Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

This sounds really awful. I’m so sorry.

@WoodenTrain agree with girlie to ask about olanzapine. It was instrumental in helping DD to eat and kicks in pretty quickly (2-3 days). She has been on it for 1 year and Sertraline on top. I remember her saying that she felt nauseous initially on Sertraline. Sertraline is an AD but is also supposed to help with anxiety (not sure how much it helps us tbh). Olanzapine helps to reduce the massive anxiety around food. DD only started eating again on Olanzapine after she was put on it following an emergency hospital admission. for us it was key.

If he's completely refusing anything either take him to a&e or call an ambulance, he's already critically ill. Tbh I'm surprised they let him home the other day, he should he in hospital to start the feeding plan.

This is why I think blind weighing is so important. At 90% wfh it sounds like she hit intinction burst which is why it's all kicked off again.

Have you got any leverage? Phone, seeing friends, school?

How much calorie wise is she getting a day?

Taking things away don’t work with my dd. She’s very stubborn and would fight until very ill.

A friend, who has been hospitalised with an eating disorder herself, told me to dial down the stress around food, as stress is preventing dd from eating (which I know, but didn’t know how to handle it). She said to take the food to her wherever she is, put it down and say, ‘this is your food, I’d like you to eat it please’. Then return a while later. So eating alone and not at the table, which is a big no no from the advice I’ve read. But dd won’t throw or flush the food away.

It isn’t working systematically, more not than working and we are only achieving eating twice a day tops. What works with dd is only taking her places if she’s eaten. So dancing (she’s been watching btw) or hairdresser appointment next week.

She is eating with friends so there has been a conveyor belt of friends and eating out, which she isn’t enjoying but she’s organising it when I suggest she does, just very very little at home. Easter for us has been a boon in that respect. She’s also been to the cinema a couple of times and taken nachos, which are very calorific and eaten loads, not much carb apart from this.

Dd doesn’t want to please me by eating so it’s a terribly difficult balancing act… her anger at her medical condition is being deflected on me. Hers isn’t image / weight driven but trauma, albeit she’s stopped eating any kind of sweets, chocolate, cakes etc. This isn’t sustainable long term as she’s back to school in a few days… am thinking about leveraging taking her to get her belly button pierced after her GCSEs…

Idk if this is helpful at all.

She hasn’t been well enough to attend school, see friends etc since November.

Camhs don’t agree with blind weighing and she refuses to stand on the scales if she isn’t allowed to see.

Camhs have also told me not to remove her phone which I did last week 🤯

@WaitingForMojo i hear you regarding wanting to remove the phone. If it’s ok to ask what was CAMHS rationale for not removing the phone?
I am over dd and her being glued to her phone and headphones constantly. Told her a basic requirement is taking them off when someone is talking.
We’ve got parental controls on the phone but I’m still concerned about the calorie tracking and you tube videos she’s watching when she gets the chance. I really hate the world that our dc are exposed to now online.

She’s about 800 cals a day atm, her meal plan is 2500

They think it’s punishing her and creating a battle of wills.

I’ve been told to back off. But my not wanting to make a battle of it is how she ended up critically ill ffs

We have Camhs on Tuesday, I’ll revisit that then.

@WaitingForMojo i think we are damned if we do and damned if we don’t. Hope the appt goes well on Tuesday.

In the end he had around 400 calories and a glass or water. Then this evening he’s said no more meal plan, no more talking about food. He wants to be left alone to continue as he was having a small dinner and maybe having lunch. He’s said he won’t be having any more talking to the ED team and no blood tests.

Where do we go from here? Last time he refused blood tests and didn’t want to talk about his eating I was told it was his choice as he was 16. Just hoping when the ED team visits tomorrow they will know what to do.

Regarding mobile phones/electronics I’ve been told the same thing by CAMHS albeit in a totally different context to never remove them as a negative consequence. I was told it was demotivating and more likely to lead to a negative behaviour spiral.

@WoodenTrain I'm sorry your son is so poorly. It does sound like he's really not well enough for FBT (at the moment). Now he has had an assessment though and they know how ill he is, they should be thinking about a hospital admission to re-establish feeding. He might actually find NG feeding easier - for a while we had an arrangement that if my DD missed anything we went up to the hospital for an NG top up. She said that she felt it 'wasn't her fault' if the food went in via NG. Apparently the vast majority of patients don't refuse NG. (And it's not as horrific as it sounds - our DD's heart rate improved almost immediately, so we were massively relieved when they did start it). Hang on in there - thinking of you.

@WoodenTrain

Although legally your DS can refuse treatment, they can and will section him when he is deemed sick enough and admit him into hospital. He doesn’t have any choice then and won’t be at home. This is the point we got to, my DD was eventually admitted as a day patient and she accepted that it was a better option than having to be sectioned with 24/7 admission. She was fainting at this point and very very unwell. Stay strong, it’s awful at the stage you are at, I am only three months ahead of where you are and it’s a little easier now.

