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...

Thank you for the Nido tip grey I can't believe your dd put her foot through the windscreen 😳 although actually I can!!

So dd has somehow gained 0.3kg 😕 a tiny amount and we've still got a mountain to climb but better than a loss!!

Is anybody else’s dd vile to them all the time. It’s really starting to get me down.

Well done Girlie!

Yep scribbly got called a bitch and dd said she wished I'd die tonight 🙄 charming.

It's wearing but I remind myself it's the eating disorder trying to hurt me not dd. I also think dd has to process these difficult emotions (fear, anger, hatred etc) so she might as well process them my way than at herself iykwim.

Psychiatrist day tomorrow, no idea what to expect 😐

Just back from the psychiatrist, she has suggested antidepressants 😕 I'm not sure what to think.

In my mind dd isn't really depressed, she is anxious and confused but if she gained weight I think that would settle...

Dd is not keen on taking meds either plus I took antidepressants a few years ago, I only took 2 tablets but had the most horrendous side effects (vomited every day for a month, really awful intrusive thoughts.)

It's so hard to know what to do for the best.

Hi girlie every individual will have their own viewpoint but for what it's worth - DD has been on anti-depressants for a month or so and it has made a difference. Her mood has lightened. Still some way to go but it has helped.

Our experience on this thread makes me wary of false dawns and we've had a really tough few days of it but... Dd has decided she is going to try pasta at dinner. Her diet has been so restricted and she's not eaten potato/pasta/bread in last six months. I'm deliriously happy that she's come to this decision - may not happen when push comes to shove but am holding onto hope there is a flickering of new thinking/challenging the anorexia - will update later!

Also OMG grey foot through windscreen 🤯

Thanks myrtle that's fantastic news re trying pasta 👏🏻

I'm completely wrung out, have had a 3.5 hour zoom consultation with a different psychiatrist as part of dds ASD assessment. Anyway at the end of that the psychiatrist basically said she scores really highly for autism which came as no surprise. Dd has to go through a few more assessments but it feels fairly certain we will end up with a diagnosis now.

Interestingly this psychiatrist suggested a different antidepressant and said CBT might be useful (something the ED Dr said wouldn't help!! 🤯)

It's been a very emotionally draining day, I got upset at the end of the Autism assessment as I started talking about how much I love dd and wouldn't change a thing about her (other than the ED obviously!!) However having a ASD diagnosis might mean being able to get dd some support and improve other people's understanding of her.

Need 🍷 now!!

She ate some pasta!!! About 50g and there was tears and head banging beforehand but my brave brave girl did it! 🙌😍

Oh gosh that’s brilliant Myrtle. Well done your DD!

Wow that’s fantastic Myrtle!

Thank you - it all kicked off around supper as the anorexia was majorly hacked off but we've had a good family session today, some self harm but pasta again tonight!

Fantastic!

That's great progress myrtle I'm chuffed for you!!

Not much progress here although dd did drink most of her milk at supper time. She has this thing that she always has to leave something on her plate or in her glass, almost like a peace offering to the ED 😕

I'm slowly working on getting her to finish her drinks at least....

Struggling tonight, caught sight of dd getting ready for bed and she looks so thin 😰 couldn't get her to drink her milk and have had her phone for a few days now and it's made no difference so far.

It just feels hopeless.

I’m struggling today as well. After a successful meeting with the Psych on Wed DD seemed really energised and willing to do more to get better.

Thursday morning and we are back to arguing and crying about butter...and on it goes.

(Although she’s had to add a daily chocolate bar to her meal plan since Wed and has managed that. This illness just makes no sense)

Dd wrote me a letter last night, some of what she said was heartbreaking. The ED voice is very loud and punishing, she said she doesn't really feel anything any more 😪

I think I'm going to take a few weeks off work and try and get to grips with it all again. It's too hard trying to juggle work and dd especially in lockdown.

Picked up Eva Musbys book last night and reminded myself of a few things, especially in ch 13 about communication and empathy.

Sorry to hear that it's so difficult right now. It does sound like you're both inching forward, even if you're seeing a lot of backward steps?

