Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

Didn't sleep very well last night. Not sure how I'm going to get through these days.

Feeling guilty for giving birth to a child that is so desperately unhappy and has been since high school really. He blames us for everything and really hates us. Feeling like the worst parent right now.

We have no family around here. Both me and my husband moved away from our home town (both from the same place). I feel so alone with this.

@littlebabycheeses99 I wish you weren’t feeling the ‘feeling of doom’ that we all know so well. You are not alone and you mustn’t blame yourself. You are doing all the right things.

You now need support from professionals. It is their job to make sure your son is safe and receives nutrition. He isn’t thinking properly as his brain isn’t receiving the nutrition it needs.

I would take him to A and E this morning and say what you have said above. We are on your shoulder xx

Thank you, there is no way he will go to A&E with us unfortunately.

He has plans to go into town (on his own) apparently. This is a common thing he does. We can't really stop him at 17.

@littlebabycheeses99 I'm so sorry this is all so hard. I can definitely relate to that feeling of not knowing how you're going to get through things and the overwhelming guilt. I think your plan of the emails and calls is a good one, and asking that vital question of, what would get him more support. I'm sure the anger he's aiming at you is because of the threat you pose to the eating disorder. It's his coping mechanism - an awful, unhealthy one that has to be challenged - but he's probably terrified of losing it.

We're all here for you and rooting for you both.

@StressedANmum thanks, any advice on olanzapine is much appreciated. She takes it a couple of hours before bed. At the moment she says she's just tired all day but I'll ask if it's worse at any point and maybe we can experiment with moving the time she takes it.

Re. olanzapine My daughter takes one in the morning and one before bed. The tiredness was bad for the first few weeks but not anymore. The first time she had one she literally fell asleep for hours! I'm not sure if they build a tolerance.

I did accidentally give her both doses in the morning not long ago and she was tired all day so having the two split seems to work better.

She needs one in the morning or the thoughts get too strong during the day.

I'm so sorry you're feeling like this and I can relate. Be assured though you are not a bad parent. You wouldn't be so worried about him and doing all you're doing if you were.

I really hope you get help he does sound like section would be the best thing. I never in a million years thought my child would be sectioned and would be horrified at the thought but we have been very very close and to be honest it would have been quite a relief at the time. When they can't think straight and are harming themselves the power needs temporarily taking away and that can be a helpful thing.

Thank you. She's only on 2.5mg in one tablet at the moment but if the tiredness persists maybe we can ask splitting the tablet to see if that helps. I have read the tiredness should ease though so hopefully it will be the time she starts college

I would say it lasted 2 or 3 weeks for us and during that time she discovered coffee! But I know everyone is different. Fingers crossed.

@Weightlossworried I think she will adjust, DD is on 7.5mg and she doesn't feel that tired during the day so hopefully it will pass.

@littlebabycheeses99 I am so sorry to hear you feel like that, I've been through phases like that too, where I think "wouldn't it be better if I'd never had her". I know it wouldn't though, when I'm feeling rational, and it's not your fault that he's suffering, you're doing everything that you possibly can to help. We just have to stay beside them and help them through, but it is so hard.

I have been reading the thread for some time, but have not posted for a while. @littlebabycheeses99 my son (25) was sectioned recently, and spent some time in hospital and in an ED unit. The factor that largely determined his sectioning was his very low heart rate and atypical rhythm. His weight was low, but may not have reached the criteria for immediate hospital admission.

Paramedics first observed the arrhythmia, after one of his ED nurses became concerned about his heart rate and dialled 999. If your son is purging and has been for a long time, and you notice worrying symptoms, it may be prudent to call the emergency services.

Thank you everyone. Have been going round in circles with the doctors. They gave him an appointment this morning but he refused to go. They said they would keep ringing him and trying but I'm not holding out much hope.

Have spoken to CAMHS and told them I want an urgent eating disorder referral. Waiting for call back.

He is still out, wandering around town on his own but should hopefully get the bus back later. Then I'm not sure what we'll do tbh.

Update from today. DS has ranted at us via text about quite a few things (normal) including telling us to leave the GP alone and mind our own business and to respect his boundaries etc etc (it was not nicely put).

CAMHS rang back and have arranged an ED assessment on Weds which is progress - however I don't see him agreeing to attend.

We have a college appoint on Thurs to talk about safeguarding etc.

So at least I feel we are getting the wheels in motion a bit. He has barely eaten again today really so that remains a concern - and of course anything he eats is probably being thrown up.

@littlebabycheeses99
Unfortunately at 17, your ds is at least a year older than when we went through this process with dd and naturally, it is more difficult to handle the situation. I think it is important that he is seen by an HCP. Can your dh take the day off work and make that appointment non negotiable?

As you know, you are only allowed to talk about private medical stuff from age 16 with your ds’s consent. My dd signed herself off CAMHS at 16, because she didn’t want to engage with them. If you don’t get your ds to CAMHS, I am not sure what will happen. They may just remove him from their list and tell you to take him to A&E if you have concerns, so I would try very hard to get him there if you are able.

Is there anyone he trusts, a friend of yours, neighbour or relative, who could accompany you to help with getting him there?

