DD13 eating <400kcals/ day

[mumoflittlemice]

Apologies for long post - trying not to drip feed although there’s bound to be things I’ve missed:
Our lovely ASD/ADHD DD13 who has had struggles with food for many years in ways that I (probably wrongly) wouldn’t have characterised as ED, now suddenly seems to be in the absolute grip of it. She has been eating a very regimented diet for some months of scrambled eggs (1-1.5 eggs) for breakfast, a tiny Greek style salad packed lunch for school, a mini cheese portion as a snack, fried egg and avocado bagel after school and then she would mostly eat whatever the rest of the family were having for dinner later in the evening. Then she stopped having dinner with the rest of us saying she was full from her bagel at 4pm. I could understand this and didn’t want to be pushy, reasoning to myself that overall her diet had a good balance of protein, veg, carbs etc and she was still enjoying treats here and there seemingly quite normally - an ice cream in the evening if we had some in, a brownie / cookie at cafe if we were out and about etc. I had noticed her being slightly more vigilant about food in general and she had lost some weight but looked and seemed healthy and energy generally ok etc…

Over the past two weeks she has drastically reduced her intake of food/ calories and is consuming barely 300-400 kcal per day, struggling when she eats anything - openly saying she does not want to eat - and we seem to be fully in a crisis. Her DSis16 nearly 17, DH and I are all desperately trying to support her and I am floundering, we all are. DD13 has lost about 3kg in the two weeks I would say. The only positive at this moment is it is all out in the open and she is talking to all of us (not loads or all the time and sometimes reluctantly) about this. I got in touch with her former therapist who was seeing her during eating difficulties and episodes of SH and she advised GP route first this time as she is actively losing weight. We have the GP booked for Tuesday.

I am really looking for advice on first steps here from parents who have walked this path. I am trying to educate myself on ED / AN etc. DD13 has also admitted recently that she previously had ‘around 3 weeks’ of making herself sick and says that she stopped that. She also says that she has a voice in her head that tells her not to eat etc. she believes she is fat even though rationally she knows she is not. She has become obsessed with coming with me on every dog walk (they are longish ones, about 3 miles twice a day) and I feel foolish for not putting all of these pieces together more quickly and realising how much difficulty our beloved DD is actually in.

She is 5’6” and says she is 58.8 kg. She was over 61kg about 3 weeks ago which I only know because we have to send her observations off when we want a repeat prescription of her ADHD meds. She weighs herself in private though so as much as I want to trust her, I can’t be sure she is telling me the real amount. Her appearance is very slim but not painfully thin, but she’s certainly heading in that direction if she loses more weight which of course she will unless she starts eating more. She seems absolutely trapped and I am desperate to help her. What is the seriousness of her situation right now (it seems very serious to me)? What first steps do we need to ensure we take immediately? What are the pitfalls to avoid and essentials? ED parents of teens who have been there, please can you advise us?

You can take her to A&E as well if she continues to lose weight and eat so little and you get worried - as they may need to check her heart rate/function. (I assume docs/nurse did this but it can get worse).

I'm sorry I've not posted much since the beginning..it's all rather triggering and so sad recalling those early hellish days.
But you are doing ok... in fact you're doing bloody marvellous.
I just cried through every meal the first two weeks.
If you are offered in patient treatment..I'd honestly take it, unless by then you are getting weight gain steadily every week.
And...if you have any access to funds seriously consider private help.
My DD after being discharged after a whole year in a specialist until , and her consultant calling the cahms ed consultant and telling them what high risk she was....still got half HR appointment once a fortnight and the psychologist told her it was ok to lose weight as everyone weight fluctuates.
They then said she was too sick for therapy and left us to it...
We paid for private treatment and I won't lie it was very £££. We re mortgaged and my parents gave me my inheritance early.
It was life saving .
I never understood why these kids don't get immediate intense therapy? South London and maudesley hospital in London...UK leaders in eating disorder advocates for this. They have intense treatment programs for teens that start as soon as the concerns are raised. It seems to work well.
If you want any recommendations feel free to message me.

@Theredjellybean thank you so much for your generous and supportive post. Goodness me, you’ve been through the wringer, I’m so sorry 😔 I appreciate all of you who have walked this path before me sharing your experiences, advice, wisdom and even the pain. Perhaps especially that. It makes you feel less alone and by god, as @Mummyoflittledragonsays, it can be very lonely at times.

