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

[Curlyhairedassasin]

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

bed rest not bestest

@PermanentlyExhaustedPigeon80 it’s good they have admitted her, my dd was in complete denial there was anything wrong with her as well. It’s really common and a well known symptom of anorexia to truly believe you’re fine and everyone else is making a massive fuss about nothing 🙄

It sounds like they’re worried about refeeding syndrome if they’re doing daily bloods and I think your dd will be for a couple of weeks to make sure she’s following the meal plan and gaining weight.

Use this time to read the Eva Musby book and start gearing up for when she is discharged.

Have you thought any more about reintroducing dairy? As I said before I think recovery will be easier and quicker if your dd can have a less restrictive diet.

They're sending us home! Apparently medical checks are all okay, which is good news, and DD has eaten all her meals and snacks since yesterday morning. So the doctor said they're happy for her to be managed in the community. I have very mixed feelings about this. Delighted to be going home of course, but worried it's too soon. Everything seems fine now, but 2 days ago she was refusing to eat anything. DD is very pleased, and seems motivated right now, but is still saying some worrying things, like 'at least the meal plan means I can't eat too much, and everything has to be precisely measured out' and will only say 'maybe' when I ask if she thinks she'll be able to follow the plan at home 😕

Thanks to everyone that gave advice. I actually left her alone with the meal plans and she seemed to get on board. We went out and bought lots of snack ideas and those are going down fine. Tears now over 3/4 of lunch. Managed half easily so think we will stick with 3/4 tomorrow too and then move up to a whole meal.

Good news that you are getting out of hospital @PermanentlyExhaustedPigeon80 . Hope that is manageable.

How's everyone doing today? DD has managed dinner and breakfast at home so far (back to Meal.Plan 1, so smaller portions which she finds easier), and seems pretty determined to stay out of hospital, so feeling cautiously optimistic. Case Worker appointment on Thursday. Just hoping we can make it that far without any relapses, but trying to take it one day at a time.

Anyone there? After a pretty good weekend, DD is having an awful day. Refusing all food and drink, other than a few sips of water. Nothing I try is working. She just keeps saying 'I can't' and quietly crying. She's cold and tired, and just seems to have completely shut down. Couldn't get her to stay in school this morning, and not sure what to do tbh. Any advice? Thanks 🙏🏻

@PermanentlyExhaustedPigeon80 If she is not eating and only sipping some water, there is only one place for her: hospital.

I would either go via a&s to get her admitted or ring the ED/CAMHS team to request re-admission. I thought this was likely going to happen after your quick discharge. She will likely need a fair few weeks in hospital.

Hi Pigeon, just saw your messages. If she refuses all food and is cold and tired I would put her in the car and drive her to A&E.

Stay calm and tell her that she is very brave. Show her lots of empathy. Explain to her that she needs to eat to be able to do whatever it is that she wants to do most. She needs motivation.

Try to speak to A&E doctor on the quiet and tell them not to minimize it, otherwise they will strengthen the ED voice and make your job harder. They need to reinforce how important it is for her to stick to her meal plan.
This is not unusual at this stage but needs to be turned around asap.

Hi, Pigeon that sounds hard. I would get back in to hospital too. We are having an awful time. Think my DD wants to be admitted she just keeps saying she can't and today has been the first time she has totally refused food - she is finally realising that we are in charge of her care. I'm so down, I've been to work and don't want to go home but can't leave my DH in the firing zone.

Thanks @Curlyhairedassasin and @Shanghai101 for the really helpful advice - it's hard to accept that we might have to go back, but that was my instinct too. I've just spoken to CAMHS and we're going to see if she can manage an evening meal. If not, going to have to take her to A&E, which will be awful, but I guess no choice. I think we were discharged quickly because she's not underweight. Which is particularly awful because that feeds into DD's sense that she's not thin / ill enough yet, and needs to try harder. Other than weight, she meets all the other diagnostic criteria for AN, but some doctors seem to find it very hard to see that, as her BMI is ok. I don't want to have to wait until she is worryingly low weight before we get taken seriously. It's so clear that she's headed in that direction, and surely now is the time to take early intervention??

@littlemissy12345 - so sorry to hear you're in a similar situation. It's just horrendous isn't it? I'm at home and DH is at work, and I know he feels similarly torn - but needs to keep some sense of stability / normality going, as well as getting paid! I've been off sick since Thursday as I just can't cope with work as well as all this. My anxiety is through the roof and I can't think about anything else. I rang the GP this morning to try and get some help (think I need my ADs to be upped, as well as being signed off officially for a few weeks). Surgery were awful - despite me crying on the phone and trying to explain how ill DD is, I was told the soonest I could have an appointment was next Tuesday morning!

What are you meant to do when they just refuse food? No amount of encouraging, cajoling, reassuring or insisting seems to make any difference. Once DD has decided she's not eating, that's that. It's like talking to a brick wall.

@PermanentlyExhaustedPigeon80 It's not just weight it itself, it's very much down to the direction and speed of travel. If she doesn't eat, it doesn't matter that she isn't underweight (yet). She will still get ill very quickly. I would take her in and make if clear that you cannot keep her save at home. Sounds like the ED has a really strong hold over her.

DD totally refusing food now - how long before we take her to A&E? We are seeing CAMHS tomorrow afternoon.

@littlemissy12345 we were always told to go to a&s if she eats less than 500 cals for 2-3 consecutive days.

