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Family Stories Continued...

Anna Durbin mailto:jadurbin@netzero.net
Chicagoland, IL
Erin Nicole Durbin: May 24, 1997 at 2 months old

Clint & Michelle Entrop  mentrop@yahoo.com
Plano, TX
Travis: January 1, 2000 at 3 years old
It took Travis much longer than average to recover from the acute phase (3 doses of IVIG and 1 dose of steroids), but he did recover without heart involvement.

Dwight & Debbie Blickensderfer blick@market1.com
Pueblo, CO
Matthew: December 2000 at 4 years old

Nick & Wendy Hecker nwhecker@earthlink.net
Petaluma, CA
Audrey: October 6, 2000 at 8 months old
Because of an atypical case, she was not diagnosed and treated with IVIG until Day 12. As of 6 week follow-up visit, no heart involvement. The doctors thought she was atypical because she did NOT have: swollen feet & hands, strawberry tongue, rash was not in diaper area (only on trunk), congunctivitis included some green discharge and eyelash crusting (not present in classic case), her one swollen lymph node was fairly small and only lasted one day, and her fever did not persist until IVIG was administered (lasted 5 days). It was not until her fingertips started peeling on day 11 that the doctors thought she probably had KS.


Sue & Bob Teperow Suetepp@aol.com
Lowell, MA
Noah: April 1998 at 3 1/2 years old


Kristen McGovern  mailto:mcgovn@aol.com
Andover, KS
Elise Kristen: October 1, 2000 at 10 months old
Elise was first diagnosed with dermatitis, then the measles. Finally admitted into the hospital after her 3rd day. Diagnosed on the 4th day with KD. Treated on the 5th day. No cardiac damage but platelets are still around 630,000 almost 3 months later.


Michele and Jack Flaherty mailto:namnit44@aol.com
Jersey City, NJ
Patrick: November 1999 at 12 years old
Kaitlin: 6/91 at 9 months old and 6/94 at 5 years old
When our son had KD we were told it was rare for 12 year old to have this disease. When our daughter had it the first time, we were told it was rare for siblings to have KD. Second time around for Kate, Dr. was hesitant to diagnose KD. She was not treated until day 10. Her left coronary artery remains swollen, but thankfully heart is functioning normal. Patrick had no cardiac involvement. In each instance, children were exposed to freshly shampooed carpet. I suspect things are not quite as rare or coincidental as I've been told!


Raphaelle Cappos mailto:rscappos@aol.com
Tinley Park, IL
Zachary: August 1998 at 4 years old & June 2000 at 6 years old
Zachary has had KD twice. The first time there was no heart involvement, the second time he had dilated coronary arteries. He was treated with the IVIG on day 7 and then took aspirin for 2 months. A follow-up echo at that time showed that the arteries were back to normal but echos will be done again at 6 months and a year. Today, Zachary is a very happy, active little boy. This experience has changed my life forever and has taught me to appreciate my children and my life even more because you never know what's going to happen.


Jennifer Primeau xprimeau@hotmail.com
Kirkland, WA
Paris: 10/98 at 2½ years old
It took us two doses of IVIG. There is still some caution of inflammation of the arteries but no real problems. Dr's want to do a stress test when she is 8 or 9 years old.


Clint and Tami Barrett tbarrett@socket.net
Sturgeon, MO
Trent: June 1998 at 3 years & May 1999 at 4 years old
Trent was very ill in June of 1998. We were told it was probably a virus. After a doctor performed some blood tests we were informed he probably had KD. He was treated with IVIG in the hospital and then released after a few days. Since he never fully recovered he was readmitted a few weeks later for another dose of gamma globulin which seemed to do the trick. One year later he was diagnosed with recurrent KD. Thankfully, he has suffered no heart damage and is a healthy, happy 6 year old today. I am always willing to listen if anyone wants to talk about KD.

