Teen Eating Disorders Thread 4

[SoTiredNeedHoliday]

Starting a new thread, no 3 is full

@Rollergirl11Rollergirl we have had the same issue unfortunately. Went back to CAMHS yesterday as she has lost 2.3kg since 7 July and they refused medication. Offered CBT which I'm asking questions about but who knows if it will eventuate.

DD is now refusing food more and more and becoming more entrenched. I am not in a good way and increasingly panicked, although we had a good week recently and she put on some weight but that will all be gone soon with the number of meal refusals.

It seems there is nowhere to turn and no one to help. Our private therapist is great and so supportive but I have no confidence we can beat this.

I am at my wits end. We have a holiday I'm going to need to cancel, just spent 1.25 hours on hold to Tui only to be kicked out after that time. It's all too hard.

I hope things are going better for everyone else.

I've been very absent because things have been tough and busy and we were away on holiday.

Thoughts I've had while reading:
@Lottsbiffandsmudge I hear you re. weight gain. In my head, I've got a little target which is for DD to get within 20kg of my weight - a two-pronged attack. What worked for me during term time was to skip breakfast - she didn't notice me doing this. I'd then have breakfast at lunchtime and then a normal supper. I know that giving up alcohol would have been the more sensible way to cut calories in front of an anorexic, but couldn't face it.

@DarkBlueEyes things sound really hard for you and I empathise. Try to be kind to yourself and keep calm (I know this is easier said than done - I'm frequently hysterical).

@Bettybarkalot123 DD went back to school almost full-time (she just missed PE) at 80%. I do think their 'natural' weight plays some part in this, it can't be a blanket % for everyone. Her periods had returned at this weight, for example. However, the normality we managed to maintain might have contributed to the predicament we're currently in (see below for details). One of us goes in every lunchtime to sit in the car or a park and sadly we're not 5 minute drive away. Morning snack just kind of went out the window.

Quick re-cap of where we are. An up and down summer (weight mostly down). DD went on a hunger strike at the end of term once we lost the leverage of being able to go to school. Managed to lose the full 3kg in two weeks that she'd so painstakingly gained.

Started at a private day clinic. It's ruinously expensive but very bespoke with the meal plans and I like the way she's getting some head stuff as I'm not sure I buy this idea that once they get to a certain weight, their thoughts will be miraculously cured. Because she'd lost so much weight we had to start off with a low-cal plan, move to maintenance and finally gaining.

Then we went on holiday, after much deliberation. Clinic not keen. We just felt it was right for the family as a whole and we agreed that one of us would fly back with her necessary. First week was fab, self catering gorgeous villa so we could monitor her eating and were with patient friends. I felt we had her back, she was more than just a walking eating disorder.

Second week at an inclusive v. active resort. Less successful. Lots of underage teen drinking - she said she'd never drink because of the calories. On the last night she drunk so many shots she vomited (unbeknown to us), fortunately her brother looked after her and got her to bed. The next day we were flying home and she went on a hunger strike because 'there was no point eating any more' i.e. we'd lost our leverage of taking her home if she didn't eat. Not helped by the hangover.

Since she'd vomited and had 24 hours without food or drink we took her to A&E where she spent two nights as her blood sugars, heart rate and weight low. They didn't really do anything useful but it was such an awful shock to her that it might have jolted her insane belief that there's nothing wrong with her.

Clinic has agreed to have her attend but if after two weeks she's not showing progress, think they'll say they can't work with her/us. We were given a telling off about the holiday but actually until the crisis last day, she didn't lose any weight despite being active and had glimmers into a world without AN.

No school or socialising for two weeks either. However, she's following a 2500 calorie meal plan pretty closely. It's designed for her so it's all 'essential fats' and not much sugar. I am suggesting she has more sugar, as avoidance seems part of her orthorexia. However, they say that anorexics are naturally prone to addiction and sugar can be addictive so it's not a good way to feed them up. This felt quite interesting as her anorexic cousin started binging on sweets when she got to a healthy weight.

