Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Curly I'm sorry your dh is being a dick, in some ways if he does leave you that might make life a bit simpler. You would definitely be eligible for lots of financial support then. I'm a single parent and I think the consistency of just one person making the decisions was less stressful than arguing with someone about them.

The ED service should send the request through to your dr surgery, usually GP surgery's do kids bloods? They've always done my dds anyway. I'd ring your dds Gp and discuss with them, yes it's very urgent as there's lots of things that can be deranged and you wouldn't know until your dd has collapsed.

@Curlyhairedassasin I am so sorry this is so tough. My heart is breaking for what you are having to deal with..
She is losing an lotnof weight a week. She needs bloods and an ECG. Three ways to get them I guess: GP but now closed for weekend; ED actually follow through on their referral.; go to A and E.
I understand the logistical issues and that a trip to hospital may feel impossible. But I honestly think you must go somehow..
Your DH is still there at the moment? Can DD1 be left with him for as long as it takes today?
Anything could be going on with her heart. She is 12. My DD was 12. When we had her ECG (and we got the results reviewed by the consultant attached to our ED unit which took weeks as the GP told us all was OK even though it wasn't another reason why hospital is a better place to have the ECG done) she had a long QT phase and she could have literally dropped dead at any time. We did not know and she was regularly exercising..which would have made it more likely.
Please get her checked out. Have you any family even a way away who could come and stay with DD1. Or a friend?
I really hope her bloods and ECG are normal but you can't always tell by looking..
She is 12. A child. She is in real danger. Please take her to hospital.
Show you DH this. She is his child. He needs to step up..

I'm so sorry @Curlyhairedassasin but I agree with the above. She needs checking ASAP. Refuse to leave a&e until they've done them. If your dd kicks off then good, you've more chance of being noticed.
Does your other dc qualify for respite care at all? I know it's hard and you don't want to just drop them, but just trying to think what's manageable.

Thanks all. My order child is this weekend on an organised trip so it's a good opportunity to attend a&e. I thought it is an overkill.

If she refused food and drinks this morning, we are off. Thanks so so much for all the support..

I'd go even if she doesn't refuse whilst you have the chance.

I want to take her but she is violently attacking me. I cannot get her into the car. what do I do.

DH has gone. No idea where. I cannot get her into the car

@Curlyhairedassasin I'm so sorry reading what you are going through. I don't think it's overkill to call for an ambulance in this situation as she's desperately ill and attacking you which is hampering your ability to respond.

I've called 111 before with DD and been told to go straight to a&e, if you call and tell them the situation they may call the ambulance for you.

I would scream and shout now (metaphorically) at the authorities as you need intervention and a higher level of support right now

Curlyhairedassasin You are very justified in calling an ambulance in this situation. You dd sounds very poorly. Sending you love.

Yes get an ambulance.

Ring 999, ask for police and ambulance.

I'm so sorry curly.

Ok, rang 999 and spoke to ambulance. whilst on the call, she agreed for me to take her in.

en route to a&e she pleaded with me to take her somewhere for breakfast instead of a&e. Took her to a cafe and she just had 2 big pieces of toast with 2 eggs and a cup of tea. This is the biggest meal in ages.

Can someone explain me what is going on? Is this me being louder than the anorexic voice? I am just bewildered.

Yes you've followed through on a threat and she's seen you won't be bullied by the ED.

However you still need to go to a&e, she needs bloods, she could be at serious risk of refeeding syndrome which can be fatal.

@Curlyhairedassasin here is the link to current guidelines for front line staff. Scroll to page 30. This is the list of what they should look at and warning makers. You can see losing 1kg a week for 2 weeks or more and eating less than 500 kcals a day for 2 days or more are red risks..they should take you seriously. Be prepared to make a fuss if not. Have the link open or better still print pages 30 to 34 off. They should do an ECG, bloods, BP, postural drop etc in line with these guidelines. Don't leave until she is assessed properly.
https://www.rcpsych.ac.uk/docs/default-source/improving-care/better-mh-policy/college-reports/college-report-cr233-medical-emergencies-in-eating-disorders-(meed)-guidance.pdf?sfvrsn=2d327483_50

Sorry I massively cross posted! I would still go to A&E. The ED is trying to prevent you getting her proper help by appeasing you this time. It won't last and in any event she still needs those tests ASAP..

Thank you for the link.

Thanks girlie, we just got back home. Will see if she is having lunch later and if not set off again.

I never heard about "refeeding syndrome" - googling that now.

Curlyhairedassasin

You fought the ED well by taking her to hospital that has got her eating which is good as it gives you some future leverage. Hopefully this is the thing that will enable you to gain control. I would keep the momentum going and offer the same breakfast daily.

However she still needs to be seen as she's been restricting quite drastically for a while. One decent meal won't reverse any damage.

The fb group EDSUK might be useful for you curly, they are militant in their approach to FBT though just to pre warn you!

As Lots said the ED is still trying to control the situation by eating enough to get you to back off and prevent access to medical care. Anorexia is very like an abusive relationship in that it tells the sufferer all sorts of lies to keep them under its spell, isolates them from every one who loves them, prevents access to anything that they enjoy, gaslights everyone at every opportunity and will seriously hurt the ones trying to rescue their victim.

Your dd needs the above checks Lots linked, and I suspect your dd needs admission to hospital to get the refeeding plan initiated under medical supervision.

Refeeding is very dangerous @Curlyhairedassasin - its essentially when your body is all out of whack through starvation/malnutrition and then eating something 'normal' could trigger a fatal response - stroke/cardiac failure/organ shutdown. Its why supervised re-feeding/meal plans increase intake day by day and obs are taken 4hrly in hospital so they can monitor immediate changes

Risk of re-feeding was what led to my Dd's immediate admission to hospital at her first CAMHS appt - I had been pleased that she had seemed to eat well the night before - had no idea it could have killed her 😥

Please do get her to A&E (also, I know this is probably a lot coming at you now so I can imagine your heads a bit of a whirl)

I find it all so confusing. the breakfast we had was actually in line with the (very ambitious) feeding plan we are on. It contains a good breakfast, snack, big lunch, snack and a full dinner. Why would they give us this plan and tell us to try to stick to it over the weekend (we are having a review with the leader of the local CEDS service on Monday) even though they knew she has been heavily restricting and losing weight for the last 2 weeks at ca 1kg/week.

in a&e now, getting bloods and ecg done. thanks for all your encouragement. I wouldn't have had the balls to bring her down otherwise.

Curlyhairedassasin

Well done to you both for getting to A&E. I hope you're getting the help you need.

Good luck curly don't be afraid to demand she's admitted if you aren't happy that she will comply with the meal plan at home.

Great news curly I hope all is well..but she is v unwell. Don't let them discharge you it you do not think you can manage the meal.plan at home...

Well done for being strong enough to go through with it.

back from a&e. Tests all ok but we have open access over the weekend. They couldn't admit her (could not make sense why not though)

We got home and she went berserk when I gave her food and so did DH - with me. He doesn't see the issue. Accused me of suffering from Munchausen by proxy and being an attention seeker.

It's impossible to feed her at home as she always runs to her dad who tells her it is ok to make her own choices. and accused me of abuse by taking her to hospital. I guess he thinks she will just snap out of it.

It just feels like an impossible task atm...

I am a lot calmer though then yest. We have the review at the clinic on Monday with the head doc there instead of the nurse so hope we can put something on place there and then.