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.

I'm also saying the inevitable is on its way so call an ambulance. You need support

Woodentrain thinking of you and wishing there was some way we could support you practically through this. Don’t be afraid to call an ambulance. X

@WoodenTrain really sorry to hear the update and that you are really struggling. Hoping DS is now getting the support he so desperately needs. You are doing your absolute best WoodenTrain.

The tears we shed are unlike anything we’ve experienced before. I don’t know if anyone else experiences this but it physically hurts when I’ve become distressed.

Hope things are ok @WoodenTrain, I'm hoping the team have made the inevitable decision to take your ds into hospital. So sorry it's got to this point.

@Cantfindthewordsddstruggling - yes, I feel a physical pain too. I wish we had better words to express this stuff to others, I find it really hard to get over to people who don't have this in their lives just how utterly horrible it is 😟

We have had some ups and downs over the last few weeks and it's been hard going. We and have finally got a camhs appointment so will see how that goes. I feel bit lost with how we are ever going to get out of this tbh.

Hello not been on here in awhile sometimes it gets a bit much the stories are quite scary. I just wanted to share some positive news as I know it’s good to hear some light at end of the tunnel. So my dd seems to have turned a corner. I don’t want to count my chickens but I’m feeling positive at the moment. There are very few arguments about food. She has been able to get her snacks herself from the cupboard. She has tried a new breakfast today and didn’t make a fuss about it, it was gone within 10 mins. She’s had a new flavour yogurt. Went shopping and she’s also saying yes to some changes with discussion still trying to choose the ‘healthy’ option but I feel she is now understanding the need to try new things. She is socially much more happy been to town with her friend on weekend. Still unable to eat anything not cooked at home ,can’t just buy something shop bought and eat it or eat at others houses these are next steps but I think she’s come a long way in a year. I just pray that it continues. I don’t want to go back to those dark days. I wish everyone else some positivity and want you to know things will hopefully get better in time. Xx

That's great news, @Whippetlovely. DD is also doing well. Very much improved mood. Still sticking to 'healthy' choices at home, but cooking for herself, eating 3 meals a day, studying hard (but not manically) and has a part-time job. She even had a cheeky Nandos with a friend today - including fries! Recovery is possible, and no-one with an eating disorder is untreatable, so do hang on in there everyone who is still in the thick of it.

Don't forget that this Saturday is the second #DumpTheScales march. There are a group of us meeting in Trafalgar Square at 10 am. https://www.swlondoner.co.uk/news/19042024-campaigners-to-march-for-improvements-to-eating-disorder-treatment. I've heard some shocking stories of neglect and underfunding on this thread lately, so, if you have the time and energy left, please do join us. DM me if interested.

That's great news Nan and whippet on the progress, I couldn't agree more re recovery is possible. My dd is doing well as well, she passed her driving test this week! She's also been making herself a bit more food and even made herself a smoothie which had lots of fruit with ff yogurt in which was an 'extra' to what she normally has.

She's going on a college trip over night today and was talking excitedly about the hotel breakfast which was nice to hear.

Wooden thinking of you and hoping you're okay.

@WoodenTrain how is your DS today?? And how r u x

We are no further forward. I didn’t call an ambulance as DS told me I’d be wasting NHS resources and taking an ambulance away from an actual emergency. He said there was no point in an ambulance coming because he won’t let them do any tests. So it’ll just be a waste of everyone’s time. He then got up and had a shower, he seemed ok so I was worried that if I did call the ambulance nothing would happen anyway and therefore I would potentially be taking an ambulance from someone in an emergency. So I thought better to wait until morning when the ED team visit.

Currently he’s still refusing all physical observations and won’t talk to anyone. He’s refusing medication or any intervention. He believes he is perfectly well. I’m not sure what today will bring but the ED team are visiting this morning. On the plus side he did engage with family members last night and he ate 1000 calories yesterday.

Its good to hear others more positive stories. It gives hope. I wish I could join you on the march @NanFlanders - maybe next year.

