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

[Curlyhairedassasin]

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

Remind me how old he is wooden? I'd be asking about sectioning him and getting an emergency admission to start refeeding/ng feeds. Is he under the ED team? Have they suggested a plan?

@Curlyhairedassasin Have you considered “Right to Choose” for an assessment? My sister switched to that for her DS’s assessment and he is being seen now, 9 months after the referral, rather than the years she was originally quoted.

Thank you all for your kindness last week. I think food might be getting easier, but she’s self harming now. We were in again with the nurse/therapist yesterday and her weight hasn’t changed. They’re now thinking about her being a day patient. In the meantime, I guess we plod on, meal by meal.

@JoyousCyanCat I am looking into RTC. Locally, the funding for a number of providers under this scheme was withdrawn after an avalanche of parents used it due to the ridiculous waiting times. It's unfortunately not straight forward...

@Girliefriendlikespuppies he’s 16, almost 17. There doesn’t appear to be a plan. He is under the ED team but no official diagnosis. They’ve said they will set up a meeting to talk to him and express their concerns. I’m not sure how long that’ll take to arrange.
In the meantime I’m just encouraging him to eat as much as I can. Managed to get him to eat a curry and a donut this evening.

How is everyone doing? Should I be concerned that dd did not have any carbs at lunch? She’s weight restored(not just 100% wfh but back where she was on the growth chart pre Ed)

Wooden** given he is afraid of weight gain and very much in the grips of anorexia is push for an official diagnosis. I think your son is autistic? But that's not a reason not to get an anorexia diagnosis. Does he know his weight? I'd also be asking about more support, you need to get as much as you can now as adult services are even worse than children's ED services sadly.

Can't I like dd to have carbs with each meal but she has recently been more reluctant to have bread. I suspect she saw something negative about bread, she will still have crisps and a chocolate bar though!

@Girliefriendlikespuppies she’s definitely eating plenty of carbs I’m just overthinking if one meal on a Saturday is starting a slippery slope. The meal itself is otherwise far more nutritious than what would be had for a typical lunch.

Hi everyone, I hope you don't mind me posting - I need some advice about how to deal with concerns my daughter may be on a slippery slope to an ED.

First though I want to send my love and best wishes to you all - having read through the threads I am so sorry for what you are going through with your children - you are clearly a group of incredible parents.

My DD is 13 and has some traits of autism/adhd but would be considered “high functioning", partly due to masking. She is at mainstream school, has a nice group of friends and is into musical theatre and street dance as hobbies. She is 163cm tall. I don't know her weight but she is small framed and slim.

Just over a year ago she opened up about body image issues she was feeling (she’s fat, fatter than everyone else, various parts of her body are awful etc etc) all dysmorphic views, but I understand there is an element of some of this being normal for teens. The reason for her telling me how she felt was because she wanted me to help her diet and lose weight. I had a major weight issue all my life I eventually had weight loss surgery but my daughter doesn't know that and I have always been able to eat normally in front of her. I’ve been very careful not to transmit any judgement/issues around weight to my daughter so I have never talked about myself/food/diets/other bodies negatively, no dieting just balanced eating etc and a body positive environment.

Anyway, it turned out this back fired as my daughter had thought this meant I never had any of the feelings she was experiencing and I would be disappointed in her for how she was feeling about her body. How wrong could she be! Anyway…at the time we talked and I told her I did understand how she felt and that sadly there is an element of some of these feelings being very normal/common in kids her age - although she felt she was the only one. I told her a bit about my own struggles with weight and admittedly I did get upset in front of her because I had so desperately wanted to protect her from feeling that way too but had failed. I said I could not support her to diet as she didn’t need to, but we would continue to make sure we eat healthily and she already exercises regularly as she dances and plays sport and that I wanted to try and support her to feel better about herself. Some of the other signs were she was searching online for how to lose face fat/thigh fat, doing some exercising secretly in her room (although not obsessively she was trying to hide it), and saying she was full/not hungry to avoid some meals/snacks.

