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

[Curlyhairedassasin]

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

@Shedqueen Pleased your DD is home and glad she's made progress. Hang on in there!

Nice to hear she’s coming home @Shedqueenand no longer needing supplements is great. It took us about 10 months to be off them but they were a life saver in the beginning.
Things are going well for us, just before Easter the ed clinic discharged us. It felt scary not going after so long but it also felt like the right time. He’s still challenging fear foods with a lot more confidence and has eaten almost all of his Easter eggs which last year he found so difficult. Over the Easter break he walked into the kitchen and just selected a chocolate bar for snack. I have dreamed of him doing this again for so long and it just shows how far we’ve come.
I hope everyone else is ok.

Things are going well here am daring to hope we have beaten the demon.

April 11th Dd diagnosed with AN by CAHMs after months of odd behaviour and hidden restricted eating. BMI 16. One session with a psychiatrist who was harsh with her and explained hospitalisation was a possibility she may not be able to sit her GCSE’s and her social life would be over as she needs to stay at home to conserve calories.

Dd was absolutely horrified by this and began cooperating with the magic plate method. She’s eaten every meal and snack since that meeting. Put on 4kg. BMI 18. Not being complacent but 🤞.

She knows she won’t be allowed to go to the post gcse festival she’s been looking forward to for years unless she’s vastly improved. I missed her breakfast yesterday and she called me down to witness it. Cruel to be kind has worked.

I hope that others have had a similar week. It’s so scary though the worry it will come back.

We are still supervising her and driving her everywhere. It’s actually good it’s GCSEs as everyone is at home revising - there would be real tension if we needed to keep her at home as we need to supervise the eating still. So much easier to do magic plate when she is here rather than out and about at her friends houses as is her norm.

Very good news @Shedqueen , @Proseccoismyfriend and @TheaBrandt1 . On Thursday the final decision from the ED hospital was given, and they do not think in-patient admission would be appropriate for my son at this time, because he would find it too 'distressing' for him and because they want to see if more community support will help first.

The decision seems sensible, however, I think it will only be a matter of time before some more serious intervention has to take place. He is losing weight, he has weekly ECGs and blood tests and they are abnormal. Yet, on the positive side, he is engaging well with his mental health worker and his ED worker. He has also been allocated a social worker, so perhaps a more holistic approach will bear some fruit.

Good morning, just checking back in. Great so see that your DD is home too @Shedqueen .

DD is doing well re eating. it's all quite bizarre. No fear foods, she eats everything and very well to the point we threw the meal plan out of the window as she is eating so freely - and everything. I am still somewhat at unease by this radical shift but we are going along with it.

Mentally, still a lot going on and a very long way to go though. And education threw as a curveball. Looks like the PRU is not having her back at all. Her mainstream is refusing to have her back and the LA is refusing to both, finalise the EHCP even though it's months overdue and we have an offer from a school which would suit perfectly (it's independent though and £££) and they are also refusing to put alternative education in place. Have escalated to everyone in the LA as they are in breach of several laws and nobody is even acknowledging my email. Have now drafted my MP in but looks like we need to go down the legal route to force them to finalise. I am so drained with it all this stuff. How are they even allowed to do this?? She is totally devastated that she has been removed from education in all shape and form now.

@Curlyhairedassasin your daughter's difficulties with appropriate educational provision reminds me so much of the problems we had with both our sons. My eldest son had an EHCP and 1:1 support in place, but his MH broke down and he was unable to attend school from the age of 14. He had inpatient admissions to CAMHS and a placement at a specialised school, as a weekly boarder was found. He broke down during the transition to the specialised school and, in essence, no educational provision was found for him after that. Essentially, he never completed formal education and never returned to study (two short college placements on entry level programmes failed within the first two weeks).

