We had our third clear heart echo today and are 6 weeks out They want to do...


We had our third clear heart echo today and are 6 weeks out. They want to do another echo in 6 weeks just to make sure. She is still experiencing some joint pain behind hr knees and upset tummy in the morning. She said we are not the norm because she required 2 IVIG rounds. She still sometimes has a temp of 99.4 today. Blood work is normal though. Celebrating the clear echo but wish the rest would go away. They don't seem to have answers.

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  • Glad to hear the echo was clear!

  • My son is 8 months post but never had ivig. He is constantly having having low temps even still and experienced joint pain. He has been lucky to have cleared up echoes. I hope she feels better.

  • Did he have any treatment?

  • He didn't it's a long story that if you look up mt name would come up in July. The condensed version was he was sent for treatment twice within tje 10 day period and they wouldnt do it...by day 19 I drove out of state to a new hospital and he was diagnosed. It was too late at that point for ivig

    He's atypical as he was 6 and a half and his blood tests took 2 weeks to hit certain levels that they would consider for kawasaki. We are now followed by cardio.

  • My daughter is 3 n half months post KD diagnosis. She still gets fevers on and off. Last week she had a fever every other day and I never figured out why. She had 1 round of IVIG. Her second echo wasn't great but could have been much worse. Her last echo was all clear. Her legs still hurt her and she still has peeling of hands feet and lips if she's even a little bit sick. I've heard KD is the disease that just keeps giving :(

  • My son is 3 yrs post. He had 2 rounds of IVIG. All echos were clear. His last one was 2 years ago. It took my son a good 6 months to get back to normal. It takes time to heal.

  • Are the fevers over 100? My daughter lingers around 99.2. The docs don't seem concerned but this is not her normal.

  • Im new to the group but my daughter had kd when she was 5 and had to do 2 rounds of ivig. Had to take The aspirin for two months after the fact I hope your's child is doing better. It takes time that's the hard part. But she is a wonderful 12 y now and couldn't be more blessed then we are.

  • Thank you. I am so hoping that time gets rid of the tummy and knee pain.

  • April Smaidris McCoy my little girl has acid refelx. to this day i think it goes hand and hand with kd. the bone pain does get better with time but it takes time. but im happy she is a middle schooler im happy with her just being alive. at the hosptial i took her too is one of the best in the state and even there they took photos to show in coming dr what to look for in kd kids. she was not the normal kd kid sooo im just happy she is here to make me crazy lolol. hope this helps a little.

  • Thanks. I am celebrating the clear heart echos. I just wish I could do something when she comes to me saying she is in pain☹️

  • My son is 12 now. 6 when diagnosed. Suffered with fevers for years afterwards, as well as peeling of the hands and feet. He also required two doses. He also ended up with a stomach ulcer from the asprin. He is all good now. Wouldn't even know it.

  • What did they say about the fevers? How high? Any treatment?

  • No treatment besides rotating Tylenol and ibuprofen. Not high fevers. Just enough to make him feel bad 100-101

  • The first few years were rough. It felt like he was constantly sick. Between the reoccurring fevers and the stomach ulcer, he missed a bunch of school.

  • So they just went away?

  • Yes. Eventually they did. He is healthy now. He actually hasn't been sick at all this year (knock on wood). It has progressively gotten better. He goes in the spring for his cardiac work up.