As for his behaviour with you, that’s absolutely normal for some ED sufferers. My dd is vile to me, dh as well. She used to regularly wish me dead and told me all the time how much she hated me. That was bad enough. But I accepted it as purely the ED. Now I am not so sure. She constantly talks to us like we are shit or ignores us. It’s really unpleasant. When I challenge her on the eating and get told to eff off, that’s one thing. This is different. This is an extreme version of the normal need for teens to break away, maybe because of mental illness and extreme anxiety. I’ve had a text from the family of dd’s friend telling me how she’s a delight and so easy going. They get Dr Jekyll…

Our dd is the product of ivf. So we specifically went out of our way to make her. Try not to feel guilty for bringing your child into existence. This will pass one day.

Idk what college will say about safeguarding. I imagine legally they have to allow him in re the equality act? I hope they have some practical suggestions.

@sum12luv
How is your ds doing now? How are you?

@CuppaTandBicky
It sounds as if things may have turned a corner a little for you. Is your dd eating ok?

I hope everyone is ok. Sending hugs. Xx

Thank you @Mummyoflittledragon we will see how today goes.

I'm sorry your DD is vile to you too. It is soul destroying.

Just thinking out loud @littlebabycheeses99 is it worth saying he needs to see The ED team so that you can all agree what he needs so you can stop worrying and asking him questions. Sort of any way to get him there? It’s not lying, but it’s sort of making out like he is right, even though he isn’t?

What did the hospital say when he was discharged? It must all seem so crazy that you are begging for help but no one is listening. You are doing everything you can. Please be kind to yourself, this is so hard for you all xx

Thank you @Pearl97

I've texted him this morning (he barely speaks to us) but he's still asleep. I've tried to word it carefully (with the help of Chat GPT) so will see what he says. I'm expecting him to be furious and refuse.

We didn't have any input at the hospital because he refused to let us go in with him unfortunately.

He also refused to speak to 111 when we called them. There's a pattern here... ! It's so frustrating because he's 17 - but he's not being rational at all.

Unfortunately @littlebabycheeses99 not talking to you can be one of the side effects of this. Plus you have a teenage element to deal with. And he then doesn’t have to deal with the situation.

As for CAMHS, they talked to dd and us separately, albeit it started all together. I think that was to put dd at ease. We had the opposite issue, dd not wanting to talk to them alone. So if this helps, you can tell your ds he can let them know he doesn’t want you in the room. You’re just asking for him to have a chat with them.

To add: If you manage to get him there, he may end up going with you and saying nothing, if they can get medical obs, that would be great. And you can fill them in on the parental bit.

Well done on keeping on trying to get things moving @littlebabycheeses99 We sort of tricked my DD into the GP appointment using the method Pearl describes. She refuses to speak at the appointments with the ed team but she does go and we at least get a physical check. I really hope he'll agree to go, you're in such a difficult position.

Thank you @Mummyoflittledragon @Weightlossworried Have already had a call from CAMHS this morning asking if he was attending tomorrow. I've told them he's not up yet.

I don't know how to handle it really, because even if he says no today, he might relent tomorrow. So should I tell a white lie to CAMHS if that's the case or just say 'we'll get him there' and then just see how it pans out tomorrow?

Or is that just denying someone else who really needs an appointment and has a child who is willing to engage? I don't know what to do.

Oh absolutely tell them you'll get him there. They'll be well used to young people changing their minds on the day. You need this appointment. It's not even a lie. You are absolutely intending to get him there

Absolutely tell them he’s going! Even if he’s in the car they may go seem him there. This is a service you need and have access to. It isn’t for you to worry about others right now. You are important and need help. Isn’t it crazy the services treat children like adults, and then when they are adults, they want to know our income as parents for their student loans. Absolute madness!!! Xx

Hi everyone. I’m so sorry we are all going through this, it’s truly the most horrible illness and it’s been the worst couple of years of my life. I have a question if I may? My daughter was in an ED unit for ten months, she was discharged a year ago and things are going well for her but we still have a lot of foods she can’t eat and we cook and weigh out all her dinner with her preparing breakfast and lunch. Next September she has been accepted for a university three hours from home. I’m very worried about this and wondered if anyone had any experience or advice to offer?

I should say her weight has remained steady for this year and she eats all her meals and snacks and did very well at school

@0tterinthesea your post fills me with hope. I don’t have advice but from the threads I can think of a few ideas. Registering with the campus GP and forming a relationship with the GP or nurse for monthly check ins, contacting the local area adult services to see what could be offered, maybe with a supporting letter from current team. If she was S3 then 117 aftercare could be useful. Also if she gets PIP maybe that could help with food shopping and delivery if her safer foods are more expensive. Or PIP could help with a counsellor to touch base with. Would she agree to meal plan with you each week and then arrange a food delivery ? I don’t have experience yet but those ideas might be helpful.
My daughter is currently inpatient and about to turn 18 so it’s alll change to adult services. How did your daughter and family cope with transition to adults from inpatient and school, A levels ?
such an unbelievably awful illness .

@littlebabycheeses99 i would absolutely tell them he was attending, and do everything to get him there which I am sure you will. If he won’t they might open him to the crisis team who can visit at home and maybe make a recommendation for instructing a MHA assessment if they felt his behaviours were unsafe. A section 2 would give them 28 days to decide. If they feel he is safe for now they can possibly offer you some support and keep him open to the ED team.