Teen Psychosis -Hospital or home.

[Notagoodnight]

To those you held me hand first night in hospital friday night thank you it was very very much appreciated. DS(14) is now eating stuff with me(we order the same stuff and he picks who eats which plate) but still very very unwell. I need your advice and experiences again

Our first few nights have been pretty rough but camhs and the staff were fabulous. They have him on promethazine which isnt reducing the psychosis but is reducing the speed at which they are coming, he also doesn't seem to be so keen on grabbing my wrists anymore when hes got to the your lying why are you lying stage. They dont want him on anything stronger until they talk to his normal consultants tomorrow. They put us in an individual side ward and gave us a one to one both of which helped hugely. And I actually slept when I could last night.

So tonight when just as DS was thinking of (freaking out before) settling down and I was reassuring him the nursing staff were not going home to die just to get some sleep and see their families, they moved us back out the side ward into the real ward and because they are short staffed the one to one is running errands for the main nursing staff. I cant now put the light on bright enough for DS to see my face properly (in his mind its changing fairly regularly) and I'm talking in a hushed voice which I think is making it harder for him to tell the difference between my real voice and the other not real voice talking to him (that hes been cloned, that hes dead etc). Before we went to sleep we had to run through all the noises I could hear to check he wasnt hearing other stuff. That's quite aside from the fact of much of the stuff I'd told him now doesn't work, like where on the ward he can talk about being cloned and where he cant so he doesn't scare small children)

Camhs has offered us intervention at home and for the first time I genuinely want to be home but says there no rush to be there if that make sense. At least then the environment is more predictable and more constant.They say the support will still be there home or hospital but I dont know how much I can trust that. Also they where talking about some kind of early intervention process. Their thought atm is that a residential placement is not the best environment for DS because he just won't cope i think they are probably right.

But I'm aware the longest I've slept in the last 3 days was 4 hours last night. My decision making might not be the most altogether and I'm inclined to go sod it if I cant trust the people around me I'll do it alone. Also spending all day explaining why someone's delusions arent real can leave you feeling pretty unreal yourself.

I really appreciate peoples thoughts and experiences

I’m sorry I don’t have any guidance for you, just sending you a virtual hug - I couldn’t read and ruin. Whatever you end up deciding make sure it’s right for you as well as your DS, you need to be ok too (safe and able to rest even if everything else is on hold)

I appreciate the virtual hug actually I really appreciate the virtual hug. Moving discombobulated me. I'd organised my world in a way that makes life manageable for what I need to do and could grab what I needed quickly. They moved us so quickly, (I think trying to make it painless) but actually put my bed the wrong side of DS' (so DS could get out the ward before I could) and my stuff ended up all higgledy-piggeldy.

This is so hard for you.

Two things struck me; if the one to one staff member was properly with ds, and if you weren’t trying to be cautious of younger children being scared - this might make things a bit more manageable?

I would consider doing some of the following: ask to speak with the senior nurse on the ward and explain that ds needs the one to one for his safety and well-being. If the nurse in charge hasn’t got the authority to sort this or to get additional staff then ask for the bleep holder. There will be a more senior nurse manager on duty in the hospital. Try your best to explain what you have explained in your post. Stress that you can’t care for him safely 24/7 and he needs this hence the 1:1 being sorted.

If no joy trying that, ask there is a CAMHS nurse on call that can be contacted as they likely arranged the 1:1 and this is part of the safe plan for ds’s care.

Perhaps say to them that although you appreciate the individual room is probably being used by a patient with a higher clinical need, you are going to have to focus on your son. Regrettably this may be disruptive on the ward due to his unsettled mental state. This is not your being difficult this is just calmly pointing this out what may happen while you are left caring for him tired and alone and this is not what was agreed or arranged.

If you haven’t had chance for a hot drinks or a meal ask them to care for him while you grab something or ask if they can give you toast. You need to have your basic needs met too.

It sounds like the whispering and dimmed light etc. might for now be keeping the environment quieter for others, but could lead to your son becoming more distressed? I’m not saying deliberately make a noise I am saying do what you need to reassure your ds and if as a consequence it makes more noise, this will highlight perhaps that the 1:1 needs to be doing their role with ds and not other ward work.

Whatever decision you decide re home or hospital will be reversible.
So if you do say sod it you’ll go home with community support, at any time or if your son becomes more unsettled or you can’t cope you can ask for this to be reviewed.

I’ve got no advice to offer but just wanted to send and a handhold. What you’re dealing with is unimaginably difficult and you sound amazing. I hope someone with experience is along soon to help.

