Vasculitis Awareness Week-- May 3-9, 2009

WELCOME TO VASCULITIS AWARENESS WEEK - May 3 - 9, 2009
TODAY is the start of Vasculitis Awareness Week. During this special week, if each of us makes an effort to raise awareness about vasculitis, think of the thousands of lives we can touch. We all have been affected by this disease, and we know how important it is to educate others and get them involved in our goal to find a cure. During this week, let's make the Vasculitis Foundation come alive by showing our passion by educating others about vasculitis. No effort is too small. This is our week to show the world that we are "Sticking Together for a Cure." And together, we can make a difference. Thank you for being part of our family.
Joyce Kullman
Executive DirectorVasculitis Foundation
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Isabella's Kawasaki Disease Story!

Isabella’s Kawasaki Disease Story
On May 16, 2007 I rushed my 4 month old daughter to St. Lukes E.R., it was close to bed time when she started crying non-stop while pushing her knees into her stomach and stiffing up her whole body. She had a fever the whole day and was dismissed as a simple teething fever by her pediatrician, yet once we arrived at the E.R. her increased crying and pain worried me more. As soon as she arrived dozens of doctors and nurses surrounded her taking all types of samples and conducting all sorts of tests including a spinal tap. 2 A.M. came and still no word on what she could have, we were transferred to a room and waited for the results wich all came back negative. The next morning she had finished breast-feeding when she again began stiffing up and pushing her knees unto her stomach, the doctors checked her and concluded she had a condition were her instentines were tangled up and was going to need immediate surgery. We were transferred to California Pacific Medical Center with a scheduled appoinment upon our arrival for an abdominal ultrasound, once it was confirmed that her intestines were tangled up she was supposed to be operated right away, yet the ultrasound showed no sign of that it showed her gallbladder being extremely enlarged and was put on IV fluids since feeding her could cause her gallbladder to burst. We were back to the beginning with no idea what was wrong with her, doctors came in and out with no results and no clue to what she had, on our second evening a doctor came in to inform us she had a "virus" and was going to be observed overnite and released the next morning. It all felt so wrong a "virus" with no name and no treatment nor medicine was going to be given to her since she was so young. The high fevers continued reaching 105 degrees, on the 3rd morning the doctor arrived to discharge her when I showed her a huge rash she had developed overnite all over her chest and back, she checked her, talked to other doctors and said " I think she has Kawasaki disease" I said KAWA WHAT? Kawasaki disease she told me like the motorcycle. A million questions rushed to my mind when I was told this Was she going to be ok? was the first, yes, she said, she explained to me it was a disease that caused inflammation to the heart and body, damage to the heart was possible but since she was diagnosed early the chances were slim. An infectious disease specialist came to see my daughter and concurred with the doctors it was Kawasaki disease, on the 4th night she was given an IVIG treatment, she was observed 24 hours after the treatment was done. By then her tongue was swollen bright red "strawberry toungue" her lips were so cracked dry they bleed to the softest touch, the rash had spread, and she was in extreme pain I felt helpless not being able to help my baby her only comfort was being held which I did day and night. On the 5th night the fevers continued, extremely high, she was given motrin, yet it only kept it down for a few hours, new test showed she had a few damage to her liver due to so much motrin so they started her on aspirin. A second IVIG treatment was started on the 5th night, a few hours into it I felt water on her arm and found the needle had fallen out from her tiny hand and the IVIG treatment had been leaking out, the nurse had to stop the treatment for the doctors to put a new needle and treatment in. Hours later close to the 6th day the treatment was started again, once it was done she was again observed for 24 hours, my baby was slowly coming back to herself she was playing again and slowly began drinking pedyalite. She was observed on the 7th day through the 8th day of her stay and on the 8th night the fevers had return, high again. A 3rd treatment was going to be started on the 9th day, all she did was sleep in my arms, she was checked and was found that her gallbladder was slowly returning to its size and the rash was dissapearng so they couldnt understand why the fevers persisted, a bright doctor checked her ears and found she had an ear infection as well that had developed along with a cold she caught at the hospital. We were relieved, still she was observed overnite and we would be released the next morning. She was released on the 10th day :) she was given an antibiotic for the ear infection, the fevers had gone down, the rash was gone, she had two echocardiograms done during her stay which found no murmurs or aneurysms on her heart, she was going to be fine. She was given aspirin for 2 and a half months yet was cut down to a month on her follow up cardio appoinment which again found no damage to her heart. A week after she was released the skin of her fingertips and toes began to peel off. A year later she had an abdominal ultrasound done that showed her gallbladder was back to its normal size. The worst feeling in the world is seeing your child in pain and being so helpless not being able to do anything for them, I am so grateful to all the doctors at California Pacific Medical Center who treated my daughter who diagnosed her correctly and soon enough. Isabella is 22 months old now, she loves swimming, dancing, Dora the Explorer and going to the park, she is my strong Kawasaki baby!

