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no sign of life; is it dead or just comatose?
  • I don't see any activity in this forum. Although I registered as a parent, I am assured when I try to view that forum that it is only for registered users. I answered the confirmation request and, when I try to answer it again, the site seems to know that I have indeed registered.

    I posted a message asking about whether PDA is recognized as a diagnosis in the U.S. but that was on April 18 and no one has posted anything about anything since.

    My 12-year old son is in dire need and the collection of symptoms called PDA is the best description of him that I've seen. He meets seven out of seven criteria and I'm on the trail. I see no contact in the PDA contact group. What's going on?
  • I am not an expert but I doubt whether PDA is recognised in the US, indeed it is only recognised in certain parts of the UK, and then not by everyone. It is much like Autism/ Aspergers/ ADHD were when first 'discovered'.

    Could you take the info. you can get on the PDA website to your paediatrician/ psychologist and see if they recognise it or are willing to give advice? Or you could try contacting the Elizabeth Newson centre directly and see if they will give any help?

    This site is fairly quiet, people still sometimes post on old forum for this group.
    I hope that you can find some help
    D
  • > I hope that you can find some help

    Thanks; our first clinical attempt is tomorrow.

    I've already assembled what I've found here for that very purpose. The DSM is the map of the psychiatric universe as known in the US. The DSM IV is the latest version and was published in 1994. The work supporting PDA was done in the late 90s. The next version of the DSM is not expected until 2010. While the disposition of any given clinician might vary, I doubt that the insurance companies will consider any diagnosis that is not in the DSM as a justification of any treatment (as defined in the ICD9 or later). It's a difficult bind, especially in a country whose government is increasingly hostile to health care spending in particular and to social spending in general. (War spending, however, is apparently unlimited.)

    > This site is fairly quiet

    Forum : Last post
    Notice : Dec 5, 2004
    Parents : March 7, 2005
    Professionals : never
    General : April 5, not counting our conversation

    Larry
  • the psychiatrist who gave my son diagnosis went along with the view of someone who knows a lot about PDA, but he himself did not know about it, and the unit he works for do not recognise PDA. They too stated that it is not listed in DSM IV. He says my son has PDD NOS. Perhaps if they do not recognise PDA then can they not use this diagnosis (which is in the DSM IV list), then you can use the guidelines for PDA and see if they are effective?

    I would think that unless you have someone very familiar with PDA to work with, a diagnosis of PDA wouldnt be a lot of use anyway.

    I am disapointed that no professionals use the site, (not that we can see what is posted in their forum anyway), but it would be useful if they could make comments on postings in the general areas too.
  • LMacNeill
    Posts: 7
    > I would think that unless you have someone very familiar with PDA to work with, a diagnosis PDA wouldnt be a lot of use anyway.

    The first guess of a psychologist that we visited on Friday was attention deficit disorder (ADD) to be treated with Ritalin or one of its relatives. The psychologist had never heard of PDA but did know about ADD.

    The situation reminds me of the old joke that I heard in my physics department. A man seems to be searching for something near a street light. Another man walks up and asks, "What are you looking for?" "My keys. I think they're in that dark alley across the street." "So why don't you look there?" "Because the light's better here."

    The light's better over here with ADD although there are reasons to suspect that the keys are over there where the light isn't so good. In other words, the tendency to diagnose ADD is raised because the psychologist doesn't know how to treat PDA and does know the etiology of ADD and how to treat that. Connecting an accurate assessment of the problem with the experience of and with others by means of a diagnosis is one way that a diagnosis of PDA could be useful even in the absence of someone who knows a lot about PDA.

    > I am disapointed that no professionals use the site, (not that we can see what is posted in their forum anyway), but it would be useful if they could make comments on postings in the general areas too.

    I am disappointed, too, for that reason and because this site seems to be abandoned. I don't see why the professionals forum should exclude readers. The professional forum seems to be dead-on-arrival anyway. I found this site about two weeks ago and asked to be admitted to the parents forum. I still can't get by the gatekeeper but it doesn't matter because I see no sign of life there, either.