DD1 has done really well this week with her online learning, and seems happy to eat for now. Not huge portions, but eating.

Sorry to hear that eve and girlie are struggling - it is such a challenging illness. The letter sounds heartbreaking but how brave of your DD to write it and give it to you. In our family therapy this week we talked about how Dh and I feel bullied by the anorexia and if we do, the amount of abuse our DD's must be feeling is immense..If you can manage time off work I think it would be good - DH has been signed off by Dr to be primary carer but to be honest my work capacity is limited too..
eve - I recognise that cycle of one step forward, two back - the ED gets annoyed with progress/happiness and quickly tries to re-assert control

DD has a mantra that "she's not sick enough yet to get better" and in family therapy this week they've asked her to do some thinking about what DD thinks the anorexia is trying to tell her by setting this parameter. If we assume (we don't) that DD got more unwell and the anorexia said 'thats it my job here is done, you can eat again [hollow laugh] - what is the anorexia communicating to DD... It is interesting.. a few years ago we had a bad time as a family - in two years she (then aged 12/13) experienced three significant bereavements. DD doesn't talk about the bereavements themselves as a trigger but the fact that her Dad and I had no ability to control what was going on and she sought some semblance of control through the ED. So is the anorexia pushing her to a place where she has no control (anorexia in charge of when she can get better), or is the severity of the illness important to her as her parents 'dropped everything' to care for dying relatives, or is it something else.... I do think somehow we need to understand this root cause for a long term solution but in the meantime we keep on keeping on...
In continued good news, we're on day four of having a small amount of pasta and tonight one of DD's friends drove over with a bag full of gifts and a socially distanced chat - teenage girls can be incredibly caring - it really brightened DD's mood.

Ah how lovely Myrtle. She sounds like a really good friend.

It’s interesting as my dd also suffered two significant and distressing bereavements, then lockdown and a struggling sibling.

I too think finding the source is key but seem to be on my own a bit with that.

That's nice about your dds friend myrtle and fab progress with the pasta!

We're plodding on, tried reintroducing snacks Ystd which went about as well as expected!! Neither were eaten and the first one was launched across the room 🤪

Still not drinking evening milk either, I've had her phone for a week which has made no difference so far. Not sure if it's worth caving and trying another approach (altogether God knows what!!)

I'm struggling a bit as well, feeling anxious and overwhelmed 😥 having suffered with anxiety in the past I really don't want to go down that road again.

Hello another incomer here. I've just read this thread in one big gulp and am reeling from all the sadness and recognition. I haven't quite digested (absolutely no pun intended) who's who with which child quite yet, but thank you all for the useful advice. I've ordered Eva Musby and will dive into FEAST next.

DD is just 14 and has always been quite an anxious child but has a small circle of lovely friends at secondary. She's always been v slim too, despite eating with gusto and adventurousness. For example, we got a letter telling us she was underweight after the y6 weighing.

She seemed to be putting on quite a bit of weight at the beginning of lockdown, which didn't bother me (though the rate did a bit). Then she couldn't fit into a skirt and saw a photo of herself and started to lose weight, though it felt gradual. She didn't have a period for a few months so I rung the GP in Oct half term - she got her first period about 17 months ago. She told me to ring back in the new year if it still hadn't come back.

We watched her eating and she seemed to be fine, albeit on the health conscious side. Her weight was within the healthy range, albeit right at the bottom.

Then over Christmas we noticed it had gone awry - she was skipping breakfast, going on random runs etc. I weighed her and she'd lost about 2.6kg over two months - enough to put her firmly into the underweight bracket.

The GP responded very promptly. She's been weighed at the surgery and all her bloods have been tested (they're fine). We have been referred to the local ED clinic attached to the hospital. They called back on the day but the dietician and nurse can't see her until end of Feb as they're deluged (thanks Covid). They did manage to expedite an appointment with the paediatrician to do more bloods, ECG etc.

