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Getting increasingly frustrated and not sure what I can do. Can anyone help?

(20 Posts)
nodiagnosis Sun 16-Feb-14 21:22:06

Appointment with paed tomorrow. This is the 3rd appointment. Each appointment is 6 months apart. I am told that is standard practice, to see paed 6 months after initial appointment in case any further developments have occurred.

I am tearing my hair out and afraid I will not come across very well tomorrow at all, which, if my frustration begins to leak out, will be counter productive imo.

DD began exhibiting worrying behaviour before she was 1yr old. I took her to see HV, told to ignore, behaviour continued, returned to HV, was referred to GP. GP asked what HV had advised, I explained. GP repeated to ignore and said DD would grow out of it before she was 2 yrs old, and to come back if it was continuing at 2.
I tried to ignore. Made absolutely no difference, so I decided to keep following the advice to ignore, and DD was the same at 2. Back to GP. GP says children grow out of it by 3 years old. Continue to ignore. Another year goes by. No change.

Nursery are becoming increasingly worried about DD's behaviours. Back to GP. GP refers to paed, and says to continue ignoring behaviour.
Get a paed appt about 6 months later. Paed says to ignore unwanted behaviour and reward good. I said that DD does not respond to positive reinforcement, as I have been doing this. Said I have been ignoring the unwanted behaviour for almost 3 years now. It makes no difference. In fact, if anything the behaviour is more severe.
Paed says children generally grow out of these behaviours before they start school. If this does not happen, get another referral to paed.

DD starts school at 4. Teaching staff are shocked at DD's behaviour and levels of understanding of things, they speak to me and ask me for advice. I give them the advice I have been given since the behaviours started. They find DD extremely difficult. They say DD needs 1 to 1 support, but due to funding issues, they cannot provide 1 to 1 without a statement. They advise against applying for a statement at that time because there is not enough evidence to support DD's case, so they advise that we begin gathering evidence of DD's difficulties.

That's when things really moved up a notch. The SENCO gets involved and the teacher and TA. In comes a home school liaison worker to help me with managing DD's behaviours, a specialist teacher, another referral is made to see a paed by the school nurse, who also has concerns. DD is assessed by CAMHS tier 2, who advise a further referral to CAMHS tier 3, a kids charity offers DD therapy, so CAMHS back out because we cannot have both. I am happy with this.
There is an application made for a place on a grow project, and the EP who runs such projects observes DD and shares his advice (for things the school can do).
There are 2 EP reports, both stressing that DD needs 1 to 1 supervision. Another home school support worker is drafted in, followed by another.

Then we saw the paed (6 months ago). All evidence and reports up to this point were sent to the paed. There is a playworker who works with DD while I speak to the paed. The paed has many letters on her desk wrt DD.
The appointment lasts about 20 minutes, after which the paed says DD complies with what is being asked of her, even if it is under duress, maintains good eye contact and therefore as far as paed is concerned, she will not refer onto a developmental paed, because she doesn't think DD is on any spectrum, it is all about managing her behaviour. Paed says having a diagnosis wont change anything, (oh yes it bloody will, it will make explaining DD's needs a darn sight easier than it is now fgs!!), and paed declares that in her opinion, there is a possibility that DD has issues as a result of parental attachment theory, because I had a bit of PND when DD was a baby.
I don't believe it is that.
All professionals working with DD were deeply disappointed in the lack of diagnosis, and said the only thing we could do was gather yet more evidence, which we have spent the last 6 months gathering, although the SENCO did speak to the paed on the phone, but what was said I do not know, apart from that the SENCO thought there must have been a misunderstanding and there wasn't.
The SENCO was visibly shocked when she heard the paed said 'this is not a neurological issue, it is a behaviour management issue.'

Now we have the follow up appt tomorrow, 6 months has passed, more evidence has been gathered and I am sat here thinking WTF is the point??

It feels like a very cruel game to me, to get DD and myself to go through a battery of assessments for 6 months, only for the paed to utter those golden words 'yes, there is reason for further assessment by a developmental paed' or 'no, there is no neurological issue here (because DD maintains good eye contact FFS!!!!).

I can barely believe that a practising paed in GB today will decide a child needs no further assessment, based not on numerous reports from other professionals working in the field of children with special needs, but because the fucking child maintains good eye contact!!!! and does what she is asked, which was a fun thing to do btw, under duress!!!!!!

