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It took 15 months for this little boy to be diagnosed and he still isn't getting the treatment he needs

A conference is being held in Dublin today to raise awareness of PANDAS syndrome.

ETHAN IS FIVE years old. It took 15 months for his PANDAS syndrome to be identified but he still isn’t getting the treatment he needs in Ireland.

His mother, Karen Cafferky, spoke to TheJournal.ie about how a conference is being held in Dublin today to raise awareness of the condition.

“The first thing I noticed is he started doing a strange kind of deliberate blink- but it didn’t go away it turned into an eye roll.

“We even went to the Emergency Department and he was admitted for four nights but nothing showed up in any of the tests.

“He also started bending his arms and clenching his fingers but we had no idea what was wrong.

Just before Christmas 2012 he was out on an antibiotic as he had a bad cold and just like magic – all his funny movements stopped once he took them.

“However, the movements did come back and last November he had a really bad flare- it got to the stage where it was dangerous for him to walk down the stairs by himself.

“He couldn’t even drink with a glass because he kept curling his fingers and then he got irrational fears.

He thought the house was going to fall down and it was very hard to deal with- we were on eggshells because we didn’t want to upset him. Things scare him that aren’t normal.

“Eventually 15 months after it started he was diagnosed with PANDAS but it’s hard because the GP and pediatrician didn’t know how to deal with it so he has been largely left untreated.”

Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, PANDAS, can strike young children and cause severe anxiety, paranoia and obsessive compulsive disorder.

We had to go to a specialist in the US, Neurologist Dr Trifiletti, and it was just such a relief to speak to somebody who knew about the condition in depth – we didn’t have to try and convince him.

Spreading the word

“I set up a Facebook page to connect parents of children with PANDAS but there’s no point in me knowing about it when doctors don’t know so that’s when I asked the specialist in the US if he’d come to Ireland to raise awareness.

We were getting nowhere in Ireland- I naively presumed once he was diagnosed we would be working to get him better.

“We got to the stage where we could see it coming but we couldn’t get the antibiotics we needed.

“It’s very scary to watch your child change overnight with the strange movements. Last week he was hitting himself on the head because he said his head was making him cry.”

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Karen says she has already been in touch with 30 or more parents in Ireland who have children with the condition and she hopes that today’s conference will help correctly diagnose children who may now be misdiagnosed.

PANDAS was first identified in the US in 1998 and the latest research indicates that one in every 200 children in the US are affected.

She described how Ethan will say to her now, “I need to do my Pandas” and that they’re mostly kind of bends.

“The newest one he does is a chicken head- he pokes his head out like he’s a chicken. He also does one where he puts his face into his neck and does weird movement with his mouth.

I want doctors to be at the conference today because they’re the ones that can make a difference. People shouldn’t be going through this alone – your child is acting normal one minute and it’s not fair.

“We now have two doctors coming from the US, one from Denmark and one from Cork which I only recently found out about.

“I believe this condition will be so well known in a few years that there’ll be no need for a conference.”

Read: Children’s surgeon convicted of poor professional performance>

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8 Comments
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    Mute Dave Dson
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    Oct 27th 2013, 7:42 PM

    It is your time to take a wallk on the wild side Lou. Legend RiP.

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    Mute Ann Mc Kennedy
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    Oct 27th 2013, 6:32 PM

    R.I.P.

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    Mute rogermcnally1
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    Oct 28th 2013, 6:45 PM

    ‘It always bothers me to see people write ‘R.I.P.’ when a person dies. It just feels to insincere and like a cop out.
    To me ‘R.I.P’. is the microwave dinner of posthumous honours”
    Lou Reed

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    Mute Ann Mc Kennedy
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    Oct 29th 2013, 12:45 AM

    I didn’t know him personally- that’s why I “copped out” by writing R.I.P.
    Sorry if I offended you!!

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    Mute Petr Tarasov
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    Oct 27th 2013, 6:32 PM

    Linger on..

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    Mute Jessica Keye
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    Oct 27th 2013, 6:45 PM

    Goodbye legend .. Thanks for the music.x

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    Mute 1 Human Being
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    Oct 27th 2013, 6:39 PM

    A legend that walked on the wild side Rest In Peace Mr Reed.

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    Mute Ruairí O'Mahony
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    Oct 27th 2013, 6:40 PM

    An amazingly talented and influential artist. RIP Lou… See you on the other side.

