Any other parents here with Kawasaki/PMIS experience?

2,056 Views | 11 Replies | Last: 3 yr ago by Charpie
polarva
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AG
Been in ICU for a week and looks like we're about to move up to the regular floor so we're starting to come out of it.(yay!) Apparently we're the first case in the county. Anyone else go through this? Would love to take a discussion offline and hear what you've been told, things you have/had to do, etc.

Thanks!
Mark Fairchild
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AG
Don't share your experience, however, our family is lifting up prayers of Thanksgiving for your little one's healing. This is the best news! God's blessing continue to be with your family.
Gig'em, Ole Army Class of '70
bullard21k
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AG
I had Kawasaki's as an infant...36 years ago so there is that.

All I know is my hands and feet peeled like an onion and they treated me with extremely high doses of baby aspirin.

That's all I got
kevmiller
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Like the guy above
I had Kawasaki when I was 6 months old... so it's been awhile. About 41 years.
All I know is my parents were told from doctors they didn't know much about the disease and they didn't expect me to live. I was in Texas Children's for an extended time.
Obviously I came out of it .
That's pretty much all I know.
lazuras_dc
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AG
I assume OP means covid related. Can OP share origins of symptoms etc ??
lazuras_dc
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AG
also curious why offline ? I feel like this wood be great info for everyone to know
TexAg91
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AG
polarva said:

Been in ICU for a week and looks like we're about to move up to the regular floor so we're starting to come out of it.(yay!) Apparently we're the first case in the county. Anyone else go through this? Would love to take a discussion offline and hear what you've been told, things you have/had to do, etc.

Thanks!
Glad to hear your family is on the road to recovery. What county?
aggiebrad94
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AG
Praying.
polarva
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AG
lazuras_dc said:

I assume OP means covid related. Can OP share origins of symptoms etc ??
Kid is a teenager and he started running a 104 fever. He's been really vigilant about wearing masks and staying home. Had the fever for four days and couldn't keep any food or liquid down after the first day or so. Doctor said to wait it out a few more days and then without improvement to take him to the hospital. We waited one more day and brought him in. They said is system was in shock despite he was able to talk and comprehend things. By that time he had minor rashes and one of his eyes was red like all the blood vessels in there were full up in blood. He was completely listless by that time. In the hospital, then did some heart sonograms and his system was all inflamed which explained the listlessness.

Hopefully this helps out others. Looking back, I wish we had jumped a little sooner to the ER.

ttuhscaggie
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AG
Glad to hear he's turning the corner, but was he seropositive for Covid-19? This is the season for Kawasaki syndrome. Could be from a number of viruses....
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polarva
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AG
lazuras_dc said:

also curious why offline ? I feel like this wood be great info for everyone to know
I just have questions about some of the long term affects we're going to be dealing with. Wanted to see if anyone else had this experience that I can ping. I just read that New York had something like 160 cases and more than likely I'll be out of luck (in a good way!). Apparently, it's going to take a few more months of recovery.

Wanted to take it offline because the kid is quite private and introverted. Super amazing and turning into a really great human, but private. All it takes is one internet weirdo to think we were licking 5G towers and well... you know.

If it was up to me (and I'm not an amazing and great human like my kid), I would try and leverage this into getting Texags to set up an interview with A&M legend, 2 time Pro Bowler and 16 year NFL player, Don. Freaking. Muhlbach! https://www.mlive.com/lions/2017/09/death_taxes_don_freaking_muhlb_2.html

I have so many questions for him. Come on Staff! Why has this not happened yet?!?!?!

polarva
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AG
ttuhscaggie said:

Glad to hear he's turning the corner, but was he seropositive for Covid-19? This is the season for Kawasaki syndrome. Could be from a number of viruses....
That's the weird part. He definitely does not currently have Covid I believe as we've done three tests for it. All the symptoms point to the multi inflamatory syndrome / covid and he's an adolescent which is extremely super rare for Kawasaki, I'm being told. And the one test for antibodies came back negative. I was told that these tests are not fully reliable yet as they've only been available for a few months and also it takes time to create enough antibodies to show in the test. They're going to run another antibody test to check again. Whatever the case, the results from what they are doing are showing vast improvements so it makes sense that he has what he has. It would seem to me to be well out of the bell curve to be in this environment, with an adolescent, to have these symptoms for it not to be.


Basically, I don't care if he's tagged Covid or not. I just want him better with no long term or permanent issues.
Charpie
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AG
Prayers. And I have a teenager, so this thread is of interest to me in what to look for
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