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

[Curlyhairedassasin]

New thread as old one is filling up

@Mummyoflittledragon same issue with keys here, i got a key safe. It's amazing although everyone is unique, the same experiences come up again and again

@unbuckle This is an executive function issue with my dd. The more I look into it, the more I realise that I have a lot of these issues too. I’m forever losing my phone and keys, so I have issues with working memory etc.

Hello everyone, I pretty much vanished for several months as I was just full of bad news. No eating for months, just vast amounts of chewing and spitting which, combined with Olanzapine, actually seemed to sustain her. In fact, she gained weight! Unfortunately we had to stop the olanzapine in Feb due to liver issues.

It seemed her anxiety was the major factor, and predated the ED by ant least a year, and the difficulty swallowing was sort of secondary to this. So we had been treating it as an anxiety disorder and did everything in our power to help that. Return to school, outings with friends and starting Sertraline. But in Feb she started pacing and running - she said this helped the anxiety - and combined with ceasing olanzapine the weight just fell off her.

Recently we have had another stint in hospital, another A and E visit, new meds to help electrolyte deficiencies, restarted the olanzapine blah blah blah.

Anyway. She revealed on the weekend that actually she DOES want to lose weight. She wants to be skinny, the skinniest in her class. And has felt like this for quite some time (since she was 9 1/2, she’s 11 now). And all the running and pacing was to lose weight. So a massive shift. And, having advocated for her so heavily WRT the anxiety, we feel hugely duped.

However. Maybe, now we know properly what we are dealing with we can finally get somewhere? Her most recent sertraline increase was nearly 2 weeks ago, maybe this will kick in and help. But we feel kind of stuck. Annoyingly, her psychologist is in holiday this week and we’ve just changed psychiatrist. The meal plans and FBT just never worked, and in any case she now just spits everything out.

I know anorexia doesn’t respond to logic, but I’m trying hard to explain that it’s actually normal to dislike parts of your body. But healthier to accept it as it is. But she just doesn’t care about being healthy or doing fun things, being thin is all that matters :(

Hi @HappyRainbow123 That sounds incredibly tough for all of you. I am so sorry for your little girl, she’s just so young, bless her. ❤️

I have spoken several times about the ED coach. From what she says, it is really common to have anxiety before the start of and ED and that these signs and symptoms present a year beforehand. Please don’t be upset with your dd. In my experience with CAMHS, it is actually the NHS insistence to assign people to boxes, which creates the issues as they don’t treat people as a whole.

My dd is a case in point, she was never diagnosed because they couldn’t decide (because dd was too anxious to participate) what the origin of the ED is, or if indeed it is an ED at all (um folks she was really ill, it’s not rocket science).. And as I had zero direction from them, I got an ED coach on board because they wouldn’t help dd without diagnosis. And they wouldn’t diagnose without dd’s participation.

This all creates a system, which is incredibly difficult to navigate. And meanwhile, you have children, who aren’t being treated. Just so you know, it’s also common that once you lose the weight due to anxiety, that you want to continue to lose weight. My 17 yo dd was exactly the same. She wanted to be thinner. Tiny for her means cute, petite and therefore feminine. And then absolutes kick in. Wanting to be the tiniest, the thinnest, the prettiest etc.

FBT never worked for my dd. Under the direction of the coach, we do modified FBT. She eats with us twice a week. The rest of the times she eats alone in her room or with friends. If you give your dd something to eat alone, will she do that?

@HappyRainbow123i think for some children they need specialist inpatient support and I wonder if your dd might be one of them 😕

Is that something that’s ever been discussed with the ED team?

Yes, sort of. There’s a local day service which would be great, but they start at aged 13. I think they are considering seeing if there could be an exception made. Otherwise, inpatient services are at least an hour away. For medical stabilisation, though, CAMHS and our local hospital seem to work really well together.

That sounds so tough, sorry to hear one so young struggling

Anxiety was definitely a root for my DD
She acknowledged and sought help that way before any of us realised she also had AN. Now in recovery it's a case of addressing that to help manage the ED and avoid relapse. Maybe anxiety sounds less scary to acknowledge for your DD. Help for that gets her into the system and visible at least to now help with the ED

We're trying super hard not to be upset with her, we don't want her to regret telling us. We've told her it must have been really hard to keep it a secret for so long, and to so many adults.

My daughter also prefers to eat alone. Even when FBT was (sort of) working, she'd prefer to eat in her room. But, weirdly, other times she prefers us to eat what she is eating as it feels "safer".

