Roller Coaster! Really KD????

Personal stories of individuals and families affected by Kawasaki disease
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Ruthd99
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Joined: Thu Jul 07, 2011 11:03 pm

Roller Coaster! Really KD????

Post by Ruthd99 » Thu Jul 07, 2011 11:28 pm

I took C. to pediatrician 3 times with fever over two weeks. After the first visit they sent him home saying all okay. Called a couple of days later saying the culture showed he had strep throat and put Him on an antibiotic. Wasn't working so went back to doctor and he changed antibiotic. His symptoms at this point were fever (lowered with Tylenol or ibuprophin) red eyes with no discharge, and rash all over his body. 2 more days of fever, 3rd time to dr. She sent me strait to hospital thinking it may be KD.

We are already past 10 days of fever at this point. Hospital starts taking test after test. All test coming out okay. They decide his fever is getting better and want to send him home. I throw a fit and tell them the only reason his fever is better is because they are giving him Tylenol every 4 hours. So....they decide to give him no Tylenol until his fever reaches 104ish and I throw a fit.

Infectious Disease gets involved and decides he has atypical KD. Only symptoms were fever, red eyes and rash. They try treating him with IVIG on night shift and after turning up dose fever shot to 105ish, shakes, White skin, pale lips, and him looking up and saying help momma (19 month old) I thought he was dying. They were worried about finishing off this $3000 worth of medicine.

Next day ID doctors came in saying he really needed the IVIG. Had a r. arthritis dr. Look at him....the talked me into taking him to icu, giving him a steroid first, and then IVIG....all went okay this time. That night he puked. All okay 2 days later and they sent him home.

He had low grade fevers for about a week and acted perfect for the next week. We assumed he was better and probably never even really had KD. We had an appointment today with ID doctors and they were amazed that he had No skin peeling or white lines on fingernails. Again, left thinking it was never KD. 2 hours later we go see cardiologist for echo and they find a small aneurysm and put him on Plavix along with aspirin. :-((((

Ruthd99
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Joined: Thu Jul 07, 2011 11:03 pm

Re: Roller Coaster! Really KD????

Post by Ruthd99 » Thu Jul 14, 2011 8:52 pm

Now his sed rate is way up and they are wondering if it is even KD even with the aneurysm. We have to go in 4 days to get an MRI and MRA. :-(

liquidambar
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Joined: Mon Aug 03, 2009 11:00 pm

Re: Roller Coaster! Really KD????

Post by liquidambar » Fri Jul 15, 2011 7:34 am

MRI?
Kawasakis does not just effect the heart.
I am sorry.
MRA - that is more detailed than the MRI right?
Good luck and let us know what if anything they find.

Oceansideview
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Re: Roller Coaster! Really KD????

Post by Oceansideview » Sun Jul 24, 2016 4:31 pm

This sounds eerily similar to our story!
We went to 3 different ER's in 11 days. The first one misdiagnosed our daughter with a Uti on day 3. We returned on day 10 after Uti meds didn't work, only to be told that her lab urine tests had came back clear and of course the meds wouldn't work, and we were sent home with no answers and told to 'come back in a few days' if her fever persisted. I was also able to reduce fevers with Tylenol and Advil, and I had purposely took her to the 2nd ER as they were running out so they could see her fever spike; they however immediately treated her with Tylenol, so they never saw her fever spike very high, and is probably a large part of why we were dismissed so easily.

I was NOT happy with that, so we went to a children's hospital the next day (day 11), who ran some simple blood tests and checked out her symptoms of the red eyes with no discharge, and a blanchable rash all over her body. The fevers, two symptoms, and Kawasaki pattern like blood results, gave us the diagnosis of Atypical Kawasaki Disease and we were admitted. We had a treatment of IVIG on day 12, and were monitored 24hrs after for fevers. We also later developed symptoms of red feet, and 1 swollen foot, and 1 red lip (upper lip only), and her rash grew. I argued that they wouldn't see fevers because they were also treating her with Tylenol for stomach issues related to the aspirin she was also receiving; they tried to reassure me that Tylenol would not mask the fever, even though I had explained to them several times that I could drop it with Tylenol. By a fluke of God, her morning echocardiogram ran late because she had to be sedated, and they let her sleep a while after. This in turn caused her next Aspirin dose to be late, which meant her Tylenol dose was late, and sure enough her fever was sky high before we even got back to our room! We were monitored again for 24hrs because that fever spike was in the first initial 24hr monitoring period (but at the tail end). After that next dose of Tylenol wore off, her fevers spiked again, and shortly after we were given a second dose of IVIG. The next fever watching period began, and I refused them giving her any more Tylenol; they put her on Ranitidine for her stomach. We went 24hrs without fever and were dismissed.

The next day her fevers spiked again and we came back, they gave us a 5 day course of steroids.

The day after steroids finished she started getting fevers again, only this time they never went above 99.9--(they wanted to see 100.4 or higher). They had us monitor her overnight, but her temp never exceeded 99.9, they did call us in though and did some more bloodwork and noted her feet peeling. They said we'd hold off on another treatment of steroids for now, but to call asap if her temp ever reached 100.4 or she had new symptoms appear. We are on day 10 of low grade fevers now (day 32 overall), and now her rash is coming back. We called right away, but got someone unfamiliar with her case, and they are dismissing everything! We will call back tomorrow and hopefully one of our drs will be oncall, but I'm worried.

We also like you, until we got the brief red upper lip, had pale lips and skin.

Did they ever find any more answers? I've been reassured as much as possible it is Kawasaki, but we had a very atypical presentation that sounds nearly identical to yours (except we developed more symptoms later on through the course of our initial hospital stay, and so far she's had 2 clear echos/ekgs)

-Jennie

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