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.

@WoodenTrain is there no way he would go to a&e with you? he needs proper checks, not phone calls from the ED team.

I don't get how their response is to keep an eye on him ?! Here, he have been taken in to hospital weeks ago.

Keep a close eye on him Woodentrain. if he won’t let you take his pulse you can check by looking at his neck. I would not be happy with just phone calls from the ED team if he is consuming so little. You must be out of your mind with worry. X
Mumofellie we have added things like peanut butter or Nutella at breakfast. Also juice. Crisps or yoghurt with lunch. Chocolate bars or mini ice cream pots before bedtime. Also almonds with snack.

Yeah, I am worried. My main issue with taking him to A&E right now (other than physically getting him there) is if his observations are ‘ok enough’ and we get sent home again it reinforces to him that he’s fine. Obviously he’s not fine but the message he takes from it is he’s far off needing hospital.

He has just eaten some chicken casserole so that’s a few more calories today at least.

Just tried to do his sitting and standing pulse. I can’t do BP because my cuff isn’t small enough. He wouldn’t stand for me to do the standing pulse, he said he’s too tired to stand.

@WoodenTrain I was also think of u. Glad they checked in on u. When do u have your app for them possibly doing admission?? X

Wooden too tired to stand isn't great, is he weeing and pooing? Does he feel dizzy?

I'd ring 999 tbh and get an ambulance out, thry can check bp and pulse, maybe do an ecg and get some bloods.

Don't worry about wasting anyone's time, it's your sons life 🤷‍♀️

Woodentrain i had similar concerns to you about A&E sending us home and that being taken as me overreacting and everything being ok so I took the doctor aside and explained my concerns before he saw DD. He was very careful how he spoke to her and impressed upon her how unwell she was and although she didn’t need an emergency admission there and then she did need treatment for AN. And he did bloods and ECG. If your DS is too tired to stand up then I would be going to A&E if I was you. You could write out your concerns in a note and hand to the doctor to ensure they don’t say anything that will worsen the situation.

That's a good idea about the note

İf he struggles standing, I wouldn't even faff around with a&e but call 999. They will send an ambulance. But at the very least, go to a&e. even if they say all is (still) ok, then at least he had been checked. But he really sounds like he needs to be seen and admitted. The way your ED are handling this is criminal.

@Woodentrain I had this with my daughter when I took her a&e they said she was ok and sent her home and she thought she was fine like she kept telling me but when she was admitted the dr out a complaint in about a&e for sending her home when she wasn’t ok and has not put a note on her file that if I have to take to a&e again that they contact her straight away

It really does sound awful, woodentrain, your ds sounds incredibly unwell and it does sound like hospitalisation is inevitable.

We did take dd to a&e when she struggled to stand and walk unassisted. We did get sent home. Fortunately for us, the brief time she spent on the ward (an afternoon) scared her into complying.

@WoodenTrain how are you and ds doing today?

It’s not going well unfortunately. He’s refusing all physical observations and interventions. I think we are looking at him being sectioned, unless he rapidly starts to engage. In the meantime I’ve been told to have a low threshold for calling an ambulance. And the ED team are visiting the house again tomorrow to check on him.

I just keep crying. Feel completely overwhelmed and helpless.

Wooden you might as well just call the ambulance, the quicker he gets in the better.

It is inevitable now sadly that he will end up in hospital.

have you tried calling an ambulance and would he let the paramedics assess him and admit if the things he needs? Might be worth a shot? he sounds so unwell. paramedics came to us with a mobile ECG machine and did all the other checks (except bloods).

Is there somewhere where you can put pressure on regarding a section? DD is much younger so we haven't had this issue, so not sure on the practicalities. So sorry things are so hard at your end and seemingly no help forthcoming.

I'm sorry @WoodenTrain it's so frightening, I do think your son needs more professional help to start refeeding the ed is so entrenched. Sending lots of virtual hugs

agree with girlie, he won't turn this corner on his own. he will have to be admitted. It's just delaying the inevitable .

So sorry woodentrain and I agree with others here, the sooner your ds is sectioned and can be treated, the better. Just remember he can get better from this, it won’t always be this awful, but he’s going to need help to get there.

He’s sleeping now so I’ll let him rest for a bit. I think he’s found it quite a traumatic day. He was seen by the ED Psychiatrist, she told me everyone is very worried about him and things would move quite quickly now, and that no one was going to just sit and hope things will improve.

I think they are equally concerned about how low his mood is, he isn’t really engaging in any activities, just sits there. He went to sleep when the Psychiatrist was talking to him. This is what he does though, he’s just completely shut down.

@WoodenTrain I came in here to see how you and your DS was doing. He sounds really poorly bless him I’m same as others call ambulance and get him in straight away you need to make sure he’s safe and getting the help he needs. I completely understand what u say about taking him in and then saying things are ok as like I’ve said before this happened to my DD when we took her a&e but your son sounds like he needs to be checked out. It’s horrible for u aswell and I really hope u are getting support for u as it is very tough.

@WoodenTrain It's good that the psychiatrist can see the seriousness of this. I think I'd be thinking about calling an ambulance now. Falling asleep when talking is not a good sign. (FWIW DD refused to eat for 5 days, and refused to go to A&E. We kept calling the CAMHS emergency helpline who seemed to be discouraging us from calling an ambulance. When we finally did persuade DD to go to her regular appointment the psychologist told us off for NOT calling an ambulance, and DD was so poorly she had to be fed immediately under restraint.)

The sleeping thing is related to his autism I think. He’s being doing that for many years. When he first started mainstream secondary I was asked to
not send him to school anymore as they couldn’t keep him safe because he was sleeping in the corridor. He does it when he is completely overwhelmed.

It does make it difficult though, as it’s hard to tell is this just his typical shutdown behaviour or he is physically unwell, or both? I think I’ve been leaning more towards it being his autism than his ED which is perhaps what makes me more reluctant to call for an ambulance.

@WoodenTrain you don't know if it's his autism or the ED. He sounds seriously ill. I wouldn't assume its the less serious cause and call 999.