My youngest son (the son with the ED) stopped attending school at the age of 13 through profound anxiety. He received input from a tutor sent by the LA for five hours a week, but hid from them for a large proportion of the sessions. He was given an EHCP in what would have been Y11 and he attended a PRU twice a week with 1:1 support. After he officially left school, he had a short college placement on an entry level skills for work programme, which he could not cope with because there was absolutely no transition out in place despite stipulations on the EHCP that this was required. He also never completed formal education.

Both my sons are young adults who are NEET and have complex needs. I hope that, perhaps if their mental health becomes more stable, they may access adult education and thrive. However, they were totally let down by the system

@elderberrysmell I am so sorry to hear that, it's absolutely heart breaking. DD is very bright and academic and is desperate to be in school and she can be in school. She did so well in the PRU but after she was admitted to hospital, they pulled the place. We 'only' need to get the EHCP now over the finish line. I am sure she would flourish in the school we have in mind. We just cannot the the LA to follow legislation.

How old are your sons now? There are options to get qualifications later on. Hopefully that will be an option further down the line.

Hello @Curlyhairedassasin . Thank you for replying. I realise on reflection that my post was a bit negative. I hope your daughter's placement is sorted out quickly and that the LA comply.

My sons are 24 and 26. Neither son has a learning disability, but they both have complex needs and are neurodiverse. Therefore, I think, once they are a bit more stable, something like an Access course could be really beneficial for them.

It’s great your dd is home @Shedqueen I really hope that this is the time, that things will go better for her and that you can both now build on this. Bless her.
@Curlyhairedassasin so many things are looking up for your dd that it all feels like such brilliant news, even if the EHCP is still outstanding, which I get is hugely frustrating and your dd’s future depends on it. As I think you are talking about the independent school being the solution, your dd does have the flexibility to complete her GCSEs a year later if you don’t get what you need in time, either by homeschooling or dropping down a year once it’s finally completed… I get the latter is more expense though and probably not what she wants to do.
@TheaBrandt1 it’s great your dd has responded so well from the off. From what you’ve said, it reads as though she is neurotypical. The approach that you’ve taken with your dd sadly didn’t work with mine - she’s not diagnosed but the eating disorder coach we use believes she is very likely autistic. It sounds as if you just need to keep going and with luck you may find your way out of this pretty quickly.
@elderberrysmell I do hope your ds will respond soon. I can understand exactly what they’re saying about not admitting your ds. My dd wouldn’t have coped either with being admitted either. Luckily we never reached that point albeit I did learn after the event that things were dangerous for a while. It sounds as if you’ve got a lot on your plate with both your ds’s. I hope things will look up soon for you all.

Things here have been really up and down. I finally got through to dd today that her intake needs to be sufficient to justify continuing to go to the gym. Dh took her to see fil for a few days last week and she came back having lost a bit more weight - luckily not quite at the feral having to turn things around fast to avoid relapse stage. And you’re right @Shanghai101 about the skills being there. I can see dd slipping a lot faster now and head things off before they become too much of an issue.

I’ve spoken to dh about her losing weight from last week this as it’s now clear he really doesn’t get the quantities that she should be eating. I hadn’t realised that before… I mean considering all the meals she’s eaten in front of him I thought it would be obvious. However it’s even basic things like she ordered a chicken Caesar salad with chips one lunch at a restaurant and she’s gone veggie - there was no veggie option. Instead of dh asking for the salad to be modified with the chicken to be replaced by extra cheese, he just took the chicken off her plate when it came and left her with the Parmesan shavings. He was most insistent this was fine as the salad was quite substantial. Both the ED coach and I had to emphasise that cheese shavings and croutons really are not, even with a portion of chips.

I am now being more vigilant with him, explaining things more and telling the ED coach about our interactions and my observations of him so that we can both work on him as well as the two of us as obviously being on the same page is paramount to beat this thing. The coach said she thinks he’s gone back to denial again so I need to keep nudging him to keep him on board as he will quickly go for anything for an easy life despite my explicitly telling him she needs to earn the things she does.

There’s still so much to do but we are slowly forging forward, nudging dd in the right direction.