Oh and she's off the olanzapine. I know others have found it to be a game changer but it didn't help her eat and turned her into a zombie. The day after she stopped it, we heard her laugh for the first time in months. She has Risperidone 15 minutes before breakfast, lunch and supper and we really notice when we've forgotten.

Sorry that wasn't quick at all. Long and short of it is that 9 months after diagnosis she weighs exactly the same as she started but is a couple of cm taller. Sigh. She's being quite sweet though. At the moment.

@Valleyofthedollymix oh that's so hard, I really do feel your pain. How did you get medication for your DD? I am really thinking that it's the only possibility we haven't explored, I've looked into day clinics too and have only found the Schoen Clinic (Chelsea) and TRC (Knightsbridge) and I just don't know what to do. Does anyone have experience of either of these?

Thanks

Hi valley I was wondering how you were getting on.

I'm glad part of the holiday was good at least, I can't believe your dd was drinking shots 😵 I also think dd wouldn't drink due to the extra calories but maybe that's naive!! Interesting re the sugar theory, not sure I believe it but that might just be because I'm sure I'm addicted to sugar 😬 Like you said I'm not sure anything that buys in to the ED beliefs of good vs bad foods is that useful tbh.

Dd has had a busy week, she has been out and about doing normal teen stuff all week which is great but im anxious that I've not actually seen her eat lunch all week. She has a weight check next Tuesday so that will be telling...

Thanks for all the advice. I’m lucky that DDs school is just five minutes from home and I work from home so can easily take her there and back each day. Also the morning car snack sounds like a good idea and DD also said she would be happy with this if it means she can attend school.

I have spoken to the head of year 11 and she said whatever is best for DD they will accommodate. She was very shocked and sad to hear that she was so unwell. She said she could eat lunch with her most days (DD thinks she’s great and was happy with this) and other days she could go to pastoral with a friend for support. I would email them the meal plan so they know what she should be eating for lunch.. that way she can’t sneak any food out before lunch. DD also says she feels less anxious eating in front of others than she does eating at home. It may mean she acteats more at school than she does at home.

We’re waiting until Monday for the ED clinic checks and then Tuesday we have a call with the ED nurse, depending on the results of the check I’m going to try and negotiate a part time back to school at 80ish% with full time at 85%. No PE for either though.

I really feel that she would be happier and motivated to get better by being in school. With the proviso that she’s not out under too much pressure. Yesterday she spent most of the day in her room crying and feeling sad because all her friends were back.

She said “I keep doing as you ask and eating what I should (not quite true I pointed out) but I’m getting everything taken off me”.
She feels that she’s been abandoned a little bit because it’s all about her eating but she’s not really had any guidance about how she should deal with these awful feelings of guilt and shame and terror at the thought of gaining weight.

Someone earlier said about how it’s as if they’ll get to a certain weight and suddenly her thoughts will be clear again. She’s not convinced and neither am I. Compared to what she was she must be fairly well nourished by now. Without fail she eats a healthy breakfast, we’ve got that well cracked now.

Anyway all your advice and support means the world and is helping me navigate through all of this, thanks again.

Yes I’m another one that’s slightly dubious regarding this “magic weight” being reached and then all the ED thoughts and behaviours simply fall away. And in the meantime are you supposed to keep feeding and feeding them and keep them gaining weight forever in the chance that they all of a sudden wake up one morning miraculously recovered? DD’s body image is on the floor now that’s she back to her pre ED weight. I don’t see how forcing her to go higher than she has ever been before is going to allow her to look at herself in the mirror and not hate what she sees!!

@Bettybarkalot123 and yes it’s been the same for us too. All the focus has been on the food and getting the weight on and there’s been absolutely zero guidance on what she should do with the thoughts and emotions. Only that she will feel better the closer she is to weight restored. Well here we are and guess what? She doesn’t feel better!

