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

994 replies

greydoor · 21/03/2024 15:14

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

OP posts:
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11
Rusticanella · 11/08/2024 18:35

Sorry, also to answer, I don't know her height and weight- not sure I even have a set of scales in the house...

Rusticanella · 11/08/2024 18:36

Rusticanella · 11/08/2024 18:34

Thank you @greydoor

I must be honest- I am terrified. We would never leave the house. She has currently been musing the same bag of crisps for an hour and a half.

How did you know you hadn't pulled the trigger too early? Family are telling me not to make a big deal, just ignore it and she will eat more, don't make a battle. Which I kind of get, she was a BLE baby! But my gut is that being relaxed is meaning it's going in the wrong direction.

So many typos!

Nursing a bag of crisps, and she was BLW

greydoor · 11/08/2024 18:50

It's so hard in the early days to figure out what's going on. We probably took about 2 months to figure it out, and we were still telling ourselves lots of stories, "maybe she's eating healthily", "maybe she has low iron" "this is probably a phase".

One day she told me she had eaten breakfast before I got up, and I made her have a banana before she went to school, and I then found it flushed down the toilet. So that was that really, it was obvious what was happening then. Probably quite a good thing to be honest. The day we started 3+3 she was in a complete panic when I told her she needed to eat two biscuits and a glass of milk for her morning snack, and that pretty much confirmed it.

I remember texting a family member that day and telling her I was terrified, and that I didn't think I could do it. But we are MUCH further forward now - my dd is restored in weight and will eat what we ask her to, and we are now starting to work out how to help her learn how to manage herself a bit more. There are lots of positive stories, and people can and do recover.

OP posts:
Rusticanella · 11/08/2024 18:58

Thanks @greydoor I've started to speak to her a bit about the sort of treatment, and what will be required to get things right again. And you are right, complete panic and comments such as "you can't do that" "that's horrible" etc.

How do you actually get them to do it? Just stay calm and carry on? Remove things- I feel like she will happily sit at the table and just not eat.

greydoor · 11/08/2024 18:58

And also to say we didn't go out for a long time! She was off school for a couple of months and then back half days only for a couple more. The days consisted of long battles over food initially, and desperation to go out and exercise . I got signed off work for a bit, and me and my husband juggled it between us.

She seemed quite well right up until we realised, then things seemed to deteriorate fast - I think because we were seeing the anorexia, which usually can thrive in secrecy.

OP posts:
Proseccoismyfriend · 11/08/2024 19:11

Welcome @Rusticanella I was the same as you and had family members telling me not to make a fuss, just let him pick and choose. That's what anorexia wants as it chooses nothing and gains more control over your dc. When he kicked off over breakfast and threw it across the room instead of eating it I knew how much I had to fight back for my child, it's like they're trapped and you need to guide them out in anyway you can. Every food eaten is a step in the right direction, some manage to get 3+3 established quickly others build up to it but either way that is what they need and as much fats as possible, don't be afraid to be sneaky and hide extra calories in things. I'll never forget the day my honest reliable child had tried to flush snack down the loo whilst promising it had been eaten, the ed turns them into a completely different person. You can bring your child back and it's still absolutely terrifying, by far the hardest journey my family has been on. Unfortunately unless you've been here people just don't get it and take eating freely for granted. Don't be afraid to push the gp, I also thought I was making a fuss and our diagnosis would be different but without the advice and support from ppl on here I really think he would of collapsed, we allowed exercise to continue as he looked thin but like him and said he was fine. Stopping sport caused a massive meltdown and but also helped us getting him to eat for example eat 3+3 and do ....... clear your plate and you can go to ...... use anything you can to get her to eat. Stand your ground mama you got this

Girliefriendlikespuppies · 11/08/2024 20:28

Rustic I felt the same as you when dd was first diagnosed, at that time she was barely eating anything and running 5k a day. I had a similar realisation as grey and found a banana hidden in the garden.

You have to be very very strict, at the first ED appointment they told dd all exercise stopped and she had to eat 3 meals and 3 snacks a day.

