Kawasaki Shock Syndrome - Toxic Shock Syndrome

General discussion regarding Kawasaki disease
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Kawasaki Shock Syndrome - Toxic Shock Syndrome

Post by moynihal » Wed Nov 30, 2016 2:57 pm

Hi everyone. I am new here. I took my newly turned 6 year old son to the ER on the morning of Nov 9th as it was his 4th day of high fever, 4th day of enlarged lymph node, and the first day of rash as I suspected Kawasaki disease. The ER doctors and Infectious Disease (ID) specialists agreed with my self-diagnosis and he was hospitalized that evening, when a room became available. Immediately after being sent to a room, his blood pressure started dropping significantly and he was transferred to the PICU. He received IVIG that evening and IV fluids for his blood pressure and started on aspirin the next day. He was not doing much better on Thursday. By Friday, he was completely bloated, irritable, his fever had spiked a few times, his blood pressure was continued to drop and he was not breathing well. He was given a blood transfusion. On Friday night he was intubated and put on a number of IV antibiotics. At this time, the PICU doctors were not entirely clear on a diagnosis. The ID doctors continue to suspect Kawasaki as he presented with just about every symptom. Though there was no clear final diagnosis, the working one is Kawasaki complicated by Kawasaki Shock Syndrome, Toxic Shock Symptom or sepsis. (All a little unclear as his blood counts were generally normal and his virus scan was negative as well).

Thankfully, he surpassed all of his doctor's expectations. Was off the ventilator in 1/2 the time they told us to expect at a minimum and recovered from that time quickly as well. He has been home for a little over a week now and is generally doing very well. We have a follow up ECHO and consult with a cardiologist tomorrow (his first two ECHOs in the hospital were fine, the last one was done about 2 weeks ago) and we have a follow up with the ID doctor next week. He is getting stronger and doing PT and OT. To an outside observer, he would appear fine, but he doesn't have all of his core strength back and tires easily. He is in great spirits, but this all came on so suddenly (literally right after his birthday party) that I remain a bit of nervous wreck. He has not yet returned to school, but we do plan on having him return to kindergarten for half days (he is in a full day program) net week.

I've looked on these boards and scoured the internet, but just haven't found a heck of a lot regarding Kawasaki Shock Syndrome or Kawasaki combined with Toxic Shock Syndrome. Most of what I do find is scary.

Are there any been there/done that parents on here? Are there things I should be looking out for or concerned about other than the general concerns about Kawasaki? I was feeling pretty good when I first brought him to the hospital, as I was pretty confident in the diagnosis and glad we caught it early, but the very quick downward spiral he went on after being in the hospital was nothing short of terrifying. I'm thankful that he is doing so well, but still feel the need to be hyper-vigilant to make sure that we are covering all the bases. Are their special considerations I should address with the cardiologist or the ID? Anything else I might be missing? I am a bit concerned about his exposure to other illnesses once he returns to the Petrie dish that is Kindergarten, but fully recognize that I can't keep him in bubble wrap forever!

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Re: Kawasaki Shock Syndrome - Toxic Shock Syndrome

Post by ChemE » Mon Aug 07, 2017 9:56 pm

If you don't mind me asking, what sort of physical activities did your son do at his 6th birthday party?

Any sliding on plastic or inflatable slides?
Rubber bounce houses?
Wrestling on rubber mats?
Floor hockey?
Any horsing around on carpets?
Anything to generate lots of friction?
Martial arts with bare feet?
Did you clean the carpets/house before the party?

I am doing some related research and any feedback would help.


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