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please help- PANDAS

Posted , 2 users are following.

jenbee136
jenbee136

Hi all ...after weeks and months of trawling the internet for some answers I have stumbled across PANDAS!! I have a six year old son who, when he is well is funny bright and caring. However when he is ill he morphs into a different child. Each time this odd behaviour has started it has been closely followed by infections such as urinary ear throat and chest. It has got to the point where I am presenting at my gp saying his behaviour is horrendous can you check for infection (he doesn't display any other symptoms other than loss of appetite).... They roll their eyes at me... Yet low and behold he has an infection each time!!. The infections are becoming more frequent for example in the last 5 weeks he has had two urinary infections an ear infection and a throat infection. Each time the behaviour lasts longer and each time I am told this is normal??. When I say behaviour this is what he does... First his attitude changes he speaks in a different tone of voice his facial expressions are different, he has uncontrollable violent rages he will attack me swear destroy the house run away hit himself for no reason whatsoever this lasts for hours a few times a day... He weys himself day and night... He is obsessed with dying says he wants to die or wants me to die he says strange things. He does not sleep through the night and is constantly wanting to be in my bed ... I am exhausted/ he is exhausted and this condition is the only thing I have found that describes how he is being.... Do you agree??? What can I do??? So sorry for the long rant but I am desperate...nwe have a paediatrics appointment on Thursday band am wondering if I should mention this or if I am far off the mark???

Thanks

1 like, 3 replies

3 Replies

  • Pandas_Ireland
    Pandas_Ireland jenbee136

    Posted

    Sounds spot on! My son tics and has fears/tears more than aggression but lots of other kids display the exact symptoms you are talking about. Join one of the pandas Facebook groups, pandas support UK, you will get information there about the best uk docs.

    I writing from Ireland, pandas Ireland group on FB, awareness here is low. I am organising a pandas conference in Dublin in October. Keep an eye on postings and maybe come along if you can.

    Check out Beth Maloneys books Saving Sammy and Childhood Interrupted, they are a really good starting point. 

    This condition does exist, you are not alone. Equip yourself with as much info as you can and don't give up until you get someone to listen. 

    Good luck!

  • Pandas_Ireland
    Pandas_Ireland jenbee136

    Posted

    Hi JenBee136, I've organised a PANDAS Awareness Conference which will take place in Dublin, Ireland on 22nd October 2014 with key speakers, Pandas Specialists Dr Trifiletti, Dr Latimer and author Beth Alison Maloney. And pretty certain Dr Madeleine Cunningham will also attend.

    I decided that the best way to get treatment for my son with PANDAS is to create awareness of the disorder in Ireland with both doctors and parents. Registration is open now, go to http://pandasireland.ie/conference - everyone is welcome. You can also check out PANDAS Ireland on the links in the post above.

    Thanks, Karen

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