Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

So the ED team are now arranging an assessment with an EDU in Manchester (other side of the country for us!?)… most likely she’ll be admitted. If she refuses, they said she could be sectioned. I’ve just broken the news to Dd and all hell broke loose… crying and refusing to talk to me now. I feel so sorry for her, I don’t know what the best option is. She has ASD so I understand her fear of staying away from home. Has anyone else had a similar experience? If so would long-term inpatient be detrimental to someone neurodivergent? I just need a break from it all, I feel everything I do starts another argument and makes things worse for us.
@Shanghai101 I’ve looked into private therapy but Dd had been hesitant to start. To be honest at this point she sees no point in starting anything, she just stays in bed most of the day…

Could this be an opportunity to get a meal plan started? To start recovery they have to want something more than they want to hold onto the illness. Of course it would need to be done under dietetic and psychiatric supervision possibly with daily blood tests.
You are correct in thinking that hospital will be harder for somebody with neuro divergence. And I believe the advice is to try to keep them out of hospital if possible. However, if nothing else has worked then she may need to go to hospital to kickstart the recovery process. Wherever she goes should be familiar with the Peace pathway for treating ND individuals. Having autism will make recovering a slower process due to the rigidity of thinking but full recovery is still possible. When you have your meeting ask if there is any possibility of treatment at home i.e. somebody comes to your house at meal times to support you with cooking and will sit with her while she eats. If there is no day unit near you then there may be an option for some home support.

Where are you based? My clinic talked about an admission but often they are far from home and they are trying to advise against it - I have mixed feelings - my local hospital where she is at is down the road and can visit anytime....but at the same time we need them better
How are things today?

Morning, we’re in the south east, so no other EDU nearby I don’t think. Dd was devastated yesterday and no better this morning, I really don’t think she’d engage with an inpatient unit (though I feel I should go ahead with the assessment anyway? She has already said she won’t speak to them…) There is a day centre about an hour away from us, but we’ve been told her weight is too low to attend there (so too sick for treatment but not sick enough for hospital?!). It just feels like anorexia is getting just what it wants by avoiding hospital admission and staying where we are. I’m going to suggest we make a meal plan starting today. She said she might manage increasing to 600 cals. Still virtually nothing but better than where we’ve been recently. Thank you for the advice again, it’s reassuring to know I’m not alone in this.

We are also south east and have been told the clinics are very far away but I'm trying my best to avoid

So far she's refusing to eat in hospital 😩so she's getting by with fortini drinks but surely that can't carry on for long? Hopefully find out a plan - at least she work be discharged anytime soon which is what one doctor was indicating!

X

You should definitely go ahead with the assessment. If she’s too sick for a day unit then she will be admitted to hospital unless you can get some serious support at home. Refeeding is a risk and she must be monitored closely by professionals.
If she refuses admission to hospital and is unwell enough then she will be sectioned. Getting to this point may be necessary to get her to engage with services. Maybe that is the leverage you need to get her to engage with the meal plan and stay out of hospital. But not everyone can do that and she may need more intensive treatment. My DD has needed a lot of therapy to understand herself and the reasons why she restricts. Good luck Lyriccat. This is a terrifying time for both of you but thankfully help is on the way and she is being monitored. X

Is anyone else’s relationship/marriage on the rocks due to the added stress of the ED? He’s been undermining me so much lately in front of DC regarding the eating disorder, the meal plan and also in general .
He said he’d supervise breakfast yesterday to let me sleep and he didn’t bother getting up until after her breakfast cut off when I went into the spare room to wake him. Then for lunch he caved to DD who only wanted a savoury item which counts as a snack for lunch. The dietician is quite clear about what she needs to have for lunch and the quantities of each of the food groups needed. when I spoke up about it, I am the one that’s in the wrong. Never runaway in my life but really felt like doing a runner last night and leaving them to it.

I'm so sorry to hear this ! It sounds as if you're not getting the support you need.
Yes it's added stress and I don't think my DH fully understand this as much as I do but it really does stand out that you need way more support. You can't do this on your own
It sounds like he's undoing all the good work
Of course it's easy to give in which sounds like he did but that's not ok
Sending hugs

Honestly the only reason your dd is upset is because the ED is rattled, don't feel sorry for the ED - it wants to kill your dd!! I would grab the assessment with both hands and push for your dd to be sectioned if she refuses to go.

She is so ill and her at that low weight could collapse/die at any moment.

For some teens they have to get to this point before they can recover, how can being an inpatient be worse?!

600 calories is a drop in the ocean to what she needs, her risk of refeeding syndrome will be massive as will the chance she'll go into hyper metabolism once the food does start to go in.

She needs more than what you can give her at home and you need to be very straight with her about that. Her anorexia is life threatening and this is what is required to save her life.

Many have said on here before that with providing food we are providing medicine so in the same way we wouldn't skip a dose of medication for another physical illness e.g cancer, even though the child protests, we need to be the firm adult and take charge. I say this as someone who very much had to learn this and get to grips with the high distress that this created. Would that help your DH understand @Cantfindthewordsddstruggling ?

Can someone tell me that if my DD is still refusing food but is given fortini, how long can this go on before any intervention? Does anyone know that has been in this situation?

