my 15 yr old son has MDS (?)

[mandymom]

Our completely asymptomatic son was found to have wbc = 2, plt = 70, hg = 12 and bone marrow bx (x2) with some dysplastic cells. One difficult thing is the Pediatric Hematologist and Pedi HemOnc and Adult Hematologists don't agree on diagnosis. The Pedi HemOnc are recommending transplant asap. The others think the pathology from bone marrow biopsy is a soft call. We feel we should get another (!) opinion

Can anyone advise me on pediatric MDS and their experience in getting DEFINITIVE diagnosis?

Thank you so much, Mandy

[Hopeful]

Definitely get that second opinion, preferably from someone with exerience in AA! In the absence of cytogenetic abnormalities or blasts, it is very difficult to distinguish hypocellular MDS from AA because there are so few cells. There must be significant cell dysplasia (greater than 10%), not just "some" dysplasia to call it MDS, in this case. If it is AA, HLA matched sibling transplant is the treatment of choice for pediatric patients.

[DanL]

definitely get a second opinion. although mds can happen at any age, it is very rare at 15. if you have an mds or aa center of excellence within a fair distance, it would be worth your time and effort. there are a good number of diseases that can cause mild dysplasia that should be ruled out, barring any cytogenetic changes.

[squirrellypoo]

Here's a list of the MDS Centres of Excellence. There are two in Mass, Dana Faber and Tufts. I know a few patients on here have had good experiences with DF.

[Bob Macfarlane]

Dr. David Steensma
David_Steensma@DFCI.HARVARD.EDU

or call David at

617-632-5202