This all started at the start of the Summer holidays 2023 so over the summer we worked on things without directly addressing it all the time, and things improved.

Since then, I continued to keep an eye on her and whilst sometimes she might have avoided the odd meal or started a new exercise plan it has been short lived and on the whole I have felt she's been ok.

Over the past month or so has again started saying she’s not hungry/avoiding some meals/saying she’s full much sooner than she usually would. She’s also doing some exercise in her room again that she tries to hide. She does street dance and sometimes I am not sure if she is practicing her dancing for the sake of exercise rather than dance practice. At the moment she’s lost no weight that I can see (we don’t weigh although do have scales). She, like me, is a foodie and she is still doing things like getting sweets with friends on the way home from school occasionally etc. Since this all began in Summer 2023 it has been access all areas for whatever food she wants, I've continued to provide healthy balanced meals and food choices but if she wants a frappucino and a cake a starbucks she can have it! I have noticed a few times however that if she has had something she would consider a 'treat' it might be the next meal she doesn't eat much saying she isn't hungry, which seems by way of compensation for what she’s eaten earlier.

One pattern that does seem to be emerging is not eating her lunch when she is at theatre school on a Saturday (which is a local run amateur group and does appear to be very inclusive of all abilities and body shapes). Sometimes she will eat some of it when she comes home, sometimes not. I know this is an environment where EDs can be more common.

I am already calorie loading where I get chance - she likes to have a smoothie for breakfast so I use full fat milk, yoghurt, peanut butter, banana, oats, flaxseed etc. She doesn't seem to be aware of the caloric value of foods and I am not aware of her checking packets for calorie values.

I’m not sure how to approach this with her because I don’t to bring it up again and tell her I am concerned and for her to then either back away and start to hide it or to even trigger a problem where there isn’t one. I do think part of her not talking to me about it is because I got upset last time and she doesn't want to upset me. I am so cross with myself for that - at the time I was struggling with peri-menopause and couldn't keep it together how I usually would.

She isn't hiding it when she doesn't eat her lunch - she brings it all home and I might say 'oh you haven't eaten your lunch' and she will say she wasn't hungry so I will offer it to her or to make her something else. This weekend she declined having anything but when we went to my parents house soon after and my mum offered her a piece of cake she happily ate it and some chocolate my dad gave her, so she isn't restricting/avoiding food all the time by any means.

I monitor her social media. She has whatsapp and only recently got snapchat and instagram- also has youtube which is where she was previously searching for weightloss videos but she hasn't done that again recently. She doesn't have tiktok and her instagram feed is full of dogs rather than diet or exercise.

I don't want to push her 'underground' by raising it with her but also know I can't ignore what are potential warning signs. It is so hard to know if she is experiencing 'normal' teen body image issues or if there is more to it. Because of the ASD traits (she was clinically diagnosed at 7 but not formally) I am aware she is susceptible. I do feel a lot of this is related to not liking secondary school, where she loved primary. She is our only child and while DH is aware of concerns and would be supportive he doesn't really get it.

Anyway, I'm sorry this is so long so anyone who has made it this far, thank you and well done! I would really appreciate any tips or advice on what can do? Thank you!

Hey @Madferitchick, sorry you've had to find yourself here. Your dd sounds a lot like mine was, she is also probably ND, had some low level body dysmorphia issues, struggled with the transition to high school. There can be lots of predisposing factors to developing an eating disorder, I'll attach a good graphic that I've found useful. I think anorexia is like a kind of switch, and once it's been flipped the brain / neurology / biology of anorexia kind of takes over. Once that happens, the main medicine early on is food.

I found it quite hard as a mother not to feel like I was over reacting. My dh was similar to yours, sympathetic but not hugely able to get it. He still is in lots of ways - we are going through a relapse with my dd at the moment and I've had to spell out to him over and over again why we need to try and get a handle on this asap. I really wanted to believe that stories we told ourselves just before diagnosis - "she is interested in being healthy" "she is using exercise to manage feeling anxious about school" etc etc.

