Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

@GrannyRoberts
Under 50 is low. My daughter's was 46 once in the ED clinic and they recommend to attend a&e if low 40s. The same evening DD's dropped to 35-38 and she was admitted to the HDU via ambulance. I am aghast that GP and a&e dismissed you. What tests did a&e do? standard for AN are bloods, ECG, blood pressure and heart rate. DD was on 800-900 cal when she was admitted and in for about 3 weeks.

If her heart rate is persistenly in the mid 40s, I would go back to a&e. Do you have another a&e nearby.

Also, they do not use BMI for children but WFH (weight for height). It's a complicated formula but it is a better indicator for teens and children.

Granny** I think she needs to be in hospital tbh, you will struggle to get the meal plan with the high calorie foods in at home at this point. Ideally they will start the refeeding for you in hospital which you can then build on once home.

Otherwise you put the smoothie/high calorie food in front of her and wait it out while she goes ballistic.

There is no easy way through it unfortunately, you have to hold onto the belief that she desperately does want to eat/drink what you're giving her but the ED holds a gun to her head telling her not to do it or she'll die.

You have to be stronger than that voice and it's so difficult but you can do it.

A heart rate under 50 is not great and children compensate really well until they literally go into heart failure.

It is shocking you've been fobbed off, just shows the lack of understanding about how deadly anorexia is.

@GrannyRoberts Just seen your update. That is a very low heart rate. Do keep monitoring it - it will fall even lower in the night. My DD 's plan had usually been hospitalisation if her heart rate falls below 45 (sometimes 50).

Emma what support or advice have you been given already?

I think all the parents on here have kids that restrict food but I can't see any reason that FBT wouldn't be useful in BED. So you would take control of all the food your dd eats although I can imagine this will be difficult to police outside of the home.

Has she had any counselling?

Thank you all, I will check her HR again when I go up to bed, although she's asleep now so I'd expect it to be low I guess. She's had bloods done, slightly high B12 and her blood cells are enlarged. GP wants to repeat the test in a few days. It's definitely the ED team that are seeing her on Thursday rather than standard CAMHS so I hope they will do all the tests there and then and rerun the bloods. A&E Dr told my husband he wanted to do an ECG but then he spoke to someone (not sure who) and decided not to after all.
@Girliefriendlikespuppies I think she needs to be in hospital too. I thought she needed to be in hospital weeks ago, but we keep being sent home.
@NanFlanders assume that was resting (but not sleeping) rate? Or was that 45/50 at any point?
Was just using BMI to illustrate that her weight is really very low. I don't know how to calculate WFH but it was.85% 4 weeks ago and she's lost at least 2.5kg since then.

Don't want to sound too cynical and unhelpful but....
Seeing gp to camhs: 3.5 months
Seeing gp to actual treatment 7.5 months
Loss of weight 7.5kg

Granny** she definitely needs the ECG and the fact her bloods are deranged is a really worrying sign.

Have they completed the MEEDs assessment in a&e?

I'd take her back in the morning, go to a different hospital if they turn you away. Honestly you need to kick up a massive fuss, your dd sounds so unwell.

@Girliefriendlikespuppies no I don't think they did MEEDS, but my husband took her and is vague about what they did. They didn't do ECG or bloods at A&E. We spoke to 111 a couple of days ago when she became absolutely hysterical, out of control, because she discovered we'd put cream in her porridge. She had calmed down by the time they phoned us back but the Dr told us to take her to A&E if HR dropped below 50 consistently. We had one reading just there at 47 but then another at 55ish so I'll keep monitoring. It would be a huge relief if she could be admitted. I do feel we're.being fobbed off but we have managed to get bumped up the list by the ED service so hopefully they at least will check her properly.
Have people found that the ED clinic appt provides any kind of catalyst for getting things on track? My DD has always taken instructions better from authority figures who aren't her parents. I know CAMHS won't do the work for us but does seeing the ED team ever help in terms of getting some kind of buy in?

Hi @GrannyRoberts sorry you have found yourself hear.
Your DD is very unwell as you know..another 2.5kg off a WFH 85% in an 11 year old will make it v low (I can work it out roughly if you give me her weight and dob)
Please take her back. There is a MEEDS checklist which they should use. And yes she needs an ECG. Ed teams don't usually do these tests they just order them via hospital or gp so you are just getting ahead of the game..
The jnitsl.meeting usually give you a meal.plan (which are usually shockingly awful and boring)
This mostly.lesds to hysteria and Internet behaviour as the ED sees the lie of the land..
However what it does do is give you as carer a prescribed meal plan and the ability to say repeatedly 'I am sorry this is so hard, but this is what the doctors say you need and it is safe now please eat' or other things along those lines.everby damn time she needs to eat.
The ED never has 'buy in' but it can help the sufferer as it gives them a 'get out' with the ED in their head. 'I have to est this the doctors said so'
So yes it can be a catalyst as it arms you with the medically prescribed treatment.
On an ongoing basis I found the meetings useful for me as a sounding board and outlet but that v much depends on how good your KW is. Mine was fantastic..

