Kawasaki Disease 5 weeks after treatment, some symptoms returning?

[MissDonna]

So, 5 weeks ago my one year old daughter was diagnosed with Kawasaki Disease (with me insisting that was what was wrong after researching it online & being sent home), she was treated with immunoglobulin on day 5 of KD.
Since we left the hospital, she has had an echo and her coronary arteries are still the same as when we left (arteries enlarged, no aneurysms) and I was told they had prescribed her the wrong amount of aspirin (I've changed it now after booking a doctors appointment). Anyway, she got a lot better & seemed her old happy self the first few weeks. But then from roughly 2 weeks later, she had some symptoms returning, like not being able to stand. & now after 5 weeks: glazed eyes for a few days (not red), red hands (only for a day), a rash on her face and a red rash on her private area (which still remain (when she had full blown KD only had a rash on her body not face or private area), seen doctors & been told not related to Kawasaki and was prescribed a cream & hasn't helped whatsoever. All these symptoms have came but not at the same time, but one after the other with time in between each thing. I told the doctor who gave her the echo, he said "don't confuse it with a different virus" I told him she hasn't had any virus, and what virus leaves you unable to walk or stand? He wasn't having it, left me with no answer as if I shouldn't be concerned. Anyone else who's child has had KD, experienced some symptoms returning during the 6 weeks after treatment? Can that happen in the 'recovery' stage?

[Mlemon]

Hello, I am brand new to all of this, and don't know about your daughter's symptoms, but just so you know, our Infectious Disease doctor said there was a 3% chance of our son getting KD again in the first year. His symptoms did not come all at once, but the rash, eyes, pink feet, and red tongue came one after each other, coming and going. Hope your little one is doing better now.

[Raysavickers88]

My daughter just got diagnosed with kd on February 2nd. She was hospitalized 5 days and had 2 rounds of ivig. After the second round she seemed fine the released her from the hospital and she is now on a low aspirin treatment. Her follow up with the cardiologist went well everything seemed normal, but today she started getting weird symptoms she was weak and very fatigued she was very irritable and was vomiting she also has glazed eyes but not red. I called the cardiologist and he assured me it wasn't Kawasaki and just a stomach virus because she has no fevers. But I don't feel comfortable with his answer It's almost 4 am and I am up doing research I'm scared that she might be getting Kawasaki again! It's just so difficult trying to find answers to this disease! I am so thankful to have found this blog and find other parents who understand what I am going through... I hope your daughter is doing better. Please update us on how she is doing

[MaddiesMom0211]

I too have been having these problems my 13 month old daughter was diagnosed with incomplete / A-typical KD the 29th of January and received the IVIG and within twenty four hours fever was gone and she was pretty much back to normal. During her illness the only symptoms she had was fever for 9 days and swollen lymp nodes in the neck. She had some swelling in her left main and left anterior arterys of the heart. We follow up with her cardiologist every two weeks, and They have since went down to a normal size. Well 6 days ago she started having unexplained fever again no other symptoms very high fever almost staying at 103-104 sometimes reaching 105. We took her back to lebonheur. They kept her over night and did lots of tests. They took a lot of blood did an echo swabs u name it, and found nothing but her CRP levels were high and white blood cell count was high. Found no infection,nothing. The infectious disease team doesn't think it is recurrent Kawasaki disease but at this point it is a wait and see thing. They mentioned she wouldn't receive another ivig not sure if they meant it's because she doesn't have it but they said it was good for a year? I'm starting to think it may be a auto immune disorder or something. They are thinking virus but I just don't know. It's like she stays sick with fevers. My poor baby barely gets a break. I think she is getting better now but so many similarities between now and the first time she went through all this! I am one scared mama. Anyone got any advice?

[Nancy]

hi

IVIG does not last for a year ! I think you need to be talking to pediatric cardiology, not the infectious disease docs !

nancy

[MaddiesMom0211]

I need help!! Since this last episode fever is back! It went away for three days and is back at low grade fevers this is the third day now. Cardiology keeps telling me if she runs fever for 6 days call us back... I'm scared and I need answers I don't even know who to call for a second opinion because I have no idea what is going on. She seems completely normal otherwise, a little grumpy but still eating and playing. I really feel like this is something but I can't get anyone at the children's hospital to take her seriously because all tests are normal except CRP and white blood cell count. What do I do???

[Tb834]

How is ur daughter now? Was it a relapse?

[KDMama]

I’m heading home from the ER as we speak. My son was diagnosed and treated with IVIG Good Friday a year ago (and was rewarded with the rare complication of aseptic meningitis from the IVIG). He is now 7, and has the same rash he had back then, along with cracked lips and the skin is peeling on his hands. He had a fever last week, but I didn’t connect the two because it’s been so hot here, I thought he was just dehydrated. Today I called the pediatric cardiologist (80 miles away one way) who referred me to his pediatrician (30 miles away in the opposite direction). CP requested the ped see Luke today- ped couldn’t get him in until tomorrow and CP didn’t want to wait, so he had us head to the ER (80 miles away) tonight. IV put in, blood tests run, no answers other than “he appears healthy”. CP scheduled us an appointment for tomorrow at 2:30 so we’ll be back again tomorrow. But are they going to listen to me??? This is the SAME rash as last time. His skin is peeling off his hands JUST like last time. He had the fever, but it passed. Was it possibly a relapse and I missed the window again? He showed coronary artery damage in his echoes since the original diagnosis.... will it be worse now? And if it IS a relapse, and they treat him with IVIG again, will he get the meningitis again? It’s an awful thing to think about choosing between your son’s heart and his brain.....