Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

It is so boring, I've even said that to dd before now, I am so bored of having to think about food and bloody walks constantly!!!

Valley dd said exactly the same to me that she would rather die than gain weight. Tbh that was a moment of realisation for me about how ill and warped her thinking is. Is your dd blind weighed? It was at that moment when dd said she'd rather be dead than gain weight that I thought 'well you can't know your weight then' 😕

It does stress me out though knowing that if dd did find out her weight all hell would break lose, atm she thinks she's around 53kg or less when actually she's just over 55kg.

I'm hoping and praying that mentally she will recover and magically not care about her weight anymore but that seems a long way off atm. She actually said the other day she would stop caring when she is 99 years old 🙄 I said then she would have wasted her whole life worrying about something unnecessary and pointless!!

I think you have to be very strict about not letting them in the kitchen when food prep is going on. My dd knows I would go mad if the came anywhere near me when I'm cooking!! Plus I actually think dd doesn't actually want to know iyswim, I'm sure the must have suspicions about where all the double cream I buy goes but if she doesn't actually see it go into the food she can pretend ignorance.

Oh yes, the amount of headspace taken up with thinking about food, the calories, the lack of nutrients, the buying of more food is all consuming (no pun intended!) and I say that as someone who has always enjoyed cooking etc...

Girliefriendlikespuppies pizza chips ice cream and a cookie - Congrats!! I can only dream for those days returning, but its happened for you so that gives me hope.

Lougle it is so boring, completely frustrating, and a little crippling to be honest as it holds back the family unless I want to make multiple dinners (and tbh I'm not that generous.....).

Valley my DD also expresses she'd rather die than gain weight (shes 34.5kg and 13). She told the CAMHS specialist if she puts on any more weight she's not eating. She gets weighed backwards but turned super quick to see the number last time . A year ago my DD would not have even thought of saying something like that to a professional who is trying to save her life and protect her future..... This illness is all-encompassing and seems to create a 'short term' new personality in the patient.

Girliefriendlikespuppies 99 years spent thinking about weight, what a waste that would be. We'll get them all better before long and they will become happy young people looking forward to positive things in life...... Its the only thought that keeps me going.

We have Camhs virtual appointment today, I am hoping for an increase in meds as from what's been said here and my DD's behavior I think she's on too low a dose.

@Girliefriendlikespuppies that's good advice about both the weighing and the kitchen banishment. We've made the mistake of thinking we want her onboard with the project, but all we've been getting onboard is her eating disorder. Which she did today admit that she had, so that's a breakthrough.

Funnily enough we were talking about 90-year-old her still needing food pushed on her by her 125 year-old parents...

@SoTiredNeedHoliday best of luck with your CAMHS appointment today.

Various articles in the papers over the last few days about ED, we are so on trend, sadly. The Guardian saying families were having to tube feed at home. FFS.

I'm struggling to get food into DD1. It's going in, I'm over her calorie target, but it has been an all day mission.

She now says: Dairy - hurts her tummy. Gluten - hurts her tummy (didn't know she even knew about gluten!).

So last week I gave her 3 Danish pastries for breakfast. I have to front load calories because evenings are a disaster. She wolfed them down. This week, she can only have 2 if I bag, or none if I don't.

A few weeks ago the smoothies went completely. Cereals are 'bleurggh'. Now Danish pastries are 'meh'. She was eating chocolate muffins, chocolate cookies, etc., but now she's not interested in them either.

Lunch 'I hate rolls'.

Dinner - my tummy hurts too much.

She asked for ice-cream this afternoon. Great, we'll walk down to the sweet shop and get a 2 scoop waffle cone. No, we get there and she only wants 1 scoop.

I know I shouldn't be moaning in a sense, because I am still getting over 2000 calories in, but I think we're on the downward slope.

Lougle that sounds tough and it must be creating huge anxiety in you. Taking steps backward is not what we want....... My DD has also been trying to cut out items of food, like pasta, etc but I am now tackling those one by one as she needs to be able to eat what other kids eat.

We had our camhs review and from tomorrow DD is now on meds 1.25mg at night and 1.25 mg in the morning, hopefully, this will help the dinner and bedtime. Fingers crossed!

