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?

@mumoflittlemice I see you have time excellent advice on here.

The amount of weigh loss is very worrying, however it is good you have a record. Often people think their child has lost weight but have no proof. That is a lot of weight loss and I would ask your GP for an urgent referral to the ED team. You should be seen within a week. They will chat to you tomorrow about school etc. I will be ti kind of you.

So… no lunch was eaten at school and no snack. So she had eaten just the boiled egg and half bagel for breakfast, got home at 4pm and didn’t want to eat anything offered including the bagel she always used to have after school. She got really upset and distressed as I gently insisted that she would have to eat a snack before dinner and offered a selection of choices. In the end and in very bad humour she elected to eat an 85cal ‘skinny’ protein bar. Not nonsense I would usually buy but have got all sorts in in an effort to get her to eat something. I did make it clear that it wouldn’t be sufficient by itself but well done for making a start. We settled in the lounge and I changed the subject & put a movie on while she began to eat it. Worked fairly well. DH arrived home as we were going back and forth on what the other half of the snack would be. He has a great way with her and is more the fun parent sometimes especially if he can see that a mood lightener would be good. To my amazement she agreed to eating a pain au Chocolat AND then a chocolate hob nob sitting and chatting with her DDad AND when I came back from collecting her DSis and had bought some chocolate Madeline’s she ate one of those as well when DH playfully chucked one in her direction and said ‘eat that too!’. She is in good spirits now, says she will eat dinner and has gone to do the shopping with DH.
I am obviously happy she’s eaten (and no leaving the room / bathroom visits etc during all this), but am also feeling very What does it mean when they do this?! I can’t help worrying about binge/ purge or simply binge/ starve cycles. I don’t know, am I just totally over thinking this and should just be happy she’s eaten?

Others will be along to reply, but you’re not overthinking it no. It’s very good you are looking into this, as most people don’t and then have a shock when they learn about it in the future. You will find that she will probably show all sorts of different behaviours.

The main point is, you see your GP tomorrow and they should urgently refer you to the ED clinic.

It's great she's eaten, for her immediate health all food is good. Its also great you've found something that works in terms of getting her to eat. But you're right to be wary about binging. It can lead to purging, and also to feelings of guilt, the ED will not like it!
The steady intake of 3 meals and 3 snacks aims to avoid those peaks and troughs, and the routine of it to avoid the negotiation with the ED at every meal.
But a nourished child has more resources to fight the ED, so if you're aware and wary its not necessarily a bad thing
My DD has never really settled to the regular 3 + 3, we've found our own rhythm, and it has involved some big snacking sessions, or big meals at times. We just know she is her most down the day after, and the meal after is the biggest slog, and she can't use the big eat as an excuse to not eat the next meal at all

I don't want to overwhelm you with resources but LivLabelFree is a young lady on social media who is autistic and recovering from anorexia. A couple of weeks after we started refeeding, my DD started to binge and I found such conflicting advice on how to handle it. The ED service told me to keep her to 3 meals and 3 snacks and no more. I was worried that, with the autism, me saying no to extra food would trigger the restrictions again. LLF was a resource that guided us through the insatiable hunger part (it passed after a few weeks but was very distressing).

In the meantime, be encouraged that your daughter has eaten at home today without too much pushback. If she won't eat at school, then you'll be advised to keep her home, to collect her at lunchtime or to take lunch to her for her to eat in the car with you. Skipping meals becomes non negotiable.

At this point, its all about calories in. 8kg is a lot to lose in a short period. Does she like smoothies? Fruit juice? Milkshakes? Liquid calories are a great way to boost intake without it looking like a lot of food.

On the ADHD meds, is she on the one a day slow release version? If so, you could try the other type that wears off quicker, so she has breakfast and takes the first pill. It wears off by lunch, so she should be hungry again, then she takes another pill after eating to get through the afternoon. If you can manage that because you're supervising meals, it could be worth trying.

My cousin had an eating disorder as a younger teen. I’m not the expert on her mental health but certainly if you eat a family meal with her now she gives the impression of being fully recovered - she accepts teasing from her younger brother about her food, she eats a balanced meal and chats and gives the sense she is enjoying the food, she chooses to eat dessert in a setting where she could choose not to eat it if she wanted to.
my aunt and uncle went through a tough few years supporting her, they had to change the whole family’s food like not having skimmed milk only fat milk for example. She had to stay home from school for a period. There was a lot of worry and stress at the time but she is happy and successful now.

It’s not ok to allow your dd to go to school for the whole day without eating. Now you know she’s doing this, you need to either pick her up at lunchtime or get someone from school to sit with her and eat. As it’s a special SEN school, that may be possible. And what is in that salad? I’m betting next to nothing, a couple of hundred calories at best, so she’s going to need to add some carb to that for starters.

