Experts in KD in UK

General discussion regarding Kawasaki disease
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johannam
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Joined: Sat Jan 05, 2013 10:03 am

Experts in KD in UK

Post by johannam » Sat Jan 05, 2013 10:15 am

Hi all,

My son had KD last March. Was treated on day 9. Had to have two lots of IVIG. All heart scans were fine.

Since then we have had a few problems however. I have read the forums and this seems to be common. When he first went out in the sun last summer he was very itchy, pale and got the KD rash. As the summer went on he and he was exposed to each new bout of sun he had no reaction.

He recently had a week of temps (first since March). It was doing the rounds in his School, but my son, got v high temps and he got the swollen red lips (not as bad as during KD) and red eyes (a bit).

It is like the KD is still in his system. So I have two questions...

1. I would like to know if anyone has seen a Consultant, anywhere in the UK, who is an expert in KD? We have seen a Peadiatric Cardiologist who we thought was brilliant, but it niggles at us that we don;t know any Doctors out there who are more specilist in KD ( if such thing exists?).

2. Why don't they scan other organs of the body? My son has complained of headaches (less as we go on) since he had KD, how do we know he doesn't have a problem in his head (or indeed anywhere else)?

Thanks for reading xxx

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