Private diagnosis for schizophrenia?

[YouAreMyRain]

It's me again.
I have posted a similar thread in children's MH on here but there's not much traffic.
I thought some people on this area may (unfortunately) be able to help.

I have two adopted DD. DD1 is 8yo, under Camhs, lots of MH issues. We have had a horrendous few days with her trying to drown her sister (6yo) in the bath and saying that she wasn't angry, she just had a "feeling" that she "had to hold her head under the water until she stopped breathing".
I have spoken to Camhs and PAS, who were considering removing her as a risk to the other children (I have a one yr old DS who she has previously threatened) but have changed their mind.

Anyway, the main reason for this thread is that I am concerned that she is showing early signs of schizophrenia or a personality disorder.

Camhs in our area have said that they would not diagnose either of these until late teens or early twenties as the personality is still fluid until then.

I would be happy to pay privately as she may need meds and specialist treatment etc but I don't know how to find a private child psychiatrist who would do so. Any thoughts?

Thanks for everyone's posts. I have decided that a diagnosis is not my priority at the moment, and I will get busy with the emails tomorrow. Annoyingly, Camhs don't give out email addresses (I could do some educated guesswork though)

A genetecist referral should also be done to look for any other possible causes. Fasparent makes good points about getting support from and making contact with the relevant groups.

Don't you dare blame yourself for any of this Rain!

Get those assessments done, once you know what has caused her problems you will be able to support her and feel confident that what you are doing is right as it is also being done by lots of other parents who are probably going through a similar problem. The important thing is that someone can get into her head, fully understand why she behaves like she does. Then you will be able to help.

Rain I am so very sorry.

I agree with cottageinthecountry, dear Don't you dare blame yourself for any of this Rain!.

And I agree with Kristina (as always!) *The most important things is her life right now is not her relathionship with her psychotherapist . It is

1. stopping her doing serious harm to herself or others
2. Stopping her placement with your disrupting , because you are her last chance of ever having a family life *.

I also agree wit Cottageinthecountry when they say Has she ever had a brain scan? They don't like to do them on children but they might in your case. I think they can just tell so much more now.

I have no experience of this; I just wanted to say I do so much hope you will get the help you need.

I know you have said I have decided that a diagnosis is not my priority at the moment, and I will get busy with the emails tomorrow and I wish you all the best, and long term I hope you will get all the answer you need to help you care for your daughter the best you can.

I have been thinking about this, read through most of your thread twice, and looking on the internet so I will just share my thoughts and please please ignore anything that I say that is not helpful.

For the record, as you know Rain, I am mum to an adopted ds (4) and birth dd (10).

I have not experienced any type of problems like this.

My very limited experience is of trying to get a dyslexia diagnosis for my dd which proved hard enough. I know there were problems early on but it took a long time. I was given the impression a 'label' was not helpful but I have to say if the label is correct then it is helpful. Because once you know what is wrong you have some idea where to start. A friend of mine has a son who has an ADS label but what has worked best for her is really finding out what approach works best with the way his behaviour presents. Which is not sometimes how the asd label would say, so if the diagnosis is wrong it is not much help!

It's been a long slog for my friend. As she was working through her son's situation I was wondering about Asperger's, PDA and ODD for my child. By the time we got a diagnosis of dyslexia I was relieved I could at least start to research something and begin to understand.

I know this is very different to what you are going through. I cannot begin to imagine how hard it is for you to try and get the help you need and I just hope you will get some answers as things unfold.

If I were in your shoes I would do all the useful things people have said here. I would also collate all the things you have written in this thread into your dd's story (you may have it written down elsewhere, of course) and especially as mamadoc says Emphasise where she has put herself or others at risk.

I would then contact Edward Timpson, who did a webchat on mumsnet recently. I would contact him as a regular reader and contributer to mumsnet and because he said lots of things about post adoption support etc when at mumsnet and I think someone should hold him to account for that!. I do not think it can do any harm. But if anyone else thinks that is a bad idea, please say!

