Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Thanks. I wondered at first if it was a form of Arfid because she has a lot of sensory issues (although up until this year she ate a wide range of foods). However, I have discovered lots of searching of the calorie content, food wrapped up and hidden in tbe bin, searches for high intensity exercise when she was supposed to be on bed rest etc. I don't understand why they are so reluctant to diagnose her. Or even not diagnose her and pass her on elsewhere.

I agree with @Curlyhairedassasin ARFID isn’t someone wanting to not eat, they only enjoy certain food and eat what they enjoy with no issues.

@SisterMargaretta These are all typical behaviours for anorexia and clearly underpinned by the desire to lose weight. Not sure what to suggest, we didn't struggle to get an anorexia diagnosis but I know there are others in here who had similar issues. But what you describe is not Arfid.

@SisterMargaretta
I’ve been on these threads a while now and have been working with people like Jenny Langley and an ED coach. Unfortunately it isn’t uncommon for a diagnosis not to be forthcoming when the sufferer won’t engage. This happened with my DD too and it is wildly frustrating and quite scary. In fact on the third visit to CAMHS when dd had just turned 16 and still no diagnosis, she declared she was never going back and the psychiatrist signed her off and told dd she didn’t have an ED.

I had managed to get dd on 3 meals and 3 snacks only 3 weeks before that appointment with the ED coach and we’d put going on holiday on the line to do it. Ie we would only go if she ate like this. Being told she didn’t have an ED really set hee back and I was absolutely fuming with psychiatrist. It was very much like your situation. No diagnosis, no help. The only help I actually got was about 3 months after dd was discharged when I called CAMHS in desperation one day and was put through to a mental health nurse, who was truly fab.

As for ARFID and / or anorexia, the ED coach said she thinks dd has both and the anorexia has piggy backed on the back of the ARFID and that’s why dd didn’t actually restrict to lose weight. And this is also why CAMHS were messing around trying to decide if dd had ARFID, anorexia or disordered eating. In the event, we just got a big piss off from CAMHS with no signposting anywhere (which I’d been told wouldn’t happen) and the response to my PALS complaint was just more of the same.

So as others said, ARFID is textures, colours, smells etc. Dd always had issues with these and when younger I spent a lot of time expanding the repertoire of foods she would eat only for it to go back to point zero with the restricting.

Now that my dd (now 17) is improving, she doesn’t want to put weight on. A lot of this is the belief that boys are attracted to her because she is thin. And she’s much more aware of things like calories. So in fact the anorectic behaviours are becoming more apparent. She shows a few autistic traits so is mostly honest and has only once hidden food, when she started dumping a yoghurt I’d introduced… I never again pushed food onto her as this doesn’t work with her.

As for the ARFID, dd needs to be coaxed into eating foods with lots of inference and very very subtle hints (the coach calls this sewing seeds). Dd very recently started eating chicken again, which is a major breakthrough, as she decided to go vegetarian a month or so into restricting, which accelerated the restriction. Again I can’t force the chicken on her otherwise I’d have complete refusal and many months to put that right. But I can set up favourable conditions. And things like vegetables, I talk to her from time to time about a rainbow of colours as her diet is very beige. It’s all very complicated. And idk if this is any help to give you a little more insight.

She had been SO upset today. So distressed. Wailing in my arms right now. “I’ll do anything mummy. No snacks tomorrow Mummy. Please mummy. Just for one day. I don’t want it to be this hard tomorrow.”. It’s so hard - I could stop her pain right now by agreeing to skip snacks. And probably still get her calories in with the three meals. But more small eating more often is what is told is best.

We’ve decided to reintroduce snacks (we have managed to get calories in these past two weeks with massive meals), and the last two days she has done so well (two snacks and two meals yesterday, and two meals and two snacks already today - dinner is planned).

Hey, I know what the classic Arfid symptoms and behaviours are. Just explaining my child's behaviours are more in line with anorexia but that is not their diagnosis. Just sharing an experience that might help, maybe not

My dc does not report any issues with texture, choking etc, does hide food etc, and an ARFID diagnosis has allowed access to services whether conceptually it's right or wrong

When we were in the early part of recovery with dd she had lots of times like this. I visualised her anorexia as a sneaky monster which would use her distress for its own gain - fewer calories. Sometimes the monster would cry, sometimes the monster would be angry and try to push me away. All with the same aim, and if ED ever got to have fewer calories by doing this then the next time would be way more intensely difficult. Viewing it like this helped me to be able to tolerate the distress, and not back down on whatever the current thing we were working on was. If the ED gets an inch, it takes a mile.

