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KD 14 years later!

Posted: Wed Apr 29, 2015 8:40 am
by boyzmummy
I hope someone can help me please. My 18 year old son had Kawasakis when he was 4, the GPs did not pick it up in time so no treatment until three weeks later when it was found his left coronary artery was dilated, he has been on aspirin ever since with annual check ups at the cardiology department.
In October 14 a blood test revealed his immune system was struggling, low IGA, IGM, pneumococcal serotype antibodies 8 of 13 very low. Persistent reversed CD4:CD8 T cell ratio. Ct revealed base of lungs flattened. They tested for XLP and 3 months later(yes I chased it but the NHS here at the moment are terrible. No one has time ). The results were negative for that, but the immunologists have no idea what is wrong, they don't know if it will kill him or not, if it will cause Lymphomas or not.
In November at his Cardiology check up they revealed that his right coronary artery has aneurysm as well now. She wrote " His ECG showed rS progression through chest leads, a broad appearance of the T wave in V1 through to V4, with an elevated J joint and upsloping T wave. Positive U wave in V1 to V5 rather than a truly long QTc interval. This makes the QTC interval harder to measure in lead 1, I think the corrected QTC interval is 440ms".
She goes on to say " the origin of the left coronary artery main stem is within normal limits of the body surface area shortly after the origin prior to bifurcation dilates approximately 4.8mm, versus the origin 3.4 mm, the widest dimension aneurysm is 4.6mm, which has a Z score of 1.6, which is on the 96th centile for his body surface area". Quoted from the cardiologists letter.
So now the immunologist and the cardiologist are confused and don't know what the reason for this sudden change in him is or what to do. They have stated the two are not linked but I can't help thinking they are!
Appointments are slow here as they are down from four immunologist to one, and no one has time to talk to you, I call and call and no one calls back!
He has lost a lot of weight and constantly coughing with chest infections. He was playing football 6x pw but now once as he is to tired.
Please if you have any information or can shed any light on this at all, even if you think it is small information please let me know as I am banging my head on a brick wall here! I have wrote to MPs, PM, etc but with the election coming up no one replies.
Please help

Re: KD 14 years later!

Posted: Wed Apr 29, 2015 8:21 pm
by bromatzke
I 2 had KD 25 years ago. Since then I hardly gave an immune system, always sick. The other I'm not sure about. I run an awareness group since 2006, do you mind if I post this on there to see what answers I can get for you?

Re: KD 14 years later!

Posted: Thu Apr 30, 2015 7:13 am
by boyzmummy
Hi Brooke,
Yes that would be brilliant, thank you. I'm sorry to hear that, the drs here keep dismissing KD being the cause as it was so long ago. He is always chesty with a barking cough, they just seem lost!
Thank you