Hi Lisa.
I know people keep recommending Dr. Maciejewski, but when I called to get an appt they said he only accepts adults. The doctor/hospital we are going to is literally right next door to the CC - University/Rainbow. I love his doc(s) - they explain things very well (with pictures!), answer every question (multiple times, because I can't seem to digest info too well), they explain everything to him and treat him as a person and not a kid. Do you think the next time I see or talk to my sons doc, I could ask her if she could talk to this other doc? Are doctors part of a small community that they would communicate with each other?
I know his bone marrow biopsy was 20%, I don't know that any of the other numbers qualified him to be severe, his wbc was 0.8, PLT 37, I don't know his retic count. The docs are the ones who told us it was severe, I didn't ask what the criteria was. I will now though - Thanks!
As for no symptoms, thats where I got to wondering. If not for a set of coincidences, it seems we'd never know he had this illness. Or condition. I'm still not sure which it's called. He seems perfectly healthy!
No, I won't second guess his doctor; they know so much more than I do.
Thanks for your help,
edith
Quote:
Originally Posted by Lisa V
I agree with the others that Dr. Maciejewski is one of the top AA specialists in the country. If we were anywhere within a couple hundred miles of him, we'd go see him. You could at least ask your doctor to consult with him (or Dr. Margolis or Dr. Young) if you don't feel confident in his judgement.
Having said that, any decision to treat must be based on a combination of counts and cellularity, not symptoms. Many patients are essentially symptomless. Severe AA is defined as having a bone marrow cellularity of less than 25% and at least two of the following: a neutrophil count less than half a billion per liter (<500/mm³), a platelet count les than 20 billion per liter (20,000/mm³), a reticulocyte count less than 20 billion per liter (<20,000/mm³). VERY severe AA is defined by a neutrophil count of less than 0.2 billion per liter (<200/mm³).
If your son meets these criteria, then your doctor is right to want to move quickly to treatment, either with a marrow transplant if he has a suitable sibling donor match, or with ATG if he doesn't. People's norms may vary slightly, but not that much. It's also important to note how quickly his counts are dropping in order to gauge how much time you have to think about things. Watch and wait is appropriate for Moderate AA (higher counts and percentages than those listed, but still below normal), but once you get to where you are needing to be transfused, that in itself carries risks and complications which only increase with time. You may find one or two SAA patients that have spontaneously improved, but statistically, untreated SAA will result in death 80% of the time. Whatever your feelings about western medicine (and I don't disagree that many agressive procedures could probably be avoided), this is not a good playing field to test them on. Just my opinion.
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