@littlemissy12345i would wait until tomorrow when you see camhs but keep trying
@PermanentlyExhaustedPigeon80as others have said you pack up the meal and go back to a&e. We were parked up and paid ready to go in and he started to eat, it makes the message clear that food is non negotiable and all meals need to be eaten. Hospital may not admit but all checks will be done and if safe you’ll be sent home again. Twice we got to the door and he ate and three other times it was on the drive there he started eating. Even in the snow, you stand strong and they eat or need to be checked/admitted.

@PermanentlyExhaustedPigeon80 you can’t force them to eat. In my opinion all you can do is try to find something that they desperately want to do and make that conditional on eating. Punitive measures never worked for us (ASD).
Not everyone can do it at home and I really feel for you as it is hard to get effective help when your DDs BMI is still ok. If you can afford it, I would advise going private. If you can’t then learn everything you can about the New Maudsley Approach and get her a therapist/ED coach.
@littlemissy12345 if she’s safe then wait until tomorrow. But if you have any concerns or she is fainting/having heart palpitations/chest pains then best be on the safe side and take her to A&E

So sorry how utterly terrifying xx

Agree with Shanghai find something they love and leverage the hell out of it. Telling super cool teen she will have to re take a school year not sit her GCSE’s and be in year 10 and have zero social life and miss her post gcse festival if she didn’t eat was enough for her. She is NT though.

@littlemissy12345 so sorry to hear your DD is refusing to eat too. It all seems to have escalated very quickly for us, which has been very hard. I've now spoken to the CAMHS ED team and they've advised us to keep an eye on her tonight, make sure she drinks plenty of fluids, and then see how things are in the morning. If she still hasn't eaten by then, we're going to take her to CAMHS for obs and let them make the call on next steps. She's refusing her dinner and currently drinking lemonade with a spoon. She seems in reasonably good spirits, but just completely resolute about not eating 🤷🏻‍♀️

How's your DD doing @littlemissy12345 ?

Still in two minds about A&E, and totally hear where lots of you are coming from, but think hospital environment might exacerbate things for DD (ND) and want to give it a little more time. If she deteriorates physically we'll obviously take her straight there.

If they’re having less than 500 cals I’d always take them in, not eating is deadly and it’s v easy to want to minimise the seriousness of what they’re doing to themselves (I know I definitely tried to minimise how unwell dd was in the early days).

Anorexia has a scary high mortality rate and in kids they tend to compensate until they suddenly collapse.

If in doubt take them in is my advice.

@PermanentlyExhaustedPigeon80 and @littlemissy12345 I can understand totally the desire not to take your dds to A&E. To a certain extent you are playing a lottery when it gets to this stage as things can go downhill very fast so please monitor them and ensure they have eaten something.

Red on MEEDS (medical emergency in eating disorders) and therefore a medical emergency is less than 500 calories in a day or no food for 24 hours. At this point, they really should be taken straight to A&E.

Agree with girlie I was also too complacent and minimised it and have to live with that regret. We turned it round in the nick of time to avoid hospital.

I think it's common to minimise. I have told the story few times, a few years ago, we went in a Sat to a&e for eating very little and got send home (ECG, bloods, all), on Monday noon all basic observations were still ok in the ED clinic. By the late evening she was cold, heart rate 35 (but still wild and aggressive when asked to eat). We rang 111 who send an ambulance. Egc highly abnormal, body temp under 35, blood pressure in the cellar. She was admitted to HDU as she was coding red and I was told she was physically seriously ill. 2 days prior, the same tests were all still normal (and some basic tests were fine still a half a day earlier). Things can really tip quickly and our history also got us admitted a lot quicker the second time round. If in doubt, get them checked over.

Thanks for sharing your story @Curlyhairedassasin and I'm so sorry you had to go through that. It must have been terrifying.

DD is now on nearly 40 hours with no food, which is very worrying. She's drinking thank goodness, but refusing all meals and snacks. We have an appointment with the CAMHS ED team at 1, and I suspect they'll send us to A&E if she still isn't able to eat at that point. She seems oddly calm and actually a bit brighter than yesterday, but I hear the warnings that things could go downhill very quickly. She's definitely dizzy when standing, but trying to hide it.

How is your DD @littlemissy12345?

I think DD is trying to make up for the fact she followed her meal plan for 4 days by eating nothing for as long as possible. Under 500 calories a day seems to be her aim, as a general rule. It's awful because she knows this isn't logical/rational and understands she's going to need to eat at some point, but she just can't seem to do it. I don't think she's actively trying to harm herself, and we've talked about the risks, but the ED voice seems to be stronger than any other factors. It's so hard to know what to do for the best 😞

Sounds like our two@PermanentlyExhaustedPigeon80 have been chatting. We are on 24 hours of nothing but water. Think we will be sent to A&E too. She is also not talking to my DH at all now. I'm a teacher so at work this morning but then to the hospital.

Sorry to hear that @littlemissy12345 - it's awful isn't it? DD is still chatting, and quite upbeat really - which is odd. She's a bit shaky now though and says she can feel her heart beating more than normal. So heading off to CAMHS early, so we're at least there if she starts to feel worse. I just keep thinking she's got to eat soon, but no sign so far. Just packed up her lunch to take with us. Maybe she'll eat it in the car as the reality of possibly returning to hospital sinks in? I've now been signed off work for 8 days, which is a relief. Have you considered seeing your GP? It's all encompassing looking after a child with an ED so I think it's totally reasonable to need some time off. My DH is a teacher too though, and I know it's not easy.

Good luck Pigeon and Little Missy. This is the hardest time - when they are physically unwell and the burden of keeping them safe falls to you. I was terrified and very relieved once we got professional intervention.

Thinking of you both and wishing you and your girls well