Katryn Closson mailto:kate@umit.maine.edu
Bangor, ME
January 1993 at 15 years old

Donna Collins DMRC3513@AOL.com
St. Ann, MO
Michael Paul Stein: April 1984 at 6 years old
My grandson Michael, had aneurysms on the heart. He lived, 10 more years but was monitored medically. Died of a heart attack July 11, 1993. I have written his life story and also about the disease. My book, "On the Wings of Love" is available at Amazon.com or Barnes & Noble bookstores. Also through the publisher or by contacting me at my e-mail address. Feel free to contact me. I would be happy to discuss the disease with anyone, or go anywhere to talk about it.

Glenn and Christie Bryan cbryan@nu-z.net
Lincolnton, GA
Dustin Glenn: late May-early June 1996 at 4 years old
Our son Dusty was diagnosed on day 11 after being misdiagnosed by 2 doctors, 2 interns, and a physician’s assistant. He had many of the symptoms: rash, swollen tongue, cracked lips, high fever, and red eyes. He received 2 treatments of IVIG. Six weeks later the doctors found a grand and a medium aneurysm in his left coronary artery. One year later grand aneurysm was found in his right coronary artery. In September of 1998 it was discovered that his right artery had almost closed off letting through only a thread of blood. A stress test showed that there was no damage though due to collateral vascular growth from the left side. In February of 2000 the artery began to open back up. By December of 2000, the artery was opened up and letting through normal blood flow. His left artery has showed no change since 1996.


Mark & Lori Colon Loripilar@aol.com
Cottonwood, AZ
Mark Jr.: August 18, 2000 at 11 months 3 weeks old
Mark Jr. had all the symptoms, but he was sent home twice from the doctor and emergency room with an "ear infection". Finally on the third visit to the ER he was sent to another hospital with the KD diagnosis to be treated with Gamma Globulin and heavy doses of aspirin for 6 weeks. He has no significant damage to the arteries, but has been sick often. He has had a lot of problems with his stomach. Doctors say that it has nothing to do with KD, but he never had any problems before KD. If anyone has any info on this, I would appreciate comments/suggestions.


Kyle and Angie George kabmgeorge@missouri.edu
Hallsville, MO
Morgan: January 1995 at 15 months old
Morgan was sick for almost 3 weeks and was about to be diagnosed with Juvenile Rheumatoid Arthritis when the rheumatologist decided it was KD. Fortunately, she has no heart damage and is now 7 years old.

Ronne Robinson  Noshotz37@cs.com
Kansas City, MO
Katie: October, 1995 at 15 months old
Katie was finally diagnosed on day 5, after 4 trips to the ER and 2 visits to the Dr's office. Her case was atypical because she required 4 doses of IVIG and also required albumin. She finally started to respond to the 4th dose, after 16 days in the hospital. She had all of the classic symptoms, including aseptic meningitis. She was left with mitral regurgitation and 3 segments of her left descending coronary artery enlarged. This persisted for 3 years post-KS, but has resolved. She has annual echoes and will have a stress test at 8 or 9 years old. She continues on daily aspirin, although I do stop it during the flu season. She is now a beautiful, happy (somewhat doted on) 6 year old.


Greg & Jeanne Naber Mtncruiser@aol.com
Boulder, CO
Jacob: January, 1999 at 19 months old
Jacob was diagnosed with Kawasaki's disease in January of 1999. His pediatrician caught it after six days, and sent us to Children's Hospital in Denver, where he was diagnosed and treated with IVIG. He responded well to treatment, however he developed a giant coronary aneurysm. He has been on aspirin therapy since he was diagnosed. He is followed closely by a pediatric cardiologist, with echocardiograms every six months and stress echos and angiograms every year. In addition to the aspirin he now takes a daily dose of Coumadin. Jacob is a vibrant, loving, 4 year old boy who will continue to be monitored closely as he grows. We would love to get in touch with other families that have had this life changing experience.

