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.

How are things @Bepis ?

Hi, sorry I've not had time to reply to everyone, things have been chaotic.

So dd is still on an acute ward at a normal hospital as no beds have become available yet. There is an available bed about 16 miles from me which is a specialist LD bed but we are waiting on their decision whether to accept her.

Dd still not being treated for her mental health, not really sure why it's taken this long to start treatment 🤷🏻‍♀️. Not happy about it though.

Had an MDT meeting yesterday and staff were agreeing that the mental health needs treating so she's being started on liquid Mirtazapine but she's unlikely to take it as she's refusing medications at the moment. Next step would be intramuscular antipsychotic.

I don't understand why she's not been treated when she's been in hospital a month now.

I guess it's a sign of how stretched mental health services are, not that that's an excuse. It's awful that your dd is still on an acute medical ward with no treatment.
Can I ask how severe your dd LD is normally? They seem quite focused on it, but it also appears that her main issue is mental health, not her LD? The issue of going to somewhere that specialises in LD is they won't be able to manage her mental health.

if they wanted to do better for mental health services they could. dont get me wrong im aware of how stretched things are. but from the get go mental health is given 1% or less of funding. there is also no time or specidfic training push to get more informed. this isnt about fundung. if people cared enough or thought mental illness was something wworth giving a crap about,if it was looked down on,stigmad,seen as this disgusting thing then people would be able to push,learn,educate and do sooooo much better for mental health.
ops daughter being pushed away.told what she has been throughout even this thread isnt because of funding. its total lack of care and awareness and understanding and even the want to help that done this.

i no youve been strong and it shouldnt have to be done. but im sorry as her main voice this is where you have to gther all you can and ask THESE THINGS to them and demand why they arent.
you need to either arrange a meeting with the ward manager to talk to the doctor in charge or whoever is making your daughters deicsions and ask all these questions. there is no excuse. you dont just let patient sit in limbo until a treatment come available elsewhere.

To all the people stridently hectoring OP on what she MUST do, maybe take a damper, OP has never stopped acting in her daughter's best interests and has been amazingly strong, it's not her fault healthcare is a shit show. OP I think you are so close to getting the proper care that is needed, I will pray it happens tonight. Very best of luck to you.

I wasn't hectoring. I was trying to bolster the op. Because its NOT HER FAULT the system is a shit show.but sadly this does mean that those caring for the ill do have to step-up where they shouldn't and be brave where they shouldn't.and some don't no this.some think if they wait the good old services will surely ve acting in our interests right? Nah.those of us who know.know.thye do fuck all and often not until someone shouts loud enough to make a stink.
I've constantly told op how fab she has been.because she has.above and beyond.

OP I feel your pain.

I've got a 13 year old with depression and suicidal ideation and every intervention is taking too long, is taking endles begging and explaining and re-explaining to set up.

Your daughter deserves much better, but at least she has you in her corner. Go on advocating no matter how often you get condescended to as the fussy mum. Wishing you lots of strength.

@scarecrow22 Unfortunately, there are still no answers. She has no bed placement despite having been sectioned now for nearly 2 weeks. There was a possibility of a bed at a specialist learning disability unit but they have said no to taking her as they do not think the environment is right for her.

I 100% agree with what you have said about looking after myself - that's why I had to stop staying overnight with her as I wasn't sleeping and then I was getting really unwell.

What is IAPT? I will definitely get in touch with some charities. What can they do to help? I have never been in touch with one before for support.

That is one plus side of her being sectioned, is that now she can finally get the help and people understand what I have been trying to tell them since the end of December. I knew it wasn't right and that it was more than just generalised anxiety but I couldn't get anyone to listen.

I cannot be 100% sure that the consultant was talking about my daughter when he made the comment about the coroner but they were discussing her surrounding that comment. I have let it go because I genuinely do not think he meant it with any malice - I think he just didn't think before he spoke. I have spoken to him since and he has been fine with me.

Thank you for your kind words.

@Strawberrypicnic Thank you for this suggestion. It does sound a bit like depersonalisation. It is like she completely shuts down and shuts everyone out, almost like she cannot hear us talking to her but I know she can.

@HangerLaneGyratorySystem When she got sectioned on 3 March, they mentioned her being referred to an IMHA. I haven't heard anything yet but it is in the process of being sorted out apparently.

@Onceacheetah I am so glad that you got the help you needed and that it changed your life. I hope that it can for my daughter too. Were you in a mainstream psychiatric hospital? What was it like? I have no idea what to expect for her.

@kateandme Everyone has been really great and have included me in everything, meetings, medications etc. They always seek my viewpoint which I am grateful for. They haven't mentioned any funding for specialist places. There aren't many options left now unfortunately. One LD place where they had a bed have rejected her, the other place has no beds available for at least the next 6 weeks. The only place left is a proper psychiatric ward (not an LD one). They said that LD services would go in and support her though and she would have her own private room.

@Silkierabbit My daughter was sectioned 12 days ago now and they still have no idea where she is going for treatment. It is so frustrating but I know they are trying really hard. What happens when it comes to the end of her 28 day section 2 period? Does she then go onto a section 3 or will it continue on another 28 day one?

@Hairyfairy01 It is bad she is still on the acute ward. They don't have the facilities to care for her and the staff are not trained in mental health and learning disabilities. My daughter has a moderate learning disability but she could still do things like wash herself, go to the toilet, make basic meals etc. She could hold a conversation, read and write. I think they are focused on it because they also suspect Autism so they want to make sure they don't put her into an environment that she cannot cope with.