Has anyone had experience of their child being sectioned? I’m really anxious/scared as I’m worried that’s what will end up happening. Where do they go? General hospital or mental health hospital? There aren’t even any CAMHS Tier 4 services in my area, they were all closed down.

Woodentrain as hard as it is you can’t rely on what your son is telling you. His ED is very strong and does not want treatment. You must go on the advice of the HCPs and your own judgement. I suspect he will try to do enough to keep out of hospital e.g. by eating 1000 cals at times but at some point he is not going to be able to control how his body reacts and then it becomes very dangerous as even when he decides he will eat more his metabolism will be so screwed up that he may continue to lose weight. It shocked me how hard it is to restore weight on a ‘normal’ diet I.e. eating what everyone else in the family eats.
I’m sorry I can’t answer your question about sectioning but if there are no services in your area then I think that the NHS may fund private treatment. Please ask the ED team what the plan is for your son. X

woodentrain I haven’t had that experience with my child but I have experience of the sectioning process. It will completely depend what options there are in your geographical area.

Where he will go depends how unstable he is physically. If there isn’t a Camhs inpatient unit, I imagine it’s likely to be the children’s ward to stabilise him medically. He may then end up treated out of area if there is no suitable mental health facility. I would push for him to be in a specialist ED unit as soon as he is medically stable.

Can you ask the ED team those questions when you visit this morning?

@Girliefriendlikespuppies Many congratulations to your DD on passing her driving test! And brilliant news about the overnight college trip. Great to hear of these kids getting on with 'normal' life after all they've been through.

Yes indeed. Congratulations to Girlie’s DD on so many fronts. Safe driving. And thanks to everyone for posting stories of hope X

@WoodenTrain how was this morning?

Took an hour to persuade him to do observations this morning. Eventually consented only to BP and pulse. BP was low and pulse was high so we are now in the hospital. Not sure what’s happening whether he’ll be kept in or discharged back to be managed at home

Hopefully they keep him in. You cannot keep him safe at home. I would blank point refuse to take him back.

Are you on a general ward?

We are on the children and young persons assessment unit currently. Nothing much has happened, I believe we are waiting to see a doctor.

Yea definitely refuse discharge, ask for a safeguarding referral as you can't keep him safe at home wooden. Given his obs are out he is not physically stable to be safe at home. His denial that anything is wrong is part of anorexia, there's a technical name for it which I've forgotten and it's linked to the brain shrinking with weight loss.

Thanks for the congratulations re dd passing her driving test. I feel like driving is a really good leverage to keeping dd well as any sign of relapse and she would easily lose her license. It's great motivation for her to keep striving for recovery as well as a confidence boost for her.

@WoodenTrain

I would absolutely refuse to take your DS home. He needs stabilising in a hospital. Whether that is under a section or not, I would be horrified if they suggest he is well enough to go home today. They should do an ECG and bloods if they haven’t already. Low blood pressure and high pulse is very dangerous.

@WoodenTrain

DD’s psychiatrist explained to me that if she requires hospital treatment and refuses it then it takes two doctors to approve the section. And it depends on where there is a space, could be anywhere in the country, but preferably in an ED unit setting. We still have this being mentioned every week……DD is eating and drinking but just not gaining weight 😔. My BIL was sectioned a few years ago, that happened very quickly……he was in a mental health hospital for 4 months.

If there is danger to life then they have no choice. We have done tier 4, that was a secure unit but they come home at night, most of them end up sectioned at the tier 4 unless they co operate with eating.

@Girliefriendlikespuppies congratulations to you DD. My daughter has stopped her lessons at the minute but not even sure when she can restart them again.

@WoodenTrain please keep us updated I really hope they keep him in I know it’s hard but it’s the best thing for him. I hope your ok

@Girliefriendlikespuppies well done to your DD. For my DD, the driving was a huge motivation for getting better

Seems like they won’t be admitting him. They just said he doesn’t have any medical issues so doesn’t need to be here. His BP/heart rate is consistent with someone with an eating disorder. They are just waiting for blood results.

I'm sorry but that's ridiculous. That's just going to reinforce his idea that's there's nothing wrong. I would refuse to take him home.