Kim Cook afn61696@afn.org
Gainesville, FL
Jack: May 1999 at 2 years old
My son had a classic case of KD. He was diagnosed on day 4 and treated on days 5 and 6. He had a severe allergic reaction to the IVIG, but it was managed with Benadryl and steroids. Jack made a complete recovery with no heart involvement. My daughter had antibiotic-resistant strep in the weeks preceding Jack's classic KD. Four days before Jack got sick, my daughter caught a strange virus on top of the strep which doctors later suspected was Epstein Barr since they found the antibodies. Whatever it was, I believe my daughter's illnesses were related to Jack's bout with KD.


Donald and Sadie Rodgers Sadie_Sue_34@hotmail.com
Centralia, MO
Lindsay: January 1989 at 9 months old
Lindsay was diagnosed with Kawasaki on the 6th day of her illness. I took her to the Dr. everyday and was very persistent, that they find out what was wrong with my baby, almost to the point of rudeness. Lindsay was very irritable and hardly slept a wink. When I would pick her up and hold her she would scream in pain. I knew that wasn't normal, but no one would listen to me. Lindsay was treated with IVIG and recovered very quickly. Also took aspirin for six weeks as a precaution. I know it had to be painful. Lindsay has had no heart complications yet and she is 12 years old. Lindsay had all major symptoms by the 6th day.


Debby Schwennesen schwen@socket.net
Centralia, MO
Mandy: December 1984 at 13 months old
Mandy was diagnosed on the 6th day of her illness. She started out with a high fever, which we couldn't bring down and after the 5th day the other symptoms showed up (red rash on hands, body, and mouth. Her doctor had us take her to the Children’s Hospital at the university of MO. She was then treated with high doses of aspirin for approx a week and a half. We were then sent home where she continued to recover going thru 1 1/2 months of swollen joints. She wasn't able to crawl or walk for that time period. At 18 months through an ultrasound checkup, one side of her heart valve was enlarged. When they did a catheterization, the valve was back to normal. Every 6 months until she was 8 yr. old we went for a checkup. After that she was given a clean bill of health. She is now 17 and is very active in cheerleading, track, and dance.


Rollo and Meaghan Govier fivegoviers@tds.net
Fennimore, WI
Patrick: September, 2000 at 4 years old
Kaitlin: 6/91 at 9 months old and 6/94 at 5 years old
Our son was diagnosed with KD on the 5th day of his illness. He received IVIG treatments and with luck no heart damage to date. We have currently undergone 2 echo's with the next one coming in 2 wks. It took an amazing 3-6 months but our son finally has his rambunctious personality back. We feel very fortunate that our family physician reacted so swiftly. If anyone would like to discuss their experiences please feel free to email us at fivegoviers@tds.net


Dave Stewart deanweezy@aol.com
Newark, OH
Nicholas: December 1997 at 3 ½ years old
Nicholas was diagnosed on day 3, because all the symptoms were present and they had no doubt that's what he had. Rec'd first IVIG that day, but continued to go downhill for next 3 weeks. Rheumatologist finally readmitted him for another treatment after 3 echos in a row showed more damage each time. The cardiologist is still not convinced he needed it!! Still has aneurysms and continues on aspirin. I worry about the future.


Pryscylla Hubbard Nbakoda@aol.com
Corning, NY
Ben: September 24, 1996 at 5 years old
Ben was not diagnosed until day 16 (after almost daily trips to the Dr.)...massive steroid, IVIG's,and aspirin(he never absorbed). 4 days later, had 3 focal seizures (not from fever) and went into a coma. Was on life support for 2 months...went into acute disseminated encephalomyelitis...a traumatic brain injury. Had to learn again..potty train, eat, our names, abc's, all of it, Is now in 4th grade with a one-to-one aide...yearly check-ups with cardiologist, stress test soon, short term memory problem, But, a very happy boy, We have concluded that Ben is good for the world, but the world won't be good to him.