@Mummyoflittledragon Thank you. We are definitely in a better place. Home schooling is out of question though - she needs the routine and the structure of the school day and has zero motivation to do things from home. I also work and with DD1 having complex learning needs, this would tip me over. I didn't know that repeating a class is a possibility. You are right, we are after a independent placement (specialist SEHM school with a good GCSEs offer) - did I get it right that she may be able to can repeat a year should we get in as it's an independent setting? I wasn't aware and need to check this out.

@Curlyhairedassasin
It is not uncommon to change years at private school. You’re paying so as far as I’m aware for all fee paying schools, it’s your choice albeit they will give you advice. My dd has been at private / independent school since year 9. There was a boy in dd’s year, who isn’t academic and his parents put him down a year to maximise his chances. I also know a family, who sent their kids to private school midway through secondary. They chose to put them both down a year.

Your dd is going into year 10 I think. Tbh it may be beneficial for her with the amount of education that she has missed to drop down to year 9. Schools seem to start science curriculum in year 9. We were told that they wouldn’t be repeating the work again in such depth in years 10 or 11 for GCSE. It would then depend upon whether you have the finances and they have the space.

It is definitely something to look into, especially if you thought your dd could manage school even if perhaps part time until she gets an EHCP. In my experience with my dd (who has no diagnosis beyond her seizures, ie not ED albeit according the ED coach she likely is heavily masking autism with PDA), her school basically has made a number of adjustments on no diagnosis. But they would need to get to know your dd first. The only thing is you will have to pay the vat for now.

What I have found and seen with this and the other private schools when we visited is that they are very person centric. They really want the parents to be happy, we are paying for something that we can’t get from state school. It’s a fine line for everyone to tread and something, which some parents unfortunately abuse.

Idk if you followed any of the recent private school threads about vat. A lot of parents on there were very unhappy as they think their kids with SEN would likely have needed EHCPs had they not withdrawn them from state school and sent them to alternate provision.

@Mummyoflittledragon It would be an EHCP placement funded by the LA, not by us - it's a special school and all children there have an EHCP (i.e. have LA funded places). So a bit different from parents who self fund at 'normal' independent schools. But still good to know in case we need to look into it. But first we need the LA to agree to fund the place. Otherwise she is going nowhere.

Hi all. I'm new here, and hoping for some advice. I've been lurking for a while, trying to learn from all your stories and experiences. I'm so sorry for what you're all going through. It sounds incredibly hard. My DD (13) has just had an assessment with the local CAMHS ED team, who have put her on a meal plan, allocated a case worker, set up appointments with a dietician and paediatrian, prescribed thiamine, and are liaising with CAMHS about MH support. They also said she wasn't allowed to do any exercise, so has had to stop her extra-curricular activities, PE and dance. She's not drastically underweight (yet) but is displaying some very worrying behaviours, has been restricting for a while (500-1000 calories) and has physical symptoms of AN. The ED team were very good, and really impressed on her the importance of following the meal plans, and the consequences if she wasn't able to (being pulled out of school, hospital etc.). She was quite compliant for a day or so, but has now stopped following the plans, and is restricting again. I don't think she's eating lunch at school, and she's making more and more changes to what she eats at meal times. She's anxious, low, tearful, irritable and cold all the time. I'm so worried about her, and finding it difficult to think about anything else. We've done everything we can to get her to follow the meal plans, but she just refuses, saying 'I can't' and getting extremely distressed. She's also on a waiting list for an autism assessment, so there's a ND element to this as well. We don't have another check in with the team booked in yet, but hoping it will be soon. Does anyone have any advice on what to do to get her to follow the meal plans, or at what stage we should go back to CAMHS to say we need more help? Thanks.

