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

Fri Sep 16 16:27:15 EDT 2016

Joe:

Hope all is well with you.

Very sad case.  I forwarded it on to Carl Lenarsky to see if he has any
additional thoughts.

By the way, the case report you published several years ago regarding the
13 year old boy with XLA and recurrent enthesitis was a life saver to me!
I have a 16 year old boy with XLA and an amazingly similar story.  After
his 3rd admission for suspected septic arthritis (all knees or ankles) with
negative cultures and PCR studies, I came across your report and started
NSAIDs.  Fingers crossed, no problems subsequently.  HLA-B27 pending.

Best wishes,

Robert

Robert W. Sugerman, M.D.

[image: Description: Description: Description: Description:
cid:image001.jpg at 01CD31EB.7E39DF90]

                                                               of North
Texas

             7777 Forest Lane,  Suite B-332

                         Dallas, TX  75230

       Tel: 972 566-7788    Fax: 972 566-8837

                      www.dallasallergy.net

On Fri, Sep 16, 2016 at 1:08 PM, CIS-PIDD <cis-pidd at lists.clinimmsoc.org>
wrote:

> 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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