continuously tell your DC that they are loved and your world is a better place because they are in it.That last sentence will really shock the voice of Anorexia but will help them.

Wishing you all the best. xx