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?

I don't think BM was taking any prescribed drugs when pregnant but was regularly taking crack cocaine.

Neuro developmental assessment is underway, X posted!

Fasparent - DD2 is under genetics for FAS (BM switched from crack to alcohol) she has physical features - microcephaly, epicanthal folds etc but DD1 is more likely to have narcotic related brain damage.

Kristina - what do I say to ff/pac? I can't fund anything myself, how could they help me without funding?

Full cognitive profile sounds good.

If you can find out which drugs she was exposed to you might get more of an idea of how that has affected her. Children rock when their vestibular system is messed up, it gives them orientation. They also do it if they are in pain or are hypersensitive. OTOH it might be because her thoughts are disturbing her. I don't know a lot about it but this sounds like it might be severe undiagnosed ASD.

Has she ever had a brain scan? They don't like to do them on children but they might in your case.

Apart from the bad thoughts and the headbanging does she have any physical symptoms or health problems?

Hang on in there.

OP, I don't have any real life experience to offer but I watched a documentary sled 'born schizophrenic' about a girl called Jani. I think she was about 9 and diagnosed with schizophrenia. I recommend it, even just to offer a comparison for your daughter.

FF have a fund for families In crisis. At minimum they will listen to you , understand and give you some advice .

It's worth a phone call. You need some help to move on from the status quo. Which you said was shit . And now it seems it's getting worse .

Sorry, the documentary is avaliable in 5 parts on youtube.

There was a long article in the paper, probably the Guardian, a year or so ago by the father of a little girl in the US who was diagnosed as schizophrenic very young. Might be worth searching out. May have been based on a book he wrote? I remember that the parents decided to live in 2 separate houses, with one parent and child in one, and the others in the other. This was because the girl was a risk to her younger brother. But at some stage she was hospitalised. But her condition sounded extremely severe.
I do hope that you can find more support. It sounds as though the social workers are suggesting that you are at fault in not establishing a good relationship, which is horrendous.

The link is here www.theguardian.com/society/2013/jan/19/my-daughter-the-schizophrenic , but I expect you've read this already.

I think it will be essential to look at the cause of her symptoms before any treatment or mental health diagnosis takes place.

A full neurodevelopmental assessment (I hope they do a brain scan too) should help. Once the neurodevelopmenal disorder is identified the child will have access to therapies and treatments that will improve their quality of life.

Onceuponatimetherewas' article is about the same girl as the documentary I watched. Very interesting family. I find it hard to understand how anyone could say that schizophrenia doesn't exist in children after that it.

Cottage - I thought the OP said that the probable causes were

Drug and alcohol exposure in utero
Neglect and disrupted attachments from birth

How does knowing this take the Op further forward ?

I would ask for a referral to the Elizabeth Newson Centre www.norsaca.org.uk/diagnosis-and-assessment they are a specialist diagnostic centre for ASD and related disorders. Autism in girls presents very differently and to get atrue picture of your dd's difficulties I would want her seen by a specialist diagnostic service rather than CAMHS whose services can be patchy and decidedly poor in some areas.

In the article / documentary the girl had a normal time in utero and upbringing. In the OP's case there are obviously other possible explanations for what is going on?

Kristina sorry if I misunderstand you but are you saying that identifying the cause of the problem doesn't help? if a neurodevelopmental assessment identifies autism or another developmental disorder then as I said earlier there are a number of therapies that will help the child.

Teratogenic substances cause neurological problems, not psychological problems. Untreated neurodevelopmental disorders on the other hand, might cause psychological problems because of the extreme frustration the child is suffering.

It doesn't mean that ASD might not also be an issue

ASD and serious mental illness are often under diagnosed in birth parents , as they are seen as being eg substance misusers , care leavers, people with chaotic lives or offenders, without an assessment of anything that might be behind the self medicating or offending behaviour or the disrupted family background

Neurological and neurodevelopmental problems.

Yes I'm sure that's true that disorders are underdiagnosed in those with troubled lives but it has been very well proved that teratogenic substances cause autism and other neuro-developmental disorders. The substances used have different effects on the children (although there are a lot of crossovers) so it is important to identify which substance caused it.