We've thought about looking for alternative provision. But at the moment, when CAMHS and our local hospital work together (for example, if we go into A and E we are now streamlined, and her paediatrician works at both sites) it'd be hard to lose that safety net. And she has a lot of input - psychiatrists, psychologist, family therapist, dietician and paediatrician are all pretty involved, as well as having previously had the home visiting team. But CAMHS have agreed that ditching the meal plan back in Jan/Feb was sensible.

Thanks. I think she didn't want to admit the truth - either because we'd address it, or she didn't want to admit it - and had to make up reasons for not eating. Who knows! The eating disorder would make her anxious anyway, she's malnourished and her brain isn't working properly.

Hi everyone. I’m struggling to find out how to work out the weight to height percentage. Everything online ends up pointing to bmi. Is there a different calculation to use?

Stressing about everything today. First camhs appointment is in two weee after waiting with this problem since January. I am trying to prepare myself for what they might action. Eg. Will they say no school? (Worst case scenario)

@Raspberrysins it depends on a lot of factors.
weight to height
how much weight they’ve lost
how they are eating now etc.
Eveyrones first appointment can be different, but they usually last a couple of hours and involve a doctor or nurse and Cahms support workers.
The nurse will do a physical health check. Please ask away. Most of us remember it well!

@Raspberrysins in order to calculate the WFH you need to

1. Enter your DD's info into the link below. You'll need to play around with the weight figure until it shows what the weight would be at 50th centile.
   https://www.nhs.uk/health-assessment-tools/calculate-your-body-mass-index/calculate-bmi-for-children-teenagers/enter-date-of-birth

2. Let's say the 50th centile = 49kg and your DD weight is 45kg. Calculate 45 divided by 49 = 92. She'd be at 92% WFH

CAMHS are generally looking for a WFH between 95-105%

Hope it helps. x

Thanks @Itsendless I think I worked out she is 75% which is bad isn’t it?

That is quite significantly underweight, yes. Different areas might have different approaches but out CAMHs says no school under 80% wfh. However, they did let our DD carry on at 76% as long as she ate her breakfast and we supervised her lunch and were confident she wasn't running around burning off calories.

I know it's hard but try not to jump ahead to the what ifs yet. A lot will depend on the outcome of the health checks they do as well as her WFH.

@Raspberrysins at least you know where you are and roughly where you need your DD to get to. It's a tough time and I feel for you.

My daughter was in and out of school at 70% and has been back full time since around 80% wfh.

75% is very low, have you got her on sofa/bed rest?

How much is she actually eating atm?

They will also look at her previous weight etc and what she says she eats etc.

Dd is ill again She is very sorry for herself and complaining she gets ill more often then we all do… . I am sympathetic but at same time I want to scream at her, “what do you expect when you have no nutrition “ Just venting I know, but agggghhhhh

Sorry to hear that. How about trying Socratic questioning? This really works with my dd. I get it, it’s totally infuriating. We’ve just had a bust up with dd today. But she’s complying for the most part now but it’s been hairy. This isn’t about eating atm. She was refusing to study for A levels again. And it’s anxiety based. She relapsed off the back of anxiety over mocks so I’m trying to avoid that.

These are questions to sew a few seeds. In this instance, ‘Sweetie, that’s so tough for you getting ill more than us on top of everything else. Do you think maybe we get ill less often because we aren’t restricting our intake?’ Idk what she would say to that: Gripe gripe whinge, anger maybe? Then try and find another angle in. A really generic response for example would be ‘I can see you’re really annoyed about that. Do you think there’s anything you can do about it?’.

@Girliefriendlikespuppies not at all. She seems fine in herself. She is eating all meals and about half of snacks. Just not putting in weight so I know it’s not enough.

Thanks, I agree we have end of year lower sixth exams coming up and the anxiety around that plus some boy stuff going on is definitely shifting stress levels up a bit (plus my elder dd who has actual a lvrls this year). Will try and think how I might word such questions in a manner least likely to result in door slamming tantrums. I think probably where she is is she knows logically why she keeps getting ill but rejects it emotionally?

Thing is they’re fine until they’re not so do keep a close eye. You’ve talked about your dd being sporty so she will have been using her muscles for fuel. My dd was exactly the same. Then suddenly she reached a tipping point, was exhausted and had to go on bed rest. If your dd is maintaining, that’s actually not that bad, especially at the beginning. It is not uncommon to continue losing at the start of the refeeding process.

@Mummyoflittledragon that’s a little reassuring as I didn’t know that. I couldn’t work out why she’s not gaining weight yet. It’s such a slow process. Every day is a battle and it’s so hard to keep going.

At 75% wfh she should be doing nothing more strenuous than walking from bed to the sofa (and possibly not even that!)

She will need a minimum of 3000 calories a day to gain and for some teens it can be double that.