Support thread 12 for parents of young people with an eating disorder

[greydoor]

Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Rusticanella I went with 152cm/39 kg as the calculator is metric. Gave me 84.6%WFH which is actually really low. DD wasn't allowed to go to school anymore to preserve energy when it slipped below 85%wfh. DD ended up as an emergency admission to the HDU when she was for 3 weeks on 700-800 cals per day and her WFH was 84%.

She really needs to massively increase her food intake. You will struggle without support. I would go back to the GP very soon if no improvement and insist on a referral or take the a&e route. Being dismissed over and over again is unfortunately something which is common. Many of us here have DC who only got help after attending a&e and being admitted. If you are ever concerned, do not hesitate to take her to hospital. and if course they check blood pressure in children. Sitting and standing pressure is a standard check in those with anorexia.

Thanks @Curlyhairedassasin

I don't understand why the GP has not done more. She honestly didn't seem worried at all.

Told me to make a meal plan, cook the food she likes etc. Which is basically the only way she would eat anyway so feels a bit patronising.

I asked how many calories she should be eating (for DDs benefit really- I know what she should be) and she said adults they say 2000 so for DD as a child it about 1500 is fine. Which I've literally never heard.

Good news is, DD is eating better than she has for weeks, and has helped herself to ice cream.

She gets very worried about being ill, and maybe me talking to her like she has an ER (binged watched Eva Musby on YouTube) has kick started something.

Or maybe she is just kidding me along...

@Rusticanella lots of great advice already. Just wanted to say that if you can afford it it might be worth making an appt with a private ED psychiatrist. They will take this very seriously and put you on the right track. Rapid weight loss in a short period of time is what they will look at. Early intervention is key to prevent the ED becoming entrenched. It’s good that her obs are still all ok but, unfortunately, anorexia is like a train and once it takes off it is very hard to stop. The bar for treatment on the NHS is very high and we were dismissed multiple times over a period of two years. By the time our ED service took us seriously our DD was at the point of collapse and the ED had a very tight grip on her. The road back to health is at least as long as the period of time they’ve been ill so can take years. Nip it in the bud if you can, it will control all your lives otherwise - potentially for years.
Most people with AN have perfectionists tendencies and suffer from anxiety.
Motivation is key to recovery. She has to want something more than the ED e.g. sport, outings with friends, holidays. Therapy has been helpful for us.
Distraction is helpful during and after meals, watching TV, playing games etc
Don't comment on how thin you think your daughter has become. Apparently this is exactly what the ED wants to hear and will spur her on to restrict further.
Good luck X

I asked how many calories she should be eating (for DDs benefit really- I know what she should be) and she said adults they say 2000 so for DD as a child it about 1500 is fine. Which I've literally never heard.

normal teens need a lot more than 1500. they need more than adults in fact as they are growing and a teen recovering from an ED needs even more. DD is only managing 2000 cals per day and not gaining. it's actually going down ATM a bit again. Can you book an appointment with a different GP? The one you saw knows clearly nothing.

I agree with @Curlyhairedassasin in that getting another GP may be useul @Rusticanella - According to BEAT the average teaching & assessment time in undergrad as a Dr is 1.8hrs Not all GP's understand its not just WFH but speed of weight loss. This is a link to the medical emergencies in eating disorders (MEED) which should be used - the annexe is helpful but if you go to Chapter 2 you'll get a sense of the amber/red flags.

https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr233-medical-emergencies-in-eating-disorders-(meed)-guidance.pdf?sfvrsn=2d327483_63

We're not saying this to frighten you - and I know it can be so overwhelming. I would say almost everyone who has ever posted on these threads will have been in the place you are now - seeing and believing but not wanting it to be true. I'd continue to lean to ED until you've seen real sustained change in eating patterns. Most of us on here have also felt the force of the kickback from the ED when you start to wrest control - it can be hugely destabilising and destructive but these threads really can hold you up.

It’s ok, I understand that. I’m saying the 9th centile simply says 9% of 15 year old girls are either the same weight or lighter than your dd. A lot of those girls will be slight and some shorter than your dd. It also definitely doesn’t mean that all 9% of girls are a healthy weight. Moreover it means 90% of 15 year old girls are heavier than your dd.

I see that you now have a weight for height. My dd was low 80 wfh, maybe a little lower than your dd at her lowest point and she was painfully thin but similar. To put your dd’s wfh into context, my dd wouldn’t do BP, pulse or oxygen sats. She was given a choice by the ED team, agree to it or be admitted to hospital under the mental health act. Your dd’s GP didn’t even do BP. And it’s BS that they don’t take children’s BP. My dd has a medical condition and had her BP taken from young.

