Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

@Shanghai101
Thank you for taking the time out to type such a detailed response. I am overwhelmed by the kindness of strangers going through the same thing on MN.
Love the blue and red balloon concept
It is true that her life has very little blue balloons at the moment. Need to find ways to increase them.
I also agree the motivational to all doesn't come naturally me DH and I.
We are very much a 'life is hard, get tough and work hard" couple and I think this is something we need to change. We haven't accepted she isn't choosing this. We are angry. We think this should be easy for her to listen to us and make changes.
This time of the year makes everything harder too. Right from do I really need all this sugar over Christmas? But I do have another child and it's not fault of theirs.
We will get there. There is hope
Xx

Hi 👋 I’m new here. 13yr old diagnosed a month ago with anorexia. Weight dropped from around 48-50kg in August to 40kg by end of October. She is 165cm. Shocked by the speed of weight loss. She was extremely active at school in the first half term and must have been eating very little. Hoping someone can give me some tips for high calorie meals and snacks.
We’ve been doing 3 meals/2snacks a day for nearly 4 weeks now and she’s eating almost everything I give her. From a low reading of 38kg at end of November, she managed to put on 2kg in 9 days (mostly water?). But in the last 2 weeks, weight has just stayed the same - around 40kg. She eats around 1500 calories a day, but I’m struggling to increase this without making the meals look too overwhelming. Does anyone have any tips?

Hi @EDjustdiagnosed sorry that you find yourself here. AN is really tough. Have you been referred to a ED clinic? Ours has been invaluable. We have been given a feeding plan which if highly calorific, and which DD only follows because the professionals at the clinic have put the fear of God into her. Its full of full fat milk, flapjacks and buttery jacket potatoes with cheese.
Has she had an ECG, and had all of her observations done? That can really help drive the point home of how poorly your DD is to her.
I was reading this last night which was interesting, apparently their metabolisms are so fast at the moment that they burn off any calories they do ingest really quickly.
Other more knowledgeable people will be along to give you better advice, I hope you get the support you need soon.

@EDjustdiagnosed sorry you are finding yourself here too.

1500 cal is way too little to put on weight. You should aim far higher. Double that. My DD would not even maintain on that intake so I am not surprised she is not gaining weight. most of us here do 3 X 3 (3 meals and 3 snacks - add an extra snack, that alone will add a few hundred calories). If you cook, add butter, oils, if she will have shakes take double cream. Pasta sauces with cream. There are energy bars out there for snacks which have 200-300 cals. Will she have ice cream? Don't worry about healthy, just get the cals in.

Hi as others have said 1500 calories is way too low, my dd would still be loosing weight on 1500.

The way to increase calories without bulk is to to add double cream, butter and any other high fat to whatever she eats or drinks.

For example my dds eating plan at the point she needed to gain weight was:

Porridge with double cream, you can also add a banana and seeds or a spoonful of peanut butter. (700 cals)

Cake or chocolate bar for snack (250 cals)

Lunch could be scrambled eggs made with double cream on thick buttered toast or soup with double cream mixed in and toast or a toastie with tuna mayo and cheese. (Aiming for 700 cals)

Dd always also had something else with lunch so a yogurt or couple of biscuits.

Snack crisps with hummus

Dinner whatever normal dinners you have but made with extra butter and double cream. Anything in a white sauce is easy to add calories to. I'd aim for 1000 calories for dinner.

Pudding high calorie puddings so sponge puddings and custard, tiramisu, cheesecake etc.

You can also make milkshakes or smoothies up using double cream and ice cream.

It sounds crazy but we went through a tub of double cream a day at one point.

It does work and dd gained between 1-2kgs a week and most of the anorexic behaviours reduced or disappeared with weight gain.

Hello. Sorry you that you’re in this situation, but you’re in the right place with these lovely ladies.

I have a 13 year old with anorexia too. I have no advice. We’re still in the early days (she was diagnosed in October) and most meals fail at the moment, so I don’t know where we’re headed.

wondering if anyone has any ideas as I am stumped. DD has been eating her own limited 'meal plan' for most of the year now and is maintaining at around 85% WFH. it's pretty much the same stuff everyday. We have fortnightly weight checks and at the last one, she lost about 1.5kg. She has been eating the same as usual, I monitor all meals (she will not eat in school so all is at home under my watch). She is not allowed the bathroom after meals, I can rule out purging. The last time we had such a rapid loss was when she was eating next to nothing. Anyone any ideas. I am clearly missing something.

@Curlyhairedassasin - has she grown taller? I read it takes 10000 calories to grow one cm (not sure of the evidence behind that), but I've definitely seen weight going down if my dd grows...

