Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

SwattyPie It's so hard. You're doing all the right things.

My dd is in her room a lot and doesn't talk much either but I figure that's a teen thing anyway. I take her hot water bottles and drinks and annoy her with gossip about the neighbours or something silly the cat has done. I don't get much response but it's a way to keep an eye on her and not let her fester too much.

Dd will sit and watch Friends and Modern Family with me so we usually watch while we eat as a good distraction. We go for drives a lot. There's not much conversation there either but it's good to be out together. We often take a picnic lunch and eat in the car.

I whatsapp her a lot as a way to keep connected with pictures of the cat, silly memes, Christmas countdowns, etc.

Keep going and remember to take time out as and where you can to help your own mental health.

I have interrupted her with light-hearted excuses. Had a few words out of her when I asked about a friend, so it almost counted as a conversation. I've since sent her about 20 WhatsApp's with suggestions of things to do, in a very light-hearted and "look how annoying I can be, come and hang out to shut me up" kind of way. I got 2 "no thanks" back, then a lot of unread messages. I used it as an opportunity to remind her that I'll always be here and won't give up, even if I go quiet. Big sigh. I don't think I can do any more now. Will ignore now until snack time.... And all the joy that will bring...

I feel for you both. Your DDs are fighting a battle in their minds. I imagine (but don't know) that there isn't room for much else.
I think our best option as mums is to help them fight that battle one mouthful at a time. And you are doing that.
Over time they will come back to you.
I think the light hearted interruptions and therefore the gentle checking in with (and up on) them is the right way to go.
You can't force them to spend time with you.... its so hard.

@SwattyPie I am really sorry I don’t have any advice but just sympathy and sending a hug

can I ask your guys opinion on the situation as my D has finally decided she will try and eat the meals given instead of throwing them across the room or point black refusing however I feel as if she is not been given enough I was delighted she finished her pasta tonight for instance but it looked a small portion I questioned the kitchen an apparently a portion is 50g dry pasta and a table spoon of tomato sauce. I would give at least 75 grams at home but maybe I just have a disorted idea and was expecting too much of D. I also know it is not due to risk of refeeding as she was on a refeeding plan for 6 days and has been cleared. Her dinner yesterday was a fish cake with 2 small boiled new potatoes and veg ? Surely this is not enough?!

I'm new to all this and so can't really comment - I'm constantly playing safe with the "at least she's had something" and my OH is much better at pushing for a change or an increase. I can't bear it though, as I think if I nudge her, it might go in the wrong direction. If she's only just started eating again, I'd be tempted to go with it and let her get used to the idea for a few days. But what do I know? I just did a 20 min soliloquy whilst dancing to Harry Styles and tidying DDs room. Didn't even get a grunt.

@lovewinter is she on a general ward or an ED ward?
We never did hospital so I'm not really the best to reply. I am sure someone with that experience will be along.
Can you raise these concerns with her doctor? If on a general ward are you getting ED specialist input? If not can you press for that?
At home 90g dry weight is a pasta portion for us (not me as I am menopausal! But the teens and DH). Plus there is no protein in that meal unless it had cheese on? So i wouldn't say enough no. But maybe they have a grand plan?

Swattypie your DH has the right idea. Keep nudging upwards. And yes she (the ED) will fight back but that's to be expected and has to be lived through. Unfortunately.

Lovewinter there must be a reason for smaller portions, maybe it's to not overwhelm her digestive system if she's been restricting for a while. My dds dietitian explained that her digestive system had probably slowed down and too much food too quickly could cause disvomfort or pain. Pasta was quite difficult for her at first. She was better with rice or mash. Now she's been eating better for a few weeks she'll manage 80g dry pasta with 2 tablespoons of bolognese without feeling uncomfortable. I'm very slowly increasing portions and putting extra fats in where possible.

swattypie It's so hard but keep pushing her to eat more and eat better. Our dietitian said to not ever mention calories but say nutritional works like Protein, Calcium, Vitamins etc. So 'You need your yogurt for calcium for your bones' or 'You need your ham for protein for your muscles'. It feels like I'm talking to a 5 year old but that's kind of the mindset you need to get into.

Love that doesn't sound anywhere near enough food, have you asked them about it? Surely she'll still lose weight on that amount?

For those of you getting the silent treatment I had months of that. I'm the end I suppose I got used to it 🙁 and I think sometimes they need to sit with their feelings. It is heartbreaking though but as with everything else got better as the weight increased.

Dd seems to have survived without me for a few days. She told me nanny let her get her own breakfast and 'helpfully' nanny also commented 'that's a lot' when she poured her own cereal one day 🤦‍♀️🙄🙄🙄 ffs. I do despair at my mum sometimes.

Dd is now saying it's my fear of change that is keeping her stuck...

Should have known it would be my fault 😒

Girlfriend** obviously it's your fault!! We all get that don't we (even with non ED teenager )?

Lol at all your fault. There is quite a strong mum blaming aspect to some of the ED models of treatment, or rather I don't think it's intended that way but that's how it's come across to me, with CAHMS. If you have a model of parental treatment of ED, then it stands to reason that if the child doesn't get better, they aren't doing it right. It's very easy to feel to blame for everything.

