[CIS PIDD] [cis-pidd] Treatment Options for Griscelli Syndrome Type ii

[CIS-PIDD]

Colleagues:

I follow a 2yo boy with Griscelli Syndrome Type II with our Heme/Onc folks.  He has already had at least 2 major episodes of HLH, and although he survived he has reached his lifetime dose of etoposide.

Unfortunately, both of his parents have abandoned him and cannot be located.  A potential matched unrelated donor has not been identified after 1.5 years of searching.

Two questions:

*         Are there ANY other potential therapies for this boy's genetic disorder?

*         He is currently being limited to the home environment.  The Hematologist asked if there are any circumstances under which  the patient could attend pre-school?

Thank you all.

Joe Church
Children's Hospital Los Angeles


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