EDjustdiagnosed - just to agree with everyone that 1500 is unlikely to help gain weight. When we were in the weight restoring phase I added double cream and oil to everything I could - porridge made with double cream, cashew nut butter, sunflower oil can still be a small bowl but really loads in calories. Brains are made up of quite a bit of fat, and so it's good to eat more fat in this phase. I made 'smoothies' with a small tub of haagen dazs, double cream, cashew nut butter, sunflower oil and I could make a very small glass be around 800 calories. Camhs often don't like parents to hide calories in food (our worker told us it impacts negatively on the relationship - er, being in the throws of anorexia and screaming at me that she wishes she could see me die probably had more of an impact).

@greydoor not notably. I will measure her later. Would growing cause such a sudden weight drop?

Also @EDjustdiagnosed you will have to realise, that there is nothing that your dd wants to eat, that she should eat... her anorexia is like a hideous parasite that wants to kill her, and it is governing all of her waking hours, and causing her huge mental stress and physical exhaustion. The only way to kill the parasite is by refeeding and doing it quickly, which means to have to find any possible to way to get her to eat what actually disgusts her. It's a horrible horrible thing, each meal time is like a battle ground, but it's like pulling off a plaster, you have to do it quickly - with medical supervision of course.

Curly hyper metabolism? I really hope not as with your dds current plan she'll just keep loosing 😢 otherwise any chance of secret exercising?

I doubt that @Girliefriendlikespuppies . we have been on the current intake for ages. Checked height. no growth. at least we are at home over Xmas. Will be hyper vigilant. Secret exercising more likely. does hypermetabolism just suddenly kick in if the intake has been stable for a long time?

@Curlyhairedassasin I think the theory is that growing in height puts them in energy deficit because it takes such a lot to do it. I can't remember how old your dd is, but there are other physical tasks of puberty involving brain reorganisation and physical body changes that can take energy.

I've not posted for ages, but we are having a really tricky time. From a starting point of over 110%wfh dd has steadily lost every week for three months - she's now lost a total of 8kg since October. We are in an awful phase where her camhs worker has been basically colluding with her anorexia and telling us and her that 'maybe this is normal for her', including things like secrecy over food, NEVER eating outside of schedule, and hiding food again - I discovered her snack which she told me was 'delicious' in her sock drawer last week. I'm at the end of my tether with the whole thing, we are just sliding back into anorexia while I watch it happening, and while this health person basically paints me out as an over anxious mother and gives dd excuses not to eat. It's immensely frustrating, I don't know what to do other than take back the reins again, but I'm not sure I have the energy. I've been looking at the Charlie Waller courses that people have been talking about on this thread and hoping to sign up for some on the new year, I need to really figure out what we do now.

oh gosh, so sorry @greydoor I would just take control again with meal support, 3+3 the whole works to turn it around as quickly as you can. You have done it before. You have the right tools in your tool box.

I know what you mean re camhs colluding with a the ED. We even have it with the ED team. Since Dd's MH is shot (including suicide attempt, frequent SH, hallucinations, voices, paranoia) we have been told we should push the eating so much as not to damage her fragile MH further. We cannot get her to increase her intake. I sometimes wonder who on earth we are ever going to come out of this hell esp of all professionals agree pushing food isn't the best way forward. I think it's just another symptom of a very ill equipped health system to deal with our DC.

Thanks all, some good suggestions. I’m finding it hard to make meals above 500 calories that don’t look massive.
We’ve had an initial appointment with CAMHS, but we’re on the edge of a large county and had to travel over an hour to get there. There is a family based group we could join but it’s an hour and a half away. There is one 50 minutes away in the neighbouring county (where DDs school is) so that would perhaps be a better option if we can get a place there. Does anyone have any experience with the day service in Winchester next to St Swithuns?
Sorry to read about everyone else’s struggles.

@EDjustdiagnosed I used the Tesco shopping app to get everything which has the highest calorie per g. So the warbuttons bloomer white sliced bread has 150 calories per slice compared with other bread which is around 100. Quaker porridge oat bars are over 200 calories and are small. Haagen dazs has the highest calories for any icecream I could find. Double cream is close to 400 calories per 100ml, and 100ml is quite small, 50ml even less - I put it in many things eg pasta sauce, curry sauce, porridge, scrambled eggs. My goal was to make small meals with big calories in them. Sausages are good - Tesco finest have over 300 in 2 sausages, and then with frozen mash loaded up with butter and double cream, a small meal can easily be over 7-800 cals.

The downside of this is that I gained quite a bit of weight which I am now trying to lose in secret because I don't want to trigger my dd...