I used to say to dd that the only way out of this is to eat you way out. There is no other route to recovery other than gaining weight and enabling the physical body and brain to recover first.

Thank you. Oh god, it was awful. It didn't feel like the ED kicking back, just my little girl begging me to not "hurt" her again tomorrow.

What actually happened next is that I burst into tears. Explained that I would do anything, ANYTHING to make her feel better. But I just had to do what all the experts are telling us to do. And that how ever desperately I wanted her to feel better, I wanted EVEN MORE for her to beat the eating disorder. And we then had a bit of a chat.

We are talking about the ED as a toddler having a tantrum. Except it won't grow up and behave nicely. And while not eating will make life easier, eventually not eating will be the end of her.

I will use the "the only way out is to eat your way out" as that might be handy slogan too.

Thank you. I'll look into the Jenny Langley zoom group. I've seen the website and found it useful, but haven't looked at it for a couple of weeks. So def due a revisit.

Our local CAMHS ED team run a half day workshop. They are pushing me to do it. But I just can't figure out how to do it - it's a 3/4 day and I just can't figure out childcare and work and cooking for my daughter and walking the dog.

We've tried to push breakfast/snacks WRT return to school, but she then says she doesn't want to go to school anymore anyway. But she is trying her hardest to negotiate out of eating, so we can ignore that fairly easily.

I'm afraid I don't have much advice. But - surely most teenagers who want to hide an ED would be "smart" enough to deny wanting to lose weight?

My daughter is 11, they say she has an ED but aren't sure yet what sort - which I find weirdly helpful. I suspect everyone thinks it's anorexia, but she hasn't said she is trying to lose weight.

When we were in this situation I used to say the next time will be easier and if we skip snacks even for one day we’re back to square one and the hard work you’ve put in today is undone. You’ve worked so hard already I’m not going to make it harder by allowing no snacks, we did it today and we’ll do it tomorrow, each time gets easier. Sometimes he’d go round and round trying to negotiate but I’d say if this is about snacks again I don’t want to discuss it until they’re eaten, your talking to the Ed not your child.

Dd showed me a TikTok of “triggers” from older girls which ended their EDs. So interesting along the lines of “I’m too
old for this shit”. And one realising she was a role model for the young girl she babysat for. Was heartening reading.

For dd the psychiatrist took a hard line and told her no socialising or even taking her GCSEs if she didn’t eat. Dd came out of the session furious and said what a bitch she was. It bloody worked though.

I’d love to know what sorts of things were on that tink tock. Or a link - it’s not an app I use, but I could look it up.

Really interesting about the role model idea. My daughter is in year 6 and often plays with the younger children. She says they’re missing her. I’ll try the “good role model” angle sometime.

I agree completely. In her mind, though, it’s getting harder not easier (and mine too, to be fair!). It’s been two weeks since she was in hospital. While her meal choices haven’t been great (yesterday she ate mostly peanuts and buttercream) we are almost getting the required calories into her (we averaged 1900 this last week).

@HappyRainbow123
A disproportionate number of sufferers are neurodivergent and anxiety is a massive trigger. My dd stopped eating lunch because that’s what everyone else did (ie to fit in with the friends she thought she wanted to be like). She doesn’t have an autism diagnosis but there are many indicators and I’d like to get her assessed when I think she will agree.

@TheaBrandt1
It’s great that your dd has that much awareness. And she always has from what you said. I think what also helped is that she went down very fast so you had to intervene in the early stages.

Unfortunately for many like my dd, she wasn’t even aware she was even ill for at least 6 months into treatment and unaware for a long time before that. She still is only accepting of having a ED because we tell her she has one and we’ve been working with the ED coach for 18 months. We couldn’t even mention the word eating disorder until about 6 months ago.

The approach the psychiatrist took with your dd would not have worked with mine. I’ve had to be my dd’s therapist alongside being her mother. I still use therapist talk all the time as there’s a lot of tricky stuff for her to learn but she’s more accepting of me speaking ‘normally’ now. She still is unable to look after herself on a basic self care level for example.