How do your DC’s anxieties peak and manifest themselves? DD has cycles of extreme anger, this week due to school tests we have had flare ups every night - expletives, doors slammed, furniture upended, directed at me and DH (in front of DS11😢). This has not changed over six months, is this normal and how do you deal with the extreme behaviour?

DD claims that she has ADHD and that is why she has performed poorly in her tests. She put no effort in and I spoke to her teachers who said they have never seen traits of ADHD. Is hypochondria and the search for a label or identity a symptom of AN?

@D1ANA22 My D anxiety manifests as very much what you described but it normally is one of two ways she will either be angry and shout and throw things and become hysterical or she will just withdraw completely And stop doing anything and not talk and just stay in her room.

interestingly my D was the opposite all her nurses were saying we should pursue an autism diagnosis and she refused and refused for a very long time ( I should mention she was referred for an autism diagnosis twice from generic CAMHS before her ED developed but we never went through with it) now although diagnosed she gets upset if we ever bring it up which is so sad she asked me to promise not to tell anyone.
I would say that the ED massively affects their brains so it is understandable she will find it hard to concentrate as her brain is not only malnourished but also fighting an illness 24/7

D1 I think teens now generally like a label to put on themselves, my dd has gone through various phases of believing she's something or the other. I do think she is autistic as there's been loads of traits since she was a baby and I think generally teens struggle with identity and managing difficult emotions. That's even before you throw AN into the mix.

That said I would have a line re behaviour that you will/will not tolerate. For me the line would be physical assault or threatening physical violence. At that point I'd contact the police and dd would be under no illusions that that behaviour was not okay. Shouting, slamming doors etc id chalk up to a normal teen tantrum.

I was very proud of dd Ystd, she had a medical appointment that she had to go to on her own as I was at work all day. The appointment involved her being weighed and measured and she told the nurse that she had an ED and absolutely did not want to know any measurements. The nurse apparently was very good and made it as stress free as possible.

This is from the girl who screamed and shouted at me when she was first blind weighed that I was abusing her human rights and was an evil bitch for not telling her....

It feels like a massive step in the right direction that she recognises triggers and confirms my belief that she absolutely did not want to know her weight all along.

It was also the first day in over two years that I didn't leave any food preparation for her but trusted her to get her own breakfast and lunch. She told me she got a Greggs sandwich, crisps and a spiced pumpkin latte for lunch 😊 would have loved it if she'd got herself a cake as well but still it's progress!

Thank you @lovewinter for your insight. Can I ask what traits pointed your daughter to an autism test, and was this done pre or post ED diagnosis? We see traits now such as habits and rituals, but these did not present before the eating disorder (although DD has always been shy and socially awkward).

We could test private - however I am concerned that these firms are profit orientated and possibly cut corners - some of the private tests I have seen refer to old methods of diagnosing autism, unless someone on the tread could make a recommendation - we are in the North West of England.

The lack of focus and concentration I do attribute to the ED - going to meet SEN at school after half term.

Thanks @Girliefriendlikespuppies - the boundaries are there and enforced (and we have called the Police before now). DD almost pleasant this morning wanting her phone back. The labelling and identity resonate with my DD's social circle - girls who I have known since babies hit year 10 are now suddenly non-binary or trans-boys - what a difficult time they live in.

Sounds like a good day for your DD yesterday - excellent progress.

My dd has outbursts but is more of a flouncer and she can be incredibly rude and say really nasty things. She blames me and dh for everything and criticises our jobs, our home, the car, our ages and appearance, where we choose to holiday etc. Apparently if we'd had her younger and had a bigger house and nicer car she wouldn't be ill. She sends me links to swanky new houses for sale in the area probably twice what ours is worth and says 'If we lived here I wouldn't have a problem'. It's all painful to hear and feels like we're being emotionally abused but we know it's just her ill mind and have to try and let it wash over us. Luckily she's not like this all the time, it's mainly the week leading up to when her period is due. She's never really lost her periods completely and her hormonal outbursts have always been vocally vicious.

@D1ANA22 sounds tough. I'd be wary of pursuing diagnosis whilst still in the grip of an ED.
My DDs OCD came back with a vengeance during her ED. I think it's common for OCD type rituals and behaviours to develop. It's because they are dealing with such loud and constant intrusive thoughts. Ritualistion helps deal with the thoughts (a bit like self harm I guess). Tbh I left the non food rituals alone (they weren't harming DD) so allowed the same plate, the obsessive tidying and placement etc.
Now DD is recovered we have gone back to the CBT techniques she learnt when she was 9 and updated it a bit. And the rituals have receeded. In fact her bedroom is now a tip. The main thing that helps her when dealing with intrusive thoughts (now mainly around her sports performance) is to get out of her head and do something. Anything really.
I think the temper tantrums and destruction etc are prob part normal teen behaviour massively amplified by the ED.