Also, what do I do about the constant negotiating? I said this morning that she couldn't go to the park after school if she hadn't had her lunch, but what if she says she'll eat her lunch in the park? (this is what I think she'll say). I don't want to stop her doing the things that bring her joy - like being with her friends - as that increases her anxiety and makes her eating behaviours worse. And is it better that she eats something (e.g. half her breakfast) than nothing? Or should we be insisting she eats all of it, and what if she won't? If we push too hard she goes into meltdown / shutdown, and we can't then get her to school (she knows this, and threatens it at times, e.g. if you try to make me eat xx I won't be able to cope with school). How do you all manage it? It's like a full-time job, and I also have a full-time job! It feels impossible at the moment, and I'm exhausted.

@PermanentlyExhaustedPigeon80 really sorry you are finding yourself here. my DD is 14 and likely also ND (awaiting assessment). When DD decided not to eat, nothing would work. I found that FTB (family based treatment - where you support them through meals) did not work for us (refused to eat what I cooked, what we put in front of her, very violent at times - things got only turned around after our 2nd hospital admission which required NG feeding - as you can see, we where not very successful at home).

Can I ask what your DD eats! Is she eating things you prepare (my DD would not). If that is the case, hide calories. Butter, oils, cream in sauces, if she has smoothies, add cream etc). If she does not eat in school, can you go in (or at least to the car park to eat with her if that would help her)? For us, neither the carrot nor the stick method would work but is there anything you could use as a bargaining chip which still means a lot to her?

In terms of meals, sit with her, encourage her, if she fights back tell her you know it's hard but keep encouraging . I would throw everything you have at it. once the ED becomes entrenched, it's a lot harder to turn it around.

How much is she eating at the moment? If she keeps eating under 500 cals per day for a few consecutive days, go to a&e. The should follow the MEEDS (medical emergency in eating disorders) checklist. ECG, bloods etc Undereating for a longer period can cause electrolyte changes in the body which can affect the heart (hence the needs for bloods and ECG). If she is not eating enough, I would not let her attend school either.

Thanks for the quick response @Curlyhairedassasin and the helpful advice. DD is very reluctant to eat anything she hasn't prepared herself, or got out of a packet, e.g. she makes her own granola to fulfil the 'cereal' requirement of the meal plan, and rejected a home cooked vegetable stew last night in favour of plain tofu and raw veg, because she didn't know what was in it. She's vegan (has been since she was around 8), which makes it harder to get calories in, and she's avoiding fats as much as she can. She makes her own smoothies, with a bit of syrup but otherwise just frozen fruit, and wouldn't let me make them for her. I've offered to pick her up for lunch (to sit in the car or go for a walk), which would be a logistical nightmare with work but could make it work if necessary, but she freaked out and told me that would make it worse. She said last night (accidentally I think) that school is the only opportunity she has to not eat, and I couldn't take that away from her. Which was pretty awful to hear. She also told us that the internal consequences of eating (guilt, sense of failure / weakness) are worse for her than the potential external consequences (no school, loss of freedom, hospital), which is really worrying, and shows how disordered her thinking has become. It's so up and down though - at the weekend she did pretty well and seemed much better at times, but it all fell off a cliff on Sunday night.

I think her calorie intake varies from day to day, so it's hard to keep track, but definitely under 1000, and lower some days. Her periods have stopped and she's been having dizzy spells, so it's starting to affect her physically too. Will keep a close on eye on things over the next couple of days, and ring CAMHS / take her to A&E if things don't improve soon. School does seem to make things worse, although I don't think anything terrible is happening there - more that she's invisible and nobody is monitoring her. Her best friend has struggled with EDs in the past too, so I'm worried there's an element of normalising it going on.

For those who have young people not attending school, how do you manage? My husband and I both work pretty much full-time, so don't know what we'd do!

@PermanentlyExhaustedPigeon80 She reminds me in so many ways of DD. I know some here have been more successful to get their DC to eat but we could not. @Girliefriendlikespuppies is good when it comes to advice around eating. We really failed there.

