New diagnosis

General discussion regarding Kawasaki disease
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yayayo
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Joined: Tue Sep 29, 2015 11:04 am

New diagnosis

Post by yayayo » Fri Oct 02, 2015 7:09 pm

My baby girl is 2 month, going to be 3 month old. She got diagnosed as KD two days ago, after 7 days fever. She received IVIG on Sep 30th. Today, we had echo again. It did not show more dilation, but no shrink either. We are holding for the 2nd IVIG because of the concern of hemolysis. They will discharge us on Monday if there are no fever over the weekend and the dilation of conarary is controlled.

My concern is whether sigle dose of IVIG is enough? What question should I ask our doc before I leave hospital? Many thanks.

atulp
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Re: New diagnosis

Post by atulp » Sat Oct 03, 2015 9:55 am

So sorry to hear about your little girl having kd so young. My daughter was diagnosed at 15 months and I know how much more difficult and scary it seems when they are unable to communicate.

Regarding ivig, from my knowledge as long as your daughter doesn't get another fever after the first dose (I forgot the time frame they monitor, I think it was 48 hours) I think then the second dose is not needed. The ivig is used to stop the inflammation and ideally if administered within the 10 day window will mean there will not be any lasting impact on the heart. The fever is a sign the body is still fighting the inflammation.

My daughter did spike a fever just before the window was ending after the first dose. The doctors almost didn't give the second dose of ivig because her fever wasn't that high but we all ultimately agreed better safe than sorry at that point since a fever was present. She had slight dilation as well that was still there at our first cardiologist appointment post discharge from the hospital but that went away by the second appointment and she's been great ever since. They recommend check ups every 3 years if there are no issues after finishing the course of aspirin, but we're actually going at her one year mark (we just thought 3 years seemed too long even though she got the all clear ) which is coming up in a couple months.

Also just so you're not surprised, your daughter may seem extra fussy or out of sorts for a couple months which is normal as they recover. My daughter wouldn't let us put her down, refused to stand during that time. From this site and other stories I've read especially from parents of older children, it seems they are still very sore and uncomfortable after leaving the hospital so won't immediately go back to their normal self. However, after those first couple months my daughter was back to her happy, fun self and you'd never know what she had been through.

My thoughts and prayers are with you and your family!

Grahoey
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Re: New diagnosis

Post by Grahoey » Fri Dec 16, 2016 8:48 am

Hi Yayayo

I was just wondering how your daughter is now. My baby has just been diagnosed with Kawasaki and he too is only 8 weeks. I'm still only learning about this disease.

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