CRASH AND BURN

CRASH AND BURN (a simplified form of detecting Kawasaki Disease symptoms)
C-CONJUNCTIVITIS (EXTREMELY RED EYES)
R- RASH (ON BODY)
A- ARTHRITIS ( JOINT PAIN)
S- STRAWBERRY TONGUE (RED, SWOLLEN TONGUE)
H- HANDS (SKIN PEELING)
AND
BURN- UNCONTROLLED HIGH FEVER PERSISTING LONGER THAN 5 DAYSTHE CRASH AND BURN IS A SIMPLIFIED FORM OF DETERMINING THE SYMPTOMS OF KAWASAKI DISEASE.

Understanding Kawasaki Disease

Understanding Kawasaki Disease

Kawasaki Disease is an acute vasculitis (disorder involving inflammation of one or more blood vessels) which typically affects young children. Most often, the patients are young boys or girls in the first three years of life. After the age of 10 years, Kawasaki Disease is extremely rare, and the diagnosis should be regarded with suspicion.
Symptoms
The disease usually begins with a fever, unresponsive to Tylenol or aspirin, which continues for at least 7 - 10 days. Many - but not all - children develop a swollen area on the neck which looks like an infection. Doctors usually recognize the disease when they see an unresponsive fever accompanied by a rash; dry, cracked lips or other changes of the mouth or tongue; inflamed eyes (conjunctivitis); and arthritis or heart changes without other explanation.
The most important part of Kawasaki disease is its tendency to cause inflammation of the coronary arteries, which supply blood to the heart. Changes can be found on echocardiogram in about 15% of patients. A few of these patients will have aneurysms (balloon-like dilatations) that can be very serious. If one of the aneurysms becomes blocked or bursts, the blood flow to the heart is interrupted and the child can have a heart attack. Fortunately, this is very rare, and deaths due to Kawasaki disease are less than 5/1000.
Treatment
Treatment for Kawasaki disease is intravenous (IV) gammaglobulin. Large doses of intravenous gammaglobulin are usually very effective in stopping the fever of Kawasaki disease and seem to limit or prevent aneurysm formation as well. It is very rare for a child not to improve with gammaglobulin. Although some children require two treatments, if there is no improvement, the diagnosis should be reconsidered.
Other diseases can be confused with Kawasaki disease, which may require different therapy. Some doctors are reluctant to give gammaglobulin if the symptoms have been present for more than 10 days. In truth, gammaglobulin is still effective after the first 10 days, but the likelihood of preventing aneurysms is lower than if it is given during the first ten days. Recent studies have shown that corticosteroids are effective for many of the children who fail to respond appropriately to gammaglobulin.
Once the acute inflammation is brought under control, the chronic symptoms of Kawasaki disease are usually controlled with nonsteroidal anti-inflammatory drugs like naproxen or ibuprofen. Many cardiologists and some rheumatologists still use aspirin, but the other nonsteroidal drugs are considered safer, easier to give, and equally effective.
Where does Kawasaki Disease come from?
The etiology (origin) of Kawasaki disease is unknown. There have been many theories, but there are none that are generally accepted. It is not contagious to other children, although there are a few cases of brothers and sisters developing the disease. In rare cases, a few children have had two episodes. The disease often occurs in epidemics that occur every few years. In the winter of 2002, for example, the author received an increased influx of inquiries about the disease.
Recovery
Usually, children recover completely with proper therapy. There is some concern that children with damaged coronary arteries will have problems later in life, but this seems to be very rare. If your child has Kawasaki disease, he will need to be followed by his primary doctor, a cardiologist, and perhaps a rheumatologist or other specialist (depending on the symptoms).
The vast majority of children with Kawasaki disease recover and resume normal lives. Your doctor should be able to tell you if there is any reason to be unusually concerned. If your child has not recovered appropriately after an episode of Kawasaki disease, it is important to be sure that the diagnosis is right and that another disease requiring different therapy has not been missed. A pediatric rheumatologist is the specialist best able to do this for you.