She went ballistic, FBT done correctly is complete carnage- this is normal. Your dd has basically trained herself to be terrified of food so being forced to eat triggers a massive flight or flight reaction.

However food is their medicine and eating is non negotiable. You use whatever leverage you can, anything you think will work.

I took two periods of extended sick leave to get dd eating, in the early days you will spend every waking hours either preparing food or sitting with your dd getting her to eat it.

The exercise is really dangerous if your dd isn't eating enough so it has to stop 🤷‍♀️

Ignoring it, giving them more control etc is the opposite of what needs to happen and this advice is usually given by people who have no clue about EDs.

Rusticanella · 11/08/2024 20:46

Thanks all. Have spoken to my DH, I am not going to start the 3+3 thing until we have seen GP. Just because we are not ready or equipped and need family support etc.

I think we have probably just about hit 800/900 calories today. But mostly because I cooked her a steak which she probably ate half ish off and it was drowning in butter.

She never moans or comments on her body size or thinks she's fat- in fact, she acknowledges that she is tiny.

I'm so conflicted, as if she ate each meal like she did tonight I probably wouldn't be worried. I'd rather she ate more, but not worried. But that is the biggest meal in days.

Rusticanella · 11/08/2024 20:50

Thanks again @Girliefriendlikespuppies

I really appreciate it. May I ask, how much was your daughter eating at the time of diagnosis?

It's just so hard to comprehend what we may be heading towards. She's in her room playing an online game with her friends and sounds so happy.

The only thing I can use as leverage will be the phone/laptop. All the other stuff she will just shrug her shoulders at.

She also isn't exercising (well, no more than her activities/sports that she normally does) she isn't exercising obsessively as well as restricting I mean.

Mummyoflittledragon · 11/08/2024 23:01

@Rusticanella
I was like you, relieved when my 16 yo dd ate more - she was 15 when this started. But please be aware this could be lulling you into a false sense of security. 800/900 calories is nowhere near enough and it’s a one off. My dd was eating about 900 calories for a few months whilst doing a lot of exercise. I thought it was a phase and she would recover. Then she reduced to 400/500 calories with once, possibly twice a week a ‘top up’ meal totalling 1200 calories, occasionally up to 1500 and those extra calories would keep her going for a few days so to speak. It was on knife edge. She self imposed a rule of no eating before 8pm. I was doing everything I possibly could, like you, to increase the calorie intake a little. But that’s just sneaking in extra calories and very much leaving the eating disorder in control.

The brain alone needs 500 calories to function correctly. Once a person is eating this little, they body will prioritise vital organs and some parts of the brain don’t need feeding to survive. As Girlie said, your dd has trained her brain to fear food. My dd thought she didn’t need food to live. The body of a teen girl of your dd’s age needs maybe 1500 calories before any movement / exercise so even if sedentary a girl needs more than this. An Active girl would needs maybe 2400 calories, more depending on activity levels. To recover from a ED the body needs extra calories again for the necessary repair work and I have been told the brain takes 5/6 months to recover.

All this to say you are not overreacting and your GP should be putting in an urgent referral to CAHMS. The faster your dd has intervention, the less time she has had to ingrain the way she is currently eating. Getting to the point of 3 meals, 3 snacks was a massive hurdle for dd and we needed to build it up slowly as dd would not cooperate at all with me so we have needed a lot of outside help. Everyone is different on that score and some will take to it easier than others. Consistency is key.

We are on holiday atm. Two days before we went, I put the 3 plus 3 in place. Dd was told the day before that that was the last day she’d be able to eat as she had until then. The following day she was presented with 8 am breakfast and told if she didn’t comply to 3 plus 3, we wouldn’t be going on holiday and we meant it. Dh and I would have cancelled the holiday. We slowly worked up to this point btw, introducing lunch first and upping the calories any way possible. The hurdles for dd were much smaller in the beginning. But the idea is that your dd has to want to do something more than she wants to restrict her eating. So if she wants to go out with a friend, she has to eat a good meal before she goes.

