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…

@Desdemonadryeyes
I have chronic pain and have gone through the entire pathway of pain medication. So I feel for you as I know the side effects from the drugs and / or withdrawal can be awful. And yes to the mind fuck. I hope this goes soon.

@Weightlossworried
I hope things improve for your dd. She’s probably absolutely exhausted mentally and physically from school. She hasn’t been in this environment for quite some time. And it’s all new to her. Add new drugs, which can lead to fatigue and it she probably genuinely needs the rest this weekend.

@sum12luv
I am sorry there has been no improvement for your ds. It is such a pity that our children aren’t able to be there for themselves. It seemed like your ds wanted to. But it’s such a fleeting moment, then he discharged from the unit.

As for his OCD tendencies and insistence you do things a certain way in the house, that makes it sound as if you are a prisoner in your own home. I would in all seriousness push back against that. It is not healthy for either of you to live like that. You must be so in edge. No wonder you didn’t want him to come home. He squashed that boundary fast. And it looks as though he is with everything else.

If this were your partner, we would be talking about coercive control. Mental illness would not be an excuse. And I would just like to remind you that you don’t have to have him home. Due to his vulnerability, I presume a place would be found for him. I get it’s incredibly hard to make that step.

@littlebabycheeses99
That sounds incredibly worrying. In a way it is good he vomited out the alcohol as in his emaciated state, it wouldn’t be good for his organs and would have caused dehydration, and potentially further vitamin deficiencies and mineral imbalances.

I don’t understand what CAMHS mean by backing off. Did they clarify? Are they saying you pushing is making your ds do the opposite from what you want? I can understand that. I was doing the same with my dd. If they mean backing off, because he’s medically ok, can they give you any more details?

@Holly221288
Those calories are better. It’s a start. But you can still get very ill eating such a small amount. I agree with the others, about being a squeaky wheel. Yes your dd is eating better. But does she have any compensatory behaviours, such as exercising more?

Gosh that sounds worrying @littlebabycheeses99 were you able to talk to him about it all later in the day?

It was dd's first week back. She spent most of yesterday sleeping too but engaged a little bit. She said she was frustrated with how tired she is and that she felt she took nothing in last week. She didn't take the olanzapine last night so let's see how today is. She's not in until later.

@Holly221288 she says the meds haven't helped her but I feel like they may have, we noticed small differences like her asking for something different for evening snack and recovering more quickly from her weight gain.

@Girliefriendlikespuppies she's having bloods done this week which is just as well. She does sleep like this when she's feeling really low though. She's like a little overheated laptop when she's struggling with big emotions, she just powers down!

@Holly221288 yes my ds did end up in hospital - she was on a general paeds ward for a week in mid August. She was having ed nurses visit her for meals three times a day - since coming home she has been eating although it’s still a battle some days to get her to have enough. For example, She’s just spooned out half the lunch I packed her for school.
its really good your ss is eating a bit more calories. Hopefully she can keep up with it and gradually increase.

@Weightlossworried that’s odd your dd is sleeping so much. When mine was purging and then when she was restricting she was sleeping huge amounts and was unable to wake up for school. She was low on several vitamins in her bloods. The olanzapine was making her sleepy too but she’s refusing to take it now and is sleeping less.

Thinking of everyone. I really hope everyone has had a better day with school/college/ preparing for uni. It’s nice to see some sunshine xx

Thanks @Pearl97. Yesterday was a bit of a day and we were all rather shell shocked. FIL passed away yesterday morning. He was taken into hospital Sunday.

Possibly because it’s a weekend, but they seemed to drip feed the issues to dh, so we didn’t realise just how serious it was. They took him a couple of weeks ago, he was checked out and sent away. So we really didn’t realise how imminent things were. Dh has been serving his notice. His last day was supposed to be tomorrow. So he did a hand over and left. He’s on his way now. He’s got to sort it all out as his mum died years ago.

So that’s me doing drop off on Friday. Luckily dd doesn’t seem too affected from an eating perspective. As lot of this is really ARFID, but it tips quickly into anorexia as with the ADHD, she forgets to eat. And the autism means she doesn’t get hunger signals until she’s starving.

I was hoping this would make her think a bit about stuff, others, things she could help with, offer a bit of emotional support. But she isn’t. And at 18, I find that concerning and makes me think she’s depressed. It’s so hard to tell. She has her nose in her phone constantly. I mean 8 hours a day.

@10YellowTulips it has crossed my mind that something like that could be happening with DD too.