I understand your dd isn’t very tall but 500 calories will still be what her brain needs to function, that’s without considering any of her vital organs. We can see from those photos that she’s shredded weight in the last 4 months. I would be going back for a second opinion with a different GP. Take someone else with you, who can advocate for you. Just because your dd’s vitals were fine today, that doesn’t mean she’s fine.

As for the GP talking about anxiety, my dd is anxious, that’s why she all but stopped eating for 2 weeks then went to extreme restricting. Not eating is not eating whatever the cause and lack of food exacerbates anxiety. Idk if your dd is just going to miraculously start eating again but please do not listen to the GP about intake and you and your dd not needing immediate intervention. 1500 calories is far too little for a child of her age especially as she’s active, been restricting for a long time and needs to regain the weight. If you allow your dd to continue to exercising eating a regime of 1500 calories, she will continue to lose weight and eat her muscles (ie use her muscles for energy).

We are using a private ED coach. She isn’t qualified to diagnose but she’s got dd eating again. This route is very expensive but she would be horrified at what you’ve been told.

Please go to a different GP taking someone, who will be more forceful. And if you have any concerns take your dd to A&E. They will not think you’re wasting their time.

Do you know what centile line your dd has been on historically for weight rustic? My dd was seriously ill at 90% wfh (periods stopped, hair falling out, low heart rate and bp etc) however she'd always sat on the 90th centile line so going under the 50th centile line made her very ill.

84% wfh is very low and quite often would mean no school, no exercise etc.

That GP sounds useless but sadly I'm not surprised, it's so hit and miss with Drs and their understanding of EDs.

That said you maybe able to get her back on track by getting very strict with 3 meals plus 3 snacks and keeping a close eye. I'd bypass the GP and take her to a&e if she starts restricting to 500 cals.

Also check if you can self refer to the local ED camhs service, in some areas you can.

Hi, thanks to everyone who has taken the time to reply. It really is so helpful. Have to love Mumsnet for that!

Will try to answer some questions- she has always been low on the centiles for weight and height. At time has gotten up to 50th, but been as low as 9th before. She was involved in a very competitive sport quite young, so was exposed to "healthy eating" from a young age. She hasn't done that sport for years, and now does a less competitive version twice a week.

Re centiles- I know that that just means she's lighter than 89% of her peers, but at the time that's all the info the GP really gave me so was all I had to go on regarding if and how much she was underweight.

I do think it seems the GP knew less than me to be honest. When she refused to do BP etc, I did actually ask outright how long do we carry on like this, how do I know she isn't going to have a heart attack next week. The GP said "that doesn't really happen in children". Was just so weird.

The absolutely crazy thing is, since I started posting yesterday and researching- I basically told DD what the treatment would be if she didn't eat re FBT, tube feeding etc, and she's actually bloody eating. And being reasonable and measured about it. For instance, she said she felt full at dinner, so I asked her to have a break and a chat for 2 mins and then carry on and she did.

36 hours ago we were screaming over her taking 45 mins to eat a rice cake....

She's eaten 1555 calories today with really very little fuss.

@myrtleWilson thanks for the link- I did fine something online and she did appear to have a couple of amber/red flags. I am going to go through it properly now

It’s great that your dd ate this much yesterday. It’s still not enough to sustain her nor to do the repair work needed from a period of eating so little despite the misinformation from the GP. But if your dd really understands the seriousness of the situation and wants to make changes, it does prove to her that she can eat.

Please do not be lulled into a false sense of security. Your dd ate 1550 for one day. My dd would eat that on a really good day then go back to 500 calories for the rest of the week. This is why @myrtleWilson said I’d continue to lean to ED until you’ve seen real sustained changes in eating patterns.

As for having a heart attack, if you need to talk about your dd’s eating to medical professionals again, you really need to speak to a different GP. With ED you don’t actually have a heart attack. You go into heart failure. This can also happen when doing sport as the heart rate increases to deal with activity. This is a really informative video explaining what happens to the body when restricting and the nutrients required for the body to recover. This is a video presented by an Australian GP, who specialises in ED. https://www.eatingrecoverycenter.com/video/end-ed-dr-leanne-barron

This is a very basic suggested plan for increasing eating I came across when I was searching for information and saved it. I couldn’t do anything this prescriptive with dd but it gives you an idea of suggested meal planning structure and may be of some benefit. https://www.cci.health.wa.gov.au/~/media/CCI/Consumer-Modules/Break-Free-From-ED/Break-Free-From-ED---06---Eating-For-Recovery---Part-1.pdf

My dd now eats to plan. This gives you some idea of the sort of timings needed:
8am breakfast
10.30am snack (will move to 11 to align with school)
1pm lunch
4pm snack
7pm dinner
9.30pm snack

Dd seems to eat better as the day goes on and she seems to start grazing now at 8.30, which can last an hour, which is then her evening snack. This was just the official thing implemented when she was made to go to 3 meals, 3 snacks. To recover, your dd needs to eat protein, carb and fat with every meal and always full fat dairy.