If you are able to, it may be the case of going to school at morning break and getting her to eat a morning snack and again at lunchtime. The skinny bars aren’t enough for a snack as you know and they’re diet food. The anorexia will always choose one thing btw and say that’s a meal. So your job, especially if she’s wanting to take something so tiny is going to be to say she needs to be having 2 things for a morning snack. And giving her choices, that give her a decent intake, so not 2 of the bars. Perhaps that and a pain au chocolat. Better still ditch the bars and a hobnob instead.

The pain au chocolat, Madeleine and hobnob are not much food and honouring her hunger. Your dd’s diet sounds so much like mine when she was really ill. Salad and lots of chocolate baked goods. Very ARFID. Don’t mention ARFID when you speak to ED services btw. They like neat boxes and don’t seem to want to diagnose someone with ARFID and anorexia.

Anything eaten is a win. However, you are correct to worry if she’s not eating regularly throughout the day. Because your dd will always choose to not eat early on in the day due to food noise. Not eating silences the voices in her head and allows her to get on with her day. Eat and they’ll be screaming at her. But it’s your job as parents to get her to push through the discomfort and eat, because eventually, when she recovers those voices will stop.

I have a withing scale that talks to my phone and tells me everyone’s weights. I’m not sure anyone realizes though. And I’d forgotten. Not v helpful and I’ve not read the whole thread yet.

So, GP today, referral to local ED service and they have already called me, gone through a questionnaire and will be in touch to offer an urgent appointment that will be within the next 7 days.

I have kept DD off school today for supervised eating and will keep her off the rest of the week. She’s been extremely distressed eating on every occasion but she’s done really very well so I am glad for that. She’s also been able to explain a little more of what goes on for her when she is asked to or tries to eat. It sounds absolutely tortuous 😢. She really is a very different version of herself when she is eating / trying to eat.

Got to dash out but will update further later…thank you to everyone

So so pleased to hear GP has referred you. Keep on keeping on.

You have an excellent GP, I am really pleased. It is good the Ed team are following procedure and seeing you within 7 days.

Two weeks at less than 500 calories - your GP must automatically fast track you to the eating disorder clinic for an urgent appointment

Hi OP, you might find the Peace pathway helpful- treating ED in patients with autism.

@mumoflittlemice the eating is absolutely awful to start with. I remember about a month after my diagnosis my colleague mentioned that I seemed much better and I just burst into tears and told him how terrible it was every single time I had to eat! Lol. He didn't really know what to say 😂
It's great your DD is opening up to you. Keep going, you're doing so well. She's so lucky to have you driving this bus for her 😍

Sorry for the radio silence, today has had its ups and downs for sure. Breakfast went by without much of a hitch to my surprise and delight and she ate about the same as yesterday. First snack was a dead refusal however, so I denied her coming for a walk with me and the dogs (it was going to be a shorter one) and that felt a bit mean. Lunch went well though, minor pushback but otherwise good. We even shared a cake at a local cafe and DD had most of a hot chocolate. Tensions weren't too bad through the day, although she is clearly so fragile. I am staying 1:1 with her 90% of the day to keep a close eye. At dinner time the wheels really started to fall off and she was sooo stressed, it was awful. She fought her way through about 60-70% of a modest meal, but suffered terrible abdominal pain immediately afterwards (and had done yesterday evening after dinner too). I guess her digestive system doesn't know which way is up and it is awful to se her in this pain. A bit of negotiating was attempted while she was in agony, in the way of 'please can dinner tomorrow be smaller?', but I demurred as I suspected this was the sneaky ED voice capitalising on her pain and our sympathy.

Good news is that we have an appointment for assessment booked for Friday. We've haven't seen anyone from the ED service in person yet, but I cannot fault the speed of action thus far and it's reassuring. We've both had to complete pre-questionnaires today ready for the assessment and DD was really open with sharing her answers with me. It was hard to keep a neutral expression hearing her answers to the questions they ask; they were heart wrenching.

Sorry you are going through this. DS is autistic, had very severe ARFID as a child, and ED when he left for uni. But it was in early stages and we managed to intervene. Nothing like as severe as your DDs.

Out of interest, do you discuss the purpose of the food? Instead of just saying she needs the calories, do you connect the nutrional value with her other interests and desires? If she wants to do well in school or in sport etc, do you remind her that X amount of protein is needed for strong bones or healthy brain? I found that focusing on what food does for you, not linked to weight and size but other functions like good hair, strong bones, mental vitality etc, helped a bit.

I’m really pleased to see they you’ve taken your dd out of school this week. She really needs to be seen by CAMHS earn the right to go back by meeting her nutritional needs.