Sorry for typos..
In terms of getting her to eat I see you have found Eva! Distraction was my best friend..watched a lot of TV with meals. It did help. And distraction to avoid the pacing. Crafts, TV, jigsaws anything to get her to sit..
It's hard 24/ 7 work

Thanks@Lottsbiffandsmudgethat's helpful. At the moment she won't engage with us on anything or be distracted from her pacing. She doesn't want to do anything. No TV, tablet, phone, art, any of the things she used to enjoy. I know she's really anxious, maybe the ED is kicking off as we're increasingly challenging it, and she just can't settle to anything. I honestly think hospital would be the best place for her.
@Curlyhairedassasin thanks for your earlier advice,.forgot to tag you.

She's had breakfast and is mow running backwards and forwards in the living room. I can't stop her.

At your meeting mention the pacing
Olanzapine could help her. It did my DD.
And yes there will be an almighty battle going on in her head. Which makes it hard to settle.

@GrannyRoberts I would take her back to hospital in the morning. Insist on the MEEDS checklist. If she lost 2.5kg at 85wfh, it will be a lot lower now. In combination with the out of kilter bloods and the low heart rate, it sound like she is very unwell. My daughter's body temp was barely 35 Celsius too which is dangerously too - maybe another thing to check).

is she still attending school? We had to stop when she was under 85%wfh.

I second asking about olanzapine. DD would not eat, not engage, violent, very anxious around food and once we started olanzapine in hospital, she calmed down and was able to engage with the mealplan.

Never heard of olanzapine, thank you I will definitely ask about that. We phoned 111 there, got through to the mental health team, they said go to GP. We're going in circles. Her heart rate was down at 44 last night when she was asleep, 53 this morning when she was sitting at breakfast (the only time she has stopped moving since 6am). I.dont want to take her to A&E to get turned away again as this reinforces her idea that she is well.

Take her to A&e and insist they follow the MEEDs checklist, she scores highly in a lot of areas. Tell them you can not keep her safe at home and that her behaviour is becoming increasingly irrational (pacing/walking/kicking off etc)

Do not be turned away.

I couldn't find the actual checklist but this is to give you an idea of what they should be looking at.

Go to this link https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233
Download Annexe 2
The checklist for emergency depts is page 29
She hits a lot of markers
Please please take her to A&E. This could seriously be life threatening.

Please go today with sharp elbows and refusal to leave until they have done all these checks and had them reviewed by someone who understands AN.

@GrannyRoberts Please do take her back to a&e. She sounds very unwell. Your situation reminds me of us and my DD 2 months ago. We hit rock bottom really fast. If it wasn't for all the good advice and handholding here I am not sure what would have happened. She needs urgent assessment, ECG, bloods and this is nothing that can wait for a few weeks until appointments kick in. Please take her to hospital to get her checked over.

DD was still walking around, shouting, kicking and looked well on the outside - she was put after tests into the HDU as she was so seriously unwell. You would have never guessed it. With AN, things can go wrong very quickly. My understanding is that the starving causes an electrolyte imbalance (hence urgent bloods for those) which can have devastating cardiac effects (therefore the ECG and blood pressure, heart rate checks). Do not wait!

Thanks all, we're at GP now and will see what they say. I will be clear that we cant keep her safe at home. If he doesn't take us seriously we'll go to A&E. I hope he will send us there anyway. She's lost herself, will only shout "no" or "shut up". She's smashed and broken several pieces of furniture this morning. She's pacing round the waiting room. I can't stop her. And yet she got dressed and got in the car to come here. She wants help, I know she does.

Yes it sounds promising that she's at the doctor willingly Granny. She sounds so poorly. I hope you are getting the help you need today

Oh bless her granny good luck I hope you're getting the help she needs.

How did it go @GrannyRoberts ? Hoping you got some help for your dd

GP took blood pressure and heart rate (62).and told me to keep going until the CAMHS appointment on Thursday. Got home and phoned CAMHS and they asked loads of questions and told me the things to look out for, but said we don't need A&E now as they will do all her obs on Thursday. So far I haven't taken her. She has eaten a good dinner and is calmer just now. Her heart rate is up at 62 ish now. I'm keeping a close eye on things. The GP had done electrolytes 2 weeks ago and they were fine. So I'm feeling a little less panicked right now. But still very worried. Thank you all so much for your support. I hope you have all had better days than me. I will update as soon as I have anything new.