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.

She has also been prescribed sertraline which my psychiatrist has told me can induce psychosis. The ops dd needs proper assessment/diagnosis rather than a gp throwing a generic solution at her.

Any news Bepis?

I got a letter through today saying that the Early Intervention for Psychosis team are coming out to assess her on 25 January. They are coming out to the home so that is a lot easier.

My daughter has been a bit up and down. She went out today for a walk with her stepdad which she asked to do herself. She is currently sleeping downstairs with us (I need my own bed - bad back). Last night she kept waking up, tapping me and saying she was scared. I held her hand and she fell to sleep.

The issue of her sister being on the phone seems to have completely gone now; she never mentions it. It's moved into constantly asking if someone is on the back garden. She has also started asking if she is going to die. I asked her what makes her worry about that and then she mentioned the ice cream van driver. She thinks he is going to kill her because he is sat in the front seat of the van. Explained that he sits there because he drives and that's where the pedals are. She seemed ok with that and understood.

She told me today that she's scared of everything.

On a positive note, she is eating and drinking fine. No longer wetting herself and is sleeping better.

I've had to go back on my beta blockers due to the high stress. Heart was racing and I was tachycardic. Came off them about 6 weeks ago (was on them for anxiety) but heart rate was 110 resting and up to 140 walking around. It's a lot calmer now with the meds though.

You're a wonderful mum Bepis

Well done, Bepis. One day at a time, she's moving in the right direction!

How did the assessment go OP?

Hi

Two lovely nurses came out to speak to my daughter and they just gathered some information and asked DD a lot of questions. By the time she was assessed, she had improved massively and was actually sleeping by herself, watching TV again and she was back to her normal self. The nurses said they would take all the information back and present it in a weekly meeting they have with psychologists and other professionals. She said that a plan would then be made as to whether DD stays under them or gets passed onto another more suitable team. They said to keep her on the Sertraline.

We then had a visit from the police officer about what happened with those kids kicking the door. She was updating us and wanted us to sign some forms. DD seems to have gone downhill again since this visit and has gone back to not talking, not watching TV, not really eating etc. I'm wondering if the police visiting was a trigger for what had happened previously.

I have spoken to her GP and she has agreed to put DD up to 75mg Sertraline for a week and then increase to 100mg.

Thank you, such a lovely comment 😊.

Phone the early intervention team and update them on the change. They need to know before making their decision , they also need to know her presentation had changed for the better when they saw her and how changeable it's been lately

Good point, thank you. I will call them and update them on the change since they visited. I'm hoping it's just a setback and that she will pull out of it again. Definitely seems linked with the police visiting.

OP, this sounds very familiar to me. You could be describing my son. Please go back to your GP and explain you are inclined to think this is a psychotic episode and ask to be referred on.

Unfortunately those of us who have a child with a diagnosis of ASD for example can be blissfully unaware, till it happens, that our children can also develop other conditions like bi-polar disorder and schizophrenia.

I speak from experience as a mum.

She’s at an age where schizophrenia can begin to appear. Usually it does appear later in women, but earlier onset in the late teens is not unheard of.

it may not be that, but it shouldn’t be discounted as a possibility. I‘m glad she’s receiving medical attention.

With kindness Bepsis, I don't think we can keep looking at this as set backs, it's been a month now of the hope she just needs sleep and then she gets ill again, I've no doubt the police visit set her back but the team need to see how changeable it is and how triggers set her back so much. You see snippets of good and then she drops back, you have to explain that to the early intervention team, I wouldn't want them making their decision on the hope that's it's all gone away.
You're doing amazing with this, your love will be really helping.

I agree with the age being right for Schizophrenia but I also saw these symptoms in my son who went on to have a diagnosis of Bi Polar disorder. His is rapid cycle.

In fact when I was reading the opening post I couldn’t believe what I was reading it was so close to home.

Glad you got seen Bepis and they will put you with a team. I would maybe write a diary - could even do it from on here of what she has experienced to date and the cycles of improving worsening improving. And make clear they saw her during an improving period and she worsened after police.

My son was brought in under emotional health team and he is being moved to autism team when availability so they can move teams, the main thing is to be in the system but also to make them aware of the worst of it as well as the good days. Mine was a bit similar (though non verbal so we don't know about hallucinations / delusions) he has a diagnosis atm of autistic catatonia which causes muteness and lack of movement. His was triggered by police as well. They are not sure on psychosis, are going for no atm. Its difficult as extreme anxiety can manifest in a similar way.

I have no idea how you are keeping going OP. Keeping a diary (as suggested below) sounds like a good idea, so you can show the professionals. But I strongly agree with another poster that you have to update the community mental health team asap, even if you feel she is doing a bit better today. They need to see the whole pattern, how she responds to stresses etc. Your daughter is so lucky to have you.

Silkie, I’ve been wondering how your darling boy is doing. I think of you both often.

I’ve seen the catatonic state twice. Once was a young man about 30 years ago. I went to the summer fete at the local autistic residence for young adults when I was home on holiday and I met him there.

The other person was my darling mum who had Bi Polar disorder and her depression which happened twice in her life as far as I can recall lasted a few years each time and during that time she was catatonic. I didn’t know it was a thing until I had my recent health scare and afterwards when going for counseling I said to the therapists - you may not believe this but my mum was catatonic and she replied yes, I believe you, it does exist.

