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

[Curlyhairedassasin]

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

Hi everyone, first time posting in this thread. 😞

Sorry to hear @littlemissy12345 and @PermanentlyExhaustedPigeon80 that your girls are so unwell.

I was just wondering what all your triggers are for your kids needing medical attention.
DD's eating disorder has been around for a while but has been stable and pretty manageable, but has rapidly worsened in the last 2 months or so, so this is a whole new world for me.

She will be seeing her psychiatrist in 2 days so I'll be interested to see what he says and if he can give us some guidelines. But I'm really just a bit clueless as to what is a 'continue doing what you're doing at home' situation, what is a 'see your GP in the next day or 2 situation', and what is a 'go to the emergency department' situation.

I know things can go downhill and be life threatening very quickly, so it's just stressing me out a bit.

Any tips?
FYI I'm not in the UK.

@wandawaves for us, getting medical attention (as opposed to 'just' seeing the ED team) were triggered by severe restrictions. First time we started going to a&e when she restricted heavily and had 2 days less than 500 cals. second time she announced on a Sunday, that should would not eat again. Monday morning we were at a&e. Also look out of physical signs. Dizziness should ring alarm bells. You can take the heart rate yourself. anything under 40BPM I would get seen (don't take a 'normal' heart rate as reassurance that all is well but a drop under 40 is a big red flag. Coldness. DD felt cold on her first admission. Her temp was just about 35 and they put her under a special blanket do warm her up). Also severe fluid restrictions.

Thanks @Shanghai101 - I felt relieved when she was admitted on This, and then very anxious when she was discharged on Saturday. CAMHS have sent us home this afternoon to 'keep trying' as her blood pressure and pulse were okay. She's lost weight since last Thursday though. No food now for nearly 2 full days and DD has already told me it doesn't matter what I cook for dinner because she won't eat it. CAMHS said A&E wouldn't do anything unless issues with blood pressure or pulse - is that right? Surely they're not the only indicators of a crisis? Feeling really conflicted now as my instinct is to take her to hospital but CAMHS Case Worker (Mental Health Nurse) said try to manage at home and then bring her in for planned appointment at 11 tomorrow. DD has taken this to mean she's fine and we should just leave her alone. I'm climbing the walls with anxiety and completely confused about what to do for the best 😰

@PermanentlyExhaustedPigeon80 Why oh why do some 'services' always insist your children get to the point of becoming critically ill?

I would pack a bag, go to hospital and make it clear that you cannot keep her save and refuse to take her home. Also BP is only one of the many checks. She will need bloods and ECG. I would ignore the camhs worker. Is this a specialist ED service? I think they are giving poor advice. It's pretty obvious that the ED has total control over her abs that she isn't just able to start eating again. And she will become very ill. I wouldn't wait.

I agree with Curly. No food for two days is a red flag. I would take her to A&E and tell them what she said about her heart. They can do an ECG and bloods and give her a drip if needed. It is important though that they don’t give her a message that everything is fine and Mum is catastrophising. Please try to speak to them out of your daughter’s earshot as they may not understand EDs.
I can only assume that CAMHS gave you the advice they did because her weight is not critically low. They should know that only 6-15% of people with eating disorders are very underweight. It is shocking that our kids have to become emaciated before they get effective help.

@wandawaves same as Curly, severe restriction prompted us to go to A&E. Likewise, dizziness and heart palpitations. I think if you feel that anything is off and she hasn’t been eating properly then you should take her for obvs. Nobody will ever criticise you for doing that as young people can appear remarkably well right up until the point of collapse.

it is a huge burden of responsibility.

@PermanentlyExhaustedPigeon80 CAMHS emergency line seemed to discourage us from calling an ambulance when our DD wouldn't go to A&E following 3 days with no food, as her heart rate was fine. When we finally got her to her regular appointment, she was very ill and the medic really told us off for not calling one.

Thank you all, again @PermanentlyExhaustedPigeon80it seems like we are on the same course. We had our weekly session today and DD has lost weight again. But her BP and pulse rate are better than last week. She is at 24 hours of no eating now. They are phoning tomorrow to make a judgement. Still trying to get her to eat but getting a blanket no each time. I'm so lost on what to try.

I have been exactly where you both are right now. I’m trying to word what I might say to my dd now that I know more about the sorts of things to say to get around the ED… and PDA as dd likely has that as well and possible autism.

‘Sweetheart, you’re shaky and cold. Your body needs fuel to function and you haven’t had anything for more than 24 hours. I get it’s hard and I’m only saying this because I love you and because it is important to take care of your body and because I know you want to be able to do x y z (nice thing(s)). And I’m going to have to take you to A&E / call an ambulance very soon unless this changes.’

You may not be able to say this all in one go. Above all staying calm is essential as the ED loves chaos as it can use this to avoid eating. Then give a little space, maybe 30 mins to see if this elicits a change. Idk if even this would have got through to my dd. If suggestions for food work, ‘I was thinking perhaps x or maybe y. Which one would you prefer?’ You may get a neither. You could try taking a selection to her room or suggest she comes down to take a look at what you have in the kitchen.

Idk if you’ve realised btw. I’m trying to avoid words like food and eating. I don’t talk calories with dd either. She’s never talked about them to me so I don’t want to alert her to anything not on her radar.

Wishing you well hope you can find a way through xxxx

I am a reader and found Hadley Freemans book “Good Girls” interesting she had AN herself. She’s not everyone’s cup of tea but Caitlin Moran went through this too with her daughter which she documents in her most recent book. I found reading these helpful and relatable.