We did get DD in with a private psychotherapist who she sees weekly and DD definitely benefits from having an outlet and somebody impartial to talk it all through with. Maybe that’s something you could explore?

They’ve kind of said that any psycho therapy would be pointless for DD at the mo, because she’s not yet thinking clearly. But she’s begging for some help with managing her own feelings. We’re doing what we can but I can see why stopping “normal life” for her seems so cruel. I could understand it if her physicals were poor but she’s within the normal ranges for all the tests. Bp and pulse on the low side bit improving. Her dad and grandad both have low bp.

The meal plan we’ve been given says for an active lifestyle but she’s not active, she now does very little each day. She barely walks the dog. An example is for breakfast she’s expected to eat - 2 weetabix, with milk, a banana, 200 mls of juice AND 2 pieces of toast with Nutella. She manages the weetabix, banana and juice but she just physically can’t eat that much and wouldn’t have done before the eating disorder. The one time she tried she had to battle not to be sick as she felt so full and then spent the rest of the day in a distressed state. It seems counter productive to me.
I just feel so frustrated with it all. I’m dreading the appointment on Monday because I feel that she will have lost weight because she was so active on holiday. I mean she was only playing on the paddle board with her sister but for her that’s active. They said she shouldn’t do that but it meant that for the first time in months she was happy and actually showing an interest in eating and food again. She even ate 3/4 of a bean burger and helped herself to her sister’s chips.

@Rollergirl11 before we had help from camhs we had set up a private therapist but camhs said it wouldn’t be advisable to continue with both. Having said that I will email her and ask if there is anything she can do just for DD along the lines you suggest. It would be a good outlet for her her.
Thanks

The ED thoughts and behaviours falling away when they get to a magic weight also seems dubious to me however there are lots of parents with recovered children who report this to be true 🤷‍♀️ In the absence of any other 'cure' I'm happy to push for it.

Dd is definitely in a much better place at her current weight compared to when she weighed less. Although thinking about it I wonder how much of that is because as the weight improves they can do more normal teen things like school and seeing friends.

My dds thought processes are still very skewed at 97% wfh though, from what I've read for full recovery they need to be 105% wfh minimum. I'm not sure how I'll get dd there with her current thought processes so we're sort of stuck in a loop!

I'm hoping we can get a bit more back on track once she's back at school.

@Bettybarkalot123 yes our CAMH’s team were clear that you could not go down the route of private therapy at the same time as you were doing FBT with them and that they would discharge anyone found to be doing so. We totally disregarded that and went ahead with private therapy anyway and just haven’t told CAMH’s about it. We were of the mindset that it can’t do any harm and if it helps than great. I know they say that they are too ill to engage with therapy but DD has found it a life-line and she engages with her therapist far better than the care-coordinator, who she hates with a passion. DD has always been very good at articulating her emotions though so perhaps that has helped.

Oh and there’s not a chance in hell that DD would be able to eat all that for breakfast! An example of her daily meal-plan would be:

Breakfast: 2 weetabix with 250mls of milk, blueberries and pomegranate
Snack: 300ml smoothie (with double cream sneaked in by me) + small bag of mini cookies/cereal bar/breadsticks
Lunch: Tuna & sweetcorn Mayo wrap, bag of pop chips (she can’t bear crisps just yet), Yeo valley fruity yogurt
Snack: 300ml bottle of juice + bag of pretzels/yogurt flakes/jammie dodgers
Dinner: Spaghetti Carbonarra (or equivalent meal with appropriate protein, carbs and veg) + dessert (little tub of ice-cream, chocolate dessert, mini cake)
Snack: 250ml of milk + 2 biscuits

We have found the above (anywhere between 2300 to 2600 calories) ensures DD gains around 500g per week. It’s not really working at the moment though as we seem to have plateaued. Probs need to up her food intake now that she’s at a slightly higher weight (hovering around 47kg/95% wfh) but I can’t bring myself to do it just yet as I know how much grief it will bring…

The ED thoughts and behaviours falling away when they get to a magic weight also seems dubious to me however there are lots of parents with recovered children who report this to be true 🤷‍♀️ In the absence of any other 'cure' I'm happy to push for it.

