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Hi MaryJ,
MDS is very rare in children. You definitely want to get a second opinion if this is being thrown around as a diagnosis. I'd recommend consulting with the doctors at Stanford, as it is not that far away from you. Dr. Jason Gotlib is an MDS expert and also is very knowlegable about related genetic diseases. I don't know if he will see a pediatric patient, but he could probably refer you to someone at their Pediatric Center of Excellence if he doesn't. It is worth a phone call to check this out.
Where are you now? Do you have an HMO? I found that with some phone calls, my HMO approved a one-time-second-opinion consult outside their network. After that, I paid out of pocket for my expert consults while having all the labs, BMBs, etc done at my local doctor.
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58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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