Sharing our story to raise awareness of Kawasaki's disease

On October 19th, 2011 my 2 year old son, Isaiah, was diagnosed with Kawasaki disease. Life has not been the same ever since. I want to share his story to help raise awareness of this disease. We were fortunate that Isaiah was diagnosed and treated for his illness. However, Isaiah developed multiple aneurysms in his coronary arteries as a result of Kawasaki disease. If left undiagnosed, this disease can result in death.

If I can help even one child by sharing our story, then I will have done right by my son. He is such a brave, strong boy and I know that when he grows older he will be glad that I shared his story.

Wednesday, January 16, 2013

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.




11 comments:

  1. So I want to thank you for posting this. I am going through the exact same thing right now. My daughter had KD when she was 2. And now I feer she may have it again. I was told by the head of the KD team at Children's Hospital Boston to come in tomorrow to have her evaluated. And I was second guessing it today because her fever broke and rash went away. So thought she was ok..but it has done that before(she has had this for 5 days now). So maybe I will take her just be sure! Thanks again. Amie

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    1. Hi Amie,

      I am glad that my post has been of help to you. When it comes to our "KD kids" it seems that it is always better to err on the side of caution, especially when there is a rash present. I am happy to hear that you are taking her to be seen at the Children's Hospital -- pediatric specialists are in the best position to evaluate your daughter properly. I hope that your daughter gets better very soon and that this turns out not to be another case of KD. I will be thinking of you and wishing you all the best.

      Carin

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  2. Is it very common to get KD again? My 3 year old son just got out of the hospital last week after being treated with ivig and is on aspirin and doing fairly well. He has the peeling of the skin but my main concern now is red spots over his dry skin...looks almost like a fungal infection but not sure. No fever or other symptoms, so hoping it is not KD again. Thanks for your blog and sending awareness to people all over. We are in Calgary, Canada and before this I have never heard of it! Hoping your son continues to recover.

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    1. Hi Court,

      According to the University of California San Diego KD site (http://www.pediatrics.ucsd.edu/Research/Labs/Kawasaki%20Disease/KD%20for%20Parents/Pages/default.aspx) it is rare for children to KD more than once. However, it is not impossible, as I have seen it first hand with my son and have read many other stories of recurrence. I have also read stories of children who seem to get a second case right after leaving the hospital, possibly because it was not fully treated the first time.

      If your son has no other symptoms, it may just be the dry skin or a fungal infection (as you mentioned) causing the red spots. That being said, you are the best judge. If you have any concerns I would recommend that you speak to either your pediatric cardiologist or someone from the team that treated him at the hospital.

      Glad to hear that your son is doing fairly well otherwise. I wish him a very speedy recovery and only good results on his future follow-up appointments.

      Carin

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  3. Thank you for the post. It seems that it is just dry skin and is being treated. How is Isaiah doing? Your blog caught my eye mainly because I have a son Isaiah (he is 15 months and the youngest of the 3). Christian seems good. He has an echo booked for April 24th so I am hoping for good news from that. He seems a bit tired but other than that ok. Have you noticed any long term effects or changes in your son since KD (minus the heart problems). Thanks for you blog it has really helped knowing other people are going through the same thing.

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    1. I have not noticed any long term effects or changes in Isaiah since his KD. Currently, there is not much published research on the long-term effects of KD. However, if you visit the KD Forum (http://www.kdforum.org/) there are some posts from KD parents and survivors that discuss effects they have noticed and believe to be caused by KD.

      I hope Christian's echo on the 24th is all good news!

