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

[Curlyhairedassasin]

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

I hope everyone has managed to have a peaceful Christmas 🎄

Happy Christmas Everyone. I’m hoping Santa brought a very large sprinkling of fairy dust for all our kids still in the grip of Eating Disorders. Xx

Hoping yesterday wasn't too awful for those still in the trenches of this horrendous illness, I was thinking of you all and remembering the year dd was very ill. That Christmas I found half her selection box stuffed in various places (including down her trousers!) and had a complete standoff over a mouthful of orange juice 🫤

This year was (almost) normal and we both sat and watched Gavin and Stacey last night munching on sweets and Pringles.

There is always hope and your children can and will recover, all of you mums are warriors and absolutely amazing 😘

I’ve watched this thread for a while. Christmas is hard though. Last year My daughter was in hospital but came home for a few days and was eating, pleased to be back. This year it feels much more hopeless. She’s been at home for a few months but weighs less than last Christmas and eats only meal replacements. She couldn’t join in with Christmas activities. It is heartbreaking. Sending love to all parents caring for their children at this time.

We’re at A&E with AN DD13. She’s just stopped eating almost entirely and there is nothing I can do to change it. We were at CAMHS and she vomited with anxiety in front of the doctor and wouldn’t get on the scales. She was tachycardic and her blood pressure was worryingly low. He has sent us here for bloods and an ECG. She’s fallen from 90% to 86% WFH in a week.

I don’t know what happens next.

@JoyousCyanCat You are in the best place. If her obs at A&E come back ok-ish, please refuse to take her home unless you have a means of getting her to eat. Chances are she will be admitted. DD started to eat again after an emergency admission 18 months ago. They alternative would have been tube feeding in hospital (and the sheer fear made her eat). Has anyone mentioned olanzapine. It's am antipsychotic drug which is used in low doses to deal with the intense anxiety around eating. It was instrumental to get DD to eat after hear admission (though 18 months on we ate still not recovered and DD's intake is still very restrictive but enough to maintain her at about 85-87%wfh). Let us know how you get on. and don't let hospital bamboozle you into taking her home.

Managed to negotiate DD being allowed home for Christmas Eve and wake up at home Christmas morning.
Was an absolute nightmare to be honest.
She spent the whole of Christmas Eve night crying and trying to harm herself, slept for about 2 hours and then went upstairs and came down dripping with blood from her arms.
I’ve never had a more stressful Christmas. ‘D’H and I barely spoke the whole day, I was absolutely shattered and couldn’t leave her unsupervised at all but trying to maintain a degree of normality for my other children.

Took her back to hospital in the evening and she and I cried the whole way there and saying goodbye was awful and then they decided to Ng feed her (after saying they would skip it as she was back late) which sent her into the worst panic and distress and so she was crying on the phone to me for the rest of the night.

Thinking of everyone coping with this too and sending you hugs,

The doctor here is lovely. I’ve said I’m very worried about taking DD home knowing I have no influence over eating and that her calories are so restricted. She says she understands and that she can see how difficult things are.

This sounds beyond awful. I’m so sorry.

Xmas Day itself went well as far as DD’s food intake goes only issue was mil making unnecessary comments. Dd even requested a high calorie dish. Everyone at ours got to make a request for one thing they’d like to have on the Day. DD even had some leftovers Boxing Day.
She has both grown and lost weight over multiple weigh ins so I am concerned. She’s at a safe wfh but noticeably jumping down percentiles for weight

@IWantToBeADCC Really sorry to hear that dd has been so distressed at home and DH has not been supportive. Your DH is making a stressful and distressing situation all the more isolating.
how has your dd been since she’s been back in hospital? 💐

I really hope you get somewhere for your dd @JoyousCyanCat, she is in the right place and I'm glad the doctor is so kind.

I’m sorry that your dd’s Christmas Day was difficult @IWantToBeADCC . It sounds as though your dd was really overwhelmed. Despite how it went, especially on returning to hospital, I really hope she had a good day with you. And you with her.

Christmas Day here was bizarre. Dd started eating like it was any other day. Then when her cousin arrived, she suddenly switched and ate as if she didn’t have an ED… apart from being veggie. So she had a really big lunch, which is unheard of then grazed on Quality Street and crisps on and off all afternoon and evening and had a light dinner, eating a veggie pie that I bought a couple of months ago to try and she’d refused. She basically didn’t stop eating, a bit of a binge really and I didn’t know what to do/ say. Then yesterday she woke up with stomach cramps, didn’t eat all day until dinner when she ate a pack of Belvita and a few crisps. She’s not eating normally today yet and I’m hoping things will look up from tomorrow. She’s just arrived in France with dh for the week to give me a break. I’m really hoping he will keep things on track as I have been solely in charge of FBT and he’s got an added complication that the supermarkets and service stations don’t seem to do egg/veggie sandwiches.

She was calmer yesterday and I picked her up and we went to the local pantomime which we try and do every every year. I took her back at 12:30am as she decided it was too tricky to stay at home overnight again.

