Quick update: second bout of Kawasaki disease

A new post is long overdue and it saddens me that this post was created in order to share news of Isaiah's second battle with Kawasaki disease.  Coincidentally, I have been working on a post entitled "Gratitude," which is much more uplifting. Despite the recent turn of events I plan on completing that  post, so it will be coming soon.

I will not be going into too much detail right now. I just wanted to post a quick update for those of you who have been concerned about Isaiah this past week.

Symptoms

Isaiah started off with a low grade fever last week, which we assumed was just the beginning of a cold or flu. We kept him home from school, but he seemed to have lots of energy during the day and was acting very much like his normal self. He did complain of a pain in the middle of his neck, which we thought may just be a sore throat.   I took him to his pediatrician on Wednesday, but he did not note any swollen lymph nodes of redness of his throat.  He took a swab for strep throat, but we did not receive the negative results until Monday.

On Thursday Isaiah's fever seemed to intensify.  The thermometer readings were higher and the Tylenol was unsuccessful at bringing his temperature down to an acceptable level. We were administering Tylenol as soon as one dose began to wear off.  On Friday he began to develop a rash, chapped red lips and complained that his legs hurt. This was all too familiar to me.

Could Isaiah really have Kawasaki disease again?!  My understanding was that it was not very common to have it more than once.  Additionally, Isaiah's energy level and appetite were so much better than during his first battle with Kawasaki disease. I was also aware that other viral infections can cause similar symptoms. The other thought that ran through my head was that perhaps this is just the way Isaiah's body will express any serious illnesses from now on.  Perhaps the Kawasaki disease has changed his immune reaction and this is his new normal.  I reached out to a couple other "KD moms" and they responded that their children did show some of the KD symptoms post-KD due to other illnesses. However, none of them had experienced a rash.

Over the weekend Isaiah's rash would disappear and then reappear with different levels of intensity. His body seemed to coping with whatever he had, as he was able to remain fever-free for extended periods without Tylenol.   I thought maybe we were in the clear.  Maybe it was just the flu.  There were several points during the weekend when we considered taking him to the ER to be checked, but did not due to these "glimmers of hope."

On Monday he awoke fever-free and rash-free.  By lunchtime his temperature started to creep up a bit, the rashes began to appear and he was still having problems walking normally. I sent Isaiah's cardiology team a quick email and they called me back to tell me to bring him to the ER to be checked. And thank God they did. I will be forever grateful to our cardiologist and our nurse practioner for making that call.

Diagnosis and treatment

After being examined by the ER doctors, Isaiah was seen by the Rheumatology team, who quickly diagnosed him with Kawasaki disease...again.  By this time, Isaiah's rash had gotten worse and he was showing more typical signs of KD (red eyes, red and swollen hands and feet) and could barely stand due to pain in his feet.  Despite this, he still had energy and seemed to be in good spirits, considering the circumstances. It was very hard for me to believe that he had Kawasaki disease for a second time. However, disbelief was just one of the many other emotions I was feeling at the time.  My "short post" is already much too long, so I will leave it at that,

Last night, Isaiah was treated with IVIG, which was the same treatment administered the last time.  During his first bout, he required two rounds of IVIG and two rounds of pulse steroids. So far, this one round seems to have done the trick.  Based on Isaiah's symptoms and behaviour, it seems that he experienced a "milder version" of KD -- if such a thing exists.

Looking forward

An echo was done on Isaiah today and it does not show signs of any new aneurysms or enlargement of his existing aneurysms. While this is good news, we are not in the clear. Not even close. Aneurysms caused by Kawasaki disease often are not formed until after the symptoms of Kawasaki disease have disappeared. Isaiah's heart will be monitored very closely for the next few weeks.  He already has two echoes scheduled and will likely have more prior to his MRI scheduled in April. In the meantime all we can do is ensure he keeps up with all his medications and hope and pray for a positive outcome.

We will likely be discharged tomorrow, which is wonderful news. Two and a half days at the hospital is more than enough.

A word of thanks

I want to express my heartfelt thanks to all of those that called, texted, messaged and emailed me or simply sent some good vibes our way.  I appreciate all of your thoughts, prayers and offers to help. I am always amazed and overwhelmed by the number of people who care about Isaiah and our family. We are truly blessed.  There are a few friends and family have made these last few days much easier and we are so grateful. We are also thankful to the staff at SickKids for taking care of our little guy and getting him home quickly. Of course, we are eternally grateful to Isaiah's cardiology team for urging us to have Isaiah checked, for answering phone calls and emails swiftly, even after hours, for providing us with complete and honest information and for giving Isaiah the highest level of care possible. 

I will do my best to post updates of any significant developments.