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!

Thank you all. Camhs intervention team just left, they did obs, noticed pulse irregularity and cold extremities. They couldn't get a BP. They are sending us to A&E to get obs done, most likely an overnight in CDU then onto the psych ward from there most likely although may have a brief return to home if medically stable before going onto the psychiatric ward.

@GrannyRoberts
It's the best place, glad you have been sent. She sounds far too unwell to be at home.

Grannyroberts - so stressful for you all. So sorry. You’re doing amazingly.

my d9 ate a fridge raider chicken piece today! She couldn’t spit it out, as we were in public, so she nibbled tiny pieces and swallowed it with her drink. I’m proud. She’s proud. But she’s lost 3lb this week, just since Sunday. How do I work out her WFH? I’ve done the centile thing.

Oh God hen another 3lbs is not good, how have they left it with your dd? She's another one that sounds like she needs to be in hospital tbh, one small piece of chicken is not enough.

Granny I'm so sorry your dd had to become so ill before they did anything, it's negligence in all honestly.

Please do not take her home, she needs close medical observation.

@Hennups13 I have the calculator lougle linked once on my phone. I can let you know the WFH but need height, weight and rough date of birth (age is one component when calculating WFH, it does not go in weight and height alone). feel free to pm me.

@GrannyRoberts glad they have seen sense! Hope your DD finally gets the help she needs.
@Hennups13 that loss is so worrying. where are you with the medical professionals? She needs urgent help too.

Thank you!! I don’t think her weight is worrying tbh, as she is tall and strong. But she’s skin n bone to me! She’s 10 this month. 144cm tall. 6st 1.

Weight can drop so quickly though. When I first got DC referred, her weight was actually fine, always been a bit skinny.By the time she started proper treatment she was 75%wfh

@Hennups13

I put it in the calculator and she comes back at 110% WFH. Are you sure about the measurements? DD was 84%wfh at that weight (38.5kg) but her height is 160cm so much taller than your DD.

Nonetheless if her weight is dropping fast, I wouldn't take such a WFH as reassuring. DD was admitted at 84% as she suddenly restricted extremely and hear body could cope with the little food that went in even though her WFH was, compared to many others here, not that low. In isolation it doesn't mean a lot! If she keeps eating next to nothing, get her seem. We were told less than 500 cals per day for a couple of days should trigger an a&e visit.

Absolute weight is not the issue. Weight loss, restriction and behaviours are. You can be 'over weight' and have AN.

And 110% wfh is based on a 50th percentile child so half of kids should be over 100% wfh!
100% wfh is a 50th percentile BMI for that height. If your child has tracked at 90% for weight all their life 110% wfh is underweight for them!

Hmmm. Definitely taller than 144. Maybe more like 149/150cm. She’s always been heavy boned. 😂

Oh @Hennups13 that is a lot in a week, please don't ignore it. As I found out, it can snowball so quickly and the further it goes the harder it is to turn back.
DD has now been admitted on medical grounds mainly due to her low heart rate. Her liver and kidney markers are out too and her temperature low (35.4 when we came in). So we're on a medical ward for at least 2 nights for monitoring and fluids then hopefully on to the psych ward from there as the referral is already in place. So glad we've been admitted, but she's already stressing about the.meal plans camhs will be putting in place and how little exercise she's had etc. She's worried that the fluids are "like food" and doesn't want them. Apparently camhs will be coming in to support at mealtimes too. I think the sooner she gets to the psych ward the better. On the plus side I can stay with her as long as she's on this ward and DH and DS can visit whenever they want, which is not the case on the psych ward, so maybe that will be a gentler intro into this all for her.
Thank you all so so much for the advice and handholding over the past few absolutely horrendous days. Still a long long road ahead but at least we're finally being taken seriously and getting the support we've been crying out for.

WWYD? Went to visit DD yesterday. After about an hour she got angry and asked me to leave. (Because I was 'defending' her dad losing it with her in the past when she wouldn't eat). Not unusual - about half of visits end with me being sent away. But she is telling us not to visit today. Not really sure what to do. I want to let the ED know that whatever she says we are NEVER giving up on her - OTOH, I don't want her to feel disrespected or that we dont listen to her. What would you do?

Tricky one nan, I'd be tempted to go and drop some nice bits in (toiletries or a nice card/flowers if that's allowed?) just to show her that you will always be there but respect she might want some space today (and anorexia hates that you love her despite it doing it's best to be horrible to you and dh.)

Yeah, I had lots of arguments and fights with DC, I used to buy flowers and just leave it in her room

That's so hard Nan. My dd doesn't like much interaction. Although she's at home I barely see her. I send messages, memes, photos etc that don't require her to reply so she knows I'm thinking of her.

Flowers are a nice idea. She'll know you've been there and are thinking of her x

I think I'd still be visiting Nan to show the Ed it can't control you too.
@GrannyRoberts I'm glad you've eventually got someone listening to you. That was our biggest battle. Once we got dd into the system things started looking up. She was ignored and ignored them at the first ED appt they did her obs and admitted her immediately. We were extremely much as DD was very compliant in desperation to get out. This worked hugely in our favour.

@Hennups13 where are you up to now?

I know I might borre people who have been on this thread for a long time now, but there is hope. DD became poorly in the first lockdown so around summer 2020. It took until May 2021 to get the right care and a hospital admission. But she's just had a very successful year at Uni and is so happy. It's only when they get to this point that you realise how much they lost their love of life. She now laughs again and doesn't take things as seriously.
Keep holding on xx

@NanFlanders I think I'd probably go anyway just to show that you're not giving up on her. If she doesn't want to see you leave flowers so she knows you've been.

Thank you NCTDN. I'm so pleased your dd is doing so well. Hope is what keeps me going.

@NCTDN Thanks for posting - always great to read posts like this!

Had anyone got experience of fluoxetine for ED sufferers? The doctor mentioned trying it at dd's last appointment.

bagpuss, we are on setraline (been on it only a few months) and cannot say I feel a difference.

Does anyone know what the difference between setraline and fluoxetine is. DD is definitely depressed on top of her ED and I wonder if trying a different one might help.