She is now saying she won't go to the appointment tomorrow because she has lessons. I think she's using that as an excuse because when I asked for her timetable to rearrange she kept putting me off and I still don't have it! I have been writing it down as we go along though so I've left a message to try and move the appointment. I'm now feeling slightly petrified about the doctor calling back because I'm sure he'll be completely unimpressed. DH did offer to make the call but they always ring me back even when he asks them to ring him 🙄

Completely insensitive cross post, sorry @Mummyoflittledragon

I'm so sorry to hear about your father in law. That's an awful thing for you all to deal with when you already have so much on your plate.

@Mummyoflittledragon what a shock and such awful timing. Not that there is ever a good time. I’m so sorry this has left you to do drop off alone. I was hoping after drop off you and your husband could relax a little. I’m thinking of you, I know we don’t know each other in real life, but you have helped so many on here and I hope you realised how valued and loved you are xx

@Weightlossworried oh seeing the number call! I think they just call tv first number they see, regardless of who has called them! I really hope the move it with no issues, I totally get your worry though as they weren’t keen on college. Remember, you’re in control, stay strong and don’t let them make you feel you’re in the wrong xx

Thanks ❤️. @Pearl97 you say the most wonderful things. And I feel the same way about you all your help. We have such a loving and caring community.

I’m just grateful fil held on until after dd finished her exams and we saw him one last time this summer. He was a sweet man, annoyingly and incredibly stubborn, which I know now is likely demand avoidance.

@Weightlossworried not to worry about the cross post 😌 thanks. I agree with Pearl. I get it’s intimidating. You’re not being intentionally difficult. You have an ill teen, who has to agree to go to the appointments. As for getting your dd’s timetable, perhaps if you contacted the college they would give you the timetable? Perhaps you could explain you need it for medical reasons and your dd is being evasive.. Idk. College isn’t like school. But they may help with a bit of grumble.

@Weightlossworried I agree with @Mummyoflittledragon whilst it is college and different to school, they are also keen to make sure your DD is ok, and whilst they may not tell you everything, asking for a timetable is not unreasonable and they may be grateful for a parent showing interest. They will still call home from college if they have concerns etc, so it’s good to build a relationship.

@Mummyoflittledragon I'm so sorry to hear your sad news but am glad your FIL held on until the end of your DDs exams and that you managed to see him over the summer. Sending strength to get through these coming weeks.

@Weightlossworried sorry to hear about your DD being difficult about the appointment and I hope you manage to persuade her or at least get the appointment moved.

We found a specimen bag in DSs room which should have been done a couple of weeks ago by the looks of it. We can't say anything because a. we shouldn't have been in his room and b. all his appointments are confidential now he's 17. It's so frustrating. He has a GP appointment on Weds so hopefully something gets sorted then.

Awaiting an extended assessment with CAMHS on Thursday but in the meantime our DSs private psychiatrist has discharged him from her service for not engaging and for his continued alcohol abuse. She provides his sertraline and has now suggested going back to his GP. The GP refused to help on multiple occasions and advised him to come back in June next year when he's 18... so not sure where that leaves us.

He is continuing to be utterly horrible to us at home - and I know a lot of it is the ED but I can't help but take it personally. He makes me feel like the worst mother in the world.

@Mummyoflittledragon I am so sorry to hear that you've lost your FIL, that's the last thing you all needed right now. I hope the drop off goes ok, and that you and your DH get a break afterwards. Sending hugs.

Thank you both. Dd is still processing and sad.

@StressedANmum Yes, that would be great. And I’m sure dh and I will get a bit of a rest soon. I think we will both just want to collapse in a heap for a little while!

@littlebabycheeses99
Your ds has a while yet before his 18th, which is good. That means you hopefully have a bit of time to get him the help with his eating. Idk how easily he will respond, however, it does sound as though any treatment will be forced. The alcohol is a real concern as well. Do you think your ds is self medicating and this is possibly ADHD?

You are not the worst mum in the world. That’s just what the ED is trying to make you think to split you and your ds up. He’s inside. And he loves you. And just remember whenever he is horrible, or tells you he hates you, you have enough love for you both to hold this together. I know that is really hard.

The not being allowed to be part of your ds’s treatment must be so confusing and scary. Does CAMHS have any assistance for you as parents at all? My dd was never diagnosed as she walked away. However, they had a mum they asked to be a contact point for struggling parents snd she was a calming voice for an hour every 3 weeks.

