MaddiesMom0211 Posted March 28, 2017 Share Posted March 28, 2017 Looking for answers!! My 13 month old little girl has been experiencing fever for 6 days. This morning it is down some. She has a history of incomplete Kawasaki disease. Almost exactly two months ago from this episode to be exact. Same as with this time fever with no other symptoms. This time it was much higher I might Add. With the Kawasaki she was treated with a immunoglobulin iv and after 24 hours fever cleared up and she was back to herself. She did have some swelling In her left anterior and left main arterys in her heart but have since went back to normal. We were admitted into lebonheur children's hospital Monday praying for answers hoping it wasn't trying to come back and they searched for absolutely anything they could find all tests came back normal. They don't think it is recurrent Kawasaki. They sent us home to "wait and see" I am just dumbfounded as to what it could be . Has anyone ever had a baby with recurrent Kawasaki disease or anything else like this?? Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 28, 2017 Share Posted March 28, 2017 (edited) I don't have any answers for you, but I wanted to welcome you to the forum. I hope someone has some helpful advice for you. You must be so worried. :grouphug: Edited March 28, 2017 by Catwoman Quote Link to comment Share on other sites More sharing options...
wapiti Posted March 28, 2017 Share Posted March 28, 2017 They did bloodwork for infections? Have they not referred you to a specialist? (Immunology comes to mind if your needs might include IVIg....) Quote Link to comment Share on other sites More sharing options...
MaddiesMom0211 Posted March 28, 2017 Author Share Posted March 28, 2017 They checked for infection none was present. She had the ivig two months ago for the Kawasaki disease. They said it was good for 1 year and she wouldn't need it again. They haven't referred me I have been looking for one locally but haven't found one for the Kawasaki specifically. Quote Link to comment Share on other sites More sharing options...
MaddiesMom0211 Posted March 28, 2017 Author Share Posted March 28, 2017 I will look into immunology tho thank you! Quote Link to comment Share on other sites More sharing options...
mominco Posted March 28, 2017 Share Posted March 28, 2017 I agree with wapiti about the immonologist and/or infectious disease? I am glad she was given Ivig and it cleared the infection. Did you check the kwasaki disease website http://www.kdforum.org Did they do an echocardiogram to check her heart out and did they ask you to a see a cardiologist? I am actually quite surprised they told you the ivig protection is good for a year. My son has been on it for 12+ years and I have never heard of that,but he was not diagnosed with KD. Have they grown the culture?It takes a while for that to happen. How about endocarditis? Just throwing things out there.How are they treating her current fever? I hope you find your answers,GL 1 Quote Link to comment Share on other sites More sharing options...
wapiti Posted March 28, 2017 Share Posted March 28, 2017 (edited) I'm not familiar with Kawasaki specifically, but we've done a whole lot of IVIg. I too have never, ever heard that an infusion is good for a year. It's good for as long as it's good for. The half-life, so to speak, is 21 days; that's a typical timeframe for regular infusions at low dose for immune deficiency. High-dose for autoimmune (you would have had high-dose for Kawasaki) is trickier in that the mechanism, how it works, is actually not understood. In an autoimmune context, one high-dose (over multiple days) may or may not be enough to fully reset the immune system. I'd wonder whether they looked far enough for infections. (e.g., did they do basics like swab for strep, both throat and rear end?) If possible, try to get copies of the labs to keep for yourself. Edited March 28, 2017 by wapiti 2 Quote Link to comment Share on other sites More sharing options...
mommyx4 Posted March 29, 2017 Share Posted March 29, 2017 As I'm sure you know, there is no blood test for Kawasaki. It is based on clinical symptoms. If it were me, I would head straight to the ER of the best children's hospital I could get to that has an infectious disease specialist. I'm praying for you. My son had atypical Kawasaki disease at 5 months old. That was literally the scariest time of my life. Please keep us updated. 1 Quote Link to comment Share on other sites More sharing options...
MaddiesMom0211 Posted March 30, 2017 Author Share Posted March 30, 2017 So sorry! I know it is so scary! And every time she has a fever it's gunna be omg is this coming back? We had a follow up Wednesday with her cardiologist at lebonheur. Everything was normal! Her fevers were gone. That's 7 days of unexplained fever that just vanished. I guess it was some type of virus. We saw infectious disease Monday and they didn't feel like it was Kawasaki coming back. She is back to normal today thank the lord! 6 Quote Link to comment Share on other sites More sharing options...
Catwoman Posted March 30, 2017 Share Posted March 30, 2017 Thank you for the update! I'm so glad the fevers went away!!! Quote Link to comment Share on other sites More sharing options...
MaddiesMom0211 Posted April 4, 2017 Author Share Posted April 4, 2017 And so they return.. Quote Link to comment Share on other sites More sharing options...
MaddiesMom0211 Posted April 4, 2017 Author Share Posted April 4, 2017 Low grade this time this is the third day of fever again. Quote Link to comment Share on other sites More sharing options...
Catwoman Posted April 4, 2017 Share Posted April 4, 2017 Is there a good children's hospital in your area? If I were you, I wouldn't rest until I got to the bottom of this. Quote Link to comment Share on other sites More sharing options...
Selkie Posted April 4, 2017 Share Posted April 4, 2017 Low grade this time this is the third day of fever again. I'm sorry, how stressful for you! :grouphug: I hope you get some answers soon. Quote Link to comment Share on other sites More sharing options...
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