Saturday, January 03, 2009

Kawasaki Syndrome

With sadness, I read of the sudden death of John Travolta's 16-year-old son, Jett. The family has my sincere condolences, and I can only imagine the profound shock and sorrow that they are now experiencing. The current media scrutiny regarding Jett's medical history is cruel, in my opinion, and can only be adding to the family's grief.

The Travoltas absolutely have the right to religious freedom and are entitled to confidentiality regarding their child's medical history. I can't see any benefit for speculation or criticism regarding the young man's health. Both John Travolta and his wife Kelly Preston have been vocal in the past about their son's very serious bought with Kawasaki Syndrome when he was less than two years of age. The assertion that Kawasaki's Syndrome (a.k.a. Kawaski Disease) has some bearing on Jett's death at age 16 remains to be seen pending the result of his autopsy.

Early in my nursing career, I specialized in pediatrics and worked at Providence Memorial Hospital in El Paso, Texas. I remember only two children with Kawasaki's Syndrome in the few years that I worked there. In each case, the patient was just at toddler age and suffering from very high fevers (104-105 degrees F), the classic red, swollen, and pitted tongue (described as strawberry tongue), and a firey-red rash, particularly on the extremities. The rash eventually sloughed off leaving bits of peeling skin on the palms and soles of the feet. Other symptoms added to the child's misery: joint pain, sore throat, malaise, and conjunctivitis. Typically these kids were several days into the course of the febrile illness before it was clearly diagnosed as Kawasaki's Disease (as there are many febrile illnesses that occur in childhood). As soon as it was a definite diagnosis, attention was made to preventing any coronary artery complications by starting the child on daily aspirin [note: children on aspirin-therapy should receive an annual flu shot to avoid Reye's Syndrome.] In addition they were treated with intravenous immunoglobulin to boost their immune system. We would typically have these children hospitalized for days until they recovered sufficiently to go home. Thankfully, it's a rare condition. Unfortunately the specific cause of Kawasaki's Syndrome is still unknown.

To quickly access reliable information about Kawaski's Disease, I'm recommending "Kawasaki Syndrome" from the Center for Disease Control (CDC) and two scholarly articles, (1) an April 2008 article published on Medscape, "Pediatrics, Kawasaki Disease," and (2) from May 2007, Journal of Internal Medicine, "Acute Kawasaki Disease: Not Just For Kids."

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6 comments:

Joe Musson said...

He was 16 and had Kawasaki before he was 2.
I see no long-term effects of Kawasaki reported except cardiac, which was not what he had.
If he had the high-dose asprin cure, could he have got REYE syndrome,which could cause the cerebral effects?
I know another 17yearold with similar symptoms who had Kawasaki at 6 months.

Carolyn Cooper, MPH, RN said...

Joe, Reye's Syndrome is typically preceded by a period of remarkable vomiting without nausea before the cerebral effects are clear. Then there is a very rapid progression towards coma that can lead to death.

I just read experts of a news release from John's attorneys which states Jett was no longer taking his seizure medication (for grand mal seizures.) The Depakote was discontinuted due to concerns about side effects. The statement went on to assert that Jett was recently suffering from at least one major seizure per week.

Sometimes the cause of epilepsy can be determined--other times it cannot. Here's what the Mayo Clinic has to say about it: http://www.mayoclinic.com/health/epilepsy/DS00342/DSECTION=causes

I'm sure we will be hearing so much more about this for a long time to come. So unspeakably sad for the family . . .

Anonymous said...

at sixteen months my daughter also had kawaski
as she has grown older (now 13 years) she is constantly sneezing and has a runny nose as well as feeling nauseus a lot of the time. but has no cardiac problems as far as we can see. I have been to see GP who gave her allergy tablets for a dust allergy but I am still conserned about this ??

Carolyn Cooper, MPH, RN said...

Hi, Anonymous Mom, I certainly understand your concern about your daughter's chronic/ongoing upper respiratory problems.

I have a few questions and a bit of advice. First I'd want to know:

1. Have the allergy medications helped at all? (If yes, how so?)

2. Is there any particular season where the symptoms are better (or worse)?

3. Do the symptoms improve in any particular setting? (For example, is the sneezing/nausea/runny nose worse at home, at school, or somewhere else?)

4. If allergy symptoms are worse in any one setting, I'd wonder if there was any possibility of mold exposure? Also, even in relatively new homes, there have been reports of building materials imported from China that are a health concern due to toxic chemicals they contain. (Here's a link from the EPA: www.epa.gov/oswer/docs/chinesedrywall.pdf)

Finally, Anonymous Mom, I would point you to this link that will give you advice about documenting specific symptoms about your daughter's health. The more specific we can be about how often symptoms occur, exactly what is happening (when and where)is a tremendous benefit--you will be providing a huge source of concrete information to your doctor.--you can simply type, "keeping track of symptoms" in my blog search box (upper left hand corner) or cut and paste: http://promotinghealthandpatienteducation.blogspot.com/2008/12/keeping-track-of-symptoms.html

Mother's instincts are not to be taken lightly--as a mom I truly believe that. A complete physical exam--not just dealing with the allergy symptoms may be in order. Ask your physician or nurse practitioner, and if you feel your concerns are being disregarded, don't hesitate to look for another health care provider. Best to you . . .

Anonymous said...

My son has got Kawasaki three weeks ago. The diagnosis of the disease has been delayed because of negligence from the hospital doctors. My father is a pediatrician working overseas and when I asked him and told him the symptoms that my son has, he said it is Kawasaki and advised us to immediately ask for treatment, but unfortunately the doctors did not believe us when we asked them for Kawasaki diagnosis. They refused to make the heart echo for my son two days after my son got very sick and couldn’t breathe properly, when we insisted that it is Kawasaki, they finally done the heart echo and found the coronary inflammation. Then they admitted him for getting the treatment. Two days of negligence could kill my son.
I'd like to sue the hospital. Does any one know how can I do that and provide strong evidences about the long term side effects of this disease?

Patient’s Mother

Australia

Carolyn Cooper, MPH, RN said...

Dear Patient's Mother, How is your son doing now? Thank the Lord that you were able to get the excellent advice from your Dad and then have the wherewithall to keep advocating on behalf of your son. It's an all-too-common scenario, unfortunately.

My gut reaction is to say keep focusing on your son's recovery for this moment, be vigilent and check out some of the links in the last paragraph of the article above for some good, reliable links on Kawasaki's. Send me an email if you like, and I'll try to get you some specific scholarly articles on your specific questions.

As for litigation with your healthcare team, perhaps discussing this with your father as he is a physcian and knows the ins and outs of this type of liability.

Sincere best wishes for your little one's healthy recovery.