I do wish the government would pay more attention to fetal health, drugs in pregnancy etc.

Cottage - no I'm not saying that at all

I'm just wondering why you posted

" I think it will be essential to look at the cause of her symptoms before any treatment or mental health diagnosis takes place."

When I thought that the Op had already outlined what the possible causes were .

I now understand ( at least I think I do ) that you are saying that the child may Require a diagnosis of a neurodevelopmetal disorder, rather than a psychiatric illness . Or perhaps as well as .

I hope I have understood correctly and that I am not misrepresenting your views

Yes I agree with your on both points cottage

I'm sure complex difficulties such as these are multi factorial

Kristina OP didn't mention until quite late on the substance abuse, looking back though I also found this -

There is suspicion of neglect in the foster placement.

This is worrying - I hope you have details of this for the neuro assessment.

I think help for children with severe mental health problems is woefully inadequate. We had a very early diagnosis of schizophrenia (14) -but I agree with what's being said- that was after a long period in a forensic setting.
My son demonstrated disturbed behaviour at a young age but does have a diagnosis of ASD.
I don't have all the answers and it sounds like you are trying. It's frightening for you all and for her.

Hmm still not convinced.

He describes in the article imaginary friends at age 3 and 4 and wanting to be addressed as such which is normal behaviour. She then has severe jealously of her new sibling and aggressive behaviour.

She has a high IQ and many features of autism. It looks like Aspergers to me. I can't see much evidence presented of hallucinations or delusions which are the core features of schizophrenia also emotional blunting, apathy and intellectual decline are not present in this description.

The U.S. are notorious for having very broad definitions of major mental illness historically and currently. Rates of ADHD and childhood bipolar are epidemic there. Children are having heavy duty medication for in my view dubious indications. I am completely and utterly floored that she would have thioridazine (banned in the UK due to cardiac arrhythmia) and clozapine ( heavily regulated in the UK with mandatory blood tests due to fatal blood disorders and cardiomyopathy!!)

Sorry to derail the thread OP

Definitely go for hassling CAMH over social services as they seem dismal.
Even though she has not seen a psychiatrist there will be one on the team. No need at all to pay privately she has a right to see the NHS specialist for free and if not satisfied with them to get a second opinion on the NHS.
Always communicate in writing as they will be obliged then to put your letter in the notes and your concerns and request for help will be accurately recorded.

Eg dear Dr x (Google CAMHs service and staff names will likely be public or phone reception and ask)
Re: DD1 name, DOB, address

My daughter is under the care of your service at present.
Despite many years of her displaying severe distress and extreme, risky behaviours her diagnosis remains unclear and she seems to be deteriorating in despite of her current therapy.
I am writing to request that she has a psychiatric assessment of her diagnosis and an expert assessment of the risk that she poses to herself and others.
Then write down a summary of what has happened over time and what has been done
Emphasise where she has put herself or others at risk
Send this to the CAMH department, copied to the GP and social services
Also request to see a copy of her CPA care plan.

I hope that would get you some action.

If that fails complain to the PALS (patient advice and liaison service) of the mental health trust in writing. That will be sure to trigger a response.

Regards FAS FASD can get assessment within NHS Referrals see FASD NHS Clinic in Surry and Border's NHS Trust at www.fasaware.co.uk under partners. Also as Mentioned pervious New adoption support fund is extended too ALL LA's from MAY also includes free FASD Assessments and long term possible support, there were 10 LA's which piloted the New fund
your LA may well be one of these. What you explain doe's mirror FAS our dd has central nervous system dysfunction's, pulled all her hair out at night
every hair on her head. Has no behaviour problems though, every child with fas fasd is different and are effected in different ways hence classified under complex needs. Your Genetic clinic may well be able to referre you too FASD Clinic for assessment worth asking.

Onceuponatimetherewas - I really don't think that anyone is suggesting that I am at fault for not establishing a good relationship. Camhs have repeatedly told me that I am doing a great job and that the majority of their work is modifying parental behaviour, but that they quickly established that it's not necessary here. Believe me, I still blame myself and self-flagellate, but that is me not them!