We went out to lunch today and dd knows she has to eat snacks and meals. She now is at a point, where she defers to me. She asked me if she had to eat her croutons because they weren’t nice whereas before she just would have not eaten them and wouldn’t have eaten any carb at all. I said she didn’t have to because she had chips and the bun from my burger (gluten makes me ill) with her salad. But had I said she needed to, she would have eaten them otherwise we’d have had to go straight home. It sounds really controlling but right now dd doesn’t have yet have capacity to make healthy choices.

As for sports, I was also terrified of removing sport. My dd wasn’t depressed. She was subdued as the brain wasn’t being fed, like a different person. We didn’t stop dd from dancing but she was doing her GCSES and it was a difficult time. Had we removed sport, I feared she’d be hospitalised, which for her due to her medical condition and anxiety around all things medical would be catastrophic. We did stop her at half term when she’d sat the bulk of the exams. Dd was shredding weight by this stage. Almost a kilo a week. But it was actually her dance school and I, who jointly decided this so dd couldn’t blame me and she knew I was going to talk to them as it was time.

I was told on this thread that dd was probably doing so well despite when exercising several hours a week and eating such a tiny amount because she is sporty and therefore has or rather had a lot of lean muscle tissue. As she lost weight, she slowly ‘ate’ her way through her muscles. And please remember that the heart is also a muscle. All this to say, we took a risk with dd and she is ok. But it could have been rather different and because she refused all medical obvs we didn’t know her state of health. In the end, she was given two choices at a CAHMS meeting, agree to BP, pulse and oxygen sats or be admitted under the mental health act.

Rusticanella · 12/08/2024 00:09

@Mummyoflittledragon thank you.

She has actually come out of her room an hour ago off her own back and asked me to make her a pesto fried egg, which she has eaten. I wonder if eating a bit better at dinner has actually made her hungrier.

3 meals 3 snacks I could def work up too I think. I couldn't see how we could go straight too it. But glad to hear you have managed to work up to it. She has a wide palate, and doesn't seem to have any food rules as such- just eats so little.

I will push with the GP tomorrow to make sure they do health check- if I can get an appointment that is. she will let them do blood pressure and sats/heart rate etc. Getting blood from her is going to be traumatic.

She is quite thin now- she has given me a hug whilst I was sitting down and I could feel all of her pelvis- she has had a sleeveless vest on today in the heat, and her arms are really quite skinny. She certainly doesn't have the physique of a 15 year old at the moment.

I almost feel a bit like I'm over reacting as she is still eating, and I suppose in my head girls with stereotypical ED eat an apple a day- but I do feel like we are on a knife edge, and if I stayed relaxed something would take hold of her.

It's hard to know what has sparked her eating this afternoon- maybe me speaking about the research I'd done, and the treatments for anorexia etc. Or maybe she is just kidding me along.

I feel like I need a health assessment of her, and then go from there.

Sorry- massive brain dump.....

Thanks to everyone who has replied- and good to hear your young people are doing better

Mummyoflittledragon · 12/08/2024 05:48

As long as you call first thing, I would be very surprised if the GP surgery fails to give you an appointment. ED is taken incredibly seriously. I don’t know enough about how ED works as to say how positive it is that your dd has asked for food. However it is good she ate more yesterday. I hope she manages to eat better again today and as your dd can eat more, I would try to use the opportunity to build on this. She really needs to be eating well over 2000 calories to be doing the sport and not shredding calories.

Instead of asking and waiting to see what your dd wants, the idea with family based treatment is that you tell her you’re making food for x time and you decide on the food. Then you tell her it’s ready and for her to sit at the table with you and you eat the meal together. Deciding what my dd eats doesn’t work because she was eating such a tiny variety of food when eating 400 / 500 calories. But it seems to with most people. My dd is quite possibly autistic so her treatment needs to taken this into consideration. With your dd, it looks as though she is eating more variety than mine so I would try to create a meal plan based on a variety of favourites and then expand. Ensure that there are plenty of carbs, fats and protein. Eggs are brilliant, so is pesto.

