Carcinoid Syndrome Support Group

Carcinoid syndrome refers to the array of symptoms that occur secondary to carcinoid tumors. Carcinoid tumors are discrete, yellow, well-circumscribed tumors that can occur anywhere along the gastrointestinal tract (GI). They most commonly affect the appendix, ileum, and rectum. These tumors are unique in that they are endocrine in nature.

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11 year old with probable Carcinoid Syndrome

I could use any advice or suggestions regarding this:
My 11 year old son began having episodes of facial flushing accompanied with a rapid heart rate in September of 2011. His Chromagranin A level is elevated but all other peptides are normal. His 5HIAA is normal as well. While unusual in a child, the doctors suspected Carcinoid Syndrome as these episodes were occurring 1-2 times per day. An OctreoScan revealed a questionable spot in his lower right quadrant. He underwent surgery in March 2012 and his appendix along with 13 lymph nodes were removed. They were unable to locate any Carcinoid Tumors. Ironically, since surgery, he has only had 7 of these episodes even though the doctors were unable to locate and remove a tumor. They are not sure what to do next. Has anyone been in this situation before? Would you be inclined to believe there is still a tumor somewhere in his body since he is still experiencing some symptoms of the Syndrome? Or could there be another explanation all together for his experience? I would appreciate any advice!!