In terms of work. I currently WFH. Is that an option? Or if you are too stressed, taking some sick leave due to stress to throw everything at the ED? Unpaid parental leave (you can get up to 4 weeks per child per parent). DD was initially full time in school, then part time, then referred to a PRU where she did 3h per day and that place came to an end We are waiting for an EHCP but LA are stalling and we have nothing anymore and we are 2.5 years into this. I don't want to scare you - guess what I am trying to say is it's better to take some shorter leave early on when you still can turn it around rather than letting it become entrenched and you have to deal with a long term and school falls apart.

If she is dizzy, cold etc I would consider taking her to a&e for checks. I suppose she has not had an ECG and bloods done in the last few days? I would pull school on such a little intake esp as she is feeling unwell because of the undereating and put her on bed rest.

@Curlyhairedassasin oh I see. I didn’t realise the LA had offered the place under their SEN budget. In that case, I don’t know the answer. But worth a discussion with the school as they will have seen this all before.

@Mummyoflittledragon school offered us a place but LA is refusing to fund it via EHCP (so far). No other school will take her and LA cannot offer an alternative. We probably need solicitors for a judicial review next. Sigh

Thanks again @Curlyhairedassasin - I'm not technically allowed to WFH and do childcare, and we've just had a big crack down on this at work, so it would be tricky. I also have to be in the office 60%. Not sure I can afford to take extended periods of unpaid leave. At this rate, I'm going to need to be signed off with stress anyway, as I'm destroyed and we're only a few months into this nightmare. So maybe that's the only way to manage. Just spoke to her and she says she's had lunch at school and is going to the park with her friend, so now I think I'm over-reacting. It's a proper emotional rollercoaster this isn't it?

Does anyone have experience with CAMHS-ED team Case Workers. We're supposed to have been allocated to someone, but still waiting to hear, and I'm not sure what those appointments would involve. Will someone weigh her and check her pulse / blood pressure, as well as asking about meal plans etc.? I'm worried we're being left to manage this on our own, and are failing😕

@PermanentlyExhaustedPigeon80 I would not believe that she has eaten in school. Been dealing with this for a long time. I definitely would approach work. I get the no work + childcare but usually 14 year olds do not need hands on childcare. it's very different to a small child. maybe consider a flexible working request. That's how I worked around things. Can DH wfh too? create a rota so always someone is at home.

Hi @PermanentlyExhaustedPigeon80 sorry you find yourself here. It sounds as if your dd has quite a lot of awareness of what is going on with her. Hopefully you’ve caught this relatively early. And I agree with Curly that earlier intervention may help in not having these behaviours so entrenched.

Your dd sounds very suspicious of everything and on high alert. She needs lots of love and care to get her to reduce her anxiety, as well as strong boundaries. It is better that she eats something rather than nothing but ideally eating it all. You’ve been given a meal plan of 3 meals 3 snacks. The idea of doing it this way is to stabilise blood sugars and to encourage your dd’s body to start to feel hunger again. If she doesn’t eat regularly across the day, she is more likely to binge in the evening once she restarts feeling more hungry.

It is really normal that she feels cold all of the time. The body is prioritising keeping her alive and the proteins, carbohydrates, fats and oils she would normally eat are not available to keep her organs functioning optimally and generate warmth. The ED was very active last year and she had an electric radiator in her room, which she used often even in warmer months.

I am treating my 16 yo dd like a child of much younger than her years. In some cases, the way I talk to her is more like a primary school child. So do try to stay calm and not to show fear to the eating disorder even if you are really scared. Don’t beg, cry or get upset. Your dd isn’t in control. Right now, you’re going to be the person, who nudges her to eat. Also don’t praise your dd when she does eat something. This is likely to induce guilt and if she tells you she’s eaten the agreed food, it’s much better to say something neutral like ‘that’s good to know’.

