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

@D1ANA22 in our experience time has been a healer. Dd has been weight restored about a year. To begin with I was still having to be very much in control of the food. There was no flexibility and she still relied heavily on a meal plan, we couldn't eat out and she works eat nothing else.
Gradually it has normalised. I now am not really involved as she self moderates her food. She can eat out and deal with changes to routine more easily. She still has some behaviours (leaving bits on her plate, avoiding certain fast food etc) but she is unrecognisable from a year ago.
So yes I believe there is a time element. I have read it takes at least a year for full brain healing once weight has been restored.
I can't help with the silent treatment but it sounds like the ED is punishing you (and her).

Oh and we did a unit on Perfectionism with her CAMHS key worker once she was WR. But we were discharged in Jan. They left the door open but no more meetings (which DD hated anyway).
So no we haven't done anything else except plod on.

Thank you @Lottsbiffandsmudge and @Girliefriendlikespuppies - that’s reassuring, being constantly ‘on alert’ with the ED I always think I should be doing something and doing more if that makes sense. DD is in a routine with her eating, we’ll see how therapy goes and wait - it seems that there is nothing further that we can do. When we first were at CAMH I naively thought great, they can provide therapy and all will be well. I didn’t realise that the job would be delegated to us and in fact if you break down the Maudsley method it is a refeeding plan of 3 meals and 3 snacks and hoping the brain will heal. I know ED’s are complex but after years of research that is basically still the treatment.

Yep D1 that's pretty much it.

We've had a shit day today, had tears over some Doritos she had as part of her lunch, left more than half and pushed the rest of lunch around her plate.

Then a big increase in ED behaviours I thought we'd seen the last of, spitting, sitting by an open window (trying to get cold) and having a cold shower.

I'm so fed up. It's been 2.5 years of this shit.

She's been weight restored for at least a year, eats at least 2000 cals a day and it still feels like one step forward and two steps back.

I think finishing school and all the upcoming changes is what has triggered her.

@Girliefriendlikespuppies I’m sorry you had a rubbish day yesterday - I get so upset when I see the ED behaviours creep back in, window open, cold baths and wearing t-shirts outside in the winter. It’s the bizarre behaviour beyond the food that makes me realise just how complex the ED is and what we are up against. I met an old school friend yesterday and my close friend knows of three girls locally who are suffering from anorexia, all similar age to DD, my heart breaks for this generation of children.

I hope you have a better day today. DH has asked that we do nothing for him for Father’s Day, no card, meal, presents - DD is not speaking to any of the family and he said it would upset him more to have a ‘false’ Father’s Day, I’m sick of all the things the ED has robbed from us.

Why is she making herself cold?

Nc my dd thinks it burns more calories, I also think it's a way of punishing herself a form of self harm. The spitting I find more confusing, I'm not sure what she thinks that's going to do

Dd has no contact with her dad so we try and keep Father's Day fairly low key anyway. Think we might go to the beach later for a break.

The 'high alertness' doesn't dissipate quickly in my experience but I'm so relieved that we're not in that place where you know a bomb is going to go off but you just don't know when and what the trigger will be - for those of you still in that place, my heart goes out to you - it is exhausting and traumatic but I hope you'll come out the other side.

Dd comes back from her holiday tomorrow - am so excited to see her! There have been a few issues not helped by her forgetting to take her fluoxetine including a random lad calling her fat 😡and the inclination to body check will have been hard given the myriad of bodies lying by the pool, but she's perserved, kept up her eating, used distraction techniques when her anxiety spiked. Tomorrow afternoon I'll be the giver of the biggest hug ever.

@myrtleWilson it's good that she told you those things though. DD goes away next week with friends - I'm trying to keep out of it but it's so hard!

I feel similar to you to many of you here. Am quite worn down at this stage. DD is at 85% WFH and weighs more than 1 yr ago, before the ED started (although as she is older that would have been expected I suppose). She has always been thin. She actually looks healthy now but her behaviour is not. She hates the way she looks, constantly calls herself fat, still tries to overexercise and cries after eating. She still however communicates well with us when not in ‘ED mode’. She is having FBT once per week but while she was on the waitlist she had private therapy.
I just don’t know how she will change mentally but It’s good to hear that time has been a healer.