@D1ANA22 her traits became more noticeable as she grow up, she is very very good at masking but then this causes large meltdowns at home through pure exhaustion and bottling everything up. Her traits that were indicators are some her not all :

• she had want I would describe as toddler tantrums well past toddler stage, but were at home, she was impeccably behaved in public or at school (apparently this is very common for girls with autism )
• she has always been a massive sticker to rules and order and gets disproportionately upset if they are broken, for instance teaching her to tell the time when she was about 8 we joke was an awful decisions as she would have panic attacks at the thought of being late to the point if we were not outside early ready to go in just on time she would simply not go in at all ( which contradicts her trying to behave well at all times) little things like for instance she has a mug that says something about a lovely hot chocolate god forbid someone made her a cup of tea in that mug for instance although some things we now laugh at !
• very sensitive taste although not picky just hyper sensitive can tell if its a different brand or cooked in a different way and actually prefers strong flavours and textures anything 'mushy' in her words is a bit pointless its either a solid or a liquid but loves yogurt so not sure how that fits in !
• a change of plan is very difficult and always has been, as a younger child she would ask questions insessitantly on what we are doing at what time who will be there etc even now she needs to know and any last minute diversion from the plan is a massive challenge
• as a child was not very good at playing but not in the obvious ways she played very well at school, nursrey and with her sisters all imaginative play however it was more of her bossing them what to be and how to play to fit in with her game if that makes sense!
• she struggles with friendships not in an obvious way, as ironically everyone she meets would say she is a delight to be with this is because she is very good at assessing the situation and that person and then altering her behaviour to fit in, however she really struggles to make more meaningful friendships for example.
• everything has to be the same in every sense
• very neat and organised, everything has a place and if not in that said place it distresses her
• sensitive to certain textures, tights in school uniform was a nightmare, also certain smells
• black and white thinking/ very rigid , although not as extreme as what I naively thought was the stereotypical autistic thinking for instance she understands sarcasm and can be incredibly witty.
• hates change - she didn't want to go through puberty as it was a change she couldnt handle
• finds it easier to talk to boys as she found classical girl bitchiness and fickleness very confusing and overwhelming
• is very bad at articulating how she feels or what she needs instead gets overwhelmed and shuts down
• struggles to engage in group settings as the dynamics is confusing I think,
• has a habit of interpreting

all these traits were present before ED however some we put down to being bad parents ! they have become more prominent during her ED but also as she has grown older and you compare her development to other girls her age. She was refereed for a diagnosis twice pre ED however the waiting list was so long she never got to the end of it then we moved to a different county and had to start the waiting list again. Then when her ED nurses were all saying they would recommend a diagnosis we went private but as we like you were wary of private companies we were advised by the local ED team and autism team which diagnostic tools they need to have used and which credentials you should look out for. sorry that was so long hope it helps as I klick myself at how we missed it for so long and we must have let her down.

@Girliefriendlikespuppies That sounds like amazing progress well done ! That has give me hope for my D and hopefully cake next time for your D !

Love you've just described my dd to a T!! They sound so similar.

I did try and use some of dds penchant for sticking to rules to my advantage in recovery which I think helped. Also her love of a routine. At one point meals and snack times you could set a clock by as any slight deviation would upset dd.

I hope your dd is doing okay?

@Girliefriendlikespuppies I would recommend seeking an assessment, but also I do what you said and try and use it as an advantage and utilise her love of planning and rules.

thank you for asking, she isn’t great she is very distressed and scared . I am fuming at the hospital when I asked about the small portions apparently there was a reason for the small portions however it was purely a NHS cost saving exercise. I then asked if she could have larger portions to which I was told no as it is not in their budget to give people double servings also if she got a double portion then the next person would want one etc. I then decided I would bring in my own cooked meals for her which went down like a lead balloon because in her eyes I was going against the dietician who at this point hasn’t even visited us yet. Thankfully I managed to get an appointment with her normal dietician who came to the hospital and we made a meal plan together which seems to have been accepted in her desperation to get out of hospital. But she is really finding the change of timings and environment very very hard alongside the trauma of hospitals

That is unbelievably shit of the hospital and their tiny portions love, you must feel so pissed off, everything is always such a battle for our kids.

Dd did have an assessment and they came back with she's borderline autistic, the assessment team thought her struggles socially were down to the fact she had hearing loss as a younger child. They couldn't explain the sensory issues, emotional regulation issues, the black and white thinking etc 🤷‍♀️ very frustrating. For now it's enough that dd and I both think she is autistic but if at some point she wants to pursue an official diagnosis we can try again.

@lovewinter The tiny portions thing sounds like complete madness.

@Girliefriendlikespuppies Lovely to read about your DD's birthday celebration!
Our news is that unfortunately my DD was readmitted to hospital (for the 5th time) today. Another (small) loss at her appointment, but BP worrying and back in bradycardia.

@Girliefriendlikespuppies I think our D's are twins! My d also has hearing loss and that was taken into account though when doing the assessment and there was a paragraph on why they believe that her difficulties can not be attributed solely to this.

@NanFlanders im sorry to hear that, as others have said take comfort is that she is in the safest place for her body right now. How are you both coping