@LanternGhost Thank you very much. I hope she is nearly there to getting the treatment she needs.

@ThreeLocusts I am so sorry to hear about your child also suffering. It's awful when you feel like you cannot do anything to help them and I agree with you, interventions take far too long. It took me 2 months before anyone would listen to me and they finally kept her in hospital. If ever your child is threatening to harm themselves, do not hesitate to call 999 for help.

Update - My daughter has been taking her medications, she is now on Diazepam and Mirtazapine. She has taken the Mirtazapine for 2 days and I can see improvement. She has eaten some food today which is a very positive step. She is more 'with it' and engaging more with people. I hope this is the start of climbing out of the hole so to speak. I am going to see her on Thursday for the day.

Yes, I was in a mainstrem psychiatric hospital. It was surprisingly calm and reassuring. I felt safe there, although there were other very sick people there, and they could be loud while distressed, I still felt safe. I actually have a few nice memories of it! It was like a safe cocoon away from the world. Since being discharged I haven't needed any further help, I was in for a breakdown brought on by alcoholism and because of the admission I got top class support afterwards. I hope this is the similar kick start for your daughter's treatment and recovery. I wish you both the very best xx

Thank you so much for telling me what it was like. I have no experience at all with this. The way you describe it sounds perfect for my daughter and I hope that she has the same success in recovery as you have had.

It's a section 3 after the 28 days I think, that lasts up to 6 months and renews if needed.

Thank you. She's definitely not going to be ready to come home on 30 March. She's only just started taking her medication the last couple of days (refusing before).

You're very welcome and if you have any other questions, please just ask. Every day she's in there and getting the medication is a day closer to being herself again. I hope you can use this time to recover from all the terrible trauma YOU have been through..

Thank you and I admit it has been traumatic for me and the rest of the family but I don't like to focus on me lol.

On a plus side, my daughter is starting to eat again. She has been taking her medication for 3 days now and im starting to see an improvement. She ate her tea last night and she ate all her dinner today which is a massive improvement. She's also going to the toilet instead of wetting herself and she is talking a lot more now.

@Bepis this a brilliant update - so pleased to hear she's eating. Long may the improvements continue. Small steps but amazing.

We had sadly a very different experience in a unit.but I didn't want to say because it feels like I'd shit on your hope! But then felt totally disingenuous to sit and not.sorry @Bepis

Am I supposed to have a copy of some form of treatment plan for dd? I am classed as her 'nearest relative'.

She's also not had a wee for 2 days and not had a bowel movement for over a month. They feel her stomach but I feel there should be more tests being done, like a scan or something on her bowels. Just worried

I've never been given a treatment plan as such but am invited to ward reviews once a week and to CPA which are every 6 weeks and CETRs if asd or learning difficulties every 3 months. Plus can speak to hospital and psychiatrist daily and have an autism keyworker arranged by hospital. But I do have to ask re meds etc.

Re urine / bowel yes I would be quite concerned about that. I'm not medical so not sure exactly what should be doing - this can occur in catatonia, if its that then lorazepam is usually first course of treatment but medical conditions need to be treated to like does she need a catheter, has she got a uti, do bloods etc need doing. I don't know exactly what but they should be getting a medical hospital doctors views as well if needed.

It would take a nurse or HCA very little time to do a bladder scan OP, I wouldn't be afraid to demand that. I would also hope she has been referred and seen by a dietician as I'm presuming she is currently nutritionally compromised as her oral intake has been so poor?

Op that's not possible without severe organ failure or damage.a bladder fills within at most and in need of urination within 10 hours. That's about 2 cupfulls.is she drinking then? She needs urgent medical attention now! It is very very da gerous to go that long without urination.
Shock,stress and medication can cause constipation and urinary lessening.but never rest long.
Could she not be telling the truth?
It doesn't matter where or what age your child is you can still advercate for them@Bepis .there are rules yes on how much they need your permission or say once aged.but you very much as a loved one or concerned person can stand up for her.

Hi, sorry it's been a while since I updated.

So DD did go 2 days without having a wee but then the morning of the 3rd day, she did a big wee in the toilet. She seems to be holding it all day out of some sort of anxiety regarding going to the toilet and then she will end up wetting herself through the night.

She still hasn't had a poo in 6 weeks. They did an X-ray on her which showed she was moderately to severely constipated. She has been having laxatives but they aren't moving anything so tomorrow she is going to be having an enema 😬.

Her section 2 detainment is nearly over and it's looking like she will be detained under section 3 now. She is still on an acute ward at a normal hospital but is there is looking like a good chance she could move to a local LD unit in a couple of weeks which would be brilliant.

Dd is eating now as we are making sure she takes her Mirtazapine every night. I even squirt it into her mouth if she refuses to take it herself. She's still very quiet and not talking much but hopefully that will improve as she keeps taking her medication.

Yes she is under a dietician now but thankfully, she is eating ok at the moment. Her appetite massively improves when she takes her medication.

"She's still very quiet and not talking much but hopefully that will improve as she keeps taking her medication."

It will improve, from personal experience. I barely spoke unless I had to, and even that was an effort (but I was 46yo), and at my worst stammered badly when I had to talk at all. She is exhausted, not just by the last few weeks but probably months before masking her distress - ironically because you are a wonderful mum and person and she didn't want to upset you. She will also be processing her surroundings, changing staff, her physical symptoms, uncertainty about her future...

Moving to a more stable place, where they will have a lot more experience with people with her sorts of LDs, could be a game-changer. But it will still be very gradual.

Keep the hope. If any mum/family can do this it is you and yours.

I keep you in my thoughts very often. X