@Namechange22temp I take comfort in what @Girliefriendlikespuppies said - keeping our DD afloat until she makes the decision to recover. We can’t do anymore; keep pushing the food, tackle the ED behaviours, tolerate their distress and wait for the switch to flick in her mind. We have always been able to fix things for our DD - we will support and love her and hope that this is enough. Our lives have been on hold since DD was diagnosed - we now have to live our lives albeit adapted to accommodate the ED but not let it dominate our family.

Thanks @Dianna22. We’ll just keep plodding on. I need to remind myself that progress has been made. It just takes a long time. I thought I read somewhere that only 20% of anorexics fully recover. I hope it is more than that. On the other hand the therapist at FBT said something about how sometimes those suffering with an ED eventually get fed up and sort of just give it up. She also said it can exacerbated by teenage hormones etc.

I definitely think teenage hormones play a part, a lot of my friends had ED when I was a teen and I definitely had a 'phase' of not eating enough. It did all seem to settle a lot in our 20s.

Today has been better, we went to the beach and she's eaten much better.

Now just to get through the last few exams and prom.... 😬

@Girliefriendlikespuppies @Namechange22temp I think the 20% full recovery rate includes adult and chronic AN sufferers, I’m hoping the recovery rate for adolescents is higher. A therapists said to us also that the patient can get ‘bored’ of the anorexia and a friend of mine ‘grew’ out of it when he said he was contented with his life - likening the anorexia to depression - no amount of saying ‘feel better’ changes a depressive’s outlook, they get there themselves. It’s hard to keep plodding on however remind ourselves where we were and how far we have come.

I’m think the silent treatment is also a hormonal phase, it has gone on for weeks now - I have never known my DD to be so committed, but I do know the ED is powerful. She has also fallen in with a bad influence at school which doesn’t help.

We have GCSE’s next year - I’m dreading that time.

I think I've probably not helped myself or dd by allowing certain behaviours to continue. I wish right at the beginning the ED team had told me the importance of making sure dd finished all the food I gave her. I think at the time I was just so relieved she was eating something I let a lot of the left food go.

The ED team actually told me not to worry about left food and said as long as she's eating enough overall it's okay. They even said in some cultures to leave food is completely normal and it's seen as rude to finish everything 🙄 when I pointed out that I was worried dd was leaving food even when she's still hungry they just squirmed a bit.

Now I'm in a situation where she won't finish anything, has to leave something on her plate and usually pulls food apart and makes a right mess first.

That's why for the newbies on here I strongly advocate making them finish everything from the start. I wish I'd been told that.

If I could go back in time to the start I would do so many things differently.

@Girliefriendlikespuppies that resonates with me and our DD, my sisters friend had anorexia over thirty years ago and still leaves food on her plate now. I want to tackle this behaviour (in hospital they made her eat all the food on her plate) - we compensate by serving more to accommodate the left overs, which is accommodating the ED. Going to speak to DH later to make this the next challenge.

if you don’t mind me asking what other behaviours you wish to tackle? The ED is so complex.

Well, I think we can take the holiday as a big learning opportunity. She had a good time but it all went to pot last night and her and best friend fell out - still not resolved.

However, Dd has realised how much she still needs a structure to her day - not just in terms of eating but having little to do aside from laze in the sun really didn't help her brain/gave opportunities for the anorexia to sneak in. When she was really ill we had her day mapped out by 30 min slots and whilst we don't need to do that now, not having work, gym etc really didn't help.
They were in an all inclusive but the food was rubbish (they're 19 so not affording 5 star holidays) and that meant it gave the anorexia another reason not to eat - 'you don't even like it'.

However, she did eat but is probably a little bit in deficit, she knows that she's not ready to push out of her comfort zone in terms of bikinis etc and she knows that routine and structure is important to her. In a month she's off down to Cornwall with her boyfriend for 4/5 days so lessons learned all round.