Oh that's great, @SoTiredNeedHoliday. DD1 is on 1.25/1.25.

Valley I struggled,and still do really, to understand why dd wouldn't want to recover and feel better. In that respect I think ED are quite unique, I can't think of any other illness where the sufferer wants and fights to stay ill!! That is progress that your dd recognises she is ill though. A couple of mums on the FB page tube feed at home 😕 and I've just seen a story about another woman who has died of anorexia 😢

Dd has been scammed on one of her phone games , she was understandably upset but let me give her a hug!! It's the first time she's accepted a hug in ages 🥰

Sorry things are getting tough again Lougle well done on still getting the food in.

" I can't think of any other illness where the sufferer wants and fights to stay ill!!"

I think the truth is that they are compelled by a distorted mental perception. They don't want to stay ill, they just have a view of themselves that is warped - like those fairground mirrors, but for both body and personality.

I guess I think of it a bit like psychosis/schizophrenia/bipolar mania. When someone is having an acute episode, you can't rationalise with them. There's a reason that people use the horrible phrase 'You can't argue with crazy'. You literally have to just keep them safe and medicate.

For our kids, food is the primary medicine. We have to keep them safe and get their medicine in. But it's really hard.

Am glad you've had a meds review sotired - fingers crossed it will do its job.

valley - good breakthrough from your DD admitting to an ED. DD's therapist at CAMHS set her homework to say ED and anorexia out loud - it took a while but I think it does help - it 'others' the illness a bit more to the DC.

lougle the (necessary) hyper sensitivity we have as parents to any change in eating behaviour can be exhausting. I hope it has just been a blip for your DD. I feel it really hard at the moment as DD is trying to be more independent and eat 'normally'. Except we know (as does she) she's not yet eating normally but it is a tough balancing act to encourage and model 'normal eating - with all its variances', to ensure DD responds to her hunger cues and still keep a watchful eye on what is being consumed..

Fab news on progress nelle

Sending support to those who aren't posting at the moment - I hope you're doing okay and if not do know there is a covid friendly hug always available on the thread!

It is very like mania in the respect of ‘not wanting to get better’. When my brother had manic episodes he thought he was totally normal. Despite the fact that he spent all his money, ate everything in sight, stayed up to the dawn, talked non stop and wore us all out. It was almost worse than the depressive episodes. And his psychosis was terrifying. Medication finally saved his life...including olanzapine,

We have a new psychiatrist who we are seeing on 5th May. My KW says she is an ED and OCD specialist and as my DD has both is very interested in her case and has some other medication suggestions to make. I am really quite hopeful we may get somewhere....
The food thing is so demoralising.
Had another ‘chat’ about DDs rest day which she violently objects to. She seems to think once she is at target weight and ‘better’ she can forget all about her illness and go back to eldest amounts of sport....I pointed out that until she could eat a nice yoghurt instead of her 100g of natural Greek yoghurt FOR A BOOODY CHANGE ONCE IN A WHILE without melting down I wouldn’t consider her better....
@Lougle
have they considered increasing your DDs meds if it’s slipping backwards. We had to increase after a while to see the benefit again.
@SoTiredNeedHoliday hope the increased dose helps.
@Valleyofthedollymix I make DDs smoothies (which she thinks are 400 cals but are actually 700 cals) whilst DD is in the shower, or at school, or doing some invented chore I have devised....
She too must see the double cream but I think chooses to ignore it... which is fine by me!

I don't know if the psych will increase. We don't see her until Friday next week.

Dds porridge portion has been gradually increased over the last few months as well, I keep thinking she'll say something but she hasn't yet!! I'm thinking I might buy bigger bowls 😉

You're right re the the mania and psychosis lots it's just scary to really believe it 😕

Hello everyone. Sorry I haven't posted back for a while - its been all consuming with the eating coaching, trying to fake a full time job (WFH) and the other kids - how are you all coping? what do you do for yourself and your partners? we are just surfing on snatched cuddles and late night alcohol which isn't a long term solution.

