• Anonymous posted an update in the group Group logo of Parents of Diagnosed ChildrenParents of diagnosed children 4 years, 8 months ago

    Bilateral Choroid Xanthogranuloma in Grandson

    Hello, I am Grandma but very involved with the now 5yr old grandsons journey. Diagnosed when he was 3,saw numerous pediatric specialists, neurosurgeon and neurologist disagreed about surgery left it to God,  one convinced the other, had surgery in April 2013 (he was 4 then), Upstate Golisano Childrens Hospital 8-1/2 hours surgery, 2 days in the hospital only 2 small stitches as it was MRI guided steriotatic laser ablation surgery. Tumors are shrinking as of September 2013 BUT recently having increase of symptoms a MRI scheduled in Jan 2014 with a office visit follow up (he has MRI every 3-4 months to follow progress) Looking for anyone with experience dealing with this rare tumor and rare to be symptomatic. And to let others know of other minimally invasive surgical options available. Because of the rarity of this Dr.s can’t tell us of how healing progression will go, we are the experts as many of you are with your own journey. I know it will be a journey, most things are in healthcare.