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    Mute Brian
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    Oct 27th 2013, 7:05 PM

    One of the truly great artists of our time. I hope people who haven’t heard his music much will listen now because he has made some amazing music. To quote the man himself from one of his best ever songs ‘What’s good? Life’s good, but not fair at all’. http://www.youtube.com/watch?v=9SH0OVB2B6o

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    Mute Dave Fleming
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    Oct 27th 2013, 7:00 PM

    Saw him in Point Theatre and in a circus tent in Skibereen years ago. He actually smiled once or twice. Great talent. Sad day

    51
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    Mute Jessica Keye
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    Oct 27th 2013, 7:15 PM

    Dave that was Lissard I think.. Nick Cave and John Martin were on that weekend .. Still one of my fave memories of a deadly weekend of music .. Well the bits I remember!

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    Mute Desdemona Garavasces
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    Oct 27th 2013, 6:33 PM

    RIP Lou

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    Mute Sean South
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    Oct 27th 2013, 6:42 PM

    the satellite has gone up to the sky……RIP Lou

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    Mute Ben Reilly
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    Oct 27th 2013, 6:54 PM

    71 not a bad age for a Rock Star, not exactly a perfect day – but sleep well dude !

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    Mute Thenaked Goose
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    Oct 27th 2013, 6:47 PM

    One of my biggest regrets is that Lou Reed was supporting either Simple Minds or U2 in Croke Park in 80′s. I was too young to appreciate him and only really got into his music 20 years later, but never had chance to see him again. Sympathies to friends and family.

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    Mute Joe Loughrey
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    Oct 27th 2013, 7:27 PM

    Yea that was u2 in 1987. Dubliners and the Pogues also supported that day. Hard to believe Phil Chevron and Lou Reed shared a stage that day and died within a week of each other.

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    Mute Sam Rhodes
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    Oct 27th 2013, 8:18 PM

    I was there! I was only 14 but luckily thanks to older siblings of myself and my mates I knew it was a pretty big deal to see him. Satellite of Love was awesome that day.

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    Mute Paddy Murphy
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    Oct 27th 2013, 9:15 PM

    I had a choice to play a junior b hurling match that day in 87 or go to the concert. the fact I remember this so well gives you the answer as to what I did and how 26 years later I still cant forgive myself. FML!!!

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    Mute Roddie Cleere
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    Oct 28th 2013, 9:32 AM

    Ehhh chevron died a month ago

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    Mute phooey
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    Oct 27th 2013, 6:42 PM

    The end of a perfect day RIP Lou

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    Mute sean o reilly
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    Oct 27th 2013, 6:55 PM

    Satellite of love. Great song among many others by a great songwriter. RIP Lou.

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    Mute Dr. Stephen Harding
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    Oct 27th 2013, 6:35 PM

    Very sad. R.I.P.

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    Mute June McLoughney
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    Oct 27th 2013, 6:42 PM

    Sunday ‘Mourning’…RIP Lou

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    Mute David Jackson
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    Oct 27th 2013, 7:38 PM

    Just threw on Transformer when I heard the news, in my top 10 best albums of all time, never tire of it. Produced by Bowie and Mick Ronson, 3 legends powers combined to make a masterpiece.

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    Mute Sean South
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    Oct 27th 2013, 7:51 PM

    new york is a masterpiece……he was a modern poet

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    Mute Joan Featherstone
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    Oct 27th 2013, 6:40 PM

    Oh no…not ‘such a perfect day’, I had that LP….showing my age, he was so cool, RIP.

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    Mute Tony Skillington
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    Oct 27th 2013, 6:41 PM

    Giant of the music industry and will be missed. RIP

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    Mute Jonny Lennon
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    Oct 27th 2013, 6:39 PM

    RIP

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    Mute aido74
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    Oct 27th 2013, 6:51 PM

    God speed Lou reed ,heaven has gained a talented and gifted person ,rest in peace

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    Mute Tony Byrne
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    Oct 27th 2013, 6:41 PM

    Sleep well Lou Reed.

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    Mute jrbmc
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    Oct 27th 2013, 6:37 PM

    RIP Lou Reed

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    Mute Lar G Rection
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    Oct 27th 2013, 7:13 PM

    Absolute legend. One of the godfathers of rock. Inspired so many great artists. RIP.

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    Mute Anne Donoovan
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    Oct 27th 2013, 7:25 PM

    rip lou walking on the other wild side now

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    Mute Chopstix
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    Oct 27th 2013, 7:06 PM

    RIP
    Thanks for the music ..

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    Mute The Roaring Green
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    Oct 27th 2013, 6:43 PM

    Legend, RIP.

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    Mute Padriag O'Traged
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    Oct 27th 2013, 7:02 PM

    RIP

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    Mute Louise Brennan
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    Oct 27th 2013, 6:52 PM

    R.I.P

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    Mute Tomás O'Loughlin
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    Oct 27th 2013, 7:30 PM

    Legend – R.I.P.

    However, I hope they bury the truly awful album that is LuLu with him….