At this stage food is food. But that sounds very ARFID like. I’m not saying your dd has ARFID btw. Her choices are pretty good on a basic recovery level so her brain is perhaps realising at a subconscious level what she needs.

Peanuts are an excellent plant based protein source. And butter is brilliant. The brain needs a layer of fat around it to function. And there’s carbs in the sugar albeit not the most effective. So she had carbohydrates, protein and fat.

Of course this isn’t how you’ll be wanting your dd to eat long term. However, this level of basic eating is how my dd sustained herself in the beginning, albeit her choices of proteins and fats were not as good from a nutritional perspective.

@HappyRainbow123 you are really at the coal face. It is the beginning of your DD's ED recovery.
There has been lots of good advice already. But honestly I think you need to bite the breakfast bullet. It is going to be so hard to increase her calories enough without 3 meals a day, and 3 snacks. The longer it remains unaddressed the harder it is going to be.
In some ways her distress is so high you might as well go all in. Get it all over with in one go.
Even if you just establish the principle with say a smoothie (which can be v calorific when made with banana, ff yogurt, milk, oats and fruit (I also added cream)).
She is so young. Her ED is bullying her merciliessly. However she won't die of anxiety. It will be hell for her. But her ONLY way out is to gain all her weight back and more.
The extreme distress is real to her. But survivable. Learn to walk alongside it and detach from it, whilst remaining supportive, remember it is temporary and in some ways neccessary. Frame it as a side effect of treatment. Something horrible to be endured, but that the treatment is more important than the side effect.
By your physical presence and emotional support you are helping her with this fight. That's prob why being back at work has set her back. ED sufferers often need the 24/7 support of the physical presence of a main carer (usually mum), whilst simultaneously hating them.
Someone also mentioned 'knowing when recovery has been achieved'. Thats a hard one. Weight restoration (by which I mean all the weight lost, plus some extra), is just the start. Time at that weight is needed to recover. The brain lags everything else in recovery. I was able to reduce my input as DD gradually took back control. But I was vigilant and involved for a good 2 years after weight restoration.
I would also add that my DD was just 13 when her AN started. She was fully recovered by 15 (WR by 14). She remembers hardly any of it. None of the distress, hardly any of the appointments, why it started, anything. She will not discuss it. It's a chapter of her life that she has closed off and moved on from. So I was never able to unpack it with her. She is totally back to normal.
And she never admitted to wanting to lose weight. At any point. She was still diagnosed with AN.

@Lottsbiffandsmudge I found the update on your daughter really interesting as she sounds very similar to mine. We're still in the thick of it but your story has given me hope!
My DD13 also has no idea why it started and has never admitted to wanting to lose weight. That has worked in our favour as she doesn't seem overtly concerned about body shape etc.
She gone from 70% wfh and sofa rest in August and is now 83% wfh and back at school, with one half day off for her CAMHS ED meeting each week.
ALL I've done since August is focus on getting her re fed. It's incredibly hard and there's been times I've just not felt able to do it, but we do seem to be getting somewhere. It requires all my attention and we stick to a very rigid schedule at the moment. It's not forever though - hopefully!