Paul & Tracy Pillado tpillado@hilton2000.com
Grover, NC
Katherine: March 13, 2001 (diagnosed at 5 days) at 18 months old
Kate started with a fever of 102 which quickly went to 104.5 on day 2. Other symptoms appeared on day 4 and 5. She had the rash on body and concentrated on hands/feet/groin, lg lymph node on left neck, pink eye, blistered lips. She got to where she couldn't lift her head/roll over much less walk or crawl by day 5. Echo was done on day 5 with no involvement noted and IVIG was given as well as high ASA doses. Today is only day 11 and she is remarkably better except she is still unable to crawl or walk. It appears to only be a problem with weight bearing and doctors are now trying to figure it out. Her next echo will be 4/10, she is on daily asa doses. I'm trying to get as much info as I can and would love to hear from others about their treatment courses when no involvement is seen early on and treatment began early.

Alonso Carlen aalonsoo@aol.com
Tampa, FL
Alonso: March 15, 2001 at 4 years old

Frank Scott dadscire@yahoo.com
Euijungbu, Korea
Eric: February 24, 2000 at 23 months old
Eric was diagnosed as having ear and throat infections initially, but when his high fever persisted we took him back to the hospital because we thought the medication wasn't working. He was diagnosed as having KD on day four and treated almost immediately. However, before being discharged from the hospital he was diagnosed as having left ventricle dysfunction and had already developed aneurysms, according to the echocardiogram and other tests. After a month of continued treatment at home, he had more tests and his condition is still the same. We are continuing the treatment at home and are scheduled for more tests next month. He's still very cranky, but is as energetic and as spontaneous as ever, but we fear for his future.

Rick & Michelle Stinson lilexp@aol.com
Jacksonville, FL
Griffin: May 1999 at 3 months old
We were in the hospital for a week during this time he had a rash, high fever, high white blood cell count, red eyes and red tongue and lips. Every time the hospital had a reason why not to be concerned. When the fever broke they sent us home because they said it was meningitis and he was cured. We were home a week then the fever came back and we went back into the hospital. After under going almost every test it was deiced it was Kawasaki Disease. After he was treated with the IVIG it was discovered that he had 3 aneurysms; two on the left coronary artery, 5 mm and 8 mm in size. On the right coronary artery was a 13 mm aneurysm. In March of 2000 it was discovered (heart cath) that the 13 mm aneurysm had become totally blocked. It was our worst fear. The doctors decide not to do anything different. He had to stay on the persantine and aspirin. He went in for a stress test recently. The doctor said there was ZERO heart damage. The blockage had started to dissipate and allow almost a normal amount of blood to flow through.


Leslie Guidry (Sister of Kelli Ann Guidry Ditmar) kguidry@pdq.net (parents e-mail)
Houston, TX
Kelli Ann Guidry Ditmar: 24 yrs old when she died
Illness began with the flu. All family members became ill with the flu, and Kelli was the only one that remained ill after some time. Kelli's illness became worse, with additional symptoms occuring. Doctors had been tending all of the family members, and treating everyone with antibiotics (Penicillin and Sulfur). This is why Kelli's syndrome was MISDIAGNOSED as Steven's Johnson Syndrome. It was not until her death, when an autopsy proved Kawasaki Syndrome. Kelli's illness manifested itself at the age of 15 months old. She was hospitalized for approximately 30 days, with high fevers (106-107 degrees), seizures, body rash, enlarged neck glands, and discoloration in the neck. She had a rash everywhere, mostly on the torso. Peeling of the skin on her hands also ocurred. When she came home from the hospital she couldn't walk, and had to relearn how to walk. We thought that Kelli's illness was Steven's Johnson Syndrome and never gave her Penicillin or Sulfur again in her lifetime (because that's what Stephen's Johnson Syndrome is - an allergic reaction to a medication and/or an infection). Had we known that Kelli had Kawasaki Syndrome, we understand that gamma globulin and Aspirin are now the chosen treatments. Kelli was a beautiful 24 year old woman. She was a college graduate of Texas A&M University (graduated in 1991), wife and mother of a healthy baby girl.
As a toddler and elementary school student, Kelli did show some irritability. In high school she contracted Mononucleosis, known as "Mono." This stayed in her system for over a year. During her lifetime she was a healthy and vivacious person! After she died, her OB/GYN indicated to us that her pregnancy was uneventful. Her heart was monitored during the delivery and showed no signs of a problem. The autopsy showed aneurysms throughout Kelli's entire body. She died 4 months after the delivery of her baby, Alexa Ann Ditmar.