Still struggling here. I told DS that university would be unlikely to happen with an eating disorder and that was totally the wrong thing to say (hindsight is a wonderful thing eh?). He ranted and raged, told me I was 'disgusting'. Wrote an email in front of me to his psychologist about how awful I was and what I'd just said. Told us both he hated us.

Now he's informed us he's going to a party on Saturday, is making his own way there, won't tell us where it is, whose party it is or anything at all. Given his last escapade last weekend, we really don't want a repeat - but this is worse given we won't know where the hell he is. We have never tracked our kids so we can't do that now (again.. hindsight).

He is continuing to eat very little. Never has breakfast and we have no idea about lunch - we give him money for college.

He is 17 and we just have no influence over him now.

He is supposed to have his extended CAMHS meeting tomorrow but hasn't mentioned it - and CAMHS have told us to let him make his own where there and leave him to it, and if he doesn't turn up then so be it.

I dread to think what he's been telling them about us. I just don't know what to do anymore.

@Weightlossworried did you DD go to her appointment or was anything else arranged?

Oh @littlebabycheeses99 he really is giving you a hard time isn't he? I don't think you were wrong to say what you did about university. It's true that the eating disorder could stop him being able to go. It feels like anything you say would be wrong in his eyes now anyway, he's sort of beyond logic at the moment isn't he?

I hope he goes to that CAMHs appointment at least.

We haven't heard anything back about the appointment today. I was hoping we'd be able to rearrange for sometime this week but who knows. She seems a bit less tired the last day or so though which is good.

@littlebabycheeses99 although this will sound crazy, in a way it is good he is showing others the behavior he shows round you. He is behaving in a manic way, and a psychologist and CAMHs will notice that. Do you have at contact with the psychologist?

I think we have all seen the worst in our children during this illness. Their brains aren’t working like they should and they say and do things they don’t mean. Most hate is saying it, but it’s the ED talking.

You must be so worried about the weekend. Is he doing things to punish you? My daughter used to say things she knew would upset me. Again, sounds crazy but have you tried not commenting on anything jn a negative way and just saying we love you. You may find that when he doesn’t feel the need to battle with you, he opens up more and the ED voices are less. I say this knowing that I could be completely wrong, and there is. I right or wrong here. It is shit and unfortunately we all know it xx

Thanks @Weightlossworried yes definitely beyond logic now. I hope your DDs appointment gets sorted.

@Pearl97 yes in contact with the psychologist though she won't reveal anything, we do update her. Yes it 100% feels like a punishment. Even last night he said 'why do you think I'm doing his?' (in relation to his eating) 'it's because I hate you both'.

We've gone down the love bombing route, written him letters, taken him to see family who have reiterated their love for him. None of it seems to work.

And I'm reaching a point now where I feel angry and incredibly sad at the same time. I can't believe we have 2 children who are so wildly different in their views of our parenting. He definitely blames us for 'making him the way he is'.

@littlebabycheeses99 he is looking for an outlet for his anger, and he know how much you love him. It’s amazing how quickly they can stop being so horrible when they are refed. I really hope he goes to the appointment tomorrow. Please hold on to the fact that he does love you. I remember almost praying that my daughter would go to hospital as it all gets too much xx

@Pearl97 yes we have reached that point unfortunately.

@littlebabycheeses99 its ok to feel you have reached that point. I really hope you get the help you need and deserve soon xx

@littlebabycheeses99
The love bombing will be working. It may not feel like it. It’s just it often takes a very long time. We had 6 months of absolute hatred and death wishes from dd. It’s all the ED. And she becomes vile very quickly when she’s not eaten properly just for a couple of days.

As for your ds’s location, do your ds and dd converse on Snapchat? Just wondering if they share location. If they do, your dd may be able to help if you’re concerned for his whereabouts? Or what about his friends if there’s anyone you know well enough if needed? I have the numbers of about 5/6 friends of dd. When my dd went AWOL, I called the ones I thought would be most useful and not freaked out too much until one picked up.

I agree about the psychologist realising what your ds is like. They are more likely to empathise with your situation even if the sessions with your ds are confidential.

And if you are really concerned about him, don’t hesitate to contact the police. He’s under CAMHS although not diagnosed and has been under a psychiatrist and currently a psychologist. If you emphasise all of these things, I imagine he will be a priority.

What @Mummyoflittledragon If you have a concern for his welfare call the police and document why he isn’t safe.

@littlebabycheeses99 hope you’re ok and you got some answers today.