My son's story

Personal stories of individuals and families affected by Kawasaki disease
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skpsm
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Joined: Thu Mar 03, 2016 3:14 pm

My son's story

Post by skpsm » Thu Mar 03, 2016 3:35 pm

After a very traumatic week with Kd, I would like to to share what my little one who just turned 3 months went through..
He started getting cough and congestion initially. As his elder brother had the same symptoms we thought he got it from him.. We took it lightly and he was perfectly healthy other than the cough and congestion,no problems with sleep, poop and food.. After couple of days, he started getting fever and we noticed his rectal temperature spiked to 102.. We took him to Er as told by our pediatrician.. They did blood work, xray, urine test and everything else was ok except for RSV virus.. It's a typical viral infection and comes with the same symptoms that my son was going through..
We went home the same day, the next day fever spiked to 104.8 and we had a mental breakdown seeing the number and also his body was full of raised rashes . Rushed to Er again and they admitted him and started giving him Tylenol...fever came down and after 4 hours again it spiked to 105..2 days continued like this, with no change... Started to get frustrated, little one became very lethargic and weak.. Slowly his body started to become swollen.. Lips started to become red, small skin peeling started to appear.. He was terrible and I felt miserable as a dad as to why we are not able to find out what is going on.. I started to influence the doctorz to shift him to a children's speciality hospital... We came to the new hospital and they diagnosed him as having Kd after doing all sorts of testing including echo... His inflammation markers were high... Decided to do IVIG the following day, God willing he responded to it and after 8 hours we started to see changes.. Fever, rashes all disappeared in the Next 48 hours... Rsv symptoms still little bit, but Kd is gone... Hope he continues to recover, have follow ups for echo...

skpsm
New Member
Posts: 2
Joined: Thu Mar 03, 2016 3:14 pm

Re: My son's story

Post by skpsm » Thu Mar 03, 2016 3:52 pm

Would like to add couple of symptoms that my son had which was a 70% kd as per the hospital s diagnosis.
1)high fever for 4 days, no response to Tylenol,fever came down after 4 days and again started to spike on the 5 th day..

2)red eyes with white ring on the iris
3)swollen lymph nodes
4)swollen limbs and thighs
5)peeling of skin under the ear and neck..
6) red lips with strawberry tongue
7)severe irritation maybe due to inflammation

DeysiLVx2
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Joined: Wed Mar 30, 2016 9:10 am

Re: My son's story

Post by DeysiLVx2 » Wed Mar 30, 2016 10:22 am

We need to make people aware as KD is often not diagnosed in a timely manner. More so in the US. We live in Southern California and are not of Asian descent. My granddaughter started with high fevers on 03/06/2016 started to show all the symptoms. We were told the same, that it was a viral infection and that the body was fighting it.

On 03/10/16 we were told of the possibility of having KD but no blood work was ordered. Blood tests were not done until 03/18/16. Her ESR and CRP values were elevated. Her "official" KD diagnosis did not happen until 03/22/2016 and was treated with IVIG. She is now home taking daily aspirin. Even though she is somewhat back to her ownself, she still shows peeling of the skin, reddish eyelids, no fever, but her follow up ECHO showed a second aneurysm. Both are at 4mm. My baby granddaughter is a franternal twin, her sister is healthy. My family is at our wits ends thinking of the complications and possible cronic lifelong heart issues due to the prolong KD condition of my poor baby.

Thank you for sharing your story. KD needs to be better understood by the medical community and awareness should be raised within the general population.

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