I'm a paeds nurse and shocked that you are having to 1:1. We now have agency RMNs who do the 1:1s now. Because we just could t spare several staff to sit with one patient. And it was also causing people to leave as they hated doing it, and just aren't trained for it. Definitely speak to the nurse in charge and tell them you just can't do it. They'll have to escalate it.

Absolutely no help whatsoever,I just want to also send a virtual hug

I’m so sorry you are going through this.

My dad had psychosis and was sectioned. I had quite a few midnight trips to the hospital when he was refusing his medication, as i was one of the few people he trusted. It was utterly exhausting and so draining. I felt like I was balancing on a knife edge.

It is such a difficult thing and I just wanted to let you know you are in my thoughts. Sending best wishes for you and your son.

Really feel for you. Whilst a Paeds ward is great for life saving / keeping your son safe etc in my experience just not set up for a child experiencing a mental health crisis. The inevitable noise/ lights / distress of other ill children made my daughters symptoms worse after a time.
I also felt compelled to constantly try and keep her quiet as her thoughts were so distressing.
Take advice from CAMHS on when to go home.
Ask exactly what support will look like once you’re discharged.
Don’t feel it’s your responsibility to decide best course of action when you’re exhausted & stressed.
Support at home from crisis team has been amazing in our experience but it’s still totally exhausting as we’re constantly on high alert day and night. At least though we’re in our own environment.
Try and take any opportunity for rest or fresh air once you can.
Hoping your son's distress eases soon.

Tbh so far its proving much better than I feared. Last night were were doing shepherding runs me, the one to on and often his nurse doing the length of all the exits (Ive never seen him move anywhere near so fast before ever!! ) before he finally settled at some point at 1ish. I was half expecting the same tonight but He is actually sleeping though which is huge relief; my adrenaline is still pumping though🤦‍♀️🤦‍♀️🤦‍♀️ ever time he moves. The one to one has put his head in and waves at me every 10 to 15 minutes to let me know I can sleep, I know he was a bit annoyed at the situation. The the ward sister is right actually we can manage tonight but at least they know I'm not happy and it wasnt what was agreed. The ward sister genuinely didnt care as "she was short staffed". I will pick it up with CAHMs.

Your right my priority needs to be DS., if I talk in my normal voice i talk in a normal voice that's better than talking in a hushed voice.

Another hand hold here.

I’m sorry you’re going through this. I echo what the other ladies have said about focusing on yourself & your boy. Don’t worry about making noise.

Going home… check and double check what support you will have. Then check it again then once more. In writing. X

Thank you for all the handhelds I really do appreciate it
@Juniper74 i hope you DD is well or at the very least in much less pain. Your experience is really useful to on the home care front. I'm rereading a couple of times because theres a lot useful stuff there for me. You've nailed the balance between DS's needs and other peoples. I was motified and touched equally with I was waiting outside the loo for for DS and said to a passing child I hoped there wrist got better soon. The Dad replied "I hope (DS's name feels much better soon". I hoped we hadnt caused to much upset and he said "not at all your fine we just hope hes ok". But it didnt escape me they knew exactly who I was and what DS' name was.

@Notagoodnight

Hope it’s been a bit of a better night.
If not, when you see the doctors later ask if something mild can be given to help ds sleep. If sleep can be sorted this may make you feel more able to look after him at home? If that is still something you and he might prefer.

(I know you have said you have seen CAMHS but this has all been at the weekend so far and you mentioned seeing the normal consultants today).

They will carefully balance what needs to be prescribed. Hopefully sufficient to manage his symptoms but partly due to his age they will want to reduce and monitor for side effects. Reducing possible side effects makes it more likely that ds will accept his medication.

Anyway, all the best with his review today hope it is soon.

this is my general experience within the psych ward there are more stores on my channel as well. please no matter what be safe! im Rooting for you and your health get better my friend!

So we've been home 3 days. DS is still delusional and occasionally experiencing auditory hallucinations.

Diagnosis is supposedly a high anxiety due to failure of the sensory integration system and the treatment just the anti anxiety meds and mum to arrange occipational therapy through the children's integrated therapy service (hahaha!!!).

Mum is also apparently meant to maintaining routines. His routine currently is sitting in his room listening to the same song on repeat. He will not come out or do anything.

Camhs have managed one visit. They will manage one on Saturday. They have offered a couple of phone calls after I called with a bit of a crisis and managed to get back 3.5 hours later

And that's about it. The much promised support. The care plan is literally mum to do

Can anyone help me work out if this is where we are meant to be? Did anyone manage to get any more substantial help?

I’m so sorry. This is the state of the system. They encourage you to go home and then the help disappears. I’m so sorry x

Oh shit OP that's crap, I'm so sorry you and your ds have been so let down.