Thank you @Curlyhairedassasin and @Shanghai101 .
Gosh it sounds like i should've been taking her to emergency a few times in the last couple of weeks, now I feel terrible. 😞
She fainted on Monday, told me on Tuesday. She's very weak and fatigued. Nauseated, vomiting (non intentional). Brain fog.
I took her to the medical centre as soon as she told me. Our regular GP was all booked out. Medical centre GP's are absolute rubbish, and he pretty much said nothing at all, but agreed to her request of an ECG and bloods. ECG "could be better but wasn't too bad", whatever that means. BP was a little low but not too bad, heartrate was ok. Bloods should be back today. The faint gave her a bit of a fright so I have managed to get a tiny bit more food into her since, and an electrolyte iceblock (just one unfortunately).
She is seeing our GP today, psychiatrist tomorrow. I'm very keen to see what the psychiatrist says, as she has never been this bad before, and he's been off holidaying overseas the whole period of which she's gotten worse, so I haven't even been able to contact him to try and get an earlier appointment.

Don’t beat yourself up @wandawaves what you don’t know, you don’t know. My dd should have been hospitalised at one stage and I had no idea how dangerous that was. Due to a medical condition, where her heart stops beating, I actively tried to keep her away from A&E as it was a trip to A&E that triggered a period of extreme restriction (following from an already heavily restricted intake) going a day without food then eating 200 calories the next, which lasted a fortnight. Dd came out of that ok. She has a long way to go still. But she’s getting there slowly. I try not to think about that time too much.

I meant to add, I hope it goes well with the GP and psychiatrist. And that they can get her to eat more.

We are now at 46 hours with only water. DD is adamant she won't eat until she is in hospital. But CAMHS won't send her, waiting for them to call back but I'm so worried, no food at all after 5 months of severe restrictive eating. She's disappearing in front of my eyes.

@littlemissy12345 when do you see Camhs again? I would just take her to a&e and go. You do not need permission from camhs to seek medical attention.

She's just stood up and fainted so phoned an ambulance. She's conscious and fine but that's enough of this.

You did the right thing @littlemissy12345 she needs help from ED specialists. Thinking of you

It could be that she needs the hospital doctors to tell her to eat I.e. she has no choice, in her disordered thinking, she can rationalise with the ED thoughts/voice

@littlemissy12345 hope you are in hospital now. It's the safest place. Things will get better from here even if it doesn't feel that way.

Thanks so much all for the advice and solidarity. We're back in hospital, on a ward. DD seems okay, although had a fainting episode in the night. No worrying test results so far, which is obviously good but somewhat surprising. She's now eating an apple! I'm obviously delighted but also incredibly frustrated. Why will she eat in hospital but not at home?? Nobody has come to speak to us yet, and I get the distinct impression they don't really understand why we need to be here. It's so horrible to feel like we can't keep her safe at home. I just don't know what to do.

How is your DD @littlemissy12345? Sorry to hear you had to call an ambulance, but I hope you're now getting some good support. Definitely sounds like hospital is the right place for her right now. How are you doing? I'm a bit of a mess tbh - going from high anxiety to hospital limbo is very tough. Not sure how much more of this I can take. Although realise I have no choice.

Is this a thing? Helpful to know if it's a common experience, as I feel like I'm going mad. Refuses even a bite of food at home, then complies with just a bit of encouragement in hospital 🤷🏻‍♀️🤷🏻‍♀️

@PermanentlyExhaustedPigeon80 It is definitely 'a thing'. My DD would go to hospital and have an NG because then 'it wasn't her fault'.

Oh my goodness @littlemissy12345 , how terrifying. She's in the right place though.

@PermanentlyExhaustedPigeon80 I hope you manage to get some help in hospital too.

I’m afraid it is a thing Pigeon. They may need a higher authority to tell them what they need to get better I.e. to stick to the meal plan. It is very important, therefore, that the higher authority is an ED specialist as saying the wrong thing can feed in to the disordered thinking and strengthen the ED voice. TBH even when my DD was getting great advice she only heard what she wanted to hear. It was immensely frustrating and worrying.
My DD said that she could never have eaten at home like she did in the unit. She said that she kind of blacked out when eating in the early days but ate because she knew she had no choice.
Reading New Maudsley resources helped me immensely at this stage.

Thank you. So blood results are fine apparently. I honestly have no idea how... when she does eat her tiny amounts, it's never nutritious food! She's been refusing her multivitamin for at least 6 months too. GP was concerned but didn't think she needed hospital today. But told her to listen to her body- if she's dizzy, weak, fainting, heart palpitations- she needs to go to hospital. I'll keep a closer eye on her BP and pulse too.

Psychiatrist tomorrow. Then we'll make a plan. I've cooked one of her favourite dinners so when she gets home she will hopefully eat some.

Glad your DD's blood results were fine @wandawaves - that's a relief. Same here. Numbers all okay, somehow!!

We've been sent home again because it's not 'medically necessary' for her to be on an acute ward. I understand the reasoning but she's only just had breakfast and lunch for the first time since Monday, and I'm so worried she'll stop again when we get home. We've got CAMHS ED appointments weekly now for 3 weeks, then another review. Sounds like our job is just to keep trying to get her to eat something every day, drink plenty of fluids, and keep her out of hospital so she can access therapy. There's no way she's going to follow the meal plan they've given us for 1800-2000 calories a day, so I guess we just have to go with something is better than nothing for the time being, until she's a bit more stable.

The Paediatric Consultant we saw thought the dizziness was caused by anxiety rather than under eating, which seemed a bit odd. Also suggested 'hunger strike' was a form of self harm rather than a classic ED. I felt they were really minimising the numerous ED symptoms and trying to pin everything on mental health / ND. Those are definitely factors, but I'm still convinced she has an ED as well. I think DD came away from the conversation feeling she needed to try harder as she's not thin enough to be considered at risk to the specialists 😕

Hope you and your DD are okay @littlemissy12345