Edward Timpson Parliamentary Under Secretary of State for Children and Families

He did a web chat thing here a while ago. I am not sure if you posted on it or not and it is too late and I am too tired to check. But you will probably remember it.

www.mumsnet.com/Talk/mumsnet_live_events/2273930-Live-webchat-on-adoption-with-childrens-minister-Edward-Timpson-MP-Tuesday-6-January-1-2pm

Explain how much you have tried to get help. Ask him to intervene on your behalf. For example could you tell him that as you said Yesterday PAS were asking me if I wanted to make a safeguarding referral!!?!

You have said your daughter has heard voices. Is that right?

I found this web page, no idea if it is any use. I hope it is not unhelpful. If it is, please ignore it.

www.intervoiceonline.org/2577/young-people/parents/dont-panic-if-your-child-is-hearing-voices.html

Also, there is quite a lot of information on the internet about childhood schizophrenia (or Pediatric schizophrenia or childhood-onset schizophrenia). I know lots comes from the USA and it sounds like they are more ready to diagnose it than here in the UK. But some is from the UK.

Is this a reputable site?

www.kidsbehaviour.co.uk/childschizophrenia.html

One site I saw compare schizophrenia with autism (I know we usually call is asd but in the article there they call it autism) and explained that at one time it would have been diagnosed as schizophrenia.

www.medicalnewstoday.com/articles/192104.php#childhood_schizophrenia_and_autism

So I wonder Rain if the asd exploration is ongoing now when you see them next, they will be able to shed more light on things.

Rain you are just so desperate you are considering anything that might be the case. I can totally understand why you are doing that.

I agree with everyone who says you need to let the people with the power (to help you) know that the adoption may break down if you do not get help. Or perhaps something even more terrible may happen.

Are you shouldering this burden alone?

How much support are you getting from the key people in your and your dd's lives?

Thinking of you Rain and all three children.

What's that thing I normally say please feel free to ignore all my comments.

I saw that documentary too and do not think that child has schizophrenia.

I work in a very 'niche' area of adult MH now and the amount of US migrants I see with incorrect diagnoses who have been medicated since childhood is shocking.

I'm sticking my tuppeny worth in. Diagnosis is just labels, if labels lead intervention that's great. If they don't they don't help. Treatment is where it's at. You are 6 months into a 2 year plan. You need to stick with it. Your poor child is very disturbed; there is no magic wand.

You are pretty aware of your child's issues, she likely had less than optimal brain development in utero coupled with negative and neglectful early experiences. She may never fit a clear diagnosis of anything as the issues that have shaped her are thankfully not common (sAdly not rare either).

I am trying to say she may be too complex for a simple label. She may be one of those children professionals need to view holistically but use their judgement and experience to suggest the best course of treatment.

I think yes to a proper risk assessment, you need to be in full partnership with camhs and them accountable.

So she doesn't fit a rad category, but certainly has a lot of rad ish problems/experiences. I didn't know psychotherapy wasn't supposed to help . The thing a few years ago was dynamic dyadic psychotherapy for kids post adoption with attachment issues .

I agree that using the safeguarding issue in order to get help more quickly makes sense, but you are going to have to be careful that doesn't just fast-track her into being labelled as dangerous or too complex.

Use it to try to unpick what's happening, use it to get the neurodevelopmental assessment, genetecist investigations, neurology scans, education psychology assessments.

Diagnosis is the key but not mental health diagnosis.

cottageinthecountry do you think involving an MP might help or could it make it worse for poor Rain to get some help here? I don't want to suggest something crap!

I would be taking it one step at a time, neurodevelopmental assessment first, all the medical checks etc, identifying causes.

I would be involving my MP only if there was evidence of neglect in foster care. If there was then that should be legally challenged and a case brought on behalf of the girl, against the LA. This is the kind of thing that needs to happen to ensure LAs take foster care standards seriously. Then, if there were any sign of a cover up or denial I would involve an MP.

The fact that the LA seem to be downplaying the very serious behaviour makes me a little bit suspicious but Rain has enough on her plate without going through battles with them. She is doing the right thing by focusing on finding solutions for her child first.

But I'm just another layperson, I don't have the answers.

Thanks cottageinthecountry you raise a very interesting point. I was thinking of just leverage, that if she had a prominent MP were interested in the dd's case then he local authority, or whoever, who seem very negligent to me (and I am also just a lay person too!) might just be inclined to take her desperate pleas a bit more seriously. This has been going on a long time.