@Curlyhairedassasin - our professional is an ed team person. It's absolutely shocking how awful it's become - started off quite well but they have just built up their belief that the problem is me - if only I'd be less 'controlling' (aka asking my dd to eat) then everything would be ok. I feel like I'm being gaslit, I keep trying to explain myself better, eg explaining she is eating less and less, hiding food, avoiding food, and yet still it comes back as 'your mum is going to have to learn to tolerate her own worries about your eating' 😳 I am just bamboozled by it. Realising the apparent 'experts' are at best ineffective, but at worst are damaging has been pretty scary. Sorry you're still going through it too.

Just need to offload and know you will all understand. Whilst DD has been accepted into the ED service, there's no space in the outpatient unit until February and unsure about home therapy but likely longer. CAMHS accepted her for mental health but admitted she would only get CBT and wait list is years. I've read the new maudsley book and I'm trying so hard.

When I started to take control of meals, DD freaked out, stopped eating altogether and threatened to kill me and herself - off to A&E we went. Service now said due to autism to back off as long as she is eating and not losing weight. That's been the last month.

DD has a handful of safe breakfasts that she rotates, and one safe lunch. Dinners are the problem - she has no safe meals, takes hours over deciding on a recipe which has to be from scratch, there are panic attacks during meal prep so it takes up to 2 hours, then after eating says she feels guilty because she got no pleasure from eating. So won't do that meal again.

I can't go on like this, I'm completely exhausted. I've bought some veggie sausages and salmon fishcakes (things I know she ate when she was younger), and meals for the next 3 days are going to be what I serve. She screams at me multiple times a day anyway (she's currently yelling because i didn't buy carrot batons, but she didn't put those on the shopping list!) so I figure i may as well make my life marginally easier. What's the phrase - may as well be hung for a sheep as a lamb?

She says she wants to get better but equally will not entertain eating over 1500 calories or steering away from exact macro and micro goals. She's hungry all the time but won't eat snacks because she's worried she'll binge - she's been 5 months binge free. I'm sick of hearing about UPF or fibre, I've tried pushing back to say not every meal needs to be balanced or even every day, and there's tiny glimmers of understanding and then 10 minutes later the screaming. God knows what the neighbours think.

I don't even remember what a "normal family meal" would look like anymore. My own relationship with food is screwed. She's always been picky around food because of the autism but it was more textures rather than brands. The specific brand insistence seems to be the ED voice. But then part of me thinks, we all have preferences, right? So I need to pick through what is a preference because of texture/flavour and what is calorie/macro driven?

Sorry that was a ramble.

@WhatsitWiggle I can totally understand your frustration. If it helps, DD has been eating the same breakfast, same lunch, same snacks etc for a year. Dinner is a rotation of 3-4 different meals. I think for some esp with autism it's the only way. I have no way of getting DD to branch out.

I think you said she is doing 3 meals and 2 snacks. Can you add another snack? If you cook, try to hide cals. Extra oil. Is she having milk? We mix double cream into the milk (mix it into the bottle we keep in the fridge - DD is pouring her own glass and doesn't know). It blends well and adds quite a few extra calories. ED team are not really excited about the hiding but screw that. If there is no help in adding cals, we do it our way. She will keep losing on 1500 cals. Do you know her weight for height?

@Curlyhairedassasin she's doing 3 meals and one snack. Refuses to add another snack. She prepares everything and is on me like a hawk.

I think the only way forward is for me to present a snack in a "i made this but it's ok if you don't want it". And with dinners, I'm making this for myself, there's enough if you'd like it too. When she said she'd let me prepare dinners I didn't realise that would mean her hovering over me, weighing everything multiple times, screaming that I'd used "the wrong oil".

I feel like I need a supernanny character - someone in my home, guiding me how to respond to each thing. Does that exist?

It's so hard. Some here have really good advice re FBT (when the parent takes control of all eating). It doesn't work for us at all. We have been dealing with this shit for 2 years now and nothing for better. I hope someone else comes around with some more practical advice. I can only sympathise. FTB isn't working for everyone and I think it's less successful for those with autism (DD is likely autistic too, just not yet formally assessed). It's utterly exhausting. DD is hovering too. Prepares all meals herself. Hence we resort to the cream hiding in milk.

@Curlyhairedassasin 2 years?! Oh my word, you must be utterly wrung out.

We started out with anorexia 2 years ago. Now we are still dealing with it, waiting for an autism assessment, DD's MH started spiralling in the last 12 months now we are dealing with extensive self harming, suicidal thoughts (incl one overdose attempt), hallucinations, paranoia, voice hearing. DD has to leave mainstream schooling a few months ago and is attending a PRU on a reduced timetable. Waiting for EHCP to get sorted now. I really don't understand how we got to where we are. A lot of services and people involved but we just keep swimming. Nothing is currently getting better.

Greydoor I would 100% take control again, sod what the professionals think, you know your dd best. I'm monitoring my dd and will happily step in if I think she's slipping again.