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    Mute Cheryl Mellett
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    Oct 27th 2013, 8:49 PM

    I’m not being cruel and RIP to the man but a liver transplant to someone whos illness was self inflicted frim yeats of drug abuse and given his age I feel has cost someone else a chance at life. I would think someone younger should have got the chance someone who would have had decades of life in them given this chance….

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    Mute Sheik Yahbouti
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    Oct 27th 2013, 10:01 PM

    Stick it in your ear.

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    Mute Mick Rooney
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    Oct 28th 2013, 12:06 AM

    Get lost and stop looking for attention with one of those tiresome, “I’ll buck the populous trend here and say something dramatic and controversial.” Go watch some repeats of X-Factor!

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    Mute Mike Igoe
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    Oct 28th 2013, 3:14 AM

    “I’m not being cruel” – um, yup, you are.

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    Mute Cheryl Mellett
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    Oct 29th 2013, 1:23 PM

    Im not looking for any attention my friends mother was 47 died from liver failure due to alcohol abuse she wasnt even considered for a transplant why should he be any different because hes rich and famous. He was also 71. Thete are people dying waiting on organ donation sick through no fault of their own in my opinion much more deserving of that chance of life….

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    Mute Mick Rooney
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    Oct 29th 2013, 2:07 PM

    No one, regardless of their circumstance, is greater or lesser deserving of a chance of life. What is different here is that your friend’s mother lived in a society with a far from perfect health system. Reed didn’t, regardless of his self-abusive lifestyle and money.

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    Mute Colin Lawlor
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    Oct 27th 2013, 8:03 PM

    Truly one of the greats. RIP.

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    Mute sean parsons
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    Oct 27th 2013, 7:45 PM

    R.I.P.

    One of the best . He influenced so many bands .

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    Mute Paul Radburn
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    Oct 27th 2013, 7:27 PM

    Great man brilliant artist R.I.P. Mr Reed.

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    Mute R
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    Oct 27th 2013, 8:24 PM

    RIP Lou.:( Saw him live a couple of years ago. May the music live on.

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    Mute Seamus Kelly
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    Oct 27th 2013, 8:01 PM

    wow never realised fabio capello played guitar!

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    Mute BroadSideSkid
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    Oct 27th 2013, 10:49 PM

    “Between 2 Aprils, I lost 2 friends / between 2 Aprils / Magic and Loss”

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    Mute Mary Cull
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    Oct 28th 2013, 5:09 AM

    Magic & grief.
    R.I.P . To a wonderful talented Poet.

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    Mute Michael G O'Reilly
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    Oct 27th 2013, 7:44 PM

    Hope he’s now walking on the wild side!

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    Mute Daisy Chainsaw
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    Oct 27th 2013, 8:00 PM

    Hugely inspirational musician. A sad loss.

    “Walk on the Wild Side” is my new earworm.

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    Mute Frank
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    Oct 27th 2013, 7:57 PM

    Good bye and god bless you. RIP

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    Mute Rory Flood
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    Oct 27th 2013, 10:38 PM

    Very sad, absolute legend. RIP.

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    Mute Stephen Dent
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    Oct 27th 2013, 9:22 PM

    Rest in peace Lou.

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    Mute Tracy
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    Oct 28th 2013, 12:27 AM

    Very sad, I played perfect Day at my wedding (the original version).

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    Mute Dhakina's Sword
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    Oct 28th 2013, 1:03 AM

    That was a good choice then, and not many get get to say that in hindsight, It was still the right choice. You did though. A fitting tribute.

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    Mute matt Hanlon
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    Oct 28th 2013, 3:55 AM

    “Some people work very hard, they never get it right, but I’m beginning to see the light”

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    Mute Tiger Lyon
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    Oct 28th 2013, 1:13 AM

    @cheryl muppet

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    Mute Roddie Cleere
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    Oct 28th 2013, 7:48 AM

    Am sure Lou must have had a giggle every time he heard that a bride had ‘perfect day’ played at her wedding. The great aunt would have chocked if she know what the lyrics referred to

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    Mute tmwtbc
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    Oct 28th 2013, 12:09 AM

    What a loss. This is truly one of those days.

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    Mute Tony Slap
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    Oct 28th 2013, 1:55 AM

    He will be sadly missed.

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    Mute Alangb
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    Oct 28th 2013, 10:35 AM

    And the coloured girls say, Doo do doo do doo do ……………. I’m sure I heard him hosting a radio show laterley

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    Mute Kieran Casey
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    Nov 2nd 2013, 12:30 PM

    Who’s Lou Reed?

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    Mute Dave O'Hanlon
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    Oct 28th 2013, 1:41 PM

    Legend!!, Was still releasing quality albums when I started to get into music(Set the Twilight Reeling). RIP

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    Mute Fergal Doyle
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    Oct 28th 2013, 1:09 PM

    Remember the point gig well, good memories. RIP to an amazing artist.

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