Girlfriend that is pretty much my stance too but DD argues that I am going to be mighty disappointed when she isn’t all of a sudden all singing and dancing when we get there. I say that that may well be true but that shouldn’t stop us from trying. Funnily enough that’s where she disagrees. Yet another circular conversation/argument ensues and we have to abandon for the sake of our sanity! 🤦‍♀️

From DD's experience the ED thoughts don't/didn't fall away when she was weight restored but her cognitive function improved enough to be able to recognise that the ED was selling her a myth. She recognised that she wasn't any happier following the ED's rules. She still felt the feelings and resisting was hard but with every mouthful, her world opened up (seeing friends, getting a job) so there was simply more noise which helps drown out the ED voice.

Interestingly, just dropped DD at work and she was commenting on how this relapse has taken her by surprise insofar as how a comparatively short period of restriction has pushed her health right back. She's decided again she wants to be happy (boyfriend issue still looming which may make life very difficult again) but fingers crossed

I have a slightly different take on the extra weight = thoughts falling away conundrum as it did work for DD.
I would not say the thoughts went away totally but she did improve a lot between 95% and 105%. Honestly. Her cognition and ability to see rationally and deal with set backs etc improved exponentially.
So I would say 95% isn't enough if the ED is still strong.
There has to be a point when the benefits of being heavier outweigh the fear of being heavier and it doesnt aound like your girls are there yet. That's not to say there isnt work to do at that point. There is. But that work is easier to do.
I guess its like trying to function at just sub par all the time. So being slightly ill but not enough to go to bed but you still dont feel right. The body and brain still arent getting enough to function and heal. And there are no reserves. The other benefit of being over is being able to weather illness or 'bad days' without immediately slipping back.
Those last few percent are perhaps the hardest for them and us to get on. It's like seeing the top and turning back because it's just hat bit too far.
In terms of therapy we have just finished a piece of work on perfectionism. Dd hated the sessions with our KW but the biggest benefit has been her and me doing the workbook together and learning strategies to cope. So it's like I am her therapist now.
I also used one of the ideas on DS1 earlier and it worked a treat....

The other thing I read a lot is about 'targets'. Psychologically they are terrified of going over a 'target weight' fearing they will then be enormous. So they hover just under it. The only way to test this fear out is to go over that target and sit with the anxiety. That's why extinction burst happens. This fear of going over target hamstrings them
Its esp hard if that target needs to keep moving upwards if they are still not fully grown or thru puberty etc.

It is definitely harder to get the weight on the heavier they are and I'm feeling pretty rubbish about how stuck we are atm.

Dd really struggled with lunch today and admitted it was more food than she'd been having when out with her friends (surprise surprise 🙄) she then refused afternoon snack which led to a big argument.

Ive left her with my mum for the night as I'm going out with friends and tbh I'm so glad of the break. The constant battle is exhausting 😩

Dds been having cbt for a while now and honestly I can't see that it's made a blind bit of difference 😕

@Girliefriendlikespuppies have a brilliant night out and try to park carer's thoughts for the evening. You're doing brilliantly.

It's not so much that I think that DD's thoughts won't improve when she puts on weight, more that it seems illogical to me that they're supposed to get to this weight without any work on their heads. The NHS massive emphasis on weight gain independent of therapy just wasn't working for her. Their argument is that they lack the insight for therapy to be of use, but she's definitely responding to elements of the therapy that she's getting, albeit slowly. I just instinctively feel that it should be in tandem.

It's so bloody difficult being given a meal plan with e.g. weetabix and toast and juice and fruit for breakfast and trying to implement it while they are struggling with such guilt.

