PATHOLOGICAL DEMAND AVOIDANCE SYNDROME

[MrsPurple]

Hi all, I've been looking through mumsnet for months now trying to figure out whhat and why my child has certain behaviuor.

It's like I know there is something not right but you can't put your finger on it. I've looked at all the links (thank you all mumsnetters) and myself and DH have both sat here nodding and feeling relieved we are not the only people going through this.

My DD2 (4) has not been diagnosed, in fact after asking for help for 2 years, we have finally got a SALT to realise she does have some problems, and that we're not going mad or bad parents.

I have had depression through all of this and our HV just kept saying she was bouncing off my behaviour, which was not true, part of my depression was due to not knowing how to cope with her demanding behaviour.

Anyway where do we go from here? SALT is writing to School doctor (my DD2 doesn't start till September), and they won't assess her till October half term.

Our thoughts (DH as well) is to push for a quicker referal (as it's taken 2 very difficult years to get here and we don't want DD2 to fall behind at school).

I've been near to tears reading some stories as it sounds like I have written them.

Can anyone help re what the process etc is? What to expect? How to get DD help at school etc?

[orangemoon]

Hi mrspurple, i posted a message about this the other day, i am sure my son has PDA but i have to wait until his phsychiatrist at CAHMS comes back off annual leave at the end of august before i can discuss it with her.

However from what i've read, not many people have heard of the condition and dismiss it.

Have you got a peadiatrition?

[WetAugust]

And that's the rub. Not many people have heard of it and many professionals question whether it is even a valid dx. As a result you would be unlikley to get as much help for that dx as you would for something more widely understood.

A few years ago I tried to find out more about PDA but I would have had to buy the information from Dr Elizabeth Newson's centre in Nottingham, as they published that information.

So, you have a doctor who has 'discovered' a new syndrome, that is questioned by other professionals and is the source for information about the syndrome she has discovered. Hmmmm.

I wouldn't jump to the conclusion that your child has PDA. There are many other syndromes that also produce challenging behaviou including ASD.

Best wishes

[MrsPurple]

We saw a paediatrician back in February, who gave us 5 minutes of his preciuos time and basically said she's got no physical medical problem and you say nursery and pre-school have said she doesn't show her behaviour there so there's nothing wrong!

He did say I can refer you to behaviour managment classes , which we are still waiting for?

Does your son get tired alot, as my DD2 always says she's tired (I was thinking it was an excuse), but she often just goes upstairs without a word and I find her in bed asleep.

This is another worry as she can't sleep at school and after pre-school she's a nightmare.

So where do I go from here re pushing for the help and assessment? Because we've had to wait over 7 months for a SALT and hearing assess (as it was thought she might not hear us properly - her hearing is fine!)

She does go cross eyed sometimes and again we've waited over 7 months for this referal, hence why I'm concerned it will take another 7 months before we get next stage of referal.

I'm now over depression and am not prepared to be fobbed off at every stage.

[MrsPurple]

Hi I've looked at ASD and she doesn't tick all the boxes, but for PDA it was like someone knew my DD2 personally.

Orangemoon - it was your post that has alerted me to PDA, as I've been banging my head against the wall for months trying to put some reasoning into her behaviour etc, it was a total light bulb moment for me. So thanks, otherwise I'd still be going round in circles.

[WetAugust]

The point is that she doesn't have to tick all the boxes for ASD - it's a very subjective thing at the whim (almost) of the person conducting the dx. If you read tony attwood's book on ASD you'll see that many professionals dx in diffent ways depending on which of the diagnostic criteria they use e.g. ICM, DSM IV, Gilberg etc. A child who fits under one criteria may fail the dx criteria if tested under a different standard. Add into the mix a Paed's own personal prejudices / schema and no wonder so many get mis-dx.

Also, until I really started to read up on Aspergers many behaviours my son displayed I would not have associated with that condition at all.

Best wishes

[MrsPurple]

Thanks Wetsugust. Where do I go from here, as the SALT says assessment October half term, but I'd really like to get the wheels in motion before this, due to the previuos 2 years taking so long for any referals, and also don't want my DD2 to suffer when she starts school.

I hope you understand?

[WetAugust]

I've just looked on the NAS website. They are a lot more accepting of the dx than the info they had on there a few years back.

Here's a link to their fact sheet. It tells you how to seek a dx and also the contact detials for a support group - but TBH the 'sysmptoms' they say are displayed in PDA are all dispalyed by my son who has several unshakable dxs of Aspergers. That's what I would be requesting - an assessment by a specilaist in ASDs.

www.nas.org.uk/nas/jsp/polopoly.jsp?d=528&a=17634

[MrsPurple]

Thanks wetaugust that's the link that got me thinking. So do I go through my GP for this referal, as I've no confidence in my HV, as she's been telling me it's normal behaviuor for over 2 years.

I sound like I'm whinging, but I look at my DD2 and feel so sad that she isn't being treated fairly and has had her problems swept aside due to my depression.

So I sound like I'm on a mission, but just making up for lost time and not wanting this uncertainty to carry on.

[orangemoon]

Mrspurple could you ask SALT or your gp to CAHMS? My ds is under them and they have been really helpfull.

If you want some more info on PDA take a look at www.pdacontact.org.uk/

[MrsPurple]

Hi orange moon, I've also looked at that website, been searching for a few days so I can gather all the facts before I approach GP or whoever.

I don't know what CAHMS is? I've heard it mentioned but know nothing about it.

Any hep gratefully recieved

[WetAugust]

Go straight to your GP. Ignore your HV. Mine told me that my son banging his forehead on the floor as a toddler was just him 'showing his frustration' - bollocks - he was later dx'd Aspergers.

You may have a difficult time convincing your GP to make a referral so you'll need to be forceful and state your case.

That will probably result in a referral to a Paediatrician and eventually possibly on to a specialist in ASD within CAMHS - not all Paeds are ASD specialists.

Would stay well away from SALT - this will just prolong the process and the Paed will call in the SALT anyway to ask their opinion.

Best wishes

[MrsPurple]

thanks wetaugust, I'll book an appointment tomorrow, no point in waiting any longer. Have seen a Paedeatrician back in Feb but hopefully we can get to see one with ASD experience.

Do you know how long referal takes? my DH has private health care through work and I never thought to ask if this could be used for my DD2 (that was the depression).

[orangemoon]

Good luck mrspurple, my ds's refferal too 4 weeks but i think that was pretty quick compared to most.

some info on CAMHS here CAMHS

[MrsPurple]

Hi Orangemoon

Been to GP today with a printout of PDA. I spoke to her re concerns, didn't give her info till she asked for it. She then went to see the senior partner of practice and wants to look into this a bit more before referal. I.e my daughters history etc.

I've got to call her next week. So fingers crossed. Our health insurance have said they will pay for initial paediatrician with AsD speciality to help move things along.

However I've run 2 hospitals today and no one can help with the speciality. Any ideas?

Obviuosly my GP has to do the referal though.

[orangemoon]

Thats really good news that your health insurance will cover the initial appointment.

It was my health visitor who refered my ds to cahms, they will be your best bet in getting help unless your health insurance will cover a private psychiatrist as well, but hopefully your gp will do your referal.

[WetAugust]

Ring the NAS Helpline and ask for their list of private ASD diagnosticians in your area.

[MrsPurple]

Thanks Orangemoon and wetaugust. I'll ring the NAS monday (as I'm sure they're closed till then). I'll let you know the result