Tonight I am on a bit of a high, although ever wary, as DD has done two days of really excellent regular eating. I guess my question is, am I being an idiot to be feeling so happy about this?! I realise that this could (and realistically, will) come crashing down, but it is SO good to see her eat. We are using the motivation of something coming up that she really wants to do and knows that she cannot do unless she is eating regularly what I say (because I’ve made that crystal clear). It’s actually been working and every time she eats properly - 3 meals and we are managing 2-3 snack - we can see her spark come back to life. Can it last? She has worried out loud a few times to me about when this particular thing is over, what if she drops off a cliff with her eating? At one point she was ready to give up on it before she’d really started, saying I just won’t go, forget about it and I thought we were done… but she found a little handful of courage somewhere and slowly but surely began to try, really try.

We are bringing her back to her private psychotherapist and seeing her tomorrow @Theredjellybean. We have been told that if she is accepted to the local ED service, she won’t be able to be in private therapy at the same time, but we have two appointments booked for this week and next, to get us to that point at least.

Thank you @Pearl97for your warm and kindhearted post 🩷

@Fluffyhogletswe are taking her hr and bp at home too, as an extra precaution

I am so pleased she is eating, it may last, you have to keep going and see.

Seeing the private psychiatrist is great. Remember not to tell the ED service about them as you say they don’t like them doing anything else. Don’t cancel the private therapy until you’ve been to the ED team a few times. You may find the private therapy works better for you. For the time being keep all avenues of help available. You’re doing so well, we know it’s not easy xx

It’s great your dd is eating. I hope she is able to continue. NHS services can’t stop you from using a private psychotherapist. I would be very wary of giving something up that’s working.

There was a thread a couple of months ago if you scroll back of a women, who gave up her private therapy and was devastated, because NHS ED services weren’t helping in the way she needed. This is not unusual. I think I told her to go back. But she didn’t respond.

As Pearl said, just keep it quiet.

As for being really pleased your dd is eating. Yes, it’s such a relief. And awful when things go backwards. So look after your mental health in case that happens. With dd it has happened enough times that I’m getting used to it and ride the wave a lot easier.

Well, as expected, now the motivating event is over, eating has gone back to painful. I am sick of it all today. So tired, fed up and there are plenty of other things in my life making me sad/ stressed. Lunch has so far taken DD over 2 hours to eat and she’s had less than half of it. DH is doing the heavy lifting with her today. I feel just drained.

Not a very coherent update, sorry guys. Really sick to the back teeth of it all and that must be a joke to all of you who’ve been doing this wretched dance for years 😞

Thank goodness mumsnet deleted that post quickly.

I really feel for you mumoflittlemice. It is extremely draining. And it's not a linear journey to recovery from what I've read. We're only a few months in but we've had lots of ups and downs. At least you know your DD can be motivated to eat - this means she can do so again. Me and DH have to tap in and out and let each other take the load sometimes too. There are days when it's just too much. Sending lots of strength and positivity your way

I get it, it’s horrible when this happens, which is what I said the other day. It’s a really tough gig and I hope you’re looking after yourself.

You say your dd has AuDHD. Does she also have a level of demand avoidance?

With my dd, I have to be very gentle. And counterintuitively, to act nonchalantly with her, as if it’s not a big deal whether she eats or not. This because, otherwise the ED jumps on the back of the demand of avoidance. It’s just impossible to get her to eat.

ED services recommend taking the food away after half an hour. I only ever gave my dd which she would eat, so I’ve never had this problem. And anything I gave her that she wouldn’t eat she just refused to eat. So food is either consumed or not within that half an hour… unless she’s distracted and putting her make-up on, in which case she just needs reminding. I know other parents have continued for hours. That would not have worked for my dd.

Have you also tried just feeding your dd with food that she agrees to eat? Idk if there’s enough variety or substance there. The way I did it, was to increase dd’s food by an imperceptible amount each day to slowly increase her intake to as much as she would bear, which was enough for minuscule amounts of weight gain. And that included a salad, which she had pretty much every single day at one stage.

Once intake was increased to maybe 1000 calories a day systematically, I then started to push for more. Just a thought.

Have you had a look at the main thread? There’s lots of information and reassurance on there.

Thank you @Weightlossworried and @Mummyoflittledragon Fortunately I didn't see the deleted post..