@NCTDN - Is your DD going in a big group or just a couple of friends. One thing we felt was that DD's recovery in social terms (going out for drinks or a meal) masks a lot of the more intrinsic aspects of the illness and recovery and therefore friend was definitely unsighted/not advised by us about the day to day challenges she still faces. If it had been a bigger group I think this would have been less of an issue as group interactions give a different frequency to a holiday rather than basically spending all your time with one other person.

So, mixed bag but positive learning I think, plus she has a lovely tan and I got a nice present!

Good to know these things. She's going in a big group which by the sounds of it is a good thing!

D1 other behaviours include smearing or crumbling food, having to exercise (walk) every day and being very rule based around what she can and can't have.

So for dd one rule is she only allows herself two non water drinks a day. Generally this is juice or tea with breakfast and milk in the evening. Although if we're out she'll sometimes have a fizzy drink with lunch (but then no milk in the evening 🙄) I wish I'd insisted on at least 3 drinks a day as a minimum.

Myrtle I can remember going on holidays at that age and falling out with my friends! That's great she managed it and hopefully you can get her back on track with the eating side of things now.

We've got two weeks booked in Portugal in a few weeks, I'm kinda regretting making it two weeks now as dd definitely isn't as far forward in recovery as I was hoping she would be when I booked it!! Hopefully it will be okay, I think I should be able to get enough food into her and hopefully a change of scene will do us both some good.

My DD leaves one of each type of fruit and 4 pieces of each veg, picks crumbs off biscuits or flapjacks, and will only eat with a cake fork or teaspoon. Hospital advise focussing on getting the food into her however at the moment, but i do find it oddly upsetting.

@NanFlanders DD was using children’s knives and forks from when she was a toddler, sometimes chop sticks and always the same teaspoon. Once I had a half hour debate with her with regards to - a teaspoon v table spoon. To stop this behaviour this cutlery went ‘missing’ including a favoured cup that was ‘accidentally’ dropped on the floor. Like you I find it upsetting that a bright adolescent resorts to child like behaviour - getting ‘rid’ of the cutlery did work.

Her crumbing of biscuits in my car made it look like the bottom of a birds cage. I’m glad that these behaviours have mostly disappeared now 6 months into recovery.

I'd try and stamp out the leaving food behaviours now nan, we're over two years down the line and this is still an issue here. I feel like it's held recovery back tbh.

Today on the way to a doctor‘s appointment for a separate issue after school DD admitted to me that she had ordered laxatives on Amazon. I immediately canceled the order. She also told me she had not eaten her snacks as she said and it sounded like lunch was tiny. So I marched her in to a shop and made her eat a sandwich. She resisted a little but ate it - she was probably quite hungry! She feels guilty quite easily and is very honest and therefore usually owns up to things voluntarily but it’s still scary that she tried this. I hope maybe deep down she told me as she wanted me to take control but it’s hard to tell. At the Dr.‘s (who knows about her ED) I asked him
to explain what laxatives do and he also told her nicely that she is too thin (although her weight is actually almost acceptable). The more she hears that from Dr’s etc the better. It will hopefully reinforce it. The other problem is she keeps looking at girls posing online / instagram etc., how slim they are etc. Any advice on that? I have the proper controls on her phone for her age and tried blocking instagram etc but she always manages to see something.

Anyone else having an issue/had an issue with the end of GCSEs? And if so, how did you/how are you planning to handle it? DD has actually started gaining during the GCSE period - and it has been the main incentive to eat (hospital had to sign her off twice a week to continue). She is however adamant that she will restrict again as soon as the exams are over. I am sick with worry. I was hoping doing National Citizen Service over the summer, but she's had to be pulled, because she's refusing to have meals supervised.

@NanFlanders school is a huge incentive for DD as it’s where she socialises, and also if she doesn’t follow the meal plan then there is no school. With the summer break coming up my plan for eating is to follow the routine of school times for snack / lunch / snack - however I’m conscious that there is little leverage / motivation for DD, and naturally we all eat less and do more activity in summer so predicting weight loss.

What other motivation is there for your DD? Meeting friends and all the normal teenage activities are difficult to manage with an ED, and daily planning for the big summer break seems daunting right now but this is what we’re going to attempt - to give her a near normal life within the constraints of anorexia.