Anxiety coming up on our one year anniversary and soy discussion

General discussion regarding Kawasaki disease
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Anxiety coming up on our one year anniversary and soy discussion

Post by Mamakipp » Tue Oct 18, 2016 4:48 pm


Our son was diagnosed with KD last November and almost died in the hospital due to having Kawasaki Shock Syndrome on top of KD. He was seen by Dr Michael Portman who is performing research on the link between soy in the diet and susceptibility to KD.

As we approach the one year mark of our son's illness I am feeling a high amount of anxiety. I've had anxiety all year every time one of my two sons gets so much as a cold. Now I am feeling very worried about Halloween coming up with all the soy in candy. The first thought I had when they first diagnosed my son and said they didn't know the cause was all the candy he had eaten in the weeks prior after Halloween. He doesn't normally eat candy so Halloween makes me uncomfortable anyway. It is so full of crap but I didn't want to rob him of the fun holiday.

My question is, have any of you made dietary changes such as restricting soy? Are there any other environmental factors you have attempted to control? I know that the link is not proven, but I am the type to take a proactive stance in health issues and KD has rocked me to my core in terms of fear and wanting to control the situation. Very hard to do when no one knows what triggers it. Does anyone have any thoughts to share?

The two things I am doing this Halloween to appease my anxiety are: buying soy free candy to hand out and trading my kids the soy free for the candy they bring home, and encouraging a buy back system where they earn money for other things by "selling" their candy to me. There are also lots of dentists in our area that buy back the candy as well.

Thank you for reading! I'd love to hear your thoughts and experiences with KD. By far the hardest thing I've ever gone through in my life.

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Re: Anxiety coming up on our one year anniversary and soy discussion

Post by Nancy » Tue Oct 18, 2016 7:32 pm


I am a "world class" worrier, but let me reassure you that it gets easier !

My son had KD at age 7 years, on the 1st "anniversary" at age 8 yrs, he asked if he could take a beach chair and lunch box
and go sit outside his pediatric cardiologist's office all day just in case "something" happened to him that day !!! Fortunately,
his pediatric cardiologist and I understood his unwarranted feelings (He had made a full recovery ) and his cardiologist sent
him a very thoughtful email :)

It is now 14 yrs since my son had KD. He is 21 yrs old and a college senior. He is rarely ever ill and runs 10 miles per day every
day, 365 days a year for fitness !

You will learn not to worry and over time the sense of worry just fades away :)

Since there is still no known cause of KD, I honestly wouldn't worry about the soy in candy and just let him be a happy, healthy
child and enjoy Halloween ! It's not like he'll be doing this once a month :) One very valuable thing I learned from my son's pediatric cardiologist is that if we treat our children as though something might be wrong or restrict them in small ways, the child may decide there is something wrong with himself and that can create a whole new set of problems.

take care, relax, enjoy....childhood is short

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