DD lost 1 kg the first week we were under the clinic with the initial attempt at the meal plan and was so distressed to be eating normally again she thought 1600 calories would make her ballon (she found a warped website that says that's enough) but she still lost weight. since that she has eaten a bit more and we have crept back with 0.5 kg this week. its going to be a very long road to recovery isn't it. I am so sad these wonderful kids are losing out on so much fun and just normal life. DD thinks about food all day long and takes so much time eating her snacks she is almost on to the next meal.
The body dysmorphia is so distressing, she thinks her calf muscles are huge. There is going to need to be a lot of brain retraining as to what normal is and looks and feels like . rather unhelpfully, she went into school yesterday (she has managed mornings until break time) and one girl told her how great she was looking!!! sigh what can we do with that.
the clinic raised her meds a few days ago as the 1 tablet was having no impact. she is now on 1.5 at night (3.75). I don't know if its working, there are still so many disturbing thoughts. but I guess she is eating about 1900+ cals now so that is a massive step from 2 weeks ago when I first contacting the clinic. no idea how she increases it from here - she is reluctant to "drinking calories" and high density calories like choc and nuts. the exact things she needs. did anyone else have to break through that barrier? desperate for top tips! she wont take fruit juice or smoothies. will just about tolerate a soy cappuccino.
We have a clinic meeting later - I may ask if we can change the tablets to be 1 at night and half in morning or something to match what @Lougle and @SoTiredNeedHoliday are doing - do you think that is helping your DDs?
best of luck to all of you for the weekend ahead

sm701 from what we were told yesterday the meds have a life in the system of about 12 hours so it makes sense to split the time the meds are taken to cover the day. As we only started that method today it's
too early to tell.
Can I ask what clinic you're at? Is it London or close to?
I can get any high-calorie snacks in only basic stuff like yogurt.

We're trying to get the meal times shorter, I've told her there is no school until she can eat each main meal in 20/30 minutes.

Good increase on the calories, @sm701, but the huge amount of effort on your part needs to be recognised.

DD1 is doing ok calorie wise on 1.25mg twice daily, but it's really difficult and straining. I think she needs a slightly higher dose.

DD1 had a 1000 calorie porridge today (30g oats, 180ml double cream, 4tsps sugar, 25g golden syrup and 50 ml milk to serve). She said it hurt her tummy, but she ate it.

She went to school today for a look around and a chat. 1 hour total. She came home, slept until 1.30, ate a roll with butter, peanut butter and Nutella, then has gone back to sleep.

Her school have put together a reintegration timetable of 2 hours per day, but looking at how DD1 has coped today, I think she may have to either do just 1 hour or 2 hours but not all 5 days each week.

@sm701 well done on the calorie increase it’s not easy. We gradually crept up the calories by slowly increasing both portions and also new and more calorific foods. After reading a lot on EDSUK Facebook group I also started covertly adding calories in.
Is there anywhere you can hide extra calories? My DD was told 3 meals, 3 snacks, 2 calorie drinks (milk or fruit juice) and one dessert a day. So she had no choice but to drink calories. She hates the milk but has never drunk juice although loved baby chinos, hot choc etc so milk was our best bit.
Then I just got the snacks up as much as possible with calorie dense foods like nuts, nut butters, homemade cake (more cals than shop bought as I use butter cream on everything...)
It is tough but gradually we got up from 1500 to now 3000+ this way.
Wow @lougle it sounds as if your Dd will struggle with 5 days a week. Did she enjoy it though?
@SoTiredNeedHoliday that’s interesting about the 12 hours. We were told that it builds up in the bloodstream so it doesn’t matter if my D takes it all in the evening! Shame they can’t get their stories straight!

we have the ED clinic at 4 so will raise lots of this with them about dosage etc. One of the things that it so wearing is the mental state of DD. she is a stranger to me. so depressed, low, doesn't want to do anything. its like she's given up. its breaking my heart. to have seen her last summer - utterly glowing and then contrast to this. to top it off we have just got the ECG results back - very low and she has brachycardia. im just hoping this just shocks her into upping the intake. I feel we have to get 500 more into her every day to secure recovery.

will keep going! hoping the meeting shortly helps DD along a little bit more

@sm701 really good luck with upping the calories, it's hard, it's effing hard. I was averse to hidden calories but I've now comprehended just how many calories there are in butter, cream and oil and I whop a spoon in wherever I can as DD just couldn't eat enough calories given that she's into 'healthy' foods. Really sorry about the ECG, really hope it prompts her into eating more.