There are a number of resources for you to use. Many people swear by Eva Musby. https://anorexiafamily.com She has written a book named Anorexia and other eating disorders www.amazon.co.uk/Anorexia-other-Eating-Disorders-compassionate/dp/0993059805/ref=sr_1_1?crid=9AFBQ29HGTFX&dib=eyJ2IjoiMSJ9.fc6em9g0UUvIkb3Ttndty_F9b4FbLjyRED7pPDLZf2hc0nOYLpYMnuVFAu5cUERK4QP9F5UVzlPY8qoNbZfl8ufxt424uHqaobFMVgEu0W365hlu5GsFBKfnkNaobdo1gJmCXlBahT6K1NczmrJSbtiramFUxZt1ryX89xeAlGNM4wQ414YZ7afpZJ5EAG7tJ9rtPFV-0jT_cS7jiXobTw.hAAowMm0v6vLA79cQhtqEBtjan2T36LrrYjQqPtMA4s&dib_tag=se&keywords=eva+musby+anorexia+and+other+eating+disorders&qid=1745940311&sprefix=Eva+musb%2Caps%2C127&sr=8-1. She advocates taking over completely. The ED sufferer not being allowed to prepare any food. This didn’t work at all for my dd. It’s worth looking at this at some stage anyway as there is a lot of useful information for you.

Then there is the New Maudsley approach, Skills Based caring for a loved one with an eating disorder. www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634/ref=sr_1_1?crid=1S0T8MW2Z1552&dib=eyJ2IjoiMSJ9.eYFE5MxbhYEcCq9yMKwuxNbO4Pldg0BywbTawjCOpag6f_DymxTpZqHzoU0L2YkVwGsGqmZbcV0V3oC1z_-O1A.4rrdBrKTQrIa-WWqWwhAivwtrlJalo0IUp6PajmGpI8&dib_tag=se&keywords=skills+based+caring+eating+disorder&qid=1745940399&sprefix=Skills+based%2Caps%2C94&sr=8-1. You’ll also find details of workshops for carers here. https://charliewaller.org/mental-health-training-support/parents-and-carers/eating-disorder-workshops. You’ll see Jenny Langley’s name pop up. She’s fantastic. Her ds recovered many years ago and she has been work in the ED field ever since. https://newmaudsleycarers-kent.co.uk

I imagine that you’ve been told a little about family based treatment - FBT. ie sitting down with your dd at every meal. This didn’t work for my dd. We have an eating disorder coach that we pay privately for dd and do modified FBT. In the beginning, dd ate all of her meals alone in her room, albeit at the start her rule was one meal and no earlier than 8pm. Now she eats dinner with us and everything else with friends or alone. Dd is honest and we can trust her. The only time she has hidden food is when we tried to force her to eat something she didn’t want.

If your dd will eat in her room and you know she’ll actually eat it, that is much better than trying to force her to eat in front of you. I would not let your dd go to the park with her lunch unless you are 100% sure she will eat. She’s already told you she likes to hide at school and my thoughts are that going to the park to eat is too much freedom and temptation to just put her food in the bin. It’s much better to tell her, ‘sweetheart I know you really want to go to the park. And I really want you to go too. If you just eat x first, then you can go.’ Have a red line on that one. If she doesn’t eat all or the vast majority of x she doesn’t go. Just make sure that x is an achievable thing, eg a sandwich, and not a massive meal. As dd gets better, I have encouraged her rather like I did when she was little, just one more or 3 more mouthfuls etc.

My dd loved school and when the ED was at its peak and she was only eating in the evening, I got her to eat a sandwich at lunch by telling her that I couldn’t let her not eat all day at school. School allowed dd to have her phone on her and I used to send her a text every day reminding her ‘please remember to eat sweetie, I love you so much’. This worked well as it was a lot less confrontational than me telling her directly. A few months ago she admitted that all she ate was one of 2 sandwiches minus the crust. The thing is she ate. And from there, I managed to work it up to a meal deal. Not enough. But it’s a work in progress.

If you are concerned about your dd, you can always call the ED clinic and go to A&E. And as curly has told you, less than 500 calories or no food within a 24 hour window and you should take her straight there.

I am also not sure your dd has eaten at lunch. She was clear that she liked to be at school to avoid eating. So what has changed to make her suddenly eat? And you are not overreacting. This is a very difficult line to toe. Can any of the teachers or cantine staff watch her? The reason as to why she says she can’t cope with school by the way is because the eating disorder voice is quietened if you don’t eat. It starts getting louder when you do.