When I was reading your post it felt like you're doing a great job trying to do everything you can, but you don't have enough information about some things. If you can, I would find some way of weighing your dd, probably blind if possible, and on a fairly regular basis (every week or two) - this will give you an indicator if she is losing any weight, or if she has dropped off the growth curve she was on (use the red book to work this out). Comparing her to her own growth curve is useful.

I have read accounts of some parents being able to catch things early with their child by talking to them about the signs of early disordered eating, and developing some co-agreed plans or rules. This can be useful for someone who is autistic as sometimes rules can make life easier. I guess that might be my next step - frankly talking about how some people are genetically predisposed to developing an eating disorder, and energy deficit over a period of time (even a very short one) can trigger this off for them. So the safe thing to do is eat regularly and not miss food. Lots of parents including me have had this chat, and unfortunately it didn't really make any difference for us, but I do think some young people can turn it around.

Being the parent of someone with AN has made me a very suspicious person, and I realised that my dd either told me a lie, or let me assume things that were not true. Eg, she let me assume she was eating lunch at school, she would also send me pictures of food she was about to eat (she didn't eat it). So it's probably also worth having a think about whether she could be restricting eating in other circumstances.

Please use this board for advice and support, it's the main thing that has kept me going. Good luck and lots of love x

Here's the diagram - you might have seen it before. X

Hello.

I'm sorry you all find yourselves here.

Please can I get some advice on what to do about my step son? He's 18, and although he has a bio mother, he doesn't really see her, and has lived with us from age 7. So he's like a son to me.

Basically, he's really food and exercise obsessed. He's lost a lot of body fat - although gained muscle - over the last year or so, through going to the gym and watching his diet. He never needed to lose weight, but wanted to get muscly. To start with, it seemed slightly over-exuberant but fine. In the last couple of months, though, in his stressful A-level year, it seems to have got problematic. I don't know how to frame the problem, because he actually eats what strikes me as quite a lot of food. But because he's a teenage boy who exercises a lot, I don't think it's enough. He'll eat decent-sized meals with us every evening, and makes himself giant omelettes for his breakfast (4 eggs, often with fish, veg, avocadoes, protein powder, too). But he's clearly counting calories, and usually won't eat pudding any more (he says it's just "healthy eating"). He looks, to me, on the borderline of unhealthily thin. He has a very bad temper if I try to bring up food.

I really think there's a problem. But as he's 18, is there anything I can do? If I try to talk to him about it, gently, he gets very ratty and says it's all in hand. He clearly agrees there's a problem, but reckons he's dealing with it. What can I do?

TIA

@Madferitchick if I had my time again, I would have got my DD a therapist who was a specialist in autism at the first sign of anxiety. There is no guarantee that your daughter will engage with somebody but hopefully if you can do this while she is still healthy and before anorexia really takes off then you may be able to avoid things becoming really serious. Our daughter deteriorated over a number of years and her eating disorder became very entrenched so that when she had a major upset in her later teens, she went from being functional to almost being at death’s door in a matter of months.
They say that anorexia is not a problem with food, For us it was a mixture of not having coping mechanisms, not fitting in in secondary school, being over sensitive, perfectionist tendencies etc. So if you can address that then hopefully, with the help of dietician, you will be able to avoid your daughter becoming seriously ill.
I’m hopeful for you as your DD is young and you are knowledgeable. Good luck

Thank you for the advice and the diagram @greydoor which I haven't seen before so that's really helpful. I've been wondering about weighing her but I'm worried I'll start an obsession that she currently doesn't have.

@Shanghai101 thank you also for the kind words and advice. I think you're right that trying to get her to speak with someone sooner than later will be best so I've started to make some enquiries today.

