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Treatment and hospitalization

Isaiah spent a total of 12 days in the hospital.  His time there was a complete roller coaster ride of ups and downs, and most of it has all blurred together in my memory.

IVIG
On the evening of October 20th, Isaiah finally received the IVIG, which is administered via IV (as the name implies).  We were told that if Isaiah remained fever-free for 24 hours after the drip finished, then the treatment was successful.

The fever went away slowly and Isaiah showed some improvement in appetite and energy-level.  I was sure that we were out of the woods, but at hour 22 the fever returned.  We felt horrible and started wondering if something else was going on.   However, the blood work showed evidence of Kawasaki disease and the echocardigram that had been done on Isaiah that day also showed mild coronary artery dilation, which is common with KD.  The problem with KD is that there is no definitive test that can be done to confirm the diagnosis.  (It is important to note while we were alarmed to hear that Isaiah had some inflammation in his coronary artery, we were told that this would most likely resolve itself.)
Isaiah was then given a second dose of IVIG.


Steroids
Over the course of the next few days Isaiah's energy level and general health seemed to be improving, but the fever kept coming back.  The doctors decided that that they needed to move on to another course of treatment. The next step in treatment was the administration of steroids by IV, which was to be followed by a tapering routine of oral steroids.  Isaiah was given a dose of steroids (methylpred) by IV on October 24th.  It was decided to switch him to oral steroids on the 26th, but his fever and rashes returned, so another IV pulse of steroids was administered that day.

Frustration and despair
At this point, we were feeling very defeated.  Each time Isaiah showed some improvement we would have hope that the nightmare was almost over, only to have our hopes dashed each time.  We were again starting to wonder if the diagnosis was incorrect.  It seemed that even the doctors were starting to second guess themselves.   Rheumatology started talking to us about the possibility that Isaiah had some sort of arthritis.

Finally fever-free
Isaiah was switched to oral steroids after the second pulse steroid treatment and his fever was finally staying away.  On October 30th, the skin on his fingers started peeling.  This was confirmation that Isaiah did indeed have Kawasaki disease and that he was entering the subacute phase of the disease.  Finally, some relief.



Discharge
Isaiah was discharged from the hospital on Halloween (after trick-or-treating around SickKids in his backless hospital gown), just two days before his 3rd birthday.  He was put on a tapering schedule of oral steroids, as well as a daily dose of aspirin.





Comments

  1. Hi Carin, I just found your site thru the KDF FB page, and just wanted to reach out and say that my heart goes out to you for all you're going through and have been through. My 6YO Bryce had KD when he was 11 months old, and I felt so many of the same things you did (my blog is below.) He is a happy, healthy boy now, and I wish you the same down the road. Virtual hugs to you and Isaiah.

    http://brycelindberg.blogspot.com/2007_08_01_archive.html

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    Replies
    1. Hi Susan,

      Thanks so much for your post. I appreciate that you took the time to leave some positive wishes for Isaiah and my family. I am glad to hear that Bryce has remained healthy. Wishing you much of the same for the future!

      Carin

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