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.

@Rollergirl11 perhaps you can order youself some reading to help with the process? I like these two books and there is also
Anorexia & other ED's & this one Skilled Based caring

The high achiever, pretty, and sporty is a common theme amongst the ED girls I have come across, unfortunately. My DD is devastated about school and summer exams etc but the Camhs team will help with those emotions and working through what can and can't be done.

Also, don't forget that lockdown has massively affected all the teens, their whole world has stopped just at the time they need their friends, their sport, their goals the most. It's an epidemic of Ed's inside a pandemic from what I've read.

Hi @Rollergirl11 what a tough time for you. I remember being where you are in early December and thinking we could get it licked by the time lock down ended..... we never ended up in hospital but it was very very close as my Dd was at 77% wfh at her worst.
It was rather fortunate for us that we were in lock down as there was no where to go so it took that pressure off.
My Dd did on line school from the start of term in Jan but tbh she wasn’t mentally up to it so there was little point. I had to sit with her the entire time. We persevered though because it stopped her exercising....
If your DD has was things that are valuable to her (ie an incentive) and wants and excepts she needs to get better my advice is to go in hard. Once you are home ramp up the calories as soon as you can (covertly if you are comfortable with that).
My DD is now 98% wfh and is happy at school and back at sport but still coming home for lunch at her request as she is not sure she could manage it yet.
The refeeding process has been quick for us (5 months but still a little bit to go) compared to the average but I think it helped us that my DD had a massive incentive to get back to sport and that the body dysmorphia in our case is not too bad.
It took me a long time to accept the long haul nature of recovery. It’s all new for you. Be kind to yourself and allow your brain and emotions time to catch up.

I remember the mother of a severely anorexic girl I know being very funny about GSCE/A level results day in the inpatient unit - day of celebration as they all do exceptionally well despite missing so much school. 'You don't get to remember the whole calorific content of Waitrose without being good at maths and passing tests', she said wryly.

In other words, @Rollergirl11, try not to worry too much about the academics as they'll sort themselves out. Whenever I read stories from recovered anorexics they all seem to have gone onto to read medicine/Oxbridge/Russell Group etc. There's a rather terrifying r4 Untold on BBC Sounds which follows a family. The girl alternates between being absolutely lovely and really vile to her parents (not her fault of course, ED talking), misses loads of school and then opens her A level results, et voila 3 x A*s.

Someone on this thread says they don't mind having put on weight themselves. I'm afraid I do! I must be a terrible person and of course it's a small price to pay and I'd tip into obesity if it got DD better, but it's really annoying to be matching her kilo for kilo knowing that in my menopausal state it might never come off.

@Lottsbiffandsmudge you have done brilliantly with the refeeding. I agree that lockdown was a bonus in this regard - we'd be almost there if we'd carried on with that pace. Sigh.

@Rollergirl11 it must be very tough for you all at the moment. It is really important to get in touch with the school - particularly if there are girls in the friendship group who could set your DD backwards (I think you mentioned this in a previous post). They will also be able to look into alternative ways to support your DD to ensure that she has access to the right amount of resources at the right time - right now the focus needs to be on recovering. Even though she seems committed to getting better, it is really important to explore why she started to feel this way when she first started restricting to ensure that you don't go back to square one. Although it must be very frustrating for your both being in hospital, no one 'chooses' to have an ED - they are often a way of controlling something when the sufferers life feels out of control / suppressing or numbing something that the sufferer cannot face or doesn't one too (could be stress, bullying, trauma etc).

Hi everyone. DD1 didn't do so well at school today. She tried to do tutor time plus 2 lessons (1hr 45 minutes total) today, but apparently looked quite unwell and was feeling dizzy and exhausted after 1 hour, so they called my Dad to fetch her. Calorie wise she is going well today - 3 hazelnut croissants for breakfast, 5 brownie bites for morning snack, and 3 pancakes for lunch - 2760 calories so far.

