Daughter sectioned - will she get better?

[BSB30]

I don't even know where to start.

My 19 year old daughter became unwell at the end of December 2022. She became paranoid, having delusions, panic attacks, became incontinent, stopped sleeping, stopped eating etc. she would sit on the edge of her bed for sometimes 18 hours and just stare at the floor.

I took her to the GP in December and she was prescribed Sertraline. She did not tolerate that very well and it made her mental health worse.

She thought people were out to kill her. If she couldn't see someone, she thought they were dead. She thought people were on our back garden, at her window, hiding behind her curtains, on the landing. She was hearing things that weren't happening.

I tried to get her help through the Early intervention for Psychosis team. They came out and concluded she wasn't suffering from psychosis.

She got even worse and I ended up taking her to A&E at the beginning of February. While we were at the hospital, she thought the electric was going to go off. She was prescribed Diazepam to relax her. I wanted her admitting to hospital at that point as I knew how bad she was but they didn't want to do that.

By the middle of February, she was too unwell, her body was rigid, feet and legs swollen from not moving, her heart rate was 140bpm, BP was high. There were a couple of paramedic call outs but she was never taken in.

Finally, a nurse who was visiting her called an ambulance. That was the most horrific night of my life. We had to drag her out of the house and into the ambiance. She was screaming and kicking because she was so scared but she needed help. She was becoming violent and lashing out through fear. At one point, her eyes rolled back and I thought she was dying. It looked horrific and I can't get that image out of my head. It's hard to even write about it.

At hospital she needed IM Lorazepam due to the state she was in. She thought every single person she saw was out to kill her. She ended up staying on an acute ward for 5 weeks, until a psychiatric bed became available.

She was transferred in April and by this point, she had improved somewhat. She was still incontinent and not walking. She was talking by this point though. She was on Mirtazapine which seemed to really help her appetite and mood. She lost 2 stone in 2 months due to not eating.

Daughter is making progress in the sense that she will now go out on day trips with the nurses and is not so frightened anymore but she has become mute. She won't even talk to me and her sister when we visit her. When I talk to her on FaceTime, she looks at the floor and won't interact. She is like it with everyone now.

She has also lost a lot of hair and I don't know if that's down to her medication or stress but if it carries on, she will end up with no hair left.

I guess I just wanted to get it all out and hopefully chat to other parents who have been through something similar. It's heartbreaking and I can't seem to see an end in sight. I'm scared she won't get better and won't talk again.

I should add that my daughter has a moderate learning disability and possible Autism (waiting to be assessed).

I have absolutely no advice I'm afraid but didn't want to read and run. I'm so so sorry you are having to go through this. Your poor daughter sounds incredibly unwell and I really hope she gets better soon.
This must be so difficult for you. Please look after yourself

I’m so so sorry this is happening to your daughter & you too . The mental health facilities in this country are awful now . Obviously she should have gotten help when you first needed it back in December & for her to be on an acute ward for 5 weeks in her state is so sad . I really do hope she is getting the correct treatment now & that she does start communicating with you again. Sending you lots of care & best wishes, do let us know how she is getting on.💐

Oh @BSB30 this is very sad.
I have a teenage son and can't imagine what you are going through. Your poor DD.

I've supported quite alot of psychosis patients in work and whilst nobody can predict her recovery, I can say that you should have confidence that she's in the best hands and will hopefully receive the treatment she needs to vastly improve.

It sounds very complex when you add the learning disabilities and autism into the mix but it's actually not uncommon. All but one of the people I've supported with psychosis have had ASD and LD. I've also an uncle who suffers from drug induced psychosis.

She sounds incredibly overwhelmed, recently a poster on here with autism explained some days she just goes mute, which I've seen plenty of people, (not sure if it's relevant, but usually women with asd) do. Hopefully this is simply a coping mechanism for her mental overload and something in time she'll overcome.

It sounds like she's making progress and has finally got the help she needs from the professionals.
It must be a relief to know she's being seen, as hard as it is for you.

Whilst her struggle and journey seem so dark, I'd like you to think about how far she's come and that with the right cocktail of medication and support plans in place, how far she could improve.

It's easy to say but just take one day at a time, I know you want definitive answers as to her recovery but I doubt anyone can give you that, this may be "an episode" or something much more long term, but the main thing is the fighting for her to be taken seriously now shouldn't be anywhere near as tough since she's now on the radar.

Take the small positives and victories and get yourself some counselling, this must have been absolute hell for you.

I hope other posters have positive stories and things to share but I didn't want to read and run.

All the best for you and your DD 💐

I have 3 autistic daughters and perhaps her breakdown is due to the late diagnosis? My now 16 yo was a voluntary patient two years ago. I refused to let them section her (you can sometimes do this) as she was a voluntary patient. She was also anorexic. Is your daughter anorexic? Is her hair falling out because of anorexia?

I think a key reason for my dd health going so badly was the late autism diagnosis and not having the right support for her anorexia.

my dd isn’t really better. But she is not in hospital. She is st school, but self harms. Any ‘recovery’ feels fragile.

I got a lot of my info on section etc from the young minds website. At 19, you could look to getting a CETR. You will have to become her advocate. https://www.mencap.org.uk/sites/default/files/2018-04/2017.134%20Information%20and%20advice%20resources_Care%20and%20treatment%20reviews.pdf

There is a big drive not not have people with autism or LDs in hospitals, the outcomes are not as good and the focus should be on being treated in the community. CETRS can focus on getting extra money for this. While it didn’t help that much in our case, it brought the right people around the table for our dd.

is she in college? Does she want to go? Does she have an EHCP? This may be another way to get the right support for your dd.

i am sorry you are all in this position.

if there are signs of improvement then this is unlikely but has there been any thought given to this not being a mental health issue? I’d want to rule out CJD.

Has your daughter got an advocate? She needs an independent advocate, to make sure she has her voice heard.

I would also want to make sure they gave ruled out a physical illness.

Have they looked at NMDA receptor encephalitis.

https://www.encephalitis.info/nmdar-antibody-encephalitis

She sounds so poorly, it must be so difficult for you all.