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  • hi i have just discovered this forum and have just finished flling out the reg forms. a couple of questioins if you dont mind my 16 yr old son has a diagnosis of asd i have NT twins and a younger son whom we are really worried about. he has been seen by camhs for 3 yrs and undergone an assesment which came ro nothing and a year of art therapy which he loved as he attached to the therapist quickly and so behaved fantastically- she let him do his own thing at his own pace. we are now getting nowhere camhs are no saying that something in my husband/mine past is affecting the way he sees us, are refusing to look at pda although he fits all the criteria -except he is rarely violent at school we think he keeps under the radar so to speak-camhs does not think pda exists they know aal about it apparently we are being treated as diagnosis hunters i believe. anyway question one --is there a specialist who i can ask my very supportive gp about and two idic 15 has been mentioned by gp who has written for a genetic appointment do they go together?
  • Pamela
    Posts: 205
    hello there and welcome. My 11 year old daughter has a diagnosis of idic15 from birth and was diagnosed with pda jan 03. There are other families I know whose kids have idic15 and pda characteristics but because they live in the USA, have not been formally diagnosed with pda.
  • Pamela
    Posts: 205
    where is the geneticist and gp. I live in North Yorkshire
  • hi thanks for the welcome gp is east anglia genetisist cambridgeshire
  • Pamela
    Posts: 205
    Who told you about IDIC15? Do you know any kids with that disorder? From the people I am in contact with kids with IDIC15 are either non verbal, very autistic or severe behavioural difficulties, and many with PDA characteristics. As far as I was aware Olivia was the only one in the UK that has the diagnosis from the Elizabeth Newson Centre in Nottingham - but i might be mistaken. Olivia's genetisist in Leeds did question as to whether PDA could also be one of the characterisitics of IDIC15 - interesting eh?
  • Pamela
    Posts: 205
    Have you looked at the IDIC 15 website? it will give you lots of info www.idic15.org also UNIQUE rare chromosome disorder support group here in the uk have lots of info. www.rarechromo.org I think you have to register but it is free or you could email them and ask for some info. They are very helpful. Does your son have any other characteristics i.e learning, medical, muscle tone etc difficulties? Like I said, there is a whole list of characteristics on the site if this is what you suspect.
    Let me know how you get on.
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