If your dd really is interested in getting well, nutrition etc she should be taking a really good quality multivitamin at a minimum. My dd takes this daily. It says women but is fine for a 15 year old as it is for menstruating females. https://www.amazon.co.uk/gp/product/B09W9Y24VV/ref=ppx_yo_dt_b_search_asin_image?ie=UTF8&th=1

If she won’t take tablets, you can buy oral sprays. I would buy the ones produced by BetterYou as I know this is a good brand. You would need the multivitamin and the iron. Iron one tastes horrible btw. I was getting dd to take the tablet with the iron spray in the morning and the multivitamin spray in the evening. But she refused to do that after a couple of weeks.

If a GP doesn’t know the answer they should just say they don’t know. 1500 calories for a teen girl is clearly nonsense - it’s not even logical, most 15 year old girls I know are taller and more active than I am, so they clearly need more calories not less. When DS was panicking he would gain weight on his meal plan of 1200 calories his dietician said that was the calorific requirement of a toddler.

@Rusticanella just be careful you don’t get lulled into a false sense of security. DS will sometimes increase his calories by quite a bit to get me off his back but will then restrict over the next few days. He doesn’t have fear foods, he will happily got to Burger King and scoff a Whopper but then spend the next two days eating only apples and biscuits.

@Mummyoflittledragon
Thanks- have ordered the multivitamin- she will take tablets actually.

I suppose when I was talking to the GP about heart attack etc- I was just trying to ask her how do we know she isn't actually in danger without testing- that what I was trying to ask the GP. Anyway- the GP was clearly shit.

I did her BP last night which came up as very low, but in fairness, it had my cuff on which is way too big so have ordered a small one to come today.

@WoodenTrain thank you, yes I did think there is a risk of that.

Am going to carry on with meals and snacks today and eating with her like I did yesterday, and will think a bit more about GP again or something private

@Rusticanella Good, I’m glad your dd will take the supplement. I understand what you meant by the heart attack question. I was just giving you some info (in the video attached to the article) in case you need to ask the question again. The GP really should have thought about the question rather than dismissing your valid concerns. And yes, she sounds rubbish.

Hopefully your dd’s BP will be ok today. You’ll also get a pulse from the monitor, which is good as pulse reduces withe restricted intake. As you say, your dd’s periods haven’t stopped, which is positive. With my dd, hers spaced out before stopping. Have either of you noted down when the last couple were to see if they’re still regular?

How is your ds doing @WoodenTrain?

Thanks @Mummyoflittledragon they have still been regular- but yes, good idea to track from now. Sorry haven't read/watched the link just yet. Looking after a three month old and constantly feeding DD seems to take up all my hours!

Just off to the shops as want to buy some cream to go in porridge and on desserts etc- and need to buy some blue milk as we have semi skimmed.

Any other suggestions to add calories much appreciated. As its volume of food she seems to have an issue with rather than safe/fear foods

As its volume of food, the higher the calories the better. Dairy is great, hard cheese is normally a little higher in calories. Don’t worry too much if your dd won’t drink full fat milk, semi skimmed is also ok. Will your dd eat biscuits, chocolate, sweets, any kind of junk? All fine to increase calorie intake and plenty of carb, which your dd needs. Cheddars (as in the packs like mini cheddars) are good as they contain carb and dairy.

If your she likes dips these are often high in calories. Eg sour cream and chive dip, which has dairy. The one from M&S is the highest I found with 383 calories per 110g. This was dd’s ‘top up’ with Doritos (about 500 calories per 100g) and one M&S 230g dip is 881 calories.

Dd eats lots of humous with carrot sticks. Humous has carb, protein and fat. The highest calorie one I found is 330 calories, made by Moorish and can be bought in Ocado or Asda - the smoked one is horrible btw but that is the only one sold in Sainsbury’s.

I also used to buy dd Dodoni cheese crisps from Ocado but she seems to have gone off them. Idk where else sells them individually. Here’s a link to Amazon but quite an investment if your dd doesn’t like them but I think they’re yummy. They’re about the same calories as Doritos but are baked with cheese so have a much higher dairy and fat content. Dd has gone veggie btw - part of the ED.

