Please help - Scared for my daughter

[Bepis]

My daughter is 18 years old but she has special needs so is a lot younger in her mind. She has suffered with anxiety for the past 5 years or so, to the point where it stopped her attending school and she had to be under CAMHS. Her anxiety was mainly around people she didn't know and new situations.

The past couple of weeks have become so difficult and I just don't know what to do or where to turn.

I noticed her hearing things and she would say to me that her stepbrother swore, or I swore etc when that never happened. That went on for a while but now she is panicking if her sister is on the phone. Her sister will talk to her boyfriend in the evening in her room (they have separate rooms) but my eldest daughter is just flat out panicking about it and refuses to go upstairs. When I finally get her into her bedroom, she will not get in bed but just sits on her bed until 7/8 in the morning.

I tried laying with her this morning so she would get some sleep and she managed an hour or 2.

She's also started putting her fingers in her ears whenever someone talks. Not in a rude way but it's become a reaction. This is within the last couple of days.

She says she can hear her sister talking on the phone at 5/6/7 in the morning despite her sister being fast asleep.

She is also zoned out (I can't think of a better way to describe it). Like when I talk, it's like she doesn't understand me. She's also started whispering instead of using her real voice and is even starting to become non-verbal.

I'm so scared, I don't know what's wrong with her and I don't understand.

I took her to the doctors today and they prescribed Sertraline. She had her first tablet tonight. This seems like more than just anxiety though.

Has anyone else experienced this? Im scared and in tears.

@Mindymomo I'm so sorry you had to go through that too, it's awful for an adult to see, never mind a child 😔. Would it be classed as sectioned what has happened to her then? She was taken against her will but she's on the Emergency Multidisciplinary Unit ward.

@kateandme Thank you for your kind words. I totally agree with you, it shouldn't have had to get to this to get her proper help. This could have been nipped in the bud early on. I feel like I failed her but I will admit, I felt completely out of my depth with it all.

@HazardaGuest I wasn't taken seriously at all. I was practically begging people but they just chucked her on Sertraline and left her to it. I am so pleased she is sleeping now too. She's had proper rest as she is a lot more relaxed on the medication. They have been giving her fluids through an IV as she was dehydrated. They had to give her the Lorazepam via an injection in her muscle. It was awful. She thought they were coming to kill her. When she was held down in the ambulance, she thought she was being kidnapped which was one of her fears. Even writing it down now I'm getting upset. Every time I close my eyes, I see the pure fear on her face. She is definitely in the right place, I am actually so thankful she is there now.

@Hairyfairy01 to be honest I'm not surprised either. I knew it was heading this way and I wanted to prevent it but it seems you can only get help when it actually happens. But at what cost and trauma to the person and the family? Her sister heard her kicking and screaming in the ambulance too and she was in tears.

@LibrariansGiveUsPower it could very well be that. I'm hoping they get to the bottom of it and get her on the right medication so that she can start to rebuild her life again.

@HangerLaneGyratorySystem the Psychiatrist has seen my daughter once for about an hour. She visited the house over a week ago but dd massively declined since then. The paramedics called the police as dd was getting aggressive with them and her stepdad. She was just so terrified that she was literally fighting for survival in her mind. In the end the police weren't needed as she stopped lashing out. So traumatic to see.

If you don't know already you should find out urgently first thing if your DD is to be sectioned, if so she'll be entitled to an Independent Mental Health Advocate:

www.voiceability.org/about-advocacy/types-of-advocacy/independent-mental-health-advocacy-imha

You'd need to google to see who is responsible for IMHAs in your area or your can ring and ask your GP, the psychiatrist who saw her or the local adult community mental health team, if your DD is unable to ask for one herself you can ask on her behalf.
It sounds like it would be good if her wishes could be heard and if she had someone outside of the family for support.

So sorry things got worse and she needed to be hospitalised.

Re sectioning when our DS had it first was immediate for 24 hours I think an emergency one, then next day we were called and said they were going to decide if to section and come to hospital to discuss with them and there were 3 people. They talked to us and then came back and said decided he was sectioned for 28 days and did we want to tell him or them. That was a section 2 for assessment and then after they did a section 3 for assessment and treatment but 5 months in they are still assessing and he's worse than when he arrived. But there is at least good access to professionals, we have 5 hospitals involved (original A&E, the children's psych one and 3 specialist ones as they are puzzled by his case) and daily access to a psychiatrist. The PMH Inpatient Group on Facebook is good. Ask them about sectioning but they should also tell you. We knew from the section 2.