Also, I've had this book recommended to me which you may all already be aware of but thought I'd share just in case as it looks like it would be a helpful read as it offers both the child and parent perspective amzn.eu/d/d1ha2bt

@JuliusCaesarRomanGeezer I’m not sure there is much you can do when your child is 18 other express your concerns. Do you know how much he weighs? And whether he has lost weight? Have a look at MEED guidelines. Websites like BEAT might have suggestions

It’s very difficult when they are that age. My DS is 16 and apparently that’s old enough to make your own choices. He is refusing all interventions and is allowed to do so until he goes under 70% wfh. He’s currently 73% wfh. It’s extremely frustrating and difficult having to watch him deteriorate.

Madferitchick My son is 13 and has medium needs autism. He keeps having thoughts of being overweight despite being a healthy weight.

In mid April 2024 he begun refusing meals and fast food. Now he will have fast food but if he has “too much” he tries to burn it off as quickly as he can. I have checked his phone and discovered a weight loss app.

@WoodenTrain I am so shocked by the lack of support you are getting. I'm pretty sure my DD was over 70% WFH when admitted to a unit. Iirc @Girliefriendlikespuppies 's DD was admitted when she was 90% WFH when admitted to hospital. Is your DS getting obs done other than weight? 6 out of the 8 times my DD was admitted for medical stabilisation, it wasn't about weight, but about her heart rate: below 60 bpm is bradycardia, below 45 bpm was immediate admission. You can actually measure your DS's heart rate on the phone - GoogleFit or loads of other apps, as I know he is averse to hospitals.

Wooden it's medical neglect imo, similar to curlys dd. Both of your kids need intensive inpatient support to get them well imo. It's really shocking how little support you get. My dd was so ill at 90% wfh I honestly believe she'd be dead at 73% wfh 😕

Quick have you removed those apps? Anorexia is so common in autistic teens, I think the combination of being black and white around food ie healthy food/non healthy food as well as believing thin = good, fat = bad, a tendency to be obsessive/rule based and add in a dose of low self esteem and you have a perfect storm.

@Madferitchick MyFitnessPal was a significant factor in my (autistic) DD's decline. She set it for 1500 cals per day, and gradually reduced it. She never got any warnings from it that, say, 500 cals was dangerous! At one point early in her illness she deleted it, but, in her words "It was too late then. I'd remembered all the calories of everything". She can still (in strong recovery) look at a plate of food and be able to gauge exactly how many cals there are thanks to that bloody app! Get him to delete and, if possible, keep tracking to check he isn't redownloading. Also, I'd advise ditching the bathroom scales - another thing DD got obsessed with.

Agree Nan I wish I'd chucked the scales away sooner and also wish I'd tackled everything sooner. It's easy to worry about making things worse in the early days but by avoiding the confrontation you actually enable the ED.

If I had my time again I'd have chucked the scales out (or never had them in the house to start with), taken dds phone away and put strict conditions on it and made food completely non negotiable from the start.

It's also worth noting that shining a light on the ED will make everything worse initially, often the restriction may get worse, the aggression towards you will definitely get worse, their mood will deteriorate. However once the food starts going back in bit by bit your child will start coming back to you.

I think I got confused because dd would (like a lot of other poster's children) eat relatively well on some days, she always ate dinner and normally something in the evening. She still would eat some treat type foods as well.

However she ditched breakfast and lunch and was running 5k most days. Also physically was really struggling, heart rate low, periods stopped, cold all the time etc.

It's really hard but if you think there's a problem I would assume there definitely is a problem and the quicker you tackle it the better the chances are of a full recovery.

The starting place is a GP visit with the hope of seeing a sympathetic GP, they need to do all the physical observations and a referral to the ED Camhs team.

