My daughter was 4 when she was diagnosed with Kawasaki after 7 weeks in and out of the hospital. She had 3 aneurysms which dissapted after a year. She was perfectly healthy until 9 years later having her first seizure. She is now 16 graduating and on Keppra. I am looking for answers. Someone help!
Like many of you my son was also mis diganosed with Kawasaki disease in Australia. He was five at the time and we saw quite a few doctors. The window of treatment time had passed which was devastating to me and my husband. We already have a little girl who had heart surgery at 4 months old and felt ill thinking we have another heart child. An echo was done on my sons heart and luckily no damage from Kawasaki disease but unfortunately another heart issue was picked up and surgery was performed. My son had echos every couple of months and at 6 months of being diagnosed. He was also put on aspirin to thin the blood. Our cardio told us that all we need to do is ensure that benjamin doesnt smoke or drink excessively and maintain a healthy lifestyle as he is more prone to heart disease. One weird thing that has happened since Ben has had kawasaki disease is a high allergic reation to mosquitoes. He did not have this prior to kawasaki disease and when he gets bitten we brace ourselves as he blows up and needs antibotics from GP. We do everything to protect him but we too worry about what kawasaki disease has done to our son.
HI, MY SON WAS DIAGNOSED WITH KAWASAKI DISEASE JUST BEFORE TURNING 3 YEARS OLD, HE GOT VERY VERY SICK AND AFTER NUMEROUS TRIPS TO THE DOCTOR AND HOSPITAL, I TRAVELLED 300KM TO A PEDIATRIC HOSPITAL WHERE HE WAS PROPERLY DIAGNOSED AND TREATMENT BEGUN 10 MINS AFTER ARRIVING. UNFORTUNATELY, LIKE YOU, MY SON HAS 2 ENORMOUS AENURYSMS IN HIS CORONARY ARTERIES. 1 THAT WAS 8MM AND ONE THAT WAS 6MM. THEY ARE NOW 5.5MM'S. AND THE SMALLER ONE IS 3.5MM. HE ALSO HAD FULL BODY ARTHRITIS, WHICH THANKFULLY IS NOW IN REMISSION. MY SON, WHO IS 6 NOW, DOES GET SICK VERY EASILY AND BECAUSE HE IS ON BLOOD THINNERS, WHICH HE WILL BE ON FOR THE REMAINDER OF HIS LIFE, HE AS TO BE CAREFUL. HIS CARDIOLOGIST HAS JUST RECENTLY GIVEN THE GO AHEAD FOR MY SON TO PARTAKE IN SPORTS AND EXTRA CURRICULAR ACTIVITIES, KARATE, GYM, ETC. HOWEVER, ON EVERY ACCASION POSSIBLE, I HAVE QUESTIONED MY CARDIOLOGIEST WITH REGARDS TO HIS FUTURE HEALTH, EVERY TIME, HE STATES, DO NOT WORRY ABOUT THAT RIGHT NOW, I CAN UNDERSTAND THIS, BUT AS A PARENT WITH A KAWASAKI CHILD, I WANT TO KNOW THE DO'S AND DON'TS TO ENSURE THAT MY SON REMAINS HEALTHY AS POSSIBLE. I ALSO WANT TO KNOW ALL THE SIDE EFFECTS THAT CAN HAPPEN AS A RESULT OF KAWASAKI DISEASE LATER IN LIFE. TODAY, A BRICK WAS STILL REMAINS IN PLACE BETWEEN MY QUESTIONS AND THE ANSWERS. I KNOW THIS DOES NOT HELP, BUT I WANT YOU TO KNOW THAT I SHARE IN YOUR FRUSTRATION, BECAUSE TO BE PREPARED IS TO PREVENT.