Wiggle I also think you need to take control, I believe FBT does work in 99% of cases but you have to brave the shit storm it inevitably creates.

Suicidal, violent behaviour is to be expected when you push them to eat but once you break through that pain barrier the relief from them is palpable. Your dd wants you to make the decisions, the anorexia is tormenting her and will punish her whatever she chooses.

My dd threatened to kill herself, banged her head on the walls, screamed, shouted, told me she hated me, wished I'd die etc.

This is all completely normal and to be expected.

What I will say is that some medications can help with the intense anxiety so that might be worth pushing for.

FBT is also not always possible in the home environment for all sorts of reasons and it's fine to accept this but at that point I'd massively push for them being sectioned and admitted to an inpatient unit.

It's unfortunately common for anorexia sympathisers to end up working with kids with eating disorders and they will undermine what the parents need to do.

@Girliefriendlikespuppies DDs mental health is terrible, she's on anti anxiety medication already (private prescription) and I'm chasing an anti psychotic as well. She has attempted suicide and self harms, even prior to the ED, so I'm gentle as this was the approach that got her out of autistic burnout. She has a PDA profile, believe me that force or any control on my part will not have a positive impact.

In her calmer moments, she explains her plan for recovery and I encourage and support, and that will be our way forward. But the ED voice takes over so much. The good moments are so good, I just never know what's behind it to make it happen again.

I made dinner tonight. She's refused to touch it, not a bite. And won't make anything herself either.

@WhatsitWiggle
It sounds as is your dd is permanently in fight or flight, unsurprising with the amount she’s eating. It is brave of her to try the food you’re eating. And I’m sorry she refused last night. What you’re doing is working enough to keep her functioning and safe to be at home so please don’t think you’re failing. You are keeping her alive.

My dd is likely autistic and also has a PDA profile, even the useless CAMHS psychiatrist recognised these could be the case. The approach has also had to be a lot more gentle including some soft affirmations as advocated by the workshops I’ve done. I’ve also had to really change how I parent dd.

As for FBT, with dd this is modified. She only eats dinner with us. She eats breakfast, lunch and her snacks alone or with her friends. I did have to use carrot and stick with her to get her to eat. But it was gradual. Dd ate the same thing every day for months. It was the only way she could eat. And it is still pretty much the same for her still 9 months on. She eats the same every lunch and the same for dinner albeit unless we have takeaway or pizza round friend’s houses.

I see your dd is obsessed with the food being balanced... but idk if it’s actually balanced or the ED voice saying no fat, low carb etc. If you do the same thing every day, maybe she will relax more. If it isn’t balanced and if your dd can learn to relax around you making food for her, you could perhaps modify it ever so slightly at an imperceptible level until it is, increasing the quantities in micro doses. Using this method, I got dd from eating 400-500 calories a day to 700ish for the one meal she would eat a day.

To get her to this point as I know right now your dd is hovering over you, I’m wondering if you just let her hover for a week and she sees you doing always the same thing she may slowly back off. Maybe if she isn’t you could do it in stages like some kind of controlled crying so for example firstly she does what she’s doing, next she stands and watches but doesn’t say anything about the food or very little until she says nothing, maybe next she sits not saying anything about it, maybe next she comes into the room to check and doesn’t stay etc.

I totally am going for the brands atm with dd. She will only eat mozzarella sticks from Sainsbury’s for example.

@greydoor
I am sorry that things have slipped backwards. Idk how you approached getting to where you were before this current situation and it seems as if you could hide a lot of calories. I would totally do this again as you have the option to do so. Hang what the CAMHS caseworker is saying. This is your child. Not theirs. So I agree with @Girliefriendlikespuppies about pushing back, going through the difficult stages again. I know this will look different depending on whatever point is possible with your dd.

Eight kilos in a couple of months is an horrendous amount of weight to lose. Can you ask for a different support person? Can you complain? This is PALS level complaint imo… not that my PALS complaint against the psychiatrist (who told us dd doesn’t have anorexia and gave dd permission not to eat completely trashing the FBT I’d just established with dd) got us anywhere…

As for us, things with my dd are going ok. I know I’m winning when dd asks me advice or indicates she needs permission to eat. And I know I’m having to be hyper vigilant when she pushes back and I need to make choices on whether to push or whether to ease off a little so that she can find herself in this and motivate herself to eat. It’s such a tricky game because she could easily refuse to eat.

And I’m having to be super chilled when she threatens to stop eating. I just simply say ‘ok’ and tell her it’s a shame that she won’t be able to do x. And any goading from her I counter with things like I’d really like her to do x and to keep herself safe and healthy it’s important to fuel her body. At 16 I can’t go in heavy, especially with the possible PDA as she would literally fight me to the death.

Happy Christmas everyone. I hope you all have a good day despite everyone’s struggles.