I never took the phone off dd as a punishment but it was a useful incentive, it was framed as 'once you've eaten you can have your phone back at the end of the day'

My dd needed a reason to eat that was stronger than the desire not to eat. So I used 'when and then' a lot. When you've eaten that then we can watch a film/play a game/do your nails/get the craft kit out etc.

Ultimately you know your child the best, you've been getting them to go things they don't want to do for years!! Camhs are an advisory service, these are professionals but are unlikely to have had first hand experience of a child with an ED.

And it absolutely is a battle of wills, your will to keep your child alive vs the will of anorexia to kill them.

Wooden I think I'd be pushing to get your Ds sectioned at this point. I'm not sure how they can say he is stable if his obs and bloods are outside normal parameters?

Wooden this is the hardest stage, knowing they are so ill, services knowing they are so ill and still no effective treatment. At this stage we were told that bloods, heart etc were typical of someone with AN so until weight drops to whatever cut off they have (although they say there is no cut off) then you have to manage as best you can at home. Girlie and Nan both give good advice. Keep pushing for treatment. He needs help from outside the home to reestablish feeding. My DD said that we could never have made her eat in the same way that the day unit did. She went willingly but the psychiatrist said that they would section her if needed as they were not going to let her die. Bloods, HR etc all returned to normal pretty quickly afterwards. WR is much slower but the trend is upwards. It’s exhausting but the terror of the early days is gone. Thinking of you WoodenTrain

@Girliefriendlikespuppies they said he is stable as although his BP and pulse were low they aren’t low enough to warrant hospital. I found out it’s his potassium that’s out of range, just ever so slightly low but again not low enough. My worry now is he’s back to refusing bloods.

We’ve basically been told the same @Shanghai101 until his weight goes red on MEED checklist all they can do is just encourage the meal plan and monitor his physical health (which he won’t allow). That’ll be about another 2kg he’ll
need to loose, so another few weeks?

Hopefully it won’t get to that point and he’ll start following the plan.

@WoodenTrain just keep a close eye. We once went to a&e and all was ok (just). Two days later she was blue lighted to hospital as it all tipped and she spend the first day in the high dependency unit. We checked the heart rate at home (she would let us) and temp too (it dropped to a dangerously low level - she felt ice cold when we touched her). Ultimately, he will need admission if he doesn't eat. Just a real shame that our kids have to flag red to get help. I really feel for you. We were at your stage a year ago. Hospital was a turning point though (and I think is for many in these circumstances - change just doesn't happen when the AN has do much hold over them).

Low Potassium is extremely dangerous and can cause issues with the heart. It doesn't need to be out by much.

If anything changes or doesn't feel right call an ambulance straight away.

Personally I'd be asking for urgent admission, the risk is too high and more weight loss could be catastrophic.

@WoodenTrain @Shanghai101 it’s barbaric that our dc need to wait until they meet some arbitrary weight criteria. I know that it’s a tool to gatekeep access to minimal hospital beds, however it puts lives at risk and allows the eating disorder to become further ingrained. The number of times I’ve heard if it that bad I’d be in hospital. I’m just grateful that the outpatient department has been sufficient to keep dd stable enough to stay out of hospital but we have been too close for comfort at times.

I am going through the being angry with the situation phase. The choices that were made before the eating disorder took hold and the meals skipped. Dd started off with disorganisation and missing breakfast.

I am really struggling these school holidays as she’s under my care 24/7 and I have no breathing room. My mental health is shocking, I’m safe but have had some scary thoughts as I’m just so overwhelmed. Nighttime is the worst as I find myself breaking down in floods of tears. Multiple appts tomorrow and just want to runaway.

@Cantfindthewordsddstruggling Anyone's mental health would be suffering in your situation. Have you tried calling the Beat helpline? They were very sympathetic with me. Also, I self-referred to an organisation called Talk Liverpool who offered 10 free online counselling sessions. There might be something similar in your area - I think the GP mentioned them originally. And don't forget the Samaritans - you don't have to feel suicidal to call and you can just download. If you have a partner, is there any way you can take a couple of days away and let them take the load? Staying with an old friend? A weekend away? At DH's insistence, I once checked into a local hotel for two nights and sobbed my heart out, calling the Samaritans twice. Then I put my big girl pants on, went home and got on with it Anti-depressants might help too. Look after yourself xxx

@Cantfindthewordsddstruggling Im in a totally different position so won’t even pretend to know what you’re going through but I do appreciate that you can’t give when you’re empty. It’s very difficult to have the energy/time/space for self care but it is essential. Hope you’re able to reach out for local support.

@NotDonna @NanFlanders thanks for your posts. I’ve found some local resources I can tap into and will reach out to the Samaritan’s if I become too overwhelmed again(though from past experience it can be very hit and miss with the volunteers). Feeling marginally more human today. Just need to get through today and tomorrow and things will be a bit calmer come Friday.

@Cantfindthewordsddstruggling

may also be worth to see the GP. I think a few on here are in anti depressants. My GP put me on HRT which made quite a difference. Guess perimenopause wrecked my sleep and my coping mechanism. There may be some things the Gp can help with.