Ds1 dx with PDD NOS

[chocciedooby]

DS is 8. I have struggled for years to cope with his extremely challenging behaviour and have always felt that something was amiss but couldn't quite put my finger on it. Anyhow, cutting a very long story short DS was dx last week with PDD NOS. My husband and I are trying to take it all in and are left wondering where we go from here. Can anyone recommend a good book on this condition and has anyone got experience of dealing with a child with PDD NOS?

Our DS has terrible trouble settling to sleep at night. it is normally 10.30/11pm before he falls asleep and then we struggle to wake him the next morning for school. Our consultant gave us a prescription for Melatonin. After much discussion and googling etc we have decided to try it. Tonight is the first night. I gave it to DS at 8.15 ( it took a while to convince him to take it) and he is still awake. How long does it take to kick in? It was a 2mg dose.

should start to kick in about 30 mins later. he may need a higher dose. dd aged 6 needs 4mg for it to have an effect for her. ds1 aged 10 is on 8mg.

PDD NOS is almost-but-not-quite ASD, isn't it?

I'd be researching everything to do with ASD, and using the bits that apply to your son.

DS fell asleep at 10pm :-(. That would be very close to his usual sleeping time so the Melatonin didn't have the effect we were expecting. He did seem to be a bit calmer and was rubbing his eyes and yawning after 30 mins of him having the Melatomin but he still struggled to actually fall asleep.

We are going to give it to him at 7.30 tonight and see how that works.

I will be annoyed if the dose is not strong enough as I have a months supply and it cost me ?50! I wonder if I could give him 2 tablets?.. Feel a bit scared to administer more to him than has been prescribed. It was also a struggle to get him to swallow the 1 tablet let alone 2!

Who prescribed it? Could you ring them and ask if you could double the dose?

I think they frequently give you a low dose and then get you to increase it till it's right.....

Good idea. I have to call the consultant anyway so will ask her. I have been waiting 2 days for a call back.

We have a son with 'traits of autism' according to the paed and one SALT unofficially said something about PDD-NOS. To me PDD-NOS means some traits of autism, but doesn't meet the diagnostic criteria as they don't have the triad of social communication / social imagination / social interaction difficulties, plus the repetitive / restrictive or behavioural issues. Or when I'm in a more cynical mood the whole idea of a condition called 'pervasive develomental disorder - not otherwise specified' means we know something is going on but not what it is or we'd specify it.

I've done much research and noticed that PDD-NOS is going to no longer exist with the new diagnostic criteria for autism that will be published in what's called DSM IV in the next year or so.

So what does that mean... not entirely sure. In our case our son will probably be diagnosed as having a 'social communication disorder' which would still be appropriate under the new diagnostic criteria in DSM IV. This is because he has some of the social communication / social imagination / social interaction difficulties, but does not have any of the repetitive / restrictive or behavioural issues.

It's really complex, and makes me realise how little we really know. One thing is clear, that a diagnosis of PDD-NOS will still be that even after the new diagnostic criteria are out (just like Aspergers will still be Aspergers).

I hope that helps and hasn't just lead to more confusion.

Hi Cjn. Thanks for your post.
I have done similar research as you and agree.

I am currently swinging between the term PDD NOS being a bit of a cop out as no one really knows much about it but had to give it a label and then other times I am thinking, ok now we have a diagnosis we can do something about DS to help him with his difficulties.???!!!

Our DS does have behaviourial problems- in fact that is the worst part of all this as my dh and I are unsure how to deal with the major meltdowns and aggression that DS demonstrates. It has been so bad at times that I have had to totally remove myself and our other children from the area he is in.

Interestingly, our DS also has restrictive and some repetitive issues.

I contacted the clinic again today. I have a list of questions I need to ask the consultant following on from the dx last Friday but she is not available to see or even to have a telephone conversation with me until Feb 15th!!!!! I am left feeling very frustrated by this.

Well we gave DS his 2mg tablet this evening at the earlier time of 7.30 and he has been very calm and looks very tired but "still awake".
Think I will contact my gp tomorrow....