Shan's KD update

Personal stories of individuals and families affected by Kawasaki disease
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Shan's KD update

Post by kdkiddad »

First of All Thanks to all sharing their experience . This forum is one of the significant resource to know more and learn about this disease. I want to share my kid's story for others to know .

My Kid Shan is a very active 7 year old .

Day 1 : He started to run mild fever .Took him to his Dr. His Ped checked his ears and concluded that a mild ear infection and should be gone in few days .it was very mild and not even need antibiotics .Continue to give Tylenol /Motrin to control the fever . He did not have any pain .

Day 2 & 3 : fever reduced but not gone away still had mild fevers (99.5 - 100.4) .Dr gave Amox for 10 days . He seems to be fine no ill symptoms .

Day 5 : His fevers are gone and perfectly ok for the 24 hrs (98.4 F Temp for more than 24 hrs)

Day 7 : First day of school open after the spring break and went to school .Everything seems to be normal in the morning . BUT when he came home from school he started to have mild fever and night it went till 102 and then reduced to 99 after a Tylenol.(He was still in Amox as it was a 10 day course )

Day 8 : Took him to Dr again . Dr Checked his Ear and concluded ,The Ear infection is completely gone and stopped the Amox (though it was 5 th day of a 10 day course ). While in the Dr office itself ,he developed mild Rash all over his hands,stomach and legs .Dr Saw this in live but said this could be a new viral he caught and not we should not confuse with with his prior illness .however he was thinking it could be Scarlet fever as the rashes are mild sand paper kind but the fever was not high .He put him under azithromycin for a 5 day course .

Day 9,10,11 : his fever was still there but responding to Tylenol /Motrin .when ever we gave medicine it will come down to 99 but once the 3/6 hour window crossed , again it will spike up to 102-103.Kid did not show any tiredness or sick symptoms . He was active ,playful and reading etc .Was missing the school for the week .

Day 12: It was a Friday night,early morning around 4 AM .His fever gone up to 104.5 and he started shivering violently . we were about to go to ER but then within 15 mins ,his temp coming back to normal .so we thought we will wait till 9 :00 AM for his PED to come as he know the history and the fever is back to normal now. Kid was sleeping as usual without any other issues .

Day 13 : Went to the Dr first thing in the morning .Temp was perfectly fine ,Rashes gone but his eyes started to be mild Reddish .Dr seems to think the viral is going away and in the last course .he will be alright in coulpe of days .

Day 14,15,16 : He is not on any Tylenol/Motrin ,Fever was not there but once a day for 30-60 mins he will get mild fever (like 99-100.3) but without any medicine it will go away on its own .Every time we call Dr on this ,they advised this is ok dont even think this is fever as this is normal temp.

Day 17: My Wife believed something is wrong for sure and she want to know why the mild fever only for an hour and the reason for his mild red eye.We insisted his Ped to do Blood work .PEd was very reluctant to do as he dinn't seem to think anything wrong . But due to our push he agreed to do .

Day 18 : His finger skin started to peel . Blood Results came . Dr called my wife and asked us to go to Emergency child hospital right away as some of results seems to be abnormal and need attention right away(later came to know the PLATELET count was 530 (normal is <450) and CRP C-reactive protein was 2.0 (normal should be < 1 mg/dL) .(suspected for KD)

Rushed to Emergency in Child Specialty .They did another Blood test

Day 19: The second blood test showed relatively lower Platelet and CRP levels but still not within the normal range .His eyes were still mild red but skin peeling was very visible in all his fingers now. They did a Echo and THANK GOD ,His Echo showed everything normal .But still they wanted to do a IVIG as a precaution since he might be in Incomplete KD state now. (note he never high had fever from day 13.just mild ones for an hour and that too gone from Day 18 onwards).

Day 20 : His body took the IVIG normal and he is in baby aspirin dose for next 40 days (81mg) .

Day 21: He had a follow up blood work after the IVIG and all his levels are well within the normal range not even the border line .he was discharged from the hospital (3 nights ). Dr advised no restriction on his activities as he seems to be fine and never had any pain (He did tell us he has seen many KD cases and can figure out from outside the room itself as the kids will be in super pain /crying /irritation and never be normal) . He is not 100% sure whether my kid got KD but the skin peeling and Red eye are identical to KD .He concluded this is incomplete KD without any impact (as his ECHO seems perfectly fine ) .

Day 22 : he is normal and going back to school but Skin peeling is still on .His hands got better but now the feet started to show symptoms of peeling .We have a follow up ECHO after a week and will post after that .

WE did planned a week long vacation long back and when asked the Drs ,whether we should cancel ,they advised us to go with it as it will be change for the kid and since he really did not show any issues dont restrict your regular life.

I am happy to answer if any questions .

My questions to the fellow forum members are as below .

1. We have a week long vacation to Disney planned 6 months back starting next week .We are very scared of any new sickness as he is in aspirin now and thinking of canceling now but my kid is very much looking for this and he will be very disappointed .This is one of the thing kept him positive and energetic during the last 3 tough weeks. He do not have any sickness other than the skin peeling now.

I would like to hear your view points on whether we should continue with out plan or should we be precaution and cancel the trip.

2.How long the skin peeling will last ?. The only think bother my kid in the last 3 weeks is this skin peeling .

Pardon the Brevity as the whole message was typed through mobile .

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Re: Shan's KD update

Post by alev »

Hi, just wanted to share our story. Michaela 2.5 years old atypical Kawasaki. She had ear infection, then viral infection, several times we went to ER with fever, but by the time we get there there is no fever. She vomited a few times in 3 days, had throat infection but was still active. at some point i noticed that the skin on her tums is red and pilling off. we went to ER again, second day in a row this time with fever 38.7 , Luckily one of the doctors suspected kawasaki and confirmed it by blood tests, pilling of the skin on tums, enlarged nodules and spikes of fever everyday more then 5 days. treated with 1 dose of IVIG and aspirin, after 3 days discharged from hospital on 31st of December 2017. yesterday i noticed that she is going to loose nails on her tums, and this is 24 days after treatment. So we didn't have red eyes, conjunctivitis, rush or very high fever non stop for 5 days, also the pilling of the skin was only on tums not all fingers and no swollen or pilling feet. All heart tests showed no changes thanks god . I wonder if the changes can happen later? we have done 2 tests so far one in the hospital and second one a week later and they are good, i think we will do follow up in a few month again. We live in dubai, UAE and we have 200 nationalities living here and the doctor said that he experiences KD up to 40 cases a year. wishing our kids a full recovery, God bless.

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