Ironically my BF has decided to take her daughter's eating in hand from the opposite angle. My friend was always absolutely tiny - 5'7" and weighed less than 7.5 stone throughout university - partly Asian and has that small frame (but shape too, she was/is gorgeous). It's been a bit of a shock to her that her youngest, 13 next week, now weighs more than she does and is on the 90+ centile. It's so weird swapping tips and sympathy when we're trying to achieve the opposite goals. We wish we could get them to swap diets for a month, reckon that would see +/- 3kg. I'd rather deal with her issue - feels a lot less weird and is considerably less dangerous.

I've been calorie tracking the last few days which I've not done before and we're always at least 2200, up to 2600. She's doing very little exercise - it's clearly enough to maintain but I just need a few hundred more a day to get those gains.

Well done @Valleyofthedollymix you're in the right direction for sure.

Well, after my fail this morning (I took her to Costa coffee to choose a treat after school visit, but she couldn't choose anything and we left), and missing morning snack because she went to sleep, she had a 674 calorie peanut butter and Nutella roll for lunch, and just ate a cookie and a doughnut for afternoon snack, which takes her calories so far to 2289 with dinner to go.

valley lougle - well done on that calorie intake despite the challenges.

sm07 hope clinic went ok?

DD had her penultimate adults therapy session today but was very tired afterwards and had a big struggle over afternoon snack, let the ED in a bit as she was about to ask for more food after snack but then backtracked, got very distressed. But on the upside despite an intense desire she refrained from self harming.

Am trying to make a Diana Henry cheddar, onion and spinach tart for dinner (although using asparagus for spinach) as it will be a big fear food but a)melt down pushed back start time b)start of preparation further delayed by my realisation we didn't have enough butter and now c) am not entirely confident my pastry has worked.... am hoping it all comes together otherwise we could be tackling a take away - eek!

Valley from what I've seen 3000 calories is the ideal for weight gain, sounds like you're doing brilliantly tbh. We normally manage around 2500-2700, frustratingly would hit 3000 if she'd agree to snacks and supper. I find any talk of encouraging teens to lose weight incredibly triggering 😕 even if they are slightly over weight I would encourage parents (knowing what I now know) to just go with it. It's fairly normal for teens to gain weight but then it evens out when they have a big growth spurt.

My friend mentioned concerns about her dd who is 5'6 and 11 stone (age 16yo) i found it really hard to know what to say. On the fb page there's been a few parents of teens who had put on some weight/ were over weight and went on a diet only to then develop anorexia 😕

It's a flipping minefield.

I'm tired today, it's been a full on week.

Dd has just asked if she can meet up with her friend on Sunday and take a pack lunch with her. I've said no as I just don't trust her, she is now not speaking to me 🙄

We are currently aiming for 1400 calories a day. Its so tough on top of him having a metabolic disorder. I'm very jealous of the hidden calories, because of his metabolic disorder I just cant do a lot of those. I caught my son watching videos on Instagram of boys bragging how much weight they have lost this week. Thought we were making progress looks like i was wrong.

I definitely think DD1 is primarily ARFID over AN. I find that the novelty of a new food increases intake. So today, I bought mini chocolate rolls from Sainsbury's. 2.5cm long, but 80 calories. DD1 polished off 10 for her morning snack! But in a few days, they will go off the list of acceptable foods.

We've not had a great day, dds been tired and grumpy. We went to my mums this afternoon, had a nice walk in the sunshine but it all went down hill from there 😕

I thought I'd planned a fairly bomb proof dinner to have at mums but dd decided she didn't like it, tbf it did taste a bit weird. She managed about half and I convinced her to have a banana to make up for the lost calories.

My mum really has a way of managing to say the wrong thing which is a worry given we're going on holiday with her in may half term 😕