Sorry, this should be for @QuickTraybake

quick update from us: DD is at home with us now 24/7 after the overdose. Need to keep an eye on her at all times. It's school holidays so I am WFH in any case but it's exhausting. Camhs crisis team are coming a few times a week but DD isn't engaging with them.
Saw ED team yest. DD is now refusing to get her weight checked and BP + puls taken. She is doing about 1700 cals per day which is just enough to maintain. probs the weight is going down but we don't know that since she won't step on a scale. I absolutely cannot get her to eat more. She gets so upset and angry/violent. FBT just doesn't work for us. Our case manager said she will discuss her in the team meeting next week but we have been going round in that circle for months. Her WFH is somewhere in the 82/83 ballpark. That's my best guess in the absence of a a recent weight. The PRU have accepted her and she will start there after the Oct school hols. Happy about that but feel really stuck with everything else. I know she is hallucinating and her MH is bad but I think the anxiety which is cause all the MH issues is driven by the AN. Camhs' priority is to reduce suicide and self harm risk. They say the eating is the ED clinic job. Everything is dealt with in silos but it's all connected. how can you try to deal with the anxiety, SH, suicidal thoughts etc if you don't wanna know about the AN? We have been in therapy for 2 years and it's worse than ever.

Thank you so much for replying, @WoodenTrain . I'm so sorry that things are so difficult with your son.

I don't know what DSS weighs, and there's no way he'd let me find out, I suspect :(

I have decided, though, that I can't be put off talking about it with him just because he gets angry with me when I do. I've been so scared of making it worse. But it seems it's been getting worse all on its own anyway....

Hope everyone is doing as OK as possible today.

Hey everyone, just catching up. Sorry things are so hard @Curlyhairedassasin, your dd sounds like she is really poorly. It is so frustrating when there are these artificial separations between teams, as you say your dd is one person experiencing things which all link together.

Agree with @NanFlanders and @Girliefriendlikespuppies - scales and apps like my fitness pal are very dangerous for our kids. We deleted everything on my DD's phone which was related to weight or calories, but we have had to go back to weighing her more regularly recently. We keep the scales hidden - generally in the boot of my car, which I back up against a wall so they can't be retrieved.

Unfortunately we are having a bit of a relapse, or perhaps we weren't as far along in recovery as we hoped we were. Seeing a resurgence of various discarding behaviours, much more anxiety and avoiding tactics about eating, and a bit more compulsion to exercise again. She's lost 5kg over a couple of months. We're trying to work on it, but I've lost some of my oomph and feeling pretty down about it all. I'm not sure we will ever see the end of this ed bastard at the moment and I'm really struggling with that idea. I'm pretty furious with the clinician we have been working with who has been weighing her, but didn't feel like it was necessary to share the losses with us, and doesn't agree that she needs to add this weight back on. She had got to about 118% wfh, and had started to really seem like her old self again. My view is that this is probably where she needs to be, but I feel like an argument coming from them about this. I feel really let down by the clinician, and I just don't get their approach...

I've not posted for a while because I thought DD was making progress, or at the very least eating at maintenance. It turns out she isn't, and has lost more weight - she's at about 82% wfh now. She's completely controlling her food, and because of her autism and PDA me taking control of her meals simply wouldn't work - she'd point blank refuse to eat.

So my question now is, would it be really awful to swop out some of her foods? eg she has a hot chocolate every night as part of her snack at 8pm. It's Options and is 38 calories, so I'm considering replacing the contents with a higher calorie hot chocolate - so she thinks she's drinking the low calorie option but she'll be getting an extra 80 calories just from that. And doing the same with her cream cheese and anything else I think I can swop easily. I'd need to be really sneaky and it feels awful - if she found out, I'd lose her trust.

I'm not even sure that it would work because things would taste different, and she is very sensitive to taste and texture.

Has anyone tried it? Is it worth attempting for an extra 100-150 calories a day?

This is only short-term solution - I'm still trying to get her psychology support, we found a lovely lady but she does work for CAMHS too so needs to get their approval (even though we would be paying privately).

Hello. I'm really sorry to hear this about your DD's progress.
I've only just joined the thread, so I hope you don't mind my responding to this. I am not very knowledgeable about ED (yet - although I'm reading obsessively now), but FWIW I just wanted to say that I can immediately and definitely tell the difference between "diet" and "not-diet" hot chocolate and cream cheese. I suspect if your DD is also quite taste sensitive, she'd also know immediately(?). So this would seem a risky path to take - although I can totally see why you'd be tempted to do it.

I hope the new psychology input lady works out. All the very best.