My son's eight year journey after having KD!

Personal stories of individuals and families affected by Kawasaki disease
Post Reply
Audrey
New Member
Posts: 2
Joined: Fri May 03, 2013 4:32 pm

My son's eight year journey after having KD!

Post by Audrey » Fri May 03, 2013 5:16 pm

My son had KD when he was three. It was hard to get a doctor to listen to me about his symtoms. Finally I was able to get someones attention and they where proactive in helping me figure this out. About two weeks after being better his body went haywire.The first thing was he started to lose his hair, it took months for him to grow it back. Second he started to have extreme eczema. He had never had eczema before, and to get a dermatologist to beleive me that he didnt have eczema since he was born was a chalenge in it self. All they wanted to do was give him steroids and not question why does he all of sudden have eczema.
Finally after being accused of Dr hopping, I found one that told me if his immune system was compromised this could happend and told me give it time his body will heal itself. After four months, it did and it hasn't come back. Although my Hawaiian native mother in law will tell you it was the hawaiian Ocean water lol. My son also lost pigment in his skin, that also went away. A year later at his year check up Dr. notice he hadnt grown at all since the last year appt. Dr. kept a close eye and he didnt grow for two years after having KD. He took a bone test and hormone test but eventully started to grow. We hope he will catch up because he is the shortest in his grade and it really bothers him.
These last things he still lives with.
While all this is going on we noticed he would throw tantrums when he was hungry. It turns out after lots of tests he's hypoglycemic. One more thing we had to understand and try to adjust to a new way of eating and packing of foods.
Another thing is his feet peel like a snake shedding all the time. He gets embarrased and we dont know how to make it better. And lastly he suffers from anxiety. He is scared of being sick. He worrys about things a eleven year old shouldn't worry about. Its taken years for his body to heal it self. Hopefully he wont have to suffer from this anymore.

Post Reply