Yes, there is definitely an epidemic of ED right now. At the hospital where I work over half the admissions on paeds are ED.

One thing I’ve learned through personal experience is that some people take a different academic path and that’s ok. I struggled with my mental health as a teenager and didn’t do A Levels and go to Uni with my peers. It took me longer to be ready to get that to point but I did get there! I went to a Russel Group Uni, got a 1st, got a masters. I don’t think I would achieved half of what I did if I had pushed myself to do it when I wasn’t well enough.

@Lougle sorry to hear your DD didn’t do so well at school today. I expect it’ll take time to build stamina. When DS went back to school after a year out the physical act of sitting upright all day was just too much. I am always amazed at how many calories you manage to get in her though!

DS is not doing well right now. Refused dinner again last and we couldn’t even get him out from under his blanket. He must be upset about something but I don’t know what. Apparently he slept all day at school yesterday too. So I’m hoping he stays awake today. This is what he does. He just shuts down.

I'm sorry you're DS isn't doing so well, @NelleBee. It's so hard when they can't tell you what's wrong.

Yes, the calories are going in but I'm dreading the point where she needs to transition to a more normal diet.

Roller i swing between sympathy and rage with my dd all the time!! There have been times where I've literally wanted to shake her and scream 'just bloody eat' and other times of complete despair and heartbreak 😢

Lougle I guess it's going to be very slowly slowly with getting your dd back to school.

Hope I'm not sure I agree that ED are always as a result of trauma or stress, I think trauma or stress might be the cause of the weight loss in some kids but not all. It's the weight loss that causes the ED and that weight loss can be because of any number of things. I think in my dds case the combination of low self esteem with a fairly obsessive personality and too much time on her hands led to the weight loss which triggered the ED.

There is also a strong genetic component to anorexia and not everyone who loses weight will develop an ED.

That's why therapy won't necessarily work as for most kids as the most important factor is getting the weight back on which will then 'switch' the ED off. Although I'm still waiting for this to happen in my dds case!!

I've got a meeting with the autism team Fri morning where I'll get their verdict 😬 feeling so nervous about it.

We started watching a Netflix film called Things seen and heard, lasted all of 90 seconds before realising the main character had an ED 🙄 I honestly think ED should be mentioned in the blurbs!!

We watched the Elton John film instead although even he mentioned being bulimic. It's the bulimia aspect of EDs I worry about dd seeing as I really don't want her getting any new ideas!!

@Girliefriendlikespuppies & @Havehope21 I think that there can be many causes of ED. A specialist dietician was telling me how sports people can easily tip into ED as losing just 1kg too much can change their ability to reason (Cognitive ability) and the ED voice turns on and then it's a downward slope which continues until sometime after have restored their weight to what it should be.

I think then it is important to have therapy to work out what happened. Were they bored (lockdown), were they wanting to be like people on social media, had they lost control of things in their life (lockdown) etc etc

Yes I agree @SoTiredNeedHoliday, lots of causes. With DD I think there's a genetic component (both DH's sisters have one daughter, both were hospitalised with anorexia) combined with a trigger or triggers (lockdown, social media, isolation, puberty). I think it's like the way certain mental disorders can be triggered by smoking too much weed, while others smoke it without any consequence. I also think the adolescent brain is so plasticine and vulnerable to triggers.

@Lougle is your DD on an eating plan? Your feeing is extraordinary - really impressive but at the same time it's not like ours. The dietician strongly encouraged ours to carry on with getting her five a day etc (which wasn't that useful as it was the only thing she took away from the meeting, not the bit about having lots of carbs and fats too, and plant milks being evil).

Hey all, I have another update. I’m really sorry I feel like I’m being very self-obsessed and only talking about our situation at the moment. I promise that when we are on slightly more of an even keel, perhaps when we are home from hospital, that I will fully engage with all the other posts and not be quite so selfish!