@DarkBlueEyes I'll dm you re. clinics.

I'm also unconvinced about one size fits all (to coin a phrase from the evil empire that is Brandy Melville) percentage WFH being key - why 100% or 105% or whatever when they all have such different starting points and it's all quite arbitrary anyway given that the weight would have been very different 20 years ago. I could be wrong but I feel/hope that 90% might be enough. She has periods at less than 80.

@Girliefriendlikespuppies the thing with CBT is that it needs lots and lots of practise. You have to work hard at implementing the strategies over and over and over again... my brother did CBT but says it took months if not years to change his mindset. However he is now very well. He told me at the start that there was no point in trying CBT with DD until she was mentally strong enough to do the work
What we are doing now following her perfectionism therapy is a sort of CBT and I have to force her to do the exercises when needed. Its bloody hard work.
@Valleyofthedollymix I totally get the arbitrary percentage thing.... it's just my DD had to go way over where I thought she would naturally land based on her weight history.

How was everyone's weekend?

Good news, not so good news, okay news here. Good news - DD recognised the relapse implications and has reverted back to her standpoint of 'the best way not to have an eating disorder is to act like you don't have an eating disorder'. With that mantra she messaged her Dad & I as her shift finished early one night last week and suggested the three of us go out for dinner. We did, we had starters, mains and she had a dessert which she said yes to everything the waiter asked if she wanted with it). Really proud of her.

Not so great news - her and her boyfriend have split up. They both have mental health issues and timing wasn't great. She's very sad but is also aware of the potential for the anorexia to see it as a whacking big opportunity... so she's alert.

Restarting 6th form this week so hoping that goes smoothly as possible..

You know how you sometimes think you're making progress and then you have a half hour stand off over one Roses chocolate? It's that kind of a day here.

She is so rigid now about nothing more than 3 meals and 3 snacks. The chocolate was meant as dessert, but she classes it as another snack!

Myrtle wow, your DD sounds like she’s kicking ED’s arse at the minute! Go her! Shame to hear that she’s split up with her boyfriend but it sounds like she’s being very mature and philosophical about it.

@Mogtheanxiouschat it’s infuriating isn’t it?

So I’ve just been given the news that DD is finally allowed to give Fluoxetine a try. I’ve just seen that loss of appetite is one of the possible side effects which I’m a bit concerned about. Has anyone here experienced that? Also how long is it likely to take for DD to start to see any effect?

@Rollergirl11 I was talking to a friend today who'd been talking to a neighbour about what made the difference to her now fully recovered daughter. One was a psychiatrist repeating the mantra, you've got more to gain from life than from not eating. The second was fluoxetine. Despite our not great experience with Olanzapine, generally I'm all for the drugs.

@myrtleWilson really sorry to hear about the boyfriend, but much better a short sharp break than protracted unhappiness. I think it would be hard managing someone else's emotions on top of an ED.

DD is doing well. At the moment. We are never complacent. It's really odd, she's being very sweet, mostly compliant, occasional very short very illogical outbursts ('this porridge is too ugly!') and eating the meal plan. Honestly if she doesn't put on weight this week, I'm close to giving up.

I know I shouldn't but am laughing at "ugly porridge" - logic and an ED are not well acquainted with each other are they?!

@Rollergirl11DD is on flux - no noticeable impact on appetite. I think it took her a couple of weeks to begin to notice difference it made. Her consultant on discharge from CAMHS as prescribed through until next spring/summer as advised not coming off it during winter - we're happy with that

@Valleyofthedollymix & @Rollergirl11 fluoxetine was a real changer for us. I was at the stage I would try anything and I'm sorry she wasn't given it sooner now. It seemed to give her the ability to see outside the ED fog. We also heard a 'recovered' girl speak the other day at a meeting and she said 'loves' fluoxetine' as it gave her the ability to start to recover.