What Is Kawasaki Disease!

What is Kawasaki Disease?
Kawasaki disease is an illness that involves the skin, mouth, and lymph nodes, and most often affects kids under age 5. The cause is unknown, but if the symptoms are recognized early, kids with Kawasaki disease can fully recover within a few days. Untreated, it can lead to serious complications that can affect the heart.
Kawasaki disease occurs in 19 out of every 100,000 kids in the United States. It is most common among children of Japanese and Korean descent, but can affect all ethnic groups.
Signs and Symptoms
Kawasaki disease can't be prevented, but usually has telltale symptoms and signs that appear in phases.
The first phase, which can last for up to 2 weeks, usually involves a persistent fever higher than 104° Fahrenheit (39° Celsius) and lasts for at least 5 days.
Other symptoms that typically develop include:
severe redness in the eyes
a rash on the stomach, chest, and genitals
red, dry, cracked lips
swollen tongue with a white coating and big red bumps
sore, irritated throat
swollen palms of the hands and soles of the feet with a purple-red color
swollen lymph nodes
During the second phase, which usually begins within 2 weeks of when the fever started, the skin on the hands and feet may begin to peel in large pieces. The child also may experience joint pain, diarrhea, vomiting, or abdominal pain. If your child shows any of these symptoms, call your doctor.
Complications
Doctors can manage the symptoms of Kawasaki disease if they catch it early. Symptoms often disappear within just 2 days of the start of treatment. If Kawasaki disease is treated within 10 days of the onset of symptoms, heart problems usually do not develop.
Cases that go untreated can lead to more serious complications, such as vasculitis, an inflammation of the blood vessels. This can be particularly dangerous because it can affect the coronary arteries, which supply blood to the heart.
In addition to the coronary arteries, the heart muscle, lining, valves, and the outer membrane that surrounds the heart can become inflamed. Arrhythmias (changes in the normal pattern of the heartbeat) or abnormal functioning of some heart valves also can occur.
Diagnosis
No one test can detect Kawasaki disease, so doctors usually diagnose it by evaluating the symptoms and ruling out other conditions.
Most kids diagnosed with Kawasaki disease will have a fever lasting 5 or more days and at least four of these symptoms:
redness in both eyes
changes around the lips, tongue, or mouth
changes in the fingers and toes, such as swelling, discoloration, or peeling
a rash in the trunk or genital area
a large swollen lymph node in the neck
red, swollen palms of hands and soles of feet
If Kawasaki disease is suspected, the doctor may order tests to monitor heart function (such as an echocardiogram) and might take blood and urine samples to rule out other conditions, such as scarlet fever, measles, Rocky Mountain spotted fever, juvenile rheumatoid arthritis, or an allergic drug reaction.
Treatment
Treatment should begin as soon as possible, ideally within 10 days of when the fever begins. Usually, a child is treated with intravenous doses of gamma globulin (purified antibodies), an ingredient of blood that helps the body fight infection. The child also might be given a high dose of aspirin to reduce the risk of heart problems.