DD and I met with the Eating disorders team this morning and they have diagnosed her with Anorexia. They are going to be offering her treatment which is Family based therapy. They say that she is currently around 85% wfh and they want to aim for 95% wfh which is what they estimate she was before the weight loss. She has been doing well in hospital and has been 100% compliant around her meal plan but just waiting to find out if they want her to stay in a couple of extra days until her heart rate is consistently above a certain level.

Once she’s home and depending on her weight-gain they think she will need 2 weeks at home before returning to school in some capacity. There hasn’t been too much chat around the psychological aspects of it so far other than they say that her mood will automatically improve with weight gain and the intrusive and obsessive thoughts should naturally dissipate.
I am a little bit wary that they’re not focussing too much on the source/trigger of the ED because I don’t want her left with any legacy/un-dealt with emotional triggers that make it possible for this to re-occur. Should I be insisting that we want some form of talking therapy with a therapist?

The meal plan for when we get home will be “family based” which basically means that I am in charge of the meal plan. Which is fundamentally 3 meals, 3 snacks and a pint of milk per day. The aim is to get her eating the meals and food she enjoyed before she was restricting. I am quite pleased with this approach as it doesn’t seem to be too fixated on calorie counting which is exactly what DD was doing. Does this approach look familiar to other people?

Hello @Rollergirl11
I know what you mean it's very hard to focus on others stories when you are in your own crisis management. I'm still in it! But everyone here is so kind and knows exactly what it feels like.
What you have described sounds right to me. We are with an excellent ED clinic and they don't start the CBT until there is some weight gain perhaps 10%. (I don't know where I'm getting that number from think I read it in one of the million things I've read in last three weeks since diagnosis).
I know how it feels getting that diagnosis. Even though you are expecting it. Sending you a hug.

@Rollergirl11
DON'T APOLOGISE! There, capitals and everything, I'm ordering it.

It's so head spinning when you get the diagnosis. The weight loss had been over six months and yet it still felt so sudden when the news came. My poor son was self-isolating due a close contact when this all kicked off and he emerged from his bedroom to find that in his five-day absence we'd gone from a normal family to one dealing with this life-threatening condition.

Our meal plan sounds similar but we don't have the pint of milk, wish we did because it might finally quash the dratted plant 'milks'. They stress that they want it to be as 'normal' as possible although dd feels it's anything but.

Apologies , I mean 10% of weight, so going from say 50kg to 55kg and then CBT or tiger therapies will start. I get a bit lost in WFH etc so I'm not sure about that side if things!

lol no idea where the tiger came from in that post!!!! I meant 'other" therapies. I think I need a cup of tea x

Hi@Rollergirl11 that all sounds right. There is a school of thought that some people have a genetic tendency for Anorexia and that it's triggered by weight loss. So, for some people, restriction or over exercising for a while will do no harm, but for others, it 'switches on' Anorexia. Therefore, for many people with eating disorders, food is medicine.

DD1 didn't go to school today. She was too tired and felt ill. This afternoon she had a joint appointment with the EDT nurse and a Learning Disability nurse. The LD nurse has said that as i2i will be stepping back, she thinks she should step in to make sure DD1 is getting the support she needs. She's gained 0.9kg in 6 days so they're happy with that.

Roller do not apologise!! The FBT is the standard approach and they don't tend to offer therapy as it might be with weight gain your dd doesn't actually need it. If you've not already I'd get yourself a copy of Eva Musbys book as she gives some practical tips on how to deal with difficult situations and conversations as they come up.

I personally think two weeks off school should be the minimum as your dd may not feel ready to go back and eat at school for a while yet. Plus you will need a plan for supervision of eating at school.

I would also suggest going in fairly hard with lots of high calorie foods, I think there's a temptation to go in gradually but actually this can back fire as the list of fear foods can grow.