      Best wishes,
      Carin

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  5. hi i no what u are going through i have been freaking out 4 the last 8 years.when my son was 3 months old,i wasnt living with him at the time,i went 2 visit him 1 very hot summer day.when i walked in2 his aunty's house they had had the gas heater on full all day with the doors shut in the lounge.i was horrified because i picked up my son and he was saturated in sweet and didnt look 2 well so i took him straight 2 the hospital and they said he has a fever.(me thinking well its the hotest day of summer and the kids are in the lounge with the gas heater on full corse he going 2 hav a bloody fever)the mother said her sister had the heater on all day because she was cold and suffers from epilepsy.when i walk in at 1st it was like an oven on full in less then a minute in there and i couldnt breath and was drenched myself in sweet so i took action and took my boy 2 the hospital,we ended up staying there 4 3 weeks and he still had a fever and the doctors were god smacked and didnt no what was wrong or what he had.the 4th and 5th week in the hospital my boy started deteriating everyday.mean while 4 2 weeks they were looking 4 research on the internet and still found nothing.the 6th week in hospital after ringing doctors from other countrys they finaly diagnosed him with KDmean while myself and my partner were shit scared because that 6th week in hospital our son looked lifeless and bearly hanging in there,it was a relief that we finaly new whot it was so they could start treatment straight away.at the same time they discovered that his left artery was narrow so they monitored him every 6 months.when he turned 2 his left artery became normal and his right artery had was completly blocked.2 there surprise a new 1 had growing next 2 the blocked 1.the rest of the story is the same as yours lots of monitoring and visits 2 the hospital,now my boy is coming up 8yrs old,he recently has been having cheast pains at school and struggling 2 breath at times,he went 4 a few tests and they found nothing wrong but 2 take him in again when he gets pains again because he is at risk of a hart attack,they are considering a bypass after a few more tests as he has got 3 aneurysms that need 2 be taken out as 1 is growing quit big.i cant bare the thought of an operation.so am quit scared at the moment.all my wishes go out 2 u and your family and hope your son does well now and in the future :)

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  6. I know this is a old lost but I need answers. My son has been sick for a week now. First it was High fever around 103 but now has become low grade 100.5 or in the high 99's. Not his normal body temperature. He did have pink eyes but now they have gone away. He had and still has a full body rash that u cant really see since its the same color or his skin but u can definitely feel it. Its even on his private area. It was so bad in that area the other day that he couldn't even pee after wiping the tip with a cleansing cloth he was able to fine. His rash has now traveled to his mouth. Its all over his tongue as well. We've been to the doctor and she thought maybe it was fifths disease. A day later she was concerned that it was kawasaki disease so we traveled to a children's hospital were the released us saying he didnt look like a candidate for kawasaki disease. After researching I feel like he has KD but the reason the doctors told me he doesn't is because his fevers arent over 103..im desperate. Its from maybe strep, to fifths diseases, to adenovirus, to kawasaki and now its a "we are at odds. We don't know wats wrong with him" and then we were sent on our way

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    1. Hi there. I am so sorry you and your son are going through this right now. Did the hospital do any blood tests on your son? If not, I would suggest that you request for some tests to be done. Two levels that are often elevated in the acute phase of KD are the ESR and CRP levels. Here are a couple links that discuss diagnosis of KD may be helpful when talking to the doctors:
      http://emedicine.medscape.com/article/965367-overview
      http://circ.ahajournals.org/content/110/17/2747.long

      I hope that this does turn out to be "just a virus" and not KD, but be sure to listen to your mother's intuition. Keep pushing for answers until you get your son the help he needs.

      Hope this helps! Let me know if there is anything further I can do.

      Carin

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  7. Hi Carin,

    I read very closely about your son and lots of question and future fear was rolling into my mind because my 45 days old child also became victim of this chronic disease. Initially he has got fever and doctor's could not able to identified till 7 days and since he is very small only one and half months old, and according to them the first small child in the world who has accounted with this disease which have got escalated and he has got one big aneurysm at LCA and his left arteries got dilated. Right now he is on anti coagulant and anti Platelet medicine i.e. Aspirin, Clopidoral and Warferin. He is being diagnosed 7th October, 2014 and his fever came on 1st October, 2014 with incomplete Kawasaki. We are from India and he is born there. He has got three clot and gone with the process of thrombosis after the IVIG and aspirin dosages.
    Such a small child first time in the world only 45 days old, has gone through the process of thrombosis even doctor's were unable to find what would happen next. But he is a brave child and got it over the thrombosis process and his one clot got down at RDA and others two clot in LCA got oroganised. Right now he has got two clot which is coming down garadually. As per his current condition his platelet are high. He has released from the hospital on 21st October, 2014 and he is in home now with blood thinner medicine which is mentioned above. Doctor's advised that he has to go through with MRI-Cath after 5 months because he is too young now for that.

    I am gathering information and wanted to involve with KD disease's parents so If I would know any better breakthrough or can inform to my doctor. If you would like I can send my son all reports and you can share with good doctor if any good information comes along that would be great to me.

    Regards
    Rajiv
    +91 9830370973
    reggie786@gmail.com

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