We miss her every single day, more than words could EVER express!! I hope that sharing Kelli's story will help others who are experiencing this terrible ordeal. You all are in our thoughts and prayers.



Megan Labatch labatch@aol.com
Wilkes-Barre, PA
Daisy: October of 2000 and March into April of 2001 at 3 years old
After numerous doctor visits, one to the ER, and 12 days, Daisy was diagnosed with Kawasaki's. She responded perfectly to treatment and we never looked back. That was until recently (6 months later), we she got this fever that just wasn't going away. After 5 days, we got her back into the hospital. Again she responded well to treatment and we were sent home 24 hours later, today. However, now that we're home, she doesn't seem as good. I'm afraid her fever is coming back. I'll let you know how things go.

Khaled Yousef
I'm posting my daughter story for friends around who have relevant experience. My daughter of 5 ½ years. She got infected with Kawasaki disease about 3 months before (1/1/2001). Unluckily, the doctors around couldn't identify the disease till two weeks later. She got a swallow on the right side of the neck and high fever, red tongue, red skin and then start peeling and lately after two weeks a pericardia effusion. Chest specialist made a surgery for her to remove the fluids around the heart. After the two weeks, She is identified as a Kawasaki patient, then she was given intravenous immune globulin and Steroid, also Aspirin. Lately, She developed a aneurysm in 3 arteries. After about 4 weeks, she got a gain fever and admitted to the hospital, She had plural effusion. The doctors directly gave her intravenous immune globulin. After another 3 weeks, she got also admitted to the hospital with the same previous symptoms. Again, She is given intravenous immune globulin and steroid. She started taking Warfarin about 3 weeks before. The aneurysms size is increasing and her case became critical. In the last two occasions, She is diagnosed as Post Kawasaki.

Keith & Angie Barrett barrettangie@hotmail.com
Jacksonville, FL
Kaley: March 27, 2001 at 4 years old
Kaley was diagnosed on what we believe to be day 10. She had her tonsils removed on 3/16/01 and her fever began the next day. We were told that a fever was common after having tonsils removed so we treated it with ibuprofen. However, the fever came back as soon as the ibuprofen wore off and this continued until the IVIG on 3/27/01. Aside from the fever the next KD sympton, appearing on Saturday 3/24, was a swollen gland but this only lasted a day. About the same day her eyes turned red. On Monday, 3/26, the rash appeared and we went to see the pediatrician. He suspected KD but wanted to treat with amoxicillin for one night to see if fever came down...it didn't and the next day she was admitted. On 3/27 her lips chapped and she got the strawberry tongue and her hands and feet turned purple. They started the IVIG at midnight and by noon, 3/28, she was looking much better.

Susan Sherrington susan@3rdeye.com.au
Brisbane, Australia
Abby: December 1995 at 2 ½ months old
Our first baby, a daughter, Abby, was born on the 4th of October 1995, a healthy 7lb 7oz. In December she became unwell and was admitted to Hospital, diagnosed with Gastro-enteritis. She was discharged 5 days later, home on the 20th of December, just in time for Christmas. There was no follow up required by the Hospital. Abby was still a little pale, but the astric had ceased, and we were told it would take a couple of weeks for her to be back to her normal self, and she was better off