You will discover lots of ways of adding calories and I managed to get dd to nearly 97% wfh by basically adding double cream to everything 😁 there is virtually nothing that you can't add double cream to!! We get through nearly 300mls a day 😬

I would also say that 95% wfh is likely to be an under calculation by your ED team and lots of parents report (on the FB page) not seeing an improvement cognitively until their child goes over 100% wfh.

Valley my dds diet now is really not great compared to what it used to be 😕 she used to eat loads of fruit and snack on things like breadsticks and humous but would also have a good amount of treats as well. Now she can't afford to waste calories on fruit so it's always the high calorie treat foods. Her only fruit intake is the few swigs of smoothie she has in the morning with her breakfast and the occasional homemade smoothie I'll make (which is basically fruit and double cream!) she has some veg/salad with her dinner but a small portion as again it's not enough calories compared to pasta or potatoes!

I'm assuming at some point when dd starts eating more freely her diet will balance out again. I'm also reassured by her taking a decent multi vitamin everyday.

It's really tricky getting the balance between enough calories, a balanced diet and treating treat foods as part of a normal diet and I'm not sure I've got it completely right yet!!

@Girliefriendlikespuppies I was saying exactly this to the LD nurse. The calories are going in but if I tried to get her to eat a 'normal' diet, there is no way we could get the calories in and she couldn't cope with the volume.

Today she's had 2 hazelnut and chocolate croissants, 2 caramel waffles and half a frostino, and 3 pancakes.

Even when Dd was eating to plan (in terms of calories) she had such a restricted list of foods she would eat that getting the calories in was a nightmare - I remember the joy I felt typing a post on here when DD had her first pasta!.

Things are generally going okay here - the ED is trying to bring back some restrictions which we're alert to and DD has quite a bit of insight into her ED led behaviours. Her friends are planning a week long summer holiday and have asked her if she'd like to go - she's already decided it is too risky for her (and to be honest I suspect friends were asking out of friendship rather than with any firm belief she'd be able to go..)

roller - you mentioned an underlying cause for the anorexia. In my experience, FBT didn't really dive very much into that and it is only in the last month or so since DD moved to adults that any detailed work on her 'cause' so whilst the attention is rightly on the here and now, do keep that thought in mind (if you believe there is a particular problem - there was for us, but not I guess for everyone)

Oh god don't get me wrong, I'd love for DD to eat 'unhealthy' foods - for her that would be a healthy development. I'd be happy if she had a diet of pure Nutella if that's what it took to get her to put on weight. I'm so envious that any of you are able to get yours to eat croissants etc.

I've realised that it's near impossible to put on weight as a underweight teenager while only eating supposed healthy foods. Everyone suggests to me, oh what about avocado and what about nut butter, but there's a limit to how much they'll eat of that. Whereas if you got a pizza, some doughnuts, some fries... why you could whop up those calories no problem.

As an adult, her diet would be fine and long-term I think it's good as it's quite normal and fits in with the rest of us (though the rest of the family eat meat, I've pretty much given it up along with her). But it's just not working now.

Just had the feedback from all the autism assessments, no diagnosis 😕 they've basically said dd is borderline but didn't quite score highly enough.

Feeling pretty fed up now and not sure of where to go from here.

How can someone have all the traits of autism but not be autistic?!

Oh @Girliefriendlikespuppies that must be a blow. I think they call it 'subclinical' when they exhibit traits but not enough to be diagnosed.

I am feeling exhausted. DD1 had her last i2i session today. The support worker suggested that DD1 has moved to 'disordered eating' rather than 'eating disorder' because I'm now getting the calories in but it's mainly through chocolate things. We're going to try introducing one extra food each day as a 'side'.

@Girliefriendlikespuppies really sorry to hear that, how frustrating. I do think that autism is under diagnosed in girls because the way it tends to exhibit in boys is still seen as the 'classic' variant.

@Lougle that sounds like a sensible way forward. Still impressive that you got her weight up like you did and hope they gave you credit.