Kawasaki Disease: The Ali Chronicles - Baxter's IVIG

Note: This entry is not meant to replace professional medical advice. Please consult with your child's physician if your child has fever or is sick.

When a patient is diagnosed with Kawasaki Disease, the objective of the attending physician is to reduce the risk of cardiac complications. In Ali's case, she was given IVIG twice, one dose given on the 5th day of her fever (June 17) and another on June 25.

IVIG stands for Immune Globulin Intravenous. It is derived from human plasma. "Gammagard" is the name of Baxter Healthcare Corporation's product which is what was administered to Ali.

Based on the explanation of Ali's doctors, IVIG reduces the risk of cardiac complications from 30 to 3%. My hubby, then, made a comment, that in effect, we are "buying probabilities."

Gammagard is administered based on the patient's weight in kilograms. In the case of Ali, she needed 9 vials each time, with total cost of P71 thousand. The IVIG is typically administered over a 12-hour period and in Ali's case, the flow rate was 36.4 ml per hour.

The IVIG is attached to a machine that regulates the flow. An alarm goes off when the vial is about to empty. When the IVIG was being administered, Ali had an IV attached to each arm. One for her other medication, to keep her from being dehydrated and the other for IVIG.

When the IVIG was first given, in the first hour, the doctors monitored Ali's heart rate, blood pressure, and breathing every 15 minutes. They mentioned that just as in the case of any other medication, it is difficult to know how a patient will react. We were asked to watch out for difficulty breathing and other signs.

We were told that in most cases, the effect of IVIG is "dramatic." In 90% of the cases that Ali's doctors have seen, the fever disappears within 24 to 72 hours. In a few cases, some patients have low-grade fever for a few days while in fewer patients still, a second dose may be needed as the patient does not respond.

Ali was classified as a "partial responder." There was some improvement in her external appearance (her rashes, for example). The water outside her heart disappeared, as shown by a 2nd 2D Echo done after the first IVIG. Her over-all demeanor and well-being (she was drowsy, irritable, and itchy), however, did not improve "dramatically," as expected. Her fever would disappear from time to time - but would come back - although the length of time for it to recur lengthened and her temperature was going down.

On one occasion though, her fever went up again. On top of that, some small rashes started to reappear on her arms and legs. After the first IVIG, the doctors said we would observe for 48 to 72 hours and if the fever would not recur, we could already be discharged.

Anyway, in the light of how Ali progressed after the first treatment, the doctors decided to give a second dose. The first dose, by the way, to be more effective, has to be given within a so-called "golden period," which is within the 1st ten days of the fever. Ali got her first dose within that period - but had to undergo a second dose.

The doctor told us that based on her experience, 80% of patients respond to a second dose. We then asked what the next step would be if the 2nd dose still didn't result in the desired outcome which was to get rid of the fever. The doctor then said that the next step would be to administer steroids via IV over a three-day period.

Mercifully, Ali responded to the 2nd dose. Her personality improved quite fast. She was talking and moving more. Her appetite picked up and so we were grateful and happy. It took us about 5 days though for us to eventually leave the hospital.

All throughout this treatment, once Ali had been diagnosed with Kawasaki, she also had to be on aspilet or aspirin. At the start, she was on 3-4 tablets of aspilet, 4 times a day and which was reduced to 1/2 tablet a day upon discharge. To date, her aspilet continues - and will only be stopped once her blood readings normalize. In the meantime, she has to have a flu shot, to guard against the flu virus, exposure to which may result in yet another disease - because of her taking aspilet. We have been asked by her doctor to watch out for recurrence of fever, continuous vomiting (even when not coughing, eating or drinking) and a change of sensorium -- where the kid may just be always sleeping, inactive, or seemingly disoriented.

So far, Ali has been okay. She is more talkative than usual - as if to make up for the two weeks in the hospital. We are confident that she is fully healed - given your prayers and God's graciousness.

Next time: Ali's comfort food and some tips