Wow, thanks @Mummyoflittledragon - that's a huge amount of helpful information. Will have a look through. I tried ringing the ED clinic. They said their 'duty' clinician would call me back. That was about 3pm, but no phone call yet, so don't think I'm going to get one now. I'll have to try again tomorrow. I don't think FBT will work for my DD either - she's too determined, and she also has autistic shut-downs, which can go on for hours if she's anxious. So I honestly think she'd just sit there indefinitely. I'm not sure about eating in her room as it's a disaster zone, and she'd probably have to sit in bed, which I don't think is healthy for her. She's hyper-sensitive about her room, and sees it as a safe space, so it's very hard to get her to sort it out without causing WW3. I think what's hard for her (and us) at the moment is that we've always been very child-led, and encouraged her to be independent, make her own choices etc. and it feels like all the advice for dealing with this completely contradicts that. It's like we need to unlearn 13 years of parenting in no time at all, and it's just fraught with pitfalls. Plus, I'm so worried about making things worse by increasing her anxiety. School have been good so far, but I don't think they have the staff to keep track of what she's eating, so there's no way of knowing for sure if she has.

@Curlyhairedassasin - DH is a secondary school teacher, so no WFH option unfortunately. I feel like most of the burden of this is landing on me, and it's pretty crushing right now. Might see if I can talk to the GP next week. Has anyone else been signed off with stress while supporting their young person?

You’re welcome @PermanentlyExhaustedPigeon80. Too late today but I would try talking to one of the nurses tomorrow. They are on the frontline.

Right now, it isn’t about what is most healthy for your dd or trying to find the most optimal conditions. It’s about helping her to be calm to eat, to combat the ED voice and to avoid melt down. Once she’s increased her intake, you’ll be able to reason with her more and she will be more resilient as her anxiety will be lower. Not eating really messes with the gut bacteria and it takes a long time for this to heal.

In the beginning and when my dd was on bed rest, she was eating everything in bed. When she’s not feeling well, she still eats in bed. It’s not ideal, of course not as it’s not great for digestion. But food in is the priority. As for sorting your dd’s room out, if it isn’t causing her anxiety, this really isn’t important at the moment.

You have said about your parenting style. You’re correct, you will find that you have to parent completely differently from before. Dd was likewise allowed a lot of freedom, life was very child-centric. And actually what I’ve learned is that a lot of this was anxiety inducing in itself. Dd probably has autism and PDA but she’s refused to get a diagnosis. Now she has to get permission to do things like going for a sleepover at a friend’s house. It’s like things are turned on their head. She’s lower 6th. Just when she should be spreading her wings, I’m having to pull her back.

Dd also had to give up dancing and riding and withdrawn from PE. She’s going to the gym now but that wasn’t until she was stable enough. I now see when things are slipping quite quickly and know that nothing is me making a fuss. It’s easy for a little bit less today, then a bit less tomorrow and the following day to quickly become a habit and the ED takes full opportunity to claw back. So any changes in reduction of intake is noteworthy. 3 meals 3 snacks every day is standard and expected. And dd has to eat enough. The only exception is when she’s ill. Failure to do so means she can’t go to the gym or go out or on a sleepover etc. Every calorie that she didn’t eat, she needs to eat that and catch up on.

And just because your dd possibly isn’t eating 3 meals 3 snacks at the moment it doesn’t mean you’re failing or it’s going wrong. It just means you’re not there yet. We had to take some quite drastic action to get dd onto meal plan. Two days before we were due to go on holiday last year, we forced dd onto the plan. Up until that point, she was eating twice a day and I was struggling to get her accept to eat breakfast. Had she not agreed, we wouldn’t have gone away. That was a tough one and quite gut wrenching, it always is when you’re playing chicken with the eating disorder. And it’s important to stand firm with a United front with your dh.