You did absolutely the right thing with the walk. She needs to be meeting her nutritional needs to be able to have enough energy to go for a walk - you can tell her this (in those words).

As for the stomach aches, yes this is very common. And if you are able, you do need to push through the discomfort. If ahe’s receptive, you could explain to her that stomach is a muscle and it’s getting stretched again and being given a bit of a work out, which it isn’t used to anymore. These pains will pass. Lots of reassurance and cuddles will hopefully get her through.

The only caveat I would say is if it actually makes her physically unwell. I’m talking beyond pain and discomfort. With my dd, these became stomach migraines and presented like a stomach bug btw. She then couldn't eat for 24 hours and she and I had to reintroduce food very slowly over a few days til it calmed.

What @Tonissister is saying is absolutely right. No use of the word calories. Because her brain is being starved, I would start with really light touch. So right now, her priority is being allows to go for a short walk and being allowed back to school. And if she wants to have the energy to go to school, she need to be eating x. Everything Toni’s mentioned will be really valuable when her brain has been fed a bit more.

Are you sure there is nothing physically wrong too? Just wondering as you said about her not swallowing and stomach aches, but I have no experience of ED. Is she hypermobile?

That is a good point about comorbidity. ED does often have overlaps like this. Dd’s ED coach reads up on convergence with things like neurodivergence with ED, hyper mobility, POTS, Ehlers Danlos etc.

As for the immediate, just keep an eye on the pain. There is something called gastroparesis. Ie the stomach not emptying correctly. It is rare. Basically when you restrict so heavily, metabolism is slowed to ensure the body fully utilises every morsel of food. This can lead to delayed gut emptying. Or even an inability to fully empty the gut.

I’m really glad you’ve got an appointment tomorrow and that your daughter is being honest with the questionnaire. I remember reading the questions and thinking how sad they are. We will be thinking of you tomorrow. I’m really glad you’re getting the help you need xx

Best wishes for the appointment tomorrow. I was so unprepared for ours - i had no idea DD was restricting as much as she was and how all her individual symptoms that id been trying to fix (being cold, hair falling out, dry skin) were all connected to the lack of nutrition. When we finished, she went to the toilet and I had a panic attack.

The nurse had been really quite brutal in terms of what would happen if she didn't eat and it horrified me. They do it to try to break through the ED, to reach any part of the child who is still able to think logically. Just be prepared - it's worse case scenario stuff, but they don't necessarily say that because they want to make a point.

Are you ok @mumoflittlemice?

Hi all 👋🏼 thank you for asking @Pearl97 and thank you @WhatsitWiggleand everyone for your posts. I am ok. Ish.
Friday was a good appointment; myself, DH and of course DD13 went together The nurse was very nice, friendly and down to earth. We were there almost 2 hours and it was hard going. There were no scare tactics I am relieved to report. Unfortunately though we’ve got to wait for their next available MDT slot for DD’s case to be discussed and that won’t be for another week. In the meantime we can call them anytime and in fact, I did so yesterday as I was desperate for some guidance.

The nurse at the assessment commended everything we’ve done so far as the correct and recommended actions. That was very good to hear as obviously it’s bloody tough. She was glad that we had also removed social media, that DD is being kept off school, all food choices over to us and that we’ve hidden away the bathroom scales. So far, so good. We will have to wait until they decide if DD meets their criteria and can be accepted to their service.

Since the assessment DD’s eating took a sizeable step in the wrong direction and while expected to a degree, that has been very hard and all consuming (no pun intended), hence my lack of posting.

We are finding some value in using motivating factors and without going into detail, there are some things coming up which DD is sometimes able to ‘plug into’ the idea of to get through eating.

That said, I must add that mealtimes are more often than not, very, very difficult, tense, stressful and sad. And that is with us trying all kinds of things to reduce those factors. We play games while eating dinner, have music on (not blaring), and we are being very mindful or keeping things as light as we can. I am serving small plates with a modest amount of food, otherwise she is totally overwhelmed and can’t even begin to eat. We’ve had a few wins and lots of non starters.

Thats kind of where we’re at for now…

@mumoflittlemice thanks for updating us, I’ve been thinking about you.

I am really glad they were thorough and your daughter was honest. It’s an awful appointment but it does feel better that others know and it’s not all on you and DH.

I hope that they are working out which treatment you need not if. I know the service is very in demand, but you definitely need help. I hope they get back to you soon. We are here if we can help at all xx

It’s good your dd has accepted all of those changes even if eating is really tough. You’re doing really well and getting a lot of this stuff right. I know it is really lonely trying to get them to eat. And a hard slog. We’ve all gone silent at one time or another due to overwhelm and we are here if you need us.