Please calm me down, and give me some advice, because if the paed waves us away tomorrow, I do not know where we go from here, because I cannot go through this indefinitely, gathering pointless evidence, putting DD through pointless assessments every 6 months for goodness knows how long.

It's been almost 4 years since we saw the first paed, and the concerns have been raised by school for the last 2 years, and still no diagnosis, nor assessment by developmental paed. angry

Handywoman Sun 16-Feb-14 21:42:37

My advice? Just go there, let the appt unfold. And if you are fobbed off again, simply refuse to leave the building without referral on for multidisciplinary assessment. After all, how can they say she does/does not have ASD without an assessment? Poor you. Good luck. thanks

nodiagnosis Sun 16-Feb-14 21:49:40

That's good advice, thank you Handywoman.

It rather feels like no matter what I say or how DD behaves, the paed will find a reason, no matter how flimsy, as to why she wont be referring onwards.

I'm not really sure why the appointments are set up with this paed tbh. Is this what they call an assessment? Is DD being assessed in this 20 minute appointment? Or, as the SENCO believes, is this appointment to deduce whether DD has issues which could be assessed/diagnosed/helped by XYZ paed, which this paed then refers to?

All I know is that this paed is a general paed. What is a general paed?

nodiagnosis Sun 16-Feb-14 21:51:00

What is a multidisciplinary assessment please?

Hanginginthere123 Sun 16-Feb-14 21:55:54

It would have other team members there : ours was a Paed and specialist SLT but depends on where in the country you are exactly who is involved ie varies region to region

nodiagnosis Sun 16-Feb-14 22:03:23

Oh ok, would that be the same paed again? I have lost faith in her tbh.
Also, the last appointment, the paed was asking the playworker for her input which is fine, but the playworker was insisting that there were no concerns from a neurological POV because DD retained the eye contact and did as asked despite it being under duress.
I wanted to ask what the playworkers qualifications were to make that judgement but didn't as I didn't want to appear rude, but maybe I should have done.

Hanginginthere123 Sun 16-Feb-14 22:07:54

Could be the same Paed - could be a different one depends on your area
I would bypass and get a second opinion from someone who is a neurodevelopmental paediatrician in your area (rather than general which covers everything)

nodiagnosis Sun 16-Feb-14 22:08:12

Another thing that frustrates and angers me is in the desperate quest for enough evidence to enable a diagnosis, the SENCO is asking everyone who works with DD to push her to her limits, to demonstrate DD's reactions and record them, compile a report, to create more evidence for a diagnosis that the paed seems unwilling to want to pursue.

Poor DD is being poked (metaphorically) by so many people. It's becoming like a freak show, push DD's buttons to get DD to show you the same reaction she has shown to everyone else, over and over and over again.

I want to scream, leave her alone. I cannot imagine how DD feels. sad

nodiagnosis Sun 16-Feb-14 22:09:00

Can i ask for a 2nd opinion tomorrow? From a neurodevelopmental paed?

Ineedmorepatience Sun 16-Feb-14 22:16:51

Do you think she has Asd?? Sorry if you said that in your OP. TBH I think that not following the tier system at camhs has probably held you up. Dd3 was diagnosed at tier three at camhs by a psychiatrist who did the DISCO assessment which was designed with hard to daignose people [often girls] in mind.

I agree with handy and think you need to push now for the developmental paed or a multidisciplinary assessment.

Has she ever had a Speech and language assessment? If the SALT's know their stuff they are able to pick out the sublties of Asd through communication skills, such as conversation sharing, awareness of listener knowledge, taking stuff literally, etc.

Worth a try to get one while you are waiting to move forward, you can often self refer to speech and language.

Good luck smile

Ineedmorepatience Sun 16-Feb-14 22:22:47

Also get yourself some articles about girls with Asd, there are lots about now. Many of them say that girls are being missed and it is important that Proffs dont rule out Asd in girls just because they present differently to boys.

Tony Attwood has written quite a few articles which are very read able and get straight to the point. Highlight the relevant bits and take them with you to the appointment.

I took a whole book of Tony Attwoods to a camhs appointment several times it was covered in post it notes where I had found information that fitted Dd3 perfectly. they definitely sat up and started to listen round about then. hmm

Ineedmorepatience Sun 16-Feb-14 22:28:42

Oh sorry didnt see appointment tomorrow sad

Never mind print some articles for the next one, there will be a next one because your Dd needs to see someone who actually knows what they are doing sad

Unfortunately your situation is not rare.confused

nodiagnosis Sun 16-Feb-14 22:42:12

I think DD is on the ASD spectrum, yes. I have long said she ticks 99% of the boxes if you like for PDA, but paed doesn't accept the possibility of PDA because DD has good eye contact, good communication skills and is a good talker.
It is incredibly frustrating!!!

