Kawasaki Disease

I'll try to post more details about what happened over the past week in future posts. For now, suffice to say that this is the first chance I've had to sit down behind a computer for any length of time to do something like this. Most anyone who reads this probably knows already, but Penny was diagnosed with Kawasaki disease on Tuesday and we were told to take her to Children's Hospital in Birmingham that same day to begin IVIg treatment. Follow this link for a good synopsis of symptoms. The good stuff is on the second page, so just click through. Obviously, I've been to several websites about KD, and that one is the best one that I've found. I will say that the picture of the strawberry tongue on this website is nowhere near as red and bumpy as hers was. Nonetheless, it comes closest to our actual experience. Some of the other more "chain" websites like WebMD and others that pop up first on a google search don't seem to be all that accurate, or at best are incomplete.

I'll detail our experience at the hospital another time but the IVIg treatment went reasonably well. It's a powerful treatment that causes all kinds of side effects up to and including anaphylaxis, and not many hospitals offer it. Penny tolerated it well enough. It took eight hours. We had to back off of it twice during the night, but were able to get through it by 6 a.m. It made a huge difference. Most of her symptoms were gone by mid-day Wednesday. Luckily, we caught it in time and she received the treatment within the 10 day window. Chances of having an aortic aneurism in successfully treated children is about 25%, so she had an echocardiogram which was normal (but expected to be so early). She'll have another at 2 weeks post-IVIg and another at 2 months. From the time they started the IVIg until yesterday she was on high-dose aspirin (3 adult aspirins every 4 hours). She had to be on the high-dose until she was afebrile (no fever) for 48 hours. She woke up with a fever on her birthday after one full day of the high-dose, so we had to keep it up for an extra day. You'd think they couldn't get a fever on that much aspirin, but the doctors said aspirin is more of a blood thinner than a fever reducer, and anyway, she did - so I guess they were right! Since she's been afebrile for 48 hours, we started the long term low-dose regimen, which is half an aspirin every day for eight weeks, or until her 2 month echocardiogram.

It's scary on two fronts. First, of course, the 25% risk of serious heart disease that could right now be developing. Second, the real risk of Reyes Syndrome if she's exposed to the flu, chicken pox, or takes any ibuprofen while on aspirin. I can control the ibuprofen part, the flu and chicken pox not so much. She'll have to get a flu shot as soon as it's available this season. As for the heart disease, it's wait and see. So, that's where we are right now. I'll be back again to write about our hospital experience.