I hope she gets better in there. She should be given an IMHA, ours hasn't been much use, there's also Tribunals and nearest relative rights they should go through. If she has our gets an autism diagnosis and/ or has learning difficulties there is a autism /LD keyworker and they you get CETR meetings as well as CPA meetings and weekly ward reviews. Although mine is 16 so maybe different, I'm not sure about 18. We also have a Family Ambassador. If she's in general A&E and they decide need to keep first thing is a move to a pscyh bed. There is a shortage of these so sometimes people can be placed a long way away, we were offered 1.5 hours drive away and I thought that was bad but seeing what others got it was relatively good by NHS standards.

@Bepis I wanted to reach out a hand if friendship and support. I've been in hospital (three over the course of 5-6mo). I'm not much help with children or young adults as I was mid 40s with two young children, but like others I can try and be a support if you ever need it. DM me if you ever want. If not, no offence taken: you have to do this your way -that is the best way for your DD, you and your family. With heart-felt good wishes.

Thank you for your replies and information shared, I am appreciative.

Just got an update - she had a bad night, agitated etc. wouldn't let them do her blood pressure. She ripped her cannula out of her hand. Now she's not talking and staring at the floor. She was crying and lashing out a bit when they were trying to clean her up as she had wet herself. They haven't given her anything to calm her down. Can't they give her more Lorazepam? She was so happy and relaxed on that.

She hasn't been seen by anyone to do with mental health yet and they have stopped her Sertraline completely. The diazepam and promethazine is having no effect now.

She's not slept all night and it back to sitting on the side of the bed. She slept on the Lorazepam.

Where have they taken her? A normal acute hospital or a mental health unit? Why has no one from the mental health team been to see her?

It's possible that they have stopped the medication so it's possible to observe the full extent of her condition without any meds 'masking' it, as well as to exclude the possibility that it's actually the medication causing it.

After all, if she is happy and relaxed, there's nothing to see and she ends up being discharged straight back to you again.

She's on a normal ward at the moment. Called the Emergency Multidisciplinary Unit. Nothing has been mentioned about a Psychiatric ward and no one from mental health has been to see her. Not sure why. I'm going up there at 2:00 so I will try to find out everything

That is true, I did not think of it like that. It's just awful to see her in that state 😔

I would be kicking up a huge stink. She's mentally unwell, not physically unwell. She therefore needs treatment by mental health professionals in a mental health setting, not a busy acute physical ward.
Why are they even needing to take her blood pressure? Why did they need to take bloods?
Presumably if she went in against her will they have sectioned her? Or is she free to leave?
Keep asking questions OP, sounds like she still isn't in the right place for her needs.

Don't go kicking up a stink. If she needs a mental health bed, they will be looking for a mental health bed. But there are not empty beds just waiting for patients to fill them.

Also, she does need a full medical assessment first. We are assuming that she is mentally unwell, but it could be that there is a physical problem that is giving her the symptoms of mental illness. That needs to be ruled out in the first place before she is treated for mental illness.

im sorry shes still going through this.
sadly becasue the mental health team werent the supportthey should have if she has just been taken into medical then they will need to do all the medical bits of ruling out shit first. you no could a tumour be causing this.kidney infection delirium etc. i gaurentee too they wont have the notes on whats previously gone on with your daughter so it might be worth having a copy of this to keep giving to everyone involved.
one of the big roblems awith care right now is that its literally a new doctor every shift. there is no continuity of care. so they might get to no her but then it starts the whole process from scrath each time shes moved or each new day with new teams who dont no nothing mof whats gone on or background.
so many people or falling through the cracks becasue of this or not being treated in the appropriate way.
sadly as you shoulndt have to.you will need to keep being that voice.that support,that person stompinf her feet reufsing to be moved until they sort this.
its appalling the level of care. but its what it is right now. im so sorry your dd and you all are afacing this. mental illness help is disgusting.it was 20 years ago i cant beleive we still havent changed things and if anything its gotten worse! horrific.
make sure you get up to date on what sections are what and what they effect.
not all humans work for the best of people.sadly this can be rife in mental health help too. just make sure your in the know.
would you be able tp privately fund somewhere.are you near to any places do you know?
was your gp any good.becasue as a general rule they should be cc on anything going on and or might be able to help guide you or push them on things?

@Hairyfairy01 they had to keep checking her blood pressure and pulse as it was quite high and her heart rate was around 130bpm resting. They took bloods to rule out any physical causes for her high heart rate and blood pressure etc. they just wanted to give her a thorough health check.

As far as I am aware, she hasn't been sectioned. She was taken against her will as she was deemed to not have capacity and they had to make a decision in her best interests. She's on a normal ward though, not a mental health one.

@StewardsEnquiry you are totally right, they wanted to check her physical health first as they said some physical problems can cause symptoms like these. All physical issues have been ruled out now I think. She had a chest X-ray and it's all clear. Her bloods came back ok. There were a few elevations in white blood cells and inflammation markers but only very slightly. They don't seem concerned with it. They wanted to retake bloods today but she refused.