Tell her that she needs to nourish her body before sport and again after sport. No talk of calories. I was secretly counting and weighing every morsel of food dd ate to get a correct count, before and her plate for any leftovers. I see your dd isn’t exercising outside her sport. My dd is the same. I am still monitoring her steps as she likes to go for long walks with friends. I use her iPad to see her steps and can track her on my phone when she’s out. I am putting a stop to that if she walks too far, telling her to come home or I will pick her up and even doing things like driving her to and from the park so that she could hang there but not walk far - her friends would encourage her to go for picnics as she eats better with them. She needs to curb the walking even if she eats 2000 calories as she needs to eat more still to be able to freely exercise as weight gain is the goal.

Apart from the step count, I am noting down all food consumed after each meal. I can’t count the calories anymore because she’s eating a lot and she is slowly eating more variety. We are on holiday still and we brought a friend last minute as the presence of a caring friend helps dd to relax and eat more - we weren’t sure if we could even go until just before, which is why the friend is last minute. Still no meat yet, she went veggie in what I now know to be about the end of month 2 of restricting and apparently going vegan or veggie is often common with ED. Dd won’t get on scales (likely neuro diversity) and the proof for us is that she’s putting on weight.

Girliefriendlikespuppies · 12/08/2024 08:27

Rustic the other physical symptoms include periods stopping, hair becoming thin/dull, they feel cold all the time. My dds periods stopped for around 10 months and she was eating about the same as your dd. My dd always ate well at dinner time but had stopped eating breakfast, lunch and snacks.

Because she ate her main meal I was lulled into a false sense of security for a long time.

Anorexia can be purely biological reaction to weight loss so body dysmorphia doesn't necessarily come into it.

Rusticanella · 12/08/2024 08:41

Tanks both.

Yes, I was aware body dysmorphia doesn't always come in to it.

She has always been quite a cold child, but def worse lately. Her hands are icy.

The more I think about it, the longer I think it's been going on actually. Not full blown ED, but certainly eating not enough. I suppose I just thought you do see some very very slight teenage girls and she was just one of those. However naturally she was not built like that.

Mummyoflittledragon · 12/08/2024 09:03

@Rusticanella
My dd was like this, biological reaction to weight loss. She did then enjoy her new figure but failed to see when she had reached the point of being dangerously thin and admitted to me she wanted to lose more weight. Therefore at some stage it tipped into some degree of dysmorphia but I think that was (hopefully) more correlation than causation as thus far she isn’t having issues with gaining weight.

The restricted eating is often going on a lot longer than we realise when tracking back. We are just playing catch up when it really becomes apparent.

If your dd is only eating 500 calories under protest, playing with a packet of crisps rather than eating them and eating 800/900 on a really good day, in my experience as a mum of a child, who was in this situation until very recently, this is full blown ED. And right now, it’s the ED in control, not you or your dd.

As I said in an earlier post, my very sporty dd was coping with a high level of restriction very well because she was consuming her muscles for energy. Maybe this is the same for your dd. Anorexics seem to have boundless energy until the point at which they suddenly do not. And things can get dangerous very quickly.

As your dd has lost a lot of weight, is icy cold now, she really could be getting to a dangerous point. Please heed the advice to go to A&E if you have any concerns and / or your dd is eating 500 calories or less in a day.

She really shouldn’t be doing any sport right now and presuming she has sports coaches, there will only be a matter of time before they approach you to tell you your dd is too poorly to participate.

Rusticanella · 12/08/2024 09:26

Appointment booked for 12.40.

Any pointers on what I should push for or ask is much appreciated.

She is still having periods, so hoping that's a good sign.

Mummyoflittledragon · 12/08/2024 10:32

The GP when I contacted him (over phone as dd wouldn’t go in) made an urgent referral to the ED clinic at CAHMS. Idk what the standard is but you can ask the GP to do BP, pulse and oxygen sats.

You just state the facts. Around 500 calories a day and you have to push your dd to eat. Occasionally more. Try to remember the length of time this has been so low, when you think things started etc.

The ED clinic will do the rest and if the GP has immediate concerns you’ll be directed to A&E.

greydoor · 12/08/2024 10:35

When we went to the GP I went in with her and said I was worried about her eating and I thought we needed some help. The GP then talked to my daughter alone, and took a height and weight, and some blood, and then agreed to refer us over to CAMHS. I found out later that she had said to the GP she was also worried and she hadn't meant to get into this situation but she was feeling stuck.