To add: if your dd will eat beige food, fast food, also brilliant, the dirtier the better. McDonald’s, take away etc. These often come with higher calorie content.

@Mummyoflittledragon

Yes that's kind of why I was asking actually- as meals are a bit hard with volume- but she ate 2 Crunchie ice cream lolly's. I did think that at this moment all calories are good, but thought I should check.

We are at just over 800 calories today- but I don't feel like she is as game as yesterday. Yesterday she looked and was acting truly hungry.

I also found some Jersey Gold top whole milk which is nearly 80 calories per 100mls so made her porridge with that

Rustic I found you could add double cream to just about anything for extra calories. Does she like smoothies or milkshakes? They can easily be made up to 800 cals by adding double cream and ice cream.

I made dds porridge with pure double cream and bypassed the milk completely.

I added cream to sauces, scrambled eggs, soups, bolognaise, curry, pies.

I appreciate you've got your hands full with a baby and your dd but if you can home baking is often more calories than shop bought sweet stuff. Flapjacks, muffins etc can be made with a lot of butter.

An example of my dds plan when I was peak weight gain mode is.

Breakfast porridge with double cream 800 cals
Snack chocolate bar/cake 300-400 cals
Lunch scrambled eggs on thick toast with butter 800 cals
Snack Crisps (you can decant into a bowl rather than give individual packs to get a couple of packs in) 300-400 cals
Dinner Fishpie, chips and veg 1000 cals
Pudding - sponge pudding and cream
Snack - cereal bar 200 cals

I was aiming for around 3500-4000 cals a day which gave a weight gain of between 1-2 kgs a week. I also gave dd two milky drinks a day.

Thanks @Girliefriendlikespuppies that's helpful.

And yes I'll get some cream. She really likes porridge so hopefully that will be an easy win.

Bread she has never really eaten, but will eat pasta- I have made a bolognaise for tonight and I'm thinking if I portion hers off and stir an extra spoonful of olive oil in she's unlikely to notice.

I feel like she is complying pretty well and I'm really scared of overdoing it and making her go backwards.

@Girliefriendlikespuppies
That sounds amazing. I wish my dd would eat like that. She is suspicious of everything.

@Rusticanella
You are correct and I have given you the fast food options as in the beginning food is food, whatever form it takes. Right now I’m working on trying to increase protein with dd as she has found her appetite but she’s only eating very limited foods and mostly carbs. The next goal for her is to get the balance right.

Mummy my dd was suspicious as well which is why I had a strict approach to keeping her out of the kitchen!

I think the Eva Musby stock phrases are useful when they eye up the food suspiciously

'This is exactly the right amount of food'
'I know exactly what you need'
'You can trust me, I know what you need'
'This food is completely safe and exactly what you need'
'This meal is perfectly balanced and safe'

If dd asked have you added anything to this all of the above phrases covered the answer truthfully.

So- bought some scales. Weighed DD and she is 42.9kg, which puts her at a much more normal weight, which may explain why the GP was more relaxed.

I think what happened was a bad translation. She weighed DD in KG, but from where I was I couldn't exactly see, but could see it was around 40kg. GP then said to me that is about 6st3- which is what I reported back on here. On my scales it makes her 27th centile for BMI and by my workings about 92%WFH??

I am in no doubt that there is disordered eating here, so I am going to carry on as I have been and try to put on about 3kg and then go from there.

I think the GP maybe is not good at maths? Would also explain why she is still having periods and has some energy I guess

Hi all, I've been absent since about Feb. I will try to catch up on some of the thread soon. Just needed some advice. Long story short, DD went quickly downhill back in December and ended up weighing just 34kg (62% wfh). She avoided a&e and started eating again by herself in January, gained 6kg in the first week and 20kg within a month. I had no input in this whatsoever, she just chose to start eating around 3-4k calories a day, what she wanted, when she wanted. She's now around 50kg (92% wfh) and has been maintaining this weight since Feb. However for the last month or so behaviours have been coming back and eating has reduced a lot. She no longer wants to be weighed and thinks I have no right to weigh her or make her eat because she gained the weight back by herself, which is true. She is autistic so has a very black/white style of thinking. It's almost impossible to change her mind once she's decided on something. I've calculated this week she's eaten on average 700 cals a day. Is there anything I can do? FBT has never worked with her. She simply won't do anything unless it's her decision.

