Pediatric MDS

[Dawn Burrow]

My little boy is six and was diagnosed with early stages of MDS. His neutrophils(146-800)
and WBC 2.0-2.6 are mainly affected and his rbc are larger than normal. My little boy has normal cytogenics. His uncle, my brother, showed symptoms at 12, diagnosed at 18, passed away from aml at 36 in 2013. His cytogenics were normal up until the end. Does anyone have experience with the pediatric side of MDS?

[Anonymous]

Dear Dawn, I know this is a difficult situation for you and I would recommend that you take your son to one of our Centers of Excellence in MDS for a second opinion. He should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment.

Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. In the United States, we have two MDS Center of Excellence pediatric centers – Dr. Gregory Hale in St. Petersburg, FL and Dr. Inga Hoffman in Wisconsin. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps. If we can be of any further assistance, please email me at patientliaison@mds-foundation.org.

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