It's been a tough one today. DD just looked so, so sad tonight. We had family over this evening, which I very nearly didn't do as dd was having such a tough day, but then I thought she might enjoy the (low key) occasion as it is usually her kind of thing and I vaguely thought that the 'picky bits' low pressure food situation might mean that she ate a few things. She did not eat a single thing all evening until pretty late, when DH sat with her just the two of them for a long time, indoors and by some utter miracle (and deep reserves of patience), managed to get her to eat some ice cream. A good quality, high calorie one at that, thank goodness. Still very much the wrong side of 800kcals over the whole day I would say though.

@Mummyoflittledragon yes, DD most definitely has a demand avoidance profile and I probably should have said from the start that I have been working with her list of 'safe foods' that are completely second nature to me after all these years. The foods given are all those which I know she would actually eat, as there is zero point in going 'off piste'. As you've said, it just wouldn't get eaten. Ever.
I think going forward we will need to factor the demand avoidance much more into our plan. Even saying 'well done' when she's managed to eat drives her insane and makes her not want to do it! I've got to stop doing that!!

I have bought dd the book 'How to save your own life' by Rachel Clark. Of course I can't push her to read it because, well, you know.... but I hope when she is ready, she will.

I do dip into the main thread and I should probably head over to there rather than continuing here. I just feel bad as I barely have the bandwidth for anything right now and I don't feel equipped or able to offer support to everyone else on the thread, which seems rude. OTOH it is rather self indulgent to keep my own thread going in this way too. I will try to get past the outcome of the MDT next week and then look at signing off this thread and maybe I can say hello on the main one sometimes.

Thank you all as always. Wishing us all continued strength, MOLM xx

@mumoflittlemice @Mummyoflittledragon would say it’s totally ok to keep your thread, she just wanted you to see you’re not alone on the main thread. I know what you mean about not being able to help others etc. We all have a mental load and it’s ok to say you can’t help others atm. The time will come when you can.

Did you ger an update from the ED team?

@Pearl97 thank you 💐 I didn't feel that I was being pushed to end my own thread as such, I just felt the need to explain myself a bit 🙂I've felt such solidarity, empathy and compassion here and I can't explain how grateful I am for that.

No update will be forthcoming from the ED service until after Tues next week. It's a case of holding on till then and then holding on some more I guess... I'm just going to try and read more of the books I've got and learn as much as I can in the meantime. And hug my DDs, lots.

Thanks @Pearl97 As you say, I wasn’t insinuating you should leave this thread at all @mumoflittlemice. So I’m glad you didn’t feel like that. And I wasn’t trying to get you to comment on the other thread either. I just thought it might be useful if you had time to read some of the comments on there as it’s a friendly bunch. You’re in a crisis situation atm. We get it having been there. No one expects anything from you, honestly.

As for how to get through the next few days, the thing that works best with my dd’s anxiety based avoidance is to be very soft and gentle with it all. And to not show any signs of distress to her, which is what I meant by the nonchalance. If I show her I want her to eat, the ED jumps on the back of the demand avoidance and then she just can’t.

Will your dd dump / hide food or does she just refuse to eat? My dd does the latter. I see you’re only giving her approved food. You could see if she will eat if you take it to her and step away, eg sit away from her or elsewhere in the room to eat your food.

It’s really positive your dd still wants to connect to you and will accept cuddles. That ability to still be able to connect with you will be useful for getting her to eat more. So I would experiment and see if eating in different environments helps, eg taking food to her when she’s on the sofa and then try being around, but not watching or directly next to her, stuff like that. Often sitting parallel helps, so even next to her at the table. Dd only eats with us twice a week, because of the demand avoidance. We sit at the breakfast bar and watch tv.

Some people employ distraction tactics like playing games. This never worked with dd. Having a friend around to eat with her definitely helped loads, but I know ED sufferers often isolate themselves from friends. My dd didn’t do that, it was from me and to a lesser extent dh instead.

As for what to say, unfortunately well done will send your dd in a spin and increase the guilt she’s feeling for having eaten. Try to avoid all judgement around food. When my dd tells me she has had her food at a friend’s house, the answers range from ‘ok’ to ‘thanks for letting me know’. Dd’s ED coach suggested ‘that’s good to know’.

If she eats well, you don’t comment. If she doesn’t, it’s back to encouraging, like maybe you did when she was a toddler, but without any enthusiasm or the performance. I couldn’t even say things to dd like I can see she’s struggling. Any kind of judgement was met with sarcasm and refusal. So just try saying stuff like saying to ‘what about some of that’ and point to the protein / carb. And ask your dh what he says to her to get her to eat.