Had a meeting today with the consultant, social care, IST and the psychiatrist. I told them I can't bring her home with how she is as I cannot care for her needs. She's completely incontinent now and won't even change ward rooms without having a complete meltdown because she thinks she is going to die. Psychiatrist said that combined with her learning disability and possible autism plus extreme anxiety, it can present as paranoia and delusions. They said the mental health ward is not right for her (as in sectioning) and they are going to look at what else is available, like a residential home while she gets better - with the view to eventually getting her home.

She's been completely taken off Sertraline now, been off it for 3 days. The only medication she is now taking is Propranolol to slow her heart rate down, blood pressure and the anxiety symptoms. Not really sure why she's not on any medications for her mental health yet. Maybe they want it out of her system to see how she presents. On a plus side, she has her own room now and she's so much more relaxed.

@kateandme I thought they would have done a scan on her brain actually to rule out brain tumours as they can alter behaviours etc. I haven't heard anything be mentioned about it but I know that would be very traumatic for her. She had her chest X-ray while on the Lorazepam but she's not on anything like that at the moment.

Yes I have noticed that it's a new doctor each shift so they have to rely on the notes from the previous but they don't always write everything up as has been the case so far. I completely agree that mental health care is a disgrace. She should have been in hospital from the beginning before it got to this stage.

Unfortunately I wouldn't be able to fund anywhere private for her, really wish I could. The professionals involved mentioned something about escalating it to senior people who can make decisions and provide funding for her to go to a specialised place who can deal with LDs and have her recover there. Will see what they come up with but I've told them I'm not taking her home in this state because I can't manage it.

I'm not impressed with dds GP if I am honest. She has not been very helpful.

I would ask if it’s possible administer a Zypraxa velotab when your daughter is agitated. It just goes under the tongue and dissolves and within 15 mins your daughter should be more settled. We use it at home when my son is in a bad place.

keep your own notes op. and keep looking at hers at the end of the bed,honestly its one of the best things you can do when shes on the ward.anytime you see those notes,look!
ask every day.remind them that she is being looked after,watched,monitored.

there is funding you can get. its why mental helath teams for your dd would have been essential help at this point!! aaaargh. its them that makes this type of funding go through.

have you any local mental health charities. or could you send an emial to someone like mind or an LD charity asking for advice.then advice on funding help?

im so sorry your in this position there is no no no no ay she should have got tot this point. my god many of us have been here from the atart and she wasnt this bad. she has been failed and allowed to get to this point. but @Bepis they failed her.never you ok. get that out of your mind. you literally could not have done more.

im not sure about what the doc was saying about the diogmosis either. voices. the whisper etc. this doesnt come with anxiety.
was this a psychiatrist who said this?
keep telling them you cant take her home. they are all relying on you stepping up.
for the right or wrong reasons they are relying on not having to furhter helping. it would be so much easier and neater if they could pack her off home with promises or advice and leaflets. DO NOT let them guilt you into it. she needs the help. THEY must now provide it.

@kateandme I will be able to reply more fully later but just wanted to let you know that there are no notes at the end of beds on this ward. I don't know what other wards are like but no notes at all here.

Ah.annoying.you say your on a general ward?

It's the Emergency Management Unit. I think it's the ward people straight from A&E go to at first.

Can you ask them what their rationale is for not having her on a mental health ward?

to be fair i wouldnt want my worst enemey on some of them

but she should be seeing a subset of proffesionals urgently not just "doctor"

Oh @Bepis im so sad to see this update what a horrible time for your poor dd, you and your family.

She is in the right place and sometimes it has to come to a horrible head for things to get better.

I think it's right that she comes off the sertraline. My experience is very catastrophic when meds are suddenly stopped but that should tail off very quickly.

I really hope they find a medication that works and she settles. You're in a terrible place at the moment but it will get better. Just keep fighting for her.

Keep talking on here and anyone you have in real life. You need the support 💐 thinking of you

Thinking of you

Aw OP I’m so sorry that your poor DD is still struggling. You’ve done amazing for her, I hope things improve soon for you all xx

I'm back up at the hospital after catching norovirus.

She's refusing to take any medication, antibiotics etc. won't allow them to inject her with something to prevent blood clots considering she's not moving or walking. She won't allow them to change her so she's sat in urine and period blood.

Her mental health is declining even more. She's just sat there staring and smiling, it's odd. She says she doesn't care if she doesn't take her medication and gets even more ill.

And yet they still have her on no medication for her mental health. Please someone explain this to me because I don't understand why she isn't taking anything 😭