My DD was trying to 'remain fit' for her sport when her world collapsed in lockdown. We (along with school, Joe Wicks, her clubs) encourgaed a lot of exercise. She then decided to reduce her food (it took us ages to realise, we were also hood winked by healthy eating and supporting her fitness regime). She lost weight quickly and developed AN.
My realisation that all was not well dawned on me slowly. And finally came into sharp focus when she exploded as i had buttered her toast.
I look back at photos of her now and cannot believe i didn't see her weight loss. She was skeletal..but also puberty had not hit, and she still looked like a child.
I have to be honest and say that the period to 90% was unrelenting hell. Daily grind of food and getting her to eat, dealing with her meltdowns which were by turn aggressive and violent or hysterically distraught. She also was devious, lied and was exercise obbsessed. So I couldn't leave her side as she would start star jumping. If i let her out to do her 'permitted walk' alone she would run laps of the village.
Add to that, that we couldnt see anyone outside our house and it was awful. My poor sons also had a torrid time.
The one upside was on line school. So we never had the school vs no school dilemma, although at her lowest weight she couldn't really engage, and even when putting weight on I had to sit with her through all the lessons.
Once she hit 90% ish, things got a little easier. And at 100% even better. I still could not relax though. Even a year after WR, she would pick the lowest calorie item on a menu, never eat dessert, decline something that wasn't part of her 3 and 3 (say a friends birthday cake) etc etc.
Around her 17th birthday (so 3 years after WR) she finally chose a steak and chips. I tried not to react, but inside i finally relaxed..
She is honestly now totally fine at 18, in a new country.
It incenses me when health professionals won't diagnose AN, because there has been no expression of a desire to lose weight.
AN is a biological illness, triggered in those susceptible to it genetically, by weight loss. It is irrelevant how and why that weight loss occurs. Once AN sets in then weight loss and keeping weight off is the goal of the AN. Not necc the patient.
My DD said she never meant to lose weight. And that it was an accident.
To this day I am guilty that i didn't notice sooner, and up her calories and ensure she ate enough to fuel all that exercise.
But she is fine..its a part of her life she wont discuss. Its a part of my life that gave me PTSD, but I am a lot better now.

Thank you to those who have commented, I find your updates and thoughts really helpful. @Itsendless your username sounds very appropriate!

I'm afraid I am still all very doom and gloom. The hours of screaming I could cope with ... but she's still not eating enough. I think she is now getting so scared of what it feels like AFTER eating that she melts down BEFORE eating. CAMHS have suggested we meet with the dietician, but I think that will just feel more depressing - it will just reinforce that I'm not managing to beat this thing :(

She had her check up yesterday. The good news is that her heart rate is going up (it's 61) but her weight has remained the same. We had tried SO HARD I really thought we would get another gain. And I cannot see how I can get any more calories into her.

I'm trying everything I can think of. I've cut back work drastically - sort of aiming for just 3 hours a day, as I can't completely stop. We had a CAMHS home visit today and it just didn't feel helpful - other than "keep trying" and "eating is important" I just feel like we are failing.

CAMHS have agreed that it might be helpful to go back to school a few hours a day, so we shall try this tomorrow morning. Might just get her mind in a better place?

@HappyRainbow123 Sorry to hear how tough things are at the moment. I promise it does get easier but I know how tough and draining it is. It's relentless.
Forgive me if I've suggested this to you before but have CAMHS suggested trying supplement drinks? My DD has 2 or 3 Fortisip Compact a day which are 300 cals each and 125ml, so a small amount to drink. Without these I just don't see how we'd reach enough calories a day as my DD has never been a big eater. She accepts she has to have them but I know for some it's a non starter.

I’ve just ordered some fortisip, thank you for the idea. We have been using huel, turned into a smoothie with cream and oatmeal, but the fortisip is def worth us trying.

I think our trouble is - it seems to be getting worse rather than better! I know it’s early days (it all kicked off 5 weeks ago, GP 4 weeks ago, hospital stay nearly 3 weeks ago and first CAMHS 2 weeks ago) but it had felt utterly relentless and I’m worried that we can’t keep this up for months!

I know that CAMHS have seen it all, but I just don’t know if they understand how desperate we feel it is. Or whether this is actually just all normal.

We get our Fortisip Compact on prescription. If your DD drinks them then it's worth asking CAMHS for a prescription. It was CAMHS who said my DD needed them, but only after a number of weeks of me explaining that I just couldn't get such vast quantities of food into her and she's never liked cream, fatty foods or fast food. Which made getting enough calories into her very difficult.
It took a number of weeks before our DD started gaining weight regularly and we had a drop over half term. It takes time. A flipping long time and it's pretty much been my full focus for months now. She had her first PE lesson at school today so there is progress. It still feels very fragile and like it could go wrong at any minute but I plod on.
We have weekly sessions with our contact at CAMHS ED which do help keep us on track. Are your appointments weekly?

Take everything that CAMHS are offering @HappyRainbow123. The dietician is there precisely to help your dd to eat. To do things like break down food rules, prepare your dd to eat a balanced nutritional diet, to offer support and guidance on meal plans and snacks and so forth. You will get through this. And yes, it is relentless and if you give in, the ED fights back. If you can afford it, I suggest you get some therapy.