Parental anxiety

General discussion regarding Kawasaki disease
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Eric's mamma
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Joined: Thu Aug 28, 2014 1:00 am

Parental anxiety

Post by Eric's mamma » Thu Aug 28, 2014 1:09 am

Hi, I'm new to this site, my son was diagnosed in June 2014 with atypical KD. We just finished the aspirin treatment and was given the go ahead to resume regular activities. I'm anxious about him returning to school, fearing he'll catch another virus and trigger another autoimmune response. What if any precautions can I put in place for his return? I spoke with his principal at the school about moving him out of the class that is used for before and after school care and providing him with his own materials (pencils, crayons etc) but she seemed reluctant. Any advice or past experience is helpful and appreciated.

Nancy
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Joined: Mon Apr 25, 2005 6:49 am

Re: Parental anxiety

Post by Nancy » Thu Aug 28, 2014 7:27 pm

hi

I can understand your concern....I think most of us felt that way in the beginning :)

However, you should keep in mind that:

1- there is NO known cause yet of Kawasaki Disease, so you can't really know what triggered his KD

2- the rate of recurrence is about 1.9%....which makes it possible, but very unlikely

Your son should not need any special considerations in school, and in fact, requesting them might cause unnecessary anxiety for your child, who will not feel as though he is indeed fully recovered ! (This lesson was taught to me by my son's pediatric cardiologist after my son was diagnosed with KD just as the school year began )

best,
nancy

cpb282
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Joined: Tue Sep 02, 2014 5:41 pm

Re: Parental anxiety

Post by cpb282 » Tue Sep 02, 2014 5:53 pm

We too had a diagnosis this summer for our 8 year old daughter (now 9). We spoke to the school nurse, principal and teacher today and asked them to keep an eye on her energy level, which has been an issue over the past 2 months.

To be honest, I think that the less talked about KD and the less that they are segregated the better, as kids need to get back to some normalcy in their lives, even if it is a "new" normal (which our is -- as between the KD diagnosis and now our daughter was also diagnosed with eosinophilic esophagitis, which required significant modifications of her diet). What would benefit our daughter would be getting a cold and improving without going to the hospital to help her understand that not every illness will lead to a hospitalization. But each child is different.

CPB

tootie823
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Re: Parental anxiety

Post by tootie823 » Sat Sep 06, 2014 8:21 pm

My son was diagnosed in March of 2011 and he is still taking his aspirin daily. However when I sent him back to school I just asked his teacher and the school nurse keep an eye on him I felt that treating him differently would make him feel he was still sick and his dad and I didn't want that. He has done well at school however he does seem to get sick more than he did before the kd, but nothing that he has had to go to the hospital for just treated by his primary dr. Good luck to you

nanaizen
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Re: Parental anxiety

Post by nanaizen » Wed Sep 07, 2016 11:57 pm

It is so hard when a child is sick and even more so when diagnosing the symptoms my be different with each child. When my grand son was 3 he began complaining about his neck and his nodes were huge on one side if his neck. It was the scariest 3 weeks of our families lives. He presented with extreme temperature fluctuations a blistering rash swelling he hurt all over. He was given 3 gamagobulin treatments in hospital over the week he spent there. Had it not been for my Korean daughter in laws brother suggesting we tell doctors to look into this who knows how long diagnosis would have taken. I Jan tell you he seems to have survived without long term effects. He has had 3 echos to monitor heart. We count ourselves as very fortunate.

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