But if the action of involving the MP would be detrimental I would not want to suggest it.

Rain, I don't have any good advice to add, but just to say I am thinking of you. I can't read your posts without my heart in my mouth; I am horrified at what you are having to go through.

Ok, so I have spoken to the school, emailed my notes and my account of recent events to the senco/DHT, they are getting advice on wether to do a safeguarding referral.

I have also emailed the head of PAS with a similar email (cc'd to the SW I spoke to yesterday and their line manager) but added some of KristinaMs Magic words and demanded input by ff/pas.

I don't have an email for Camhs.

Oh and a local charity are also doing a referral.

Worst case scenario is they get bombarded by referrals and try to whisk DD away from me I suppose. Hopefully, the more people in the loop the better.

No energy for any more phone calls, DS has been in nursery this afternoon which had allowed me time for admin. Need a cuppa before it all starts again!

I really hope this leads to some more input for you and DD, I'm thinking of you all

I am so sorry you're all going through this.
I just wanted to add the thought of Tourette's syndrome, rather than Schizophrenia. I don't think Schizophrenia normally presents before the teenage years.
However, Tourettes presents in childhood, and it can be equally complex and severe. It is also treated with antipsychotic medication.

In the early days of my DDs severe Tourettes she would march up to her brothers and punch them hard in the stomach. She was compelled to do it, and at that time had no control over her actions.

People tend to think Tourette's is just about tics. It's has a broad range of presentations and has all sorts of symptoms. It's usually a sporadic presentation in a family, but it can also run in families.
I hope you get the specialist input you need.

Poor girl and poor you. I can't imagine how hard this is for you all.
The thought of her removal and you probably being her last chance of a family is heart breaking.
All I can say is she needs help now not in 18 months, as others have said likewise.
I have no info to offer but wanted you to know I am thinking of you and what a fantastic person you are to be coping with all this.
Best wishes to you and much respect for doing your best for your dd.

Champagne- interesting point about Tourette's, it's something I can explore. Thanks

Rain - am so sorry you are going through all this. My sister had a personality disorder. Am going to PM you. No need to respond. x

Champagne would tourette's be identified with a full neurodevelopmental asessment?

I've chatted to DD about these feelings she has. Apparently it's not like a thought, it's a feeling in her body that she has to do bad things. I asked her how often she got them and she said, all the time. Even as we were chatting she said she was getting a feeling to push me over on the floor and smash my head.
I said it must be really tricky getting these feelings all the time, that I wanted to help her and that I needed her to tell me when they happen, before she does anything.

She looked doubtful because they apparently happen very quickly.

Other examples she gave me from yesterday were feeling she had to push her best friend over in the playground and rip up a collaborative get well card for another pupil. Both of these she resisted because other people started speaking to her and distracted her.

There were lots of others but I didn't want to push her too much.

I don't know how significant or not her explanations are.

No response from PAS apart from a "thanks for your email" one. No response from the big cheese at PAS.

At least three safeguarding referrals have been made about this now, (school, local children's centre and a local charity) I have also spoken to the HV, no contact from the safeguarding team yet.

Two minor incidents with her hurting DD2 yesterday. One, she shut her finger in a drawer - that was one of these "feelings" in her body, two, she pushed her in the stomach on the way home -that was just because she wanted to. So she seems to differentiate between the two things.

I feel like an amateur psychiatric sleuth

I've been leaving it up to Camhs and trusting them but now there's a possibility that I could lose my child.

Rain I am so sorry. This must be torture for you and you are not getting any support which is making it so much worse. Please do document all the things your dd says and does inclining the fact she could be distracted from doing something 'unpleasant' by interaction with her friends. Might this be something you can use and she could learn to use herself, to fight these feelings, with distraction? BUT I know nothing so please ignore my thoughts if they do not help.

Do children with ASD also generally have the desire to hurt others, do they have feelings like this, is this part of the disorder?

