Kawasaki Disease- My kid has been diagnosed with it, anyone with experience?

This has absolutely nothing to do with fishing or kayaking, but the years have shown my bros on NCKA to be a wealth of information on a variety of topics, so here goes:

After two weeks of doctors appointments, ER visits, and 8 days in the pediatrics unit my 3 year old has finally been released home.  What initially was a sinus/ear infection and a high fever went through a number of possible ailments, from West Nile, meningitis, appendicitis, urinary tract infection, kidney infection...by Friday they were talking about flying us to Davis for bone marrow scans.  In the end, a sharp-eyed nurse recognized his symptoms and brought up the idea of Atypical Kawasaki Disease.  This is something I have never heard of, but the echo cardiogram confirmed it.  He underwent treatment immediately (high dose steroids, high dose aspirin, and IV immunoglobulin), and his fever has been gone since Friday.  By Monday he was up walking and taking me on a walk to the cafeteria for more pineapple, the difference was amazing.  Since coming home on Monday evening we've had a few setbacks, and have our bags packed to head back to the hospital in case things get any worse (yesterday had a 6-hour spell of severe stomach/head pains and vomiting).  Today he is doing good, eating/drinking well and catching up on cartoons.

I'm looking for anyone with any information on this disease.  Thanks to FB and the internet within minutes of his initial treatment we were chatting with parents in India, the east coast, all over the world.  I'm hoping to find someone a bit closer to home that may be able to offer advice on more local providers/resources.  We'll be heading to UC Davis each month for ongoing monitoring of his heart, other than that we were pretty much told "good luck, he'll be fine". 

As we seem to have a healthy population of parents with youngsters in our group, here are some things to be aware of to catch KD in the early stages:
-high grade (102+) fever lasting longer than 3 days
-skin irritations (although no visible clues were present with our son, he constantly complained his feet itched and did not want to stand or walk)
-stomach/joint pain
-redness of the eyes
-The only way to diagnose the disease is with the echo cardiogram, in which swelling/irritation of the heart will be present (in our son's case it is inflammation of the right coronary artery).

Thanks guys, looking forward to seeing if anyone has any experience with this.
-Ben (beenfishin)

Damn...that's scary stuff Ben.

Really glad they were able to diagnose it and get him the treatment he needed.

I know nothing at all about KD, but if I hear of anything from other family or friends I will let you know.

Hang in there bro....the amount of stress that comes up when our kids are struggling is huge...be good to yourself.

I will be keeping you and your family in my thoughts and prayers.

 

Sincerely,

Jim

http://circ.ahajournals.org/content/110/17/2747.full

This looks to be a good read.

I am so happy you were inthe right place at the right time with that nurse.
She probably saved you a lot more than time wasted.
VERY happy to hear you guys have a handle on it too.
We are wishing you the best.

Most kids do fine with little long term complications. Here is some good information.
http://www.childrenshospital.org/az/Site503/mainpageS503P0.html

Feel free to PM me if you have any questions or concerns.

Scott

it saddens me to read this story; especially with one so young. prayers for a speedy recovery and strength to you and your wife.

God Bless!

Glen

My friend's kid had this disease 2 years ago when he was just about a year old.  He was confined a couple of weeks in the hospital and had to do regular heart checkup.  Just met up with them this past weekend in anaheim and the kid is all well.  Hope your kids recover fully.

I wish you and the family the best, will keep you all in my prayer

We will all give you our prayers.

  Sorry to hear im glad the nurse diagnosed the problem, I dont even like when my son has A headach it kills me inside I couldnt imagine what your going thru. Hope the best for you and your family!

Thoughts and prayers for your family.



Sent from my iPhone using Tapatalk

Thanks for the thoughts and prayers guys, without a doubt this has been the most stressful few weeks of my life.  I'm happy to say it's been 40 hours since he's had any setbacks, and (knock on wood) we're on the road to recovery.  His appetite in the last day has gone through the roof, he lost nearly 15% of his body weight and is putting it back on as quick as he can. 

We were supposed to be heading to Maui on Sunday for a 10-day vacation, needless to say that has been put off indefinitely...but once we make it over there the wahini's better look out, he's ready to chase some grass skirts and catch some waves. 

Glad to hear he's doing better Ben.

Keep us posted.

 

Sincerely,

Jim

thoughts and prayers sent your way.

Hope he's is still doing better. I never heard of that before . Glad they caught it. Hopefully he will be fishing with you very shortly!
Will be praying for the little guy too. Best regards, aka-kimo