You will get through the next few days. I totally understand how scared you are right now. So do take time for yourself whenever you are able and find ways to self care.

Hi just reading this as am in a similar situation.

I hope you're doing ok. It's such a big responsibility which can take its toll.

While we waited to be assessed and accepted by the ED service I was really struggling.

It sounds like you're doing an amazing job although it probably doesn't feel that way.

The thing with eating disorders is that the low intake isn't the problem it's the symptom.
It is really easy to see eating 3 meals and snacks as the solution but it isn't. Identify what role restricting is having for your daughter will be what gives you the consistent improvement in her eating habits.
That is not to say that you shouldn't be encouraging and supporting her to eat 3-6 times a day it's just being mindful that her eating isn't going to stop her wanting to restrict her diet.

I have had eating disorders on and off from the age of 8. It's never been about food or not eating. Food has just en a way of expressing what is going on for me.

I'm also getting to see the flip side of this as I have an almost 6 yo who is in complete denial that her body needs food. I've been doing more reading about this and have realised we both have poor interrospection and with reading about weight loss injections realise that I don't have this food noise that people talk about. I think the combination has meant that it's very easy for us to lose the habit of eating and what and how much I eat is very much an expression of my emotional well-being. At it's extreme it is my method of controlling an uncertain world. We notice that my daughter stops eating when she is feeling unsettled about the world. I've been reading about demand avoidance and I think we are definitely experiencing some of that and absolutely find that she is better when it feels less like a demand.

I would start getting her to engage with food and provide her with the perception of options - for example say for today's snacks you have the option of A, B, C and D which do you want for morning and afternoon snacks?
If she is having a harder day that the previous day, back off with the demand for eating give her a 20 minutes or so to get back become more regulated again and they ask what is different about today to the day before? Have a read about the soothing, threat, drive triangle. If she's in threat mode it is going to be a losing battle trying to get her to eat. In those circumstances it is sometimes better to step back and miss a snack in order to support her moving back into a soothing or drive mode which would then allow her to engage with the next meal and you may then be able to add in the missed snack later in the day.

I’m sorry I’ve been away for a while. We had a week’s holiday, arriving home this afternoon. We move house starting tomorrow (completing on sale/ purchase and getting keys on Wednesday) and I am exhausted already. The timing was never meant to be like this, but multiple delays have put us here and there was nothing we could do to prevent it.
Dd ate while we were away and I could see the mental gymnastics and anguish it was causing her to do it. We knew it couldn’t last and she knew it too, asking for reassurance that we wouldn’t be angry with her if her eating fell off a cliff after the holiday. She stopped eating this morning and hasn’t eaten since breakfast. We are back to square one. Expected it, but just as awful nonetheless. I’m glad for the food she ate for a week.
Its going to be a very tough week.
EDS want to do an ‘extended assessment’ as some bright spark (consultant psychiatrist) at their MDT suggested this was a neurodivergent thing rather than an ED thing. I am lost for words on that. I did express that it was surely both ‘things’, but as she has always been neurodivergent and has not always been obsessed with restricting her food or the notion that she is fat (when she absolutely is not) and losing weight etc surely this points to an ED that needs urgent specialist treatment?! Her assessor agrees and says she advocated for this in the MDT and has invited us back next week and asked me to submit a food diary. I shall be sending in the diary I kept before the holiday and from today onward, as the one week away is not indicative of her eating. I am going to have to fight for the help she needs surprise, surprise.

In the meantime, even if I am not replying directly, I am taking on board everyone’s generous advice here and reading Eva Musby and the other book whose author I’ve forgotten, whenever I can (last thing at night usually!).

Thank you all. I hope there is more light than tunnel for everyone 🙏 x

Thanks for updating us. I’m glad you managed to get away. Moving is always stressful but will be worth it.

I am sorry the ED team are being ridiculous. Several of us have found the same. I’m glad your daughter has you to tell them you all need help. You can’t just say it’s a ND thing, that doesn’t provide the help and support you need and deserve. Unfortunately I think it’s all financial and they like to tick a box saying nothing to do with them!