Much love to your darling boy.

Sorry, just wanted to acknowledge what you said about anxiety. It’s similar to when a person stims verbally. When does it become Tourette’s.

We put a lot of my sons recent deterioration down to anxiety before we thought - nope, it’s beyond that now. And it was. It was Bi-Polar disorder.

And we also did the same with his stims till one day we knew it had crossed a line to Tourette’s.

Thanks for thinking of us Desert. Still in hospital and really want him home but does give lots of access to the best doctors in there. Saw him tonight. I am dubious it’s just anxiety but that is what psych is saying as well as catatonia.

Sorry to hear things are still up and down @Bepis 😔
I would definitely mention the events following the police visit to the relevant team, however it does seem to be abit more serious than setbacks now, like a PP said it’s been going on a while. I hope they listen to you and act fast. Thinking of you and your daughter, supermum x

@Bepis thank you for the updates. Good news, but also still worrying news.
Please, for the sake of your daughter, give the team all they need. If you are too overwhelmed, print off this thread and give it to them. Please.
You are a wonderful mother: please do this.

@nowwhherredowestay Hi, I thought it might be easier to send all my notes that I have been making to the nurses who came out to see my daughter. DH is going to drop them off in person as there is only a postal address. It does seem like she has 'set backs' and it will be something that triggers her. She was doing so well until the Police visited which seemed to trigger the fear off again. You are completely right though, I wouldn't want the Psychosis team thinking everything is ok now. Thank you for your kind words, I don't feel like I am doing well with it though. I feel so helpless, just wish I could make her better.

@DesertRose64 I spoke to the GP on 27/01/23 and she is aware the Psychosis team are involved. She came across as saying that we should leave it to them really and for her not to get too involved (that's how I took it). I am sorry your son also went through this, it is the hardest thing I have ever had to deal with. I also feel that my daughter's condition is beyond normal anxiety too. I have suffered with anxiety my whole life and my daughter has since 2018 but this is on a whole other level.

@Silkierabbit I have been keeping a medical journal sort of thing. I will post todays entry at the bottom of this post and you all can let me know if it will be any good for proffesionals to refer to. I am sorry to hear about your son also and that he is currently in hospital. How long has he been there? That is what the mental health nurses said too, that extreme anxiety can manifest in that way.

@Hairyfairy01 I don't know how I am keeping going either haha. In all fairness, i could not have done this without DH. He has been absolutely amazing taking over when it's got too much for me and when I have been unwell. I do not know how a parent could do this alone, they are superparents.

Example of journal since daughter went downhill again

26/01/23

12:11 – Police visited again with the forms we needed to sign. Did not have enough forms yesterday. She also needed E (daughter) to sign as E is classed as one of the victims. E came into the kitchen with no issues and was confident while signing her name.

13:30 – 50mg Sertraline taken.

16:00 – E spent the afternoon sitting on the puffy in the living room, being very quiet and staring at the floor. She went back to whispering and did not want to be alone, saying she was scared. She started asking again if someone was round the back.

27/01/23

12:00 – 50mg Sertraline taken.

14:20 – GP telephone appointment with Dr. Medication dose increased to 75mg Sertraline for a week and then increase to 100mg on 03/02/23.

20:00 – 25mg Sertraline taken.

28/01/23

11:15 – 75mg Sertraline taken.

29/01/23

11:30 – E laid in bed on the floor in living room. Did not move all day. Had to be encouraged to go to the toilet. Not been in 24 hours. Had wet herself. Went to the toilet with me and we cleaned her up.

12:15 – 75mg Sertraline taken with lunch. Panini and chips. Drinking well.

30/01/23

11:00 – E needed me to go to toilet with her. Asked if anyone was after her and said that N (stepbrother) ‘provoked them’. I asked E how and she said he “went like that with a pencil”, doing a jabbing movement with her hand. E opened the blinds herself and seemed ok with that.

11:20 – E had a late breakfast and started talking in her full voice again. She had been whispering for the past couple of days to the point where I could not hear what she was saying and had to ask her to text me.

14:15 – 75mg Sertraline taken. 1 gummie vitamin taken.

14:30 – E came into kitchen to bring her food tray in. Asked if anyone was on the back before she would come in. I told her to look. She looked and I asked if she could see anyone. She said, “I don’t know”.

I have notes going right back to the end of December but would probably have been too much to post them all on here. Do you think they will be any good?

Yes those look fine - I would definitely add things like thinking the ice cream van driver was planning on killing her. The meds don't think you need to include every day could just do on sertraline from x day to date and this quantity for these dates. Food and drink is good if have time but main thing to put is strange behaviours and thoughts, esp thoughts.

Mine has been in since September and they are struggling as he's non verbal so hard to tell why he is doing the behaviours. Like he's taking all their fire alarms apart which could be psychosis or it could be he's angry with them and hates being in hospital. It always seems to occur when he has an issue with ipad and he grins after. But with no speech its very hard to know. They've gone for autistic catatonia which it is, its just whether there is more than that.

I updated the psychosis team and she said that they had made the decision to discharge her from their services and refer onto the Community Mental Health team. She didn't think it was Psychosis as she said it doesn't get better and then worse again. She said it's always there and continues to get worse and worse.

DD really bad today but it is because her Sertraline dose has been increased. It seems to increase her anxiety at first before settling it down.