She's been restricting eating for weeks but is on her 2nd hospital admission

You’re right @Girliefriendlikespuppies and the assessment has been scheduled for Tuesday. DD says she won’t talk but I hope I’ll still be able to provide enough information myself (with DH). Despite making a meal plan this morning, she’s only had about 100 calories so far today (a bowl of grapes and two bites of a sandwich). I’m so scared for her. I’m not letting her do anything physical, she’s only getting up to use the loo.

@Cantfindthewordsddstruggling definitely felt the strain with my DH too. A lot of arguments and blame over the past few years which have driven our family apart, all due to anorexia. What overall works for us is DH leaving the caregiving to me as he works full-time. It’s certainly not easy but better to cope with than when DD was first diagnosed and we both tried implementing FBT together.

@summertimessadness24 wish I could give you advice, but here for support and solidarity.

Are the fortisips more calories than the meal she is substituting it for? You need your ED team to come up with a plan, for some kids they do have a period of time just drinking the supplements, as long as they are getting the calories and weight gain it's not the end of the world. Generally they do eventually get sick of them and start eating again.

Lyriccat id go back to a&e with her, I'm honestly scared your dd is going to go into heart failure at any minute, Nikki Graham was around the weight your dd is when she died 😢 your dd should be in hospital having constant monitoring.

@lyriccat

i am south east too. My DD16 was 68% when admitted as a day patient to an CAMHS/ED unit……she comes home at night. They monitor her vitals every day and can admit her to hospital at any point if they need to. I was told that below 70% WFH is when they admit to hospital. At 68% her heart rate and blood pressure was so low, she was at risk of death.

@lyriccat Is the Manchester placement at the Priory Altrincham? If so, my DD (also neurodivergent) was there. If you drop me a DM, we could chat? Admission was very traumatic for her, but she was so ill it was the only way to keep her safe. N.B.She is out now and doing well.

@lyriccat how has today been? Any doubt please take her to a&e. my DD was placed initially into the HDU when admitted as she was physically so unwell. Heart rate dropped, abnormal ECG, very low body temp and blood pressure. her WFH was over 80% at that point and she ate 500-600 cals daily. I would be really scared for my DD with the weight and intake you describe.

Hello, bit of an update... so we ended up going back to a&e last night as she refused dinner completely (she usually manages soup at least). Blood tests taken and sitting/standing obs, all still fine except low glucose. The nurse also mentioned DD had a keto-breath smell (?) so thought she should have a meal before being sent home to raise glucose levels. DD was offered a hospital meal but refused, so the nurse (annoyingly) offered a tin of soup (DD knows the brand and calories so was ok eating this). Then bloods tested again and glucose had risen so they let us go. I feel completely helpless, I'm being told there's nothing more they can do, despite the fact she's eating next to nothing... I emailed the ED team again but no response yet. Our EDU assessment is tomorrow but I can't help thinking even then could be too late. Lots of tears today and we managed a whole sandwich at lunch, but nothing else. I can see how miserable she is but I don't know what else to say to her that I haven't already.

Yes @NanFlanders that's the place for us too. That would be really helpful, thanks. I'll let you know how we get on after assessment.

Been to visit my DD today and found this out she has been pouring her fortini drink down the sink ! This has come from one of the mums who is on our ward and been there as long as we have
Got knows how long she has been doing it for
Say 3 and still not able to eat

@lyriccat Hope the assessment goes well. We found the staff to be kind and the other patients were quite mutually supportive. Very happy to talk about my DD's experiences if it would be helpful. Hugs x

Lyriccat its unbelievable they're not admitting her 🤯 the fact they can smell ketones and still deem her a safe discharge is terrifying. Are they doing all the checks/ following the MEEDs checklist?

She will compensate and compensate until she collapses 😢

There is a fb group which might give you some advice on what to say/do to get her admitted for refeeding. I think Nan might still be a member and can tell you how to find it.

Lyriccat my DD told me that she could not have started eating again without being forced to I.e. in an intensive treatment setting. She said there is nothing we could have done at home to make her eat. I hope this can reassure you that more help is needed and it’s nothing you are or are not doing. X

@Girliefriendlikespuppies No one at the hospital even knew what the MEEDS checklist was 🙄 No experience with AN whatsoever. We were given the most unhelpful comments (one nurse even encouraged DD to start doing more exercise as a way to burn off food, after asking her why she wanted to look like a model...) I was really appalled.
Nothing except a sandwich today. I'm just about hanging on until our meeting tomorrow.

@lyriccat I am so sorry to hear what your DD is going through. Your DD may be too unwell but has anyone mentioned the Intensive Treatment Programme at the Maudsley in Denmark Hill, South London to you? It is a day program and means your DD comes home every night but has meal support, therapy and schooling during the day. It has made a big difference for my DD, long way to go but has helped her manage the distress around eating so she can now eat her meal plan consistently. Just wanted to mention in case your community team aren’t aware of it (surprising how many seem not to be).

Thank you, I'll have a look online. Likelihood is they'll say she's too underweight as they have done with the day clinic closer to us. I feel this kind of intervention would be much better suited for her emotionally though