DD's behaviour is managed better now and as such, there have been noticeable improvements in the amount of outbursts she has.

I understand it is not easy to diagnose, but a few of the ways DD behaves are

ferocious headbanging, to the point of bursting the skin on the forehead open, bleeding and continuing,
Chanting for at least 2 hours at a time.
Rocks for hours at a time.
Agression towards other children and adults.
Bites herself.
Very short concentration span.
Inability to follow the crowd, seemingly unaware of what others are doing.
No empathy.
Absolutely no fear of danger and all windows and doors have to be locked at all times, even windows in car have had to be disconnected to prevent them opening.
Only senses extreme temperatures.
Does not ever keep still, always jumping whilst talking, eating, watching tv, reading.
Swears loudly repeatedly in public.
Cannot be trusted around animals, because she has a 'thing' about squeezing animals and poking their eyes.
Has no concerns about repercussions of her behaviour and despite being almost permanently kept in at lunchtime at school, does not learn anything for the next time.
She has caused injury to the SENCO's back when SENCO was restraining her.
She has ripped other children's hair out.
She has bitten and punched other children.
No punishments are consistently effective, they sometimes work for a day or two, then are not effective at all.
No boundaries at all, will hug complete strangers.
Embellishes stories to gain attention.
Is very needy.
EP says a lot of her behaviours are a result of extreme anxiety.

It feels like she is a 6 month old in her understanding of how the world works but with the speech and the body of a 6 year old IYSWIM.

Ineedmorepatience Sun 16-Feb-14 22:57:16

Do you keep a diary No?

My diary of Dd3's behaviours and difficulties really helped us to get our point across to the Proffs eventually.

Also video her rocking, jumping, chanting and any other behaviours that you can video.

Focus on the triad of impairments, Repetetive behaviours [rocking, chanting etc], social impairment [so not following the crowd, making friends] and communication impairment [not understanding instructions, not able to communicate emotions]

Have school applied for a Stautory assessment for her? It sounds like they are putting alot of things in place but it would be better if it was formalised with a statement.

nodiagnosis Sun 16-Feb-14 23:01:21

Have done a diary for the last 18 months, paed had a copy of it 2 weeks before the last appt, and didn't mention it. I took my own copy along with copies of all of the paperwork I had and paed wafted her hand and said she had copies of all reports and had read them.

Have taken videos of rocking, jumping, chanting, but paed said they were not necessary, although I have shown them to the SENCO, specialist teacher and home school liaison worker, who were interested in seeing them.

DD is on 'school action plus' and has a 1 to 1 for 2 hours a day, which helps but it's not nearly enough. School agree with this, but again, back to funding issues. angry

chocnomore Sun 16-Feb-14 23:18:18

I would apply for a SA. you do not need a dx to get your child statemented.

PolterGoose Mon 17-Feb-14 16:11:32

Message withdrawn at poster's request.

Handywoman Mon 17-Feb-14 17:58:04

How did it go? I hope she's not still there, having taken my advice, refusing to leave the building

PolterGoose Mon 17-Feb-14 18:00:48

Message withdrawn at poster's request.

LeapingOverTheWall Mon 17-Feb-14 18:09:23

I found that I had to sidestep the general paed entirely as DD2s wouldn't accept that she had a physical medical condition that although it was being made worse by psychological issues (which he was causing by refusing to deal with her properly), had an actual physical cause, which he could see from the actual physical testing report in front of him. And insisted that her condition was caused by "deep rooted emotional trauma".

I was very lucky in that a condition specific charity put us in touch with a specialist who knew what they were talking about (mainly), and from there I researched and researched and researched, and managed to get a referral to a specialist paed.

OP, if you can get the name of the appropriate paed you need to see (school SENCO ought to know who in your area deals with this kind of thing), and see if your GP will refer directly. Ours is happy to refer to whoever, provided they don't need to do the research themselves grin.

Alternatively, a lot of consultants will see you privately for an initial appointment (costing around £300-£350 or so, London/SE prices), and then you can transfer back into the NHS system. I've found private secretaries incredibly helpful about if this "first appt private, everything else NHS" approach is possible in a particular area.

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