We've been trying to following an eating plan sent to us. God it feels like a lot of food. It's all I think about - buying cooking pushing food. It's really exposed the fact that she does have an eating disorder - she finds it difficult to eat the food, is picky about what, a bit fat/sugar/carb phobic etc. So far she hasn't gained any weight but she's not losing it.

Most of the time, she's delightful. She seems quite cheerful, isn't lacking energy, not cold, listless. She's just really really thin - BMI just under 15.

Welcome @Valleyofthedollymix - although as ever we're sorry someone else is in the same boat. Over the past few months since this thread began I've found it to be a really incredible place for support, ideas, a place to vent and scream and to celebrate the good times (never did I imagine I'd be jumping for joy when DD ate pasta a couple of days ago but there you go!)

Whilst all of our DC are different, it does seem like there are some common 'approaches' that the eating disorder takes - awful bullying, telling the DC they need to get more ill before they can get better etc - so whilst we won't necessarily have the answer, I can pretty much guarantee you'll find someone on the thread who will nod their head in recognition of whatever you're going through in that moment and offer a virtual hug if needed.

Meal plans are great in some respects as you know you're following medical advice but the sense that food takes over your day is absolutely spot on - its planning food, cooking food, distracting DD from the fact food is on its way, eating (sometimes) the food, distracting DD from the fact they've eaten so as to prevent the eating disorder getting too loud in their heads. It is exhausting and very much, I think, like having a newborn again (albeit a much more independent and bolshy newborn )

How are you managing - one of the issues many of us have had is juggling work and care - my DH has taken sick leave to be primary carer at the moment to allow me to do some work (no where near full capacity).

I'm sorry that your daughter won't be seen by the team until the end of February - it may help if you kept a diary of how she's doing, how much or not she's eating, changes in mood etc so when they do see her they have a sense of direction of travel? Plus do feel free to ask those of us already in the system whats working/whats on offer locally so you know what to ask about....

Thank you so much @myrtleWilson. I'm keeping both a food diary and one of my thoughts and observations. When I'm not feeling miserable about it, it's grimly fascinating and also throws a light onto my own attitudes towards food and of the society we live. I'm reflecting on all of this. And my own weight gain - I'm matching her intake without being an underweight growing teen!

Lockdown had already thrown my career - I'm self-employed and fortunately we can live well off DH's salary. It just feels like yet again my career is being kiboshed as it has done ever since our eldest was born. However, I feel lucky that I can take this time as it would be very challenging to do this while working full time.

I do have a couple of questions to you wise people.

1. We feel therapy would help but don't want her seeing too many different people. We can afford private - would you advise we just try to find someone or to wait for the one via CAMHS/hospital (which won't be until end of February)?

1. How do you know what the target weight is? Is it a percentage of BMI or a centile? I've read people being 75% or whatever of target weight but I don't know what it is.

Thank you again and all my sympathies.

Welcome @Valleyofthedollymix 🙂 it sounds like your DD is on the right path for the care she needs.

DD1 is eating quite a lot better at the moment - breakfast, lunch, snacks and dinner. But I'm not seeing that translate to weight gain. I was sure she'd have put on weight today, but she was 37.3kg, which is 0.1kg less than she weighed 8 days ago .

I don't understand it. This week she's had breakfast nearly every day, wrap and crisps for lunch. Snack (biscuits, Jaffa cakes, etc) mid morning and mid afternoon. Dinners have been curry (coconut milk and cream) served with yoghurt, chili served with sour cream, roast dinner with Yorkshire pudding, sausage and tomato pasta bake with cheese, etc. Yet no weight gain.

No contact from paeds. Dietician at the end of February.

Is she sneaking in any exercise at all or losing calories through being cold at all lougle Do you know what her daily calorie intake is from that plan?

valley - there is a scale that is used in ED (MARSIPAN - and there is a junior version of it) I think there is a % weight measure but I don't know the details I'm afraid. I know in our CAMHS DD is placed in a traffic light zone system - which is a combination of all her observations - so she may be in Red for postural drop (usually is) but amber for blood pressure, proximity to target weight etc and then aggregate taken. The zones are to indicate risk of admission. DD is in gold, which I'm assuming is actually amber but poshed up