    Do you (or anyone else reading this) know how to make a differential diagnosis of ADD and PDA? Has anyone with a diagnosis of PDA been treated with stimulants that modify dopamine pathways? If so, what happened?

    Larry
  • westd_Moderatorwestd_Moderator
    Posts: 1,292
    I hope that you get access to parents forum - there are not many postings but there are some relating to medication. i believe some children with PDA (and autism and aspergers) have been prescribed Strattera (used for ADHD/ADD) some also have used ritalin.
    Risperedone (rispedal is another name i think?) is another drug taken by some children with PDA. They have been prescribed to control temper/ aggression/ mood I think, and I have read a number of ppositive coments about them. there are side effects to both - i suggest reading more on internet.
    There are other parenta posting on here, though in the other forums who have been through or are going through similar things to you so dont give up on site!
    Best wishes
  • Louise B
    Posts: 4
    Hi -

    Try the link below - although it doesn't actually mention PDA - it does give a lot of other info - and it seems to be more active than this forum. It is based on the advice given in the book 'The Explosive Child' by Dr. Ross Greene (and is a fantastic read - I thoroughly recommend it) and it is based in the US too (Masachusettes I think).

    Hope this helps :D

    http://www.explosivekids.org/

    Louise
  • MHO
    Posts: 111
    Hi there, everyone

    Reverting to Larry's original question, "Is it dead or just comatose?" I'm wondering what the explanation might be for the apparent lack of interest on the part of members in contributing to the new forum. The original e-group seemed to be very well supported. Where is everyone? Has everyone found other sites that are more active, or are all members busy sending private messages to each other and bypassing the site? I'm sure I'm not the only one to feel disappointed each time I log on and find that there have been no new messages posted since my previous visit.

    On the subject, also raised by Larry, about ADD (or ADHD) being suggested as a diagnosis by professionals who do not recognise the existence of PDA, this also happened in my granddaughter's case, prior to her being referred to the Early Years' Diagnostic Centre in Nottingham, where she was given a diagnosis of PDA. According to the psychiatrist she appeared to "fit the profile" of ADHD and was prescribed ritalin. Her mother was far from convinced that this was a good idea but neverless administered the drug for a couple of weeks to prove that she was not being blinkered and uncooperative. There were NO positive outcomes of the experiment and several negative ones such as insomnia, lack of appetite and increased anxiety and agitation so the experiment was brought to an end.

    Greetings to all and let's be hearing from you!
  • Just Dandy
    Posts: 19
    Hello everyone
    Well I have to admit that I have been guilty of not using the site as much as I used to mainly because things have improved for Daniel at school. I have recently had a message from a new member and it made me realise how valuable having the site is. For new members it's a source for support and advise which I wish I'd had when I was going through hell with the education system, not knowing what's available makes things harderand I am more than happy to share the info I have gained with anyone if it makes there life a bit easier. I will endeavor to use it more. Also I have looked at another site that has been set up and it seems as if maybe members are using this site more. It would be a shame to lose this one which is specifically for PDA
    Things have been going well with Daniel at school since he has had a full-time special needs ECO. No threats of exclusion, no complaints from parents, he has friends, he is working, it's wonderful. He is still taking Ritalin which makes a massive difference to his concentration etc. His ECO leaves at the end of term so next term he'll have a new teacher and a new ECO (as yet not been told if one has been found for him) I imagine we'll be back to square one for a while. He seems so much happier. I still have the usual ups and downs at home but can cope better now I don't get the constant negativity I had when he was at the Infant school.
    How's everyone else doing?
    Love Donna :lol:
  • jayne
    Posts: 3
    :? Hi Just Dandy any chance of letting me know of this other site as i need as much advice and support as i can get.
  • Just Dandy
    Posts: 19
    Hi Jayne
    If you look in the ANew Board for parents of SEN children in th general discussions of this site posted wed 11.5.05 there is a link that will take you to it
    Donna
  • jayne
    Posts: 3
    :) Hi Donna
    Thank you for telling me about that site it is helpful.
    Thanx Jayne
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