It was quite short to be honest, although they were very supportive and kind, and said we could book an appointment any time if we needed just some support, which I haven't ended up doing. They also referred her for an ECG at our local hospital, this was also a pre-requisite for referral - we went and did that the next day. Pretty traumatic, they said her heart was slow but in a very blasé and dismissive way said this "was to be expected", with a disapproving look at my daughter.

We were picked up by CAMHS under their rapid assessment system within about 2 weeks and had a more in depth assessment with a consultant psychiatrist, who confirmed a diagnosis of anorexia nervosa. We then had weekly, transitioning to fortnightly then monthly physical health checks where they did ecg, height and weight, full blood and eating / mood / behaviour check in. We were on the waiting list for around 9 months before the eating disorder team picked us up for intervention, probably primarily because I am a mental health professional in my job (not with people with ED) and had read the treatment manuals as well as everything else I could find so was just getting on with things and she was putting on weight. I think most people don't wait as long as that.

OP posts:
Rusticanella · 12/08/2024 14:05

So not sure if that went well or not....

BMI put her on the 9th centile. She weighs about 6st3, with shoes on.

GP said this is fine- DD cited anxiety as a reason she doesn't eat so have been referred for counselling. Also GP has given me the paper work for ADHD assessment, which I have been meaning to do for a while.

I showed some photos which show the weight loss as GP did acknowledge it.

She seemed to think the anxiety makes her feel sick, and produces stomach acid so she doesn't eat, then not eating makes more stomach acid and so on. She did encourage DD to eat more, but ultimately said she was healthy. Which is great- but for how long if this carries on.

I asked GP how would we know if she's in any danger as not doing any tests, she just said you'll know as she will become tired and complain of heart palpitations 😟

I feel like I'm making it up in my head and making things worse

Rusticanella · 12/08/2024 14:06

This is the photo. Right hand side was 4 months ago, left is last week.

Support thread 12 for parents of young people with an eating disorder
Curlyhairedassasin · 12/08/2024 14:14

I wouldn't be happy with that @Rusticanella . I guess you feel dismissed. It's not just the weight per se (which is low) but the direction and speed of travel. They don't use BMI in children but ED clinic use a WFH (weight for height percentage). I have a calculator and can compute the figures for you but I need weight/height (metric) and rough date of birth (month and year). How much is she eating? if under 500 cal per day for a few days, take her to a&e as she needs certain checks (bloods, ECG, sitting and standing blood pressure). Did the GP do any of those? Or just weight her?

Mummyoflittledragon · 12/08/2024 14:15

Did you tell the GP she was eating 500 calories a day?

What is her height? How much weight has she lost since 4 months ago? What centile is your dd for height? The 9th centile just means that 9% of girls her age (mostly short and slight) are the same weight or thinner than her.

Rusticanella · 12/08/2024 14:19

Thank @Curlyhairedassasin

She weighed her- I used the NHS teenager BMI, which isn't actually BMI just gives centiles, and asks for date of birth etc.

If you could run it through your calculator that would be fab. Can I PM you details?

She ate more than 500 yesterday for sure. I'm using MFP and she was somewhere between 800 and 900. Today we are at 698 so far, so doing well, but that is because I have sat with and made her two meals. She has just left the table though without finishing a bowl of pasta- which I asked her too. So sitting here contemplating my next move.

Rusticanella · 12/08/2024 14:22

@Mummyoflittledragon sorry should have said, she is 9th centile on NHS BMI calculator for teenagers/children.

www.nhs.uk/health-assessment-tools/calculate-your-body-mass-index/calculate-bmi-for-children-teenagers/

Yes, told her 500 calories, told her she spent all afternoon eating half a bag of crisps.

She put the heart rate/sats monitor on her as I insisted and said all fine. Said they don't take blood pressure in children....

Rusticanella · 12/08/2024 14:24

Can't seem to PM on app.

August 2009, 5ft, 6st3

Thanks @Curlyhairedassasin