Hi @lyriccat I am sorry to see you and your dd are struggling. My 16 yo dd is doing pretty well atm albeit still very mentally unwell. We are using a private therapist and straight FBT didn’t work with her either. We are moving it round to what she describes as modified FBT. Dd isn’t diagnosed autistic but the therapist is treating it as though dd has both autism and PDA, along with this she thinks she is a combi of ARFID and anorexia.

She has advised us to treat dd like she is a much younger child. Ie like she is 10 in areas of eating and to give her as much freedom in other areas as we are able. To also make things very black and white as dd can only think in absolutes. To tell her we want her to do all the things she wants to do (maybe list some of them). However it would be irresponsible of us to let her go out and do x if she hasn’t eaten. So if she just eats her lunch (or whatever meal it is) and then she can go out. And stuck record it. The idea being that she has to want to go out eg to her friend’s house more than she wants to restrict her eating.

So everything my dd wants to do needs to come with a reward. If she wants to go out for the day, she needs to prove she can eat regularly so that I don’t worry about her. I worked up to 3 plus 3 eating plan in this way. Firstly dd would only eat 1 meal after 8pm. Then I got dd eating lunch by refusing dd to go to a friend’s house unless she ate. I got dd eating breakfast along with 3 plus 3 just under 2 weeks ago by giving dd the choice of following a meal plan or we wouldn’t go on holiday. She said she’d not eat at all then so I told her she could go on bed rest (and instantly wanted to kick myself in the mouth). It took her 45 mins to agree to it. We were in the car, and on the phone to dh as I / we spoke to her. Instead of going home, we went in the direction of the friend’s house we’d invited to break the news we weren’t going. We got to about a mile away then she cracked.

I imagine your dd thinks she can do as she chooses as she’s nearly legally an adult. I asked the therapist what she thought about this when my dd got older. She advised that as long as dd is under our roof, we get a say in how she eats.

All of this is giving my dd a binary choice. She either chooses to eat and do the things she wants to do or she doesn’t and stays at home. It’s relentless and I am making mistakes as I’m giving dd too much freedom on the food choices as she would never ever accept to eat what she is given so the next goal is upping protein as dd is eating a lot of carbs.

Basically it’s a glorified rewards chart and the therapist told me on introducing 3 plus 3 that I should tell dd that these are the basics of self care and if you want to do x and have these privileges then I would be irresponsible to let you do what you want when you aren’t nourishing your body.

At this point she also advised that we speak to dd about using the method we are using as we know it works and the idea is to give dd as much independence as possible. But that there is a journey to get there. So there are 3 stages. The first being full parental control then a gradual handover to promoting independence, which we know dd wants.

We are still on the holiday btw and we find having a friend around helps with dd’s eating so we have taken a lovely friend, who fits in really well with the family and who is really a great help in dd’s recovery. Dd isn’t objecting much to eating and using the method I’ve described above systematically it has worked so far for her. We’ve had tons of outside help from dd’s friends. She also went on holiday with a family last month, very specific and wonderful people, who know a lot about ED. All of this has really helped dd to relax and eat. Idk if there is anything or anyone, who could help your dd in this way.

Lyriccat sorry to hear your dd is restricting again. 92% wfh is classic extinction burst time when the ED suddenly gets really loud again.

I'd talk to your dd, explain you're worried and what will happen if she continues to restrict. Say how proud you are for getting this far and how you don't want to be back to situation she was in previously.

I wonder if something (or someone) triggered her? Do you know what she watches on her phone? Or if someone said something to her?

@Rusticanella - just wanted to hop on and say things sound hopeful. If you can assertively turn round eating habits then I'd be keeping my fingers crossed that you've caught it early, particularly given her historic growth curve. How have things been over the last couple of days?

Hi @greydoor

Not bad- we have been getting 1500/1600 calories in- which I know is not enough, but she is eating three meals and snacks.

Yesterday I'm hoping for 2000. I bought her one of those Huel shakes? And she was such a trooper as I could see she was struggling and thought she'd give up- I said I'd try some and my god they were horrible.

I have cooked a Keema type curry, and it has been very easy to get lots of calories in it- double cream etc. Whereas when I cooked the porridge in double cream she found it too much.

I can't say she is eating like a horse, but she is eating, and cooperating to a certain degree. I think I just need to really figure out my recipes. For instance, I thought heavy cream porridge would be a good one, but actually she ended up eating more calories with Crunchy Nut and Jersey Gold Top milk as she would eat more of it.

Thanks for asking @greydoor sorry I sort of ploughed in her and didn't really ask about your children- how is your DD/DS doing now?