This admission (4th time inpatient) has definitely been the worst so far for her and me. The self harming is off the scale.

@IWantToBeADCC Gosh, that sounds all extremely stressful!
@JoyousCyanCat Hope DD has been given a bed .

We muddled through Xmas with DD eating crappy food. I love food and so does DD1 and it just takes so much joy out of it. It was our 3rd AN Xmas.

DH has now, in good old tradition buggered off again on one of his solo holidays and I am stuck with both girls alone at home once again. But it's just a few day. we did 6 weeks over the summer, we can cope 6 days.

DD has been admitted for re-feeding. It’s a 7 day plan increasing by 200 calories a day. It’s going to be enormous quantities by the end of the week. I can’t imagine it being successful, but I’ll be thrilled if it is.

@JoyousCyanCat Glad you are getting some help. Hope this turns it around for your DD.

I still lurk on these threads and am sending you all lots of love. I remember the Christmas (2020 I think)we negotiated way out of a hospital admission on the grounds we were near expert level at managing re feeding. I also remember the amazing Camhs woman who volunteered to be on call to help us if we needed her at all - she was a fab no nonsense Scottish woman who DD almost felt obliged to listen to!
Dd (now nearly 22!) has been through a wobble and am still not sure she’s out of it but she’s arrested the decline. She’s starting therapy in Feb to help her understand/acknowledge what is happening so she can proactively manage the ED. That’s not to say she’s in full on ED grip now but I do think it’s her go to perspective with stress etc if that makes sense. Hopefully the therapy will help her identify the tools she needs to swerve it more often than not as she progresses through adulthood.

it breaks my heart reading what everyone goes through on this thread, but it also gladdens me to know there’s a little space where people really get it.

keep on keeping on xx

After a break back on this thread under a different name. Dd was diagnosed with anorexia but actually started off with, binging, followed by purging. Her purging became so bad she started losing weight and was diagnosed with AN.

Dd was discharged from camhs in the summer and was doing reasonably well.
Started uni in September. A lot of struggle to get support through dsa. Which added to her stress.
Currently at home and I'm aware she is binging. Possibly purging??

Not sure what to do. I encouraged her to contact disability services who already know her because of the AN.
I know she won't do this, and also doesn't want me to contact them.

Bit at a loss what to do.

Added to the obvious negative effects of all this i am extra worried as she also binged on multivitamin gummies (a full bottle of 60 in under 10 days)

Thank you for your support last week everyone. DD has complied 100% with her meal plan, despite great distress, and the plan is for discharge tomorrow. She’s been referred to the Arc in Chelsea for day hospital, in the hope that it means she can stay at home rather than be an inpatient. Has anyone had any experience of it?

Just wanted to say Happy New Year to everyone and to keep the hope.
For those whose kids are struggling again I would say that that is considered perfectly normal. In fact, I was told to be suspicious of recovery that didn’t involve relapse.
Sending wishes for better times ahead for all of us in 2025

@JoyousCyanCat well done to DD for complying with her meal plan. I have no experience of Arc but I had a Google and it sounds great and much better for her to be able to come home at night. My advice would be to be as involved as you can so that you can support her at home as I’m sure it will be tough on all of you, particularly in the early days.
if she is home for all meals at weekends then make sure that they discuss the meal plan with you and DD and that DD knows that it is non negotiable. My DD was in a day unit but always compensated for increases there with reductions at home, which was frustrating.

Happy (well it’s not but, you know) New Year everyone.

DD was allowed home NYE, she went for a shower and came downstairs to tell me she was ok. Five minutes later, another of my children came down to say she was crying in her en-suite.

Went up there and she was on the floor sobbing, siting in a pool of blood which was dripping copiously from both arms. I didn’t even know where to begin, her pyjamas were saturated, her feet were covered in blood. She said it’s seeing her body in the shower that she can’t cope with. She’s medicated to the max to try and help so at a loss as to what to do.
I think at hospital she just freshens up with baby wipes as much as she can just to avoid being naked.

@IWantToBeADCC I’m so sorry to hear that.

When self harm escalated for my daughter, I sat outside the bathroom with the door ajar. That was what happened in hospital so she accepted it. Eventually though SH escalated such that she stopped coming home for a while (3-4 months). That was hard but we couldn’t keep her safe at home. I think the most important thing for us was keeping talking to her treatment team about what happened when she was at home.

@IWantToBeADCC So sorry to hear this. DD is SH too but the wounds tend to be superficial. Do you think you can keep her safe at home? We have everything locked away and DD still finds ways to cut herself. We can minimise risks at home, but not eliminate them. We are medicated too but with limited effects. Do you know what is driving the SH? We got (to some extend) to the bottom of DD's with Camhs and various strategies.

So sorry to read how distressed your DD is @IWantToBeADCC. That must have been terrifying for both of you. OT advised my DD to shower with the lights off. She doesn’t SH but finds weight gain so difficult and will restrict again. Removing or covering mirrors are all strategies we use to try to minimise distress. And telling her how hard this must be for her and that you are so sorry that this is happening to her and that you know she didn’t choose it. X