I really hope you get the support you need soon. We’re here to help where we can xx

Thanks for letting us know. You have a lot on. I have had this exact experience. My dd was unable to engage with CAMHS. So she didn’t get diagnosed, despite being very very mentally unwell. She was wasting away, oblivious to it all and believing she didn’t need to eat to live. As Pearl has said, this is a ressource issue. Nothing more. And it’s disgusting.

Dd also had an extended assessment. But by then, I’d got someone highly specialised on privately, because it couldn’t wait. At the end of that appointment, the psychiatrist told dd she didn’t have an ED.

I am just letting you know if they are going to come to some kind of conclusion like that, you will not want them to not say it in front of your dd. The team you’ve been referred to at least sound more thorough and credible than the team we were referred to. They didn’t even ask for a food diary.

We have probably already told you this. There is a medical checklist. I doubt CAMHS will have told you this. It’s called MEED an acronym - medical emergency in eating disorders. Observations are colour coded. Some of the red MEED indicators are: losing more than 1 kg in a week, no food for more than 24 hours, eating less than 500 calories in a day.

All you can do is monitor your dd’s intake you know they do this, you’re at least as prepared as possible to argue that she needs to be diagnosed with them.

<300kcals
<700kcal
approx 600kcal
<6-700kcal
<700kcal
<400kcal
<400kcal

This weeks daily calorie intake amounts 😖

On Wednesday night I took her to A&E as I was so concerned by her calorie intake. It was the same day we moved house. I had been awake since 05.20, we were there until 2am. Felt demented with tiredness.

They were kind there and checked her obs including bloods and ecg. All were within normal range, but the doctor advised that if her calorie intake was <500 kcal the next two days, I would need to bring her in and she would need to be admitted. She hovered just above this for the two days and has now plummeted again.

I’m in a world I just do not recognise now. Where is the daughter I know?

We have the EDS second assessment tomorrow and I have sent in her food diary. I feel so unreal and there is a sense of inevitability about this now; like she is going to get very thin and very unwell before there is any possible hope of recovery. I really hope I am wrong. She doesn’t feel like she is unwell ‘enough’ yet to be thinking of recovery.

Sorry it’s all disjointed tonight. I feel so drained. Every day is constantly thinking about food, what she might eat and when and how to attempt getting her to do it and throwing away meal after meal, untouched. Something about doing that is really killing me.

Sorry to hear this. You've got so much on and your strength in advocating for your daughter through it all, monitoring her food, helping her through the struggles is amazing
That level of intake is concerning, you're right, and hopefully the EDS team listen. You're right to take her to A&E if she continues to restrict, if nothing else to show DD how serious this is

Sending strength

Thank you @LurkyLurkyLou. So at the appointment this morning, they went into a bit more detail on what she is doing regarding restriction, thinking and feeling. They blind weighed her and when she was out of the room and with DH, shared with me that she has lost a futher 2.2kg. Again we will have to wait until this weeks DMT to see if they will accept her into their care 🙏 If so, there will be a plan forthcoming and I’ve not got much idea what that will be. There was talk of her being admitted to the local children’s ward with a meal plan for refeeding but I’m not sure when that would be triggered as she is still not ‘underweight’, just heading there as quickly as she can….

I’m so sorry this is happening to you all. It is beyond draining for you, we really do understand. Well done for taking her to A and E and for today’s appointment. It really is so hard to get about the weigh loss etc.

My daughter was admitted for refeeding. It is hard but I think it was our only option. They do work on weight to height but they also work on weight loss. Your daughter is eating so little they will almost certainly accept her into their service. When will you know? For now you are doing your best and that is all you can do. This isn’t something any of us understood previously and not a club we want to be part of.

We are here though and will make sure you feel supported. To help you feel supported I’m sure they won’t let her keep losing weight without their support. You won’t be alone in this anymore xx

Oh dear, I’m really sorry your dd is eating so little. I’ve been where you are and I get how out of control this all feels.

As for the underweight, the criteria for admittance isn’t, or at least shouldn’t be based on current weight, but on starting weight. My dd became underweight, but she was just about within normal weight range for quite some time. However, she was very physically and mentally unwell. She is now just about an adult and considered to be within normal weight range, but remains quite mentally ill.

I managed to keep my dd out of hospital. Well, her friends helped loads. But it was a massive hard slog. And sometimes you just have to admit you can’t do it alone. From what I’ve seen on the threads, it’s quite common for admittance to start in a regular ward and the patient to be transferred to an ED ward / unit if feeding is unsuccessful. I think it depends on whether or not there is a bed in ED.