My prayers to the Travolta's. A little over a year ago at age 8, My son had Kawaski diease. It took 5 trips to the doctor and ER before he was properly diagnosed. He recieved the treatment and was on asprin for about 4 months. I stay scared to death. Everytime he gets sick, seems he get sick easier than other children and nothing hits him lightly. He did have some heart damage and seems the peds cardioligist does not seem to worry about it that much but I do.I have read so many true life stories of early deaths in kids that have suffered from Kawaski I truely believe their is a link to it. I would appreciate any and all the information about the diease. Scared in
my 14yr old daughter ended up getting kawasawki diease at the age of 4 she was hospitalized for 14 days we found out through the echo cardiogram that she has a prolapse mitral valve she is often sick with abdominal pain as well as dizziness .we have been seeing alot of doctors because she also suffers from anxiety which is linked to prolapse mitral valve Hearing that john travolas son jett had it and was never given the medicine for the disesase makes me wonder about the seizure could the disease affect the brain without having the treatment i hope there will be someone who can give the right information about kawasawki disease so we all know.
TO ALL PARENTS, MY SON WAS DIAGNOSED WITH KD WHEN HE WAS 9 YEARS OF AGE. HE WAS MIS DIAGNOSED FIVE DIFFRENT TIMES SO HE WAS NOT ABLE TO GET THE PROPER TREATMENT....I WAS MORTIFIIED HE ENDED UP WITH AN ANURYSUM IN HIS LEFT VENTRICAL THAT WAS MEASURED AT 5mm!!!!!!!!!!!!!!!!! DO TO THE LOSS OF THE TRAVOLTAS,I AM NOW WORRIED THAT MY SON WHO IS NOW 14 WILL HAVE MORE PROBLEMS...WERE ANY OF THE PARENTS OUT THERE TOLD THAT THIER CHILD WAS TO OLD TO HAVE THIS DISEASE?THAT IS WHY HE WAS MISDIAGNOSED SO MANY TIMES.......I AM SO GRATEFUL YO STILL HAVE MY SON,BUT I DO KNOW ONE THING IS THERE IS NOT ENOUGH INFO OUT THERE.BECAUSE BEFORE THIS HAPPENED I DID NOT EVEN KNOW KAWASAKIS WAS I JUST THOUGHT IT WAS SOME KIND OF MOTORCYCLE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! CONFUSED AND ANGRY, MOM
I do believe Travolta and wife were Scientologists. A link of not taking it seriously enough?
The death of Travolta's son is so tragic. I'm not sure of the link between Kawasaki syndrome and seizures, but it seems that Travolta's young son suffered from both. If I had a child with a rare condition like kawasaki syndrome, I'd be concerned if they also had seizures, even if doctors cannot determine a link between the two now. It never hurts to get a few more opinions, perhaps a neurologist that specializes is Kawasaki syndrome. Hoping for the best for your daughter.
I was just informed of the news about John's son by my mother. I am a 24yr lady who had this diseas when I was a child. I do have a heart murmmer and have had some slight heart trouble recently. I have also been passing out but no seizures. I am suppose to be put on a heart moniter at some point and time but I am waiting on my insurance to kick in. Every time I have ended up in the ER about my heart I have mintioned haveing had Kawasaki Syndrome when I was younger and none of the Dr's seem to think it matters that includes my fmaily Dr. I believe other wise....No one can tell me of any kind of effects this diseas will have on me in the future...I would like to know what i might have to deal w/ in the future....but getting answers is like pulling teeth.....
Travolta's son's story is exactly what made me start thinking there might be a connection, and then I ran across the post from a 27 year old on this site asking about a possible connection between Kawasaki and seizures later in life. I will post an entry on the heart forum to see if I get a response from one of the doctors, and I plan to share this info with my daughter so she can follow up with her neurologist and possibly a cardiologist too. Thanks to both of you for your responses.
I don't think it was just a slip from what I've seen. It was a seizure, probably related to Kawasaki Syndrome, and it sounds like when Travolta's son had the seizure he fell over and hit his head on the bathtub. What a shame.
Rchu, there are a lot of doctor moderated Heart forums here. They may be the best place to ask if there's a connection. In the article about Jett Travolta's death, it mentioned, in passing, a connection between heart disease and Kawasaki Syndrome.
not wanting to scare you but read up on www homepage about John Travoltas son he had kawasakis as a toddler..and he had seisure disorders...he was found dead today from whats believed to be a slip and fall in the bathroom..I believe there is a connection between the two..about proving it I dont know..be persistant with doctors..