The Kawasaki Disease Forum

I'd ask a cardiologist about statins. My daughter had open heart surgery from results of KD and I know that even though the echos may come back without showing damage to the arteries that microscopically there can be damage. My daughter is now on a small dose statin since her surgery and she is only...

Langril-
We are in Oregon. However another Paige, same age of 17 just had double bypass surgery in California. I can get you in contact with her mom if you wish!
Sandy

My daughters aneurysms never did regress, but they did something very unusual and continued to expand over the years. She started with a 9mm in the LCDA and about a 5-6 (if I remember right) in the RCA. She was 6 years old when she had KD. She just had a triple bypass this year and the LDCA was 26.5...

There have been a few cases without fever. I know one parent on here had posted it a long time ago. Let me know if you need research on it and I will find out.
Sandy

There have been very few cases of KD without fever, but it has happened. Watch for flares, keep taking temps. I hope they are checking his CRP levels. Yes, my daughter had a rash on her leg for YEARS. At times it would flare and then sort of go away. It didn't tan for years, now she is 17 and it is ...

Our family traveled to UCLA Ronald Reagan Medical Center last week so Paige could have her open heart surgery. We were blessed enough to have it done by one of the best heart surgeons in the world, Dr. Laks. He was hoping to use CorMatrix to repair her giant aneurysms. She went into surgery around 9...

The surgery has been put back one day....to Weds, March 19th. She feels like she is finally going to get it done, but she will be VERY EMOTIONAL right before the surgery. We're hoping this is very successful so other KD kids with big aneurysms can benefit with the same surgery. Putting off a bypass ...

I am copying and pasting from the KD support site on FB: The time has come....again. This time my daughter IS having her open heart surgery. She will have it done at UCLA on March 18th-Tuesday. The surgeon is hoping to use this new bio-material on her arteries after he reduces the sizes of her aneur...

It's been INSANE. VERY hard on the nerves, sleep, etc. Her surgery is rescheduled for March 18th.

Sandy

Surgery was canceled. We were there a week, got bumped for a couple of transplants, Paige was admitted, we said our goodbyes and went to the waiting room. I was called back into the room and given not such great news about one of her tests and they had to cancel the surgery. We're back in Oregon aft...

It's been a long 11 years since Paige got KD. She has two very giant aneurysms - one in her LDCA that is 26.5mm and is round and another that is in her RCA that is a couple of cm long andI can't even remember-about 14mm wide (?). We were able to talk to Dr. Laks here at UCLA on Friday and see a 3D i...

Well, the date is almost here. Blood tests and others today. More on the 8th I think. Not sure what time the surgery is or the 9th how long it will last. I am trusting God at this point and counting on the prayers of any who wish to pray for Paige!! THANKS! I'll try to let you guys know what kind of...

I am not sure what Omncortil is (?) Our daughter had a very drug resistant case of KD. As she continued with fevers they put her on drip IV steroid for 3 days after all of the IVIG's and Remicade, etc did not work. She was put on drip IV steroids for 3 days and it brought the CRPs down. After return...

Obamacare temporarily messed up the timing, but as of now we will be headed to UCLA for the surgery on Jan 9th. Not feeling 100% about this yet.........

Thank you so much for this post!