Leo's KD story. Atypical KD

Personal stories of individuals and families affected by Kawasaki disease
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Leo's KD story. Atypical KD

Post by Andrea »

Leo is 5, Caucasian, born and raised in Hong Kong. Healthy lifestyle and healthy eating. Generally good health. Two younger younger brothers.
Saturday: he complains about a pain on the right side of the neck
Sunday morning: pain in the neck feels like a slightly swollen lymph node, has fever. Doctor diagnoses acute tonsillitis and prescribe antibiotics.
Sunday PM: fever at 39.5, paracetamol used to control it.
Monday: high fever persists, lymph node in the neck is more swollen.
Tuesday: fever persists, lymph node is even more swollen. We check in the hospital and begin testing for all possible diseases.
A bilateral conjunctivitis appears, eyes are red, there is no "eye pus". Also a light rash appears. Tongue looks like a bit like a white strawberry. We fear swelling of the neck may prevent breathing, so he is intubated and sedated in the ICU. White cell count is high, C-reactive protein at 200.

Wednesday: all tests come back negative. Fever persists. Antibiotics do not seem to work. Rash disappears almost completely. Hands look swollen but feet are normal. Conjunctivitis shows to be mostly bulbar only - the eye looks like he is wearing contact lenses, is there is a white ring around the iris and then the very inflamed conjunctiva. Heart ultrasound shows no sign of enlarged coronaries. Seeking of the neck is very significant. Cat scan of neck shows no infection or abscess of the lymph node. The largest is 2.5 cm in diameter, a whole group on the one side of the neck is swollen. Platelets are increased.

Thursday: neck swelling has decreased. Fever persists. Intubation is no longer deemed necessary and he is woken up. All cultures come back negative. Despite the symptoms being of an incomplete KD, we begin immunoglobulin and aspirin at 8pm

Friday: fever in the morning. Fever disappears in the afternoon. Swelling and conjunctivitis goes down further. Still no signs of affection to the coronaries. We learn there was also a swollen liver. Strawberry tongue.

Saturday: no fever. Eyes look almsot normal. Tongue is almost normal. Neck getting better.

Sunday: today, as I write this, liver almost back to normal size. Neck still shows a little bump. Good mood.

As he has two little brothers, if anyone has any clue as to what to do to prevent it from happening to his little brothers I would be grateful to hear it. This was the scariest week of my life.
Also, if any professional is doing research and needs a DNA sample from leo or from my wife and I, please do not hesitate to ask. Finally, if you can recommend any research institute focused on Kawasaki that would accept a donation towards research I would be happy to consider.

Thank you and good luck. I hope this can be useful to others.

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Re: Leo's KD story. Atypical KD

Post by katbeevers »

I hope Leo is doing well. Here's a link to KD research--

The team is studying the genes of patients with Kawasaki disease and their biologic parents to see how children are genetically predisposed to developing the disease. To learn more about this study and how to participate, email kdgenetics@ucsd.edu.

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