Possible Atypical Kawasaki but no diagnosis...

General discussion regarding Kawasaki disease
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Possible Atypical Kawasaki but no diagnosis...

Post by Kallie724 » Sat Nov 01, 2014 9:01 am

I'm so glad I found this board! I've been really concerned and just need to air it out and seek possibly suggestions.

My daughter started running fever around 101 at 8:00pm on Monday night. Tuesday took her to the doctor and she broke out in a rash at the dr's office. Doctor diagnosed her with fifth's disease. Wednesday I picked her up from my grandparent's and she had still ran fever all day, tired, rash was more prominent and now her feet were very swollen almost double in size and her hands were starting to swell a little bit too. Took her back to the doctor and they did a rapid strep test thinking scarlet fever. That came back negative but told us to wait for the cultured one to come back. That one came back negative on Friday. I took her back in on Friday bc everything was still the same. Fever hadn't been as high but it was still there. I bright up kawasaki to the doctor and she said it's a possibility but we hadn't hit the fever for 5 days mark but it could be atypical. She did a ton of blood work to rule out mono, parvo, strep in the bloodstream, auto-immune diseases and an immune system work up to compare it to the onet daughter had donr two weeks ago (she has a compromised immune system) All test results won't come back until Monday bc the lab is closed over the weekend. I'm so worried about my daughter and I know her doctor is too but I know she also has to rule out some stuff but I hate this ticking time clock and the weekend.

She didn't have hardly any fever last night it was around 99 and then this morning it was around 100. Her rash is looking better (it was really bad from her waist down but she did have it some on her arms and her sides) and her feet swelling have gone down as well. Her day 5 for fever will be tonight at 8:00pm.

I noticed this morning when I was checking her rash that her butt looked real dry and looked liked it was starting to peel some. Has that happened to anyone before? Her hands and feet don't look like they are peeling. How did you doctor diagnose the atypical kawasaki and what questions should I be asking?

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Re: Possible Atypical Kawasaki but no diagnosis...

Post by atulp » Sat Nov 01, 2014 8:33 pm

Hi, I'm so sorry to hear about your daughter and the anxiety of not knowing what's wrong. My 16 month old daughter was diagnosed with atypical kawasaki disease 6 weeks ago. We were in a similar situation however ended up at a pediatric er on day three of her fever because she was refusing to drink and was dehydrated. She was admitted and they ran a bunch of tests, thought it was just a virus, uti, strep etc however all tests came back negative. It wasn't until the 5th day that they were considering kawasaki disease. Since she wasn't displaying typical symptoms they were unsure but ordered an echo just in case. Thankfully her echo was clear but the pediatric cardiologist was the first to mention atypical kawasaki. Along with the fever, my daughter's eyes were red, she had a rash (the rash would get better at times) and her whole body swelled (not just her hands and feet which is what is more linked to kawasaki disease ). Along with the pediatrician, and cardiologist they had infectious disease doctors overseeing her care. Because she didn't fit the normal kawasaki symptoms they looked at a bunch of her lab work to conclude it was most likely atypical or Incomplete kawasakis. I can only recall one marker called albumin that signified swelling. However it was a mix of different levels on her labs that had them more confident it was in fact kawasaki disease. My daughter ended up getting two rounds of ivig, she spiked one fever after the first round so they decided better to give one more round and she's been on aspirin since we were discharged. In all we spent 9 days in the hospital and it wasn't until a few days after being at home that her fingers started peeling. This actually made us feel assured she did in fact have kawasaki disease. Her initial followup echo was ok, she had some dilation but no aneurysms, and we go again Monday. If all looks good she's off the aspirin.
I can completely understand your feelings as we waited many days without any diagnosis and then it seemed like there wasn't a definitive answer all the while our daughter was in so much pain and discomfort. Every doctor told us you have until day 10 of the fever to administer the ivig to have the best impact, so you do still have time if it is kawasaki to get the treatment. If your daughter doesn't seem to get better soon, I would take her to a pediatric er immediately and have them check her out and I would push for an echocardiogram. Reading stories from others on this site so many kids go undiagnosed and from what we understood ivig isn't harmful outside of possible allergic reaction which the doctors closely monitor. You know better than anyone if something is not right with your daughter so don't be afraid to push them to take you seriously if you feel you are being treated otherwise. Best of luck to you and your daughter, I hope she starts feeling better soon!

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