Follow up appointments

There are so many follow up appointments for her its unreal. I had to get a calender book just to be able to keep up with all of them. There's alot. Yesterday the 4th we went and had her Ecocadiagram done at Wolfson's and bloodwork while we were there. I will get the results of all that on Friday when we go back the Dr.

My daughters Story

My 4 year old daughter was diagnosed with strep throat on June 23rd 2009 she was put on Amnicef for 10days. She did the 10 days and was much better. 3 days after she finished the amnicef she came down with 103 fevers. I took her to the dr on July 6th and she tested positive for strep again. She was put on Augmentin. Well on July 8th I took her back to the dr because her neck started to swell. She was given a shot of Rocephin in each leg. I thought she would be better by morning. Well over night she got worse. I took her back to the dr on July 9th and she had a bad rash, her face, hands, feet were swelling. The dr took one look at her and said "I think she has Kawasaki's disease" I had never even heard of it before. She was admitted to the hospital that day. The infectious disese dr came in and said he thought it was allergic reaction to one of the medicines. But at this point she was running 104 fevers. I was not happy with his answers. He put her on high doses of benedryl and ordered lots of blood work, chest x-rays, and an eco cardigram. The next day (friday) she wasnt doing any better, she was getting worse. The fevers were pushing almost 105 and her lips had swollen so much they cracked and were bleeding. We couldnt touch her because it hurt her so much just to touch her. That day a NEW infectious disease dr came in and said she had Kawasaki's disease and they wanted to give her the IVIG. Well at 9pm she started the first dose of the IVIG. 30 minutes after they started it she spiked a fever of 105 and was shaking and all she could say was "freezing" over and over. We got some tylenol in her and she went to sleep. She was on 300mg of asprin every 6 hours. Well on Saturday the fevers started to go down but hung around 101. On Monday the infectious disease doctor decided she needed another dose of the IVIG, the swelling hadnt went down. So at 1pm they started the 2nd dose. They also said if she didnt start to eat by morning they were going to put a feeding tube down her nose. She hadnt ate in 8 days at this point, and she was loosing weight. The next morning Tuesday morning she was hungry, she ate pancakes and sausage. We were so happy. She was drinking more also. She was sitting up in the bed and playing with playdoh. She was still in alot of pain though. She was still on asprin, zithromax, zantac, and benedryl. She was diagnosed with mycroplasma pnemounia thats what the zithromaz was for. On wednesday she was doing ALOT better. Eating and drinking and I actually got to hold her. I was happy. She was smilling and laughing. She still couldnt walk yet though. They released us that night from the hospital because she had been fever free for over 48 hours at that point.
She lost a total of 9 pounds and for a 4 year old thats alot. She goes to the dr once a week right now, and she cant go out in public because she can NOT get sick. She has blood work done once a week and is scheduled for an eco cardigram every 2 weeks. She will see the infectious disease dr next week also. She started to walk again finally, she still has some pain. Her hands and feet are peeling like crazy. Her toe nails are actually peeling off. She says it doesnt hurt though. She takes a baby asprin every day now. I dont know for how long yet. I am just happy that her pain level is lower.

What is Kawasaki's 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 single 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.