We had an extensive (2 hour) appointment with the Infectious Disease Specialist this afternoon. Ava's case is particularly difficult because she seems to have exhibited almost all the symptoms for Kawasaki Disease and yet the results from her SED and CRP tests to not indicate the kind of inflammation often associated with the disease. In fact her CRP score went from 11.66 on Wednesday to 7.2 yesterday and was down to 4.6 today. The doctor explained that even the 11 was not too high (you might see a similar score in a child with a bad ear infection). In addition, she has been improving since Thursday without any intervention from the doctors. In fact, her fever seems entirely gone, her skin shows only remnants of rash, and her lips and tongue have returned to normal. Her only persisting symptom today is conjuctivitis (red eyes). Obviously she has had some horendous virus if it is not Kawasaki's and it will take her some time to recover completely.
Perhaps the most difficult part of our decision about whether or not to treat is that they cannot come up with any relevant alternative diagnosis. In agreement with the recommendation of both our doctors we have chosen not to treat her with the IVIG treatment. We do reserve the right to change our minds in the next 2-3 days if her condition seems to worsen or we cannot live with the limited risk. He really believes she does not have it, but cannot give us any virus in particular that she might have instead. If we are, in fact, guessing wrong by not treating her then she has a 20% chance of developing some heart complications. We will have an echocardiogram in about 10 days which is when we'll be sure of the outcome. If it does not show any swelling of her coronary arteries then we guessed right. If it does, then we will have to live with our choice as it will be to late to treat her then. We believe strongly that the chance of that is very small, but there is no 100% guarantee or diagnostic test to indicate whether or not she has it. Please pray for us and for her. These next 10 days are critical. It is horrible to have to make an educated guess about something which has such horrible potential (however limited the chances).
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3 comments:
I will pray, pray, pray for wisdom! What a hard choice to make with such limited info! May God guide you CLEARLY! I ams o glad she at least seems to be feeling better.
Keeping you all in our prayers and keep us updated, please! It's hard to hear about something like this and be so far away from your family--we are thinking of you often!
We're all there for you regardless of physical location. Know that you are always in our hearts... especially Eva.
Thanks so much for the update.
Tio Rico, Karen, Ab & Kate
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