When I was trying to work out if my dd (not adopted) had Oppositional defiant disorder (ODD)

www.mayoclinic.org/diseases-conditions/oppositional-defiant-disorder/basics/definition/con-20024559

or PDA (Pathological demand avoidance syndrome)

www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

I made a chart and plotted her behaviour against the characteristics of them both. She ended up with a few areas of each of these but nothing conclusive, nothing that made me feel one or the other was right. All could fall reasonably normally into general 'difficult' behaviour. As my dd got older her behaviour got better and when we got the diagnosis of dyslexia, and I read more about the behaviour of dyslexia (aside from the struggles with reading and writing) it all made sense.

My friend's son has some problems which could maybe be described as extreme anxiety and I think maybe some OCD tendencies. This came on quite young. I am not sure how it squares up against your dd but I know he can be quite violent.

I guess I am just wondering what thins have been considered as possible 'reasons' for your dd and have been discounted.

I know this is a very amateur way of doing things and I am sure for your dd a brain scan would show up much more but at least if you can work on some sort of record of behaviour you can have something to refer to.

I am sure you are already doing this.

I would not necessarily show the professionals your workings out in relative to possible diagnosis because they will know it all better but I do feel parents have a lot to offer in terms of insight and just keeping a really good record of how frequent these things are. For example she may mention a feeling about something and if it happens once or twice it could be quite different to it happening all the time.

I really hope the doctors will scan her brain because it seems this is where this is all coming from so it would seem logical to do it. I don't think she has a brain tumour or anything but that is just one example of how the brain can be affected by a brain tumour, something I never would have thought possible. A physical problem causing other things. Sorry, I express words in a very amateur way when talking about medical stuff, I am normally quiet articulate but this is all stuff I don't really understand but I have read and thought quite a bit about this kind of stuff.

www.newscientist.com/article/dn2943-brain-tumour-causes-uncontrollable-paedophilia.html#.VLpGX3uvNWQ

As I always mean and often say, if my comments are not helpful please ignore them.

Thanks greyhound. The PDA info - it rings so true for DD that it made me cry. It may not explain everything that's going on with her but it could explain a lot of it! I will raise it with Camhs

Thanks so much Rain I didn't read the link properly so I hope it was a valid one, I usually use Wickepdia but wanted to ring the changes.

en.wikipedia.org/wiki/Pathological_demand_avoidance

I was not thinking of either for your daughter specifically. I considered both for mine! But my daughter sounds a lot less 'difficult' to handle than yours. And has not talked of any of the specifics you daughter has like hearing voices or feeling she needs to hurt anyone.

For me when you said about the head banging I just felt that must be so awful for all to cope with.

When you said "...then at 6yo she had "angry hands that want to hurt people" and would beg me to help her. She wanted to cut herself into pieces, she didn't want to be real. She would scream that I wasn't the real YouAreMyRain and would beg me to go and get the "real" one from the garden. She accused me of leaving her in the house alone. She tried to kill herself by jumping out of a window (I grabbed her) because people in her head were telling her that she was stupid and ugly."

That sounds so delusional' and I wondered what syndromes or conditions might explain that.

So when I said ODD and PDA I was not really thinking of your dd but if that is actually helpful, just to consider them, then I am grateful.

I know under all the 'conditions' she is a real person and there is a real desire not to label, but I also sense your desperation and the fact that if she manages to really hurt herself, or worse - or manages to hurt someone else in the family then all the labelling or lack of labelling will not be able to turn back the clock!

Thinking of you.

I think DD is very complex(!) and we are unlikely to find one diagnosis that covers all of her difficulties. I suspect that she may have two or three overlapping "conditions". She has certainly presented with a lot of PDA behaviour from a young age.

The thing I found most useful about the PDA info was about it being like ASD but the child/person not liking predictability and needing some unpredictability. I was just practising times tables with my DD and she was presenting as very "demand avoiding" so I starting saying, "if you get it right, you can tickle my feet" and she loved it. I suppose if I can see patterns and treat her according to those behaviours that are presenting at that point in time, it may be a way of coping, if nothing else!

PDA might also explain why she has directed so much anger (allegations etc) at DP as she sees him as an authority figure.

I can hear my own desperation in hoping I may have a (partial) answer again! It may be another dead end but if it is then we are ruling things out and narrowing the field of possibilities I suppose.

Initially I was a bit freaked out by her "hearing voices" but apparently some children use that phrase to describe their internal monologue, which makes sense, but also makes children hard to diagnose!