This story is about my grand daughter. Amber was only 8 yrs old and having lots of sweating episodes, she would sometimes get sick and throw up. There were other problems also like times when she would just zone out, we think now from the bp being high. After several trips to the Dr and ER they ordered a CT scan this was in Nov 07. Amber had a large tumor between her shoulder blades. Because of the sweating and un controllable bp the endocrinologist ordered blood and urine test to check for a pheo. The tests came back positive. Amber had paraganglioma!! It took several weeks for them to get her bp under control and Amber had surgery Dec 07. Because of her young age it was recommended that she have genetic testing done. Amber tested positive for the SDHB gene. With this information it was recommended that both Amber's parents be tested to see which one had this gene. It was found that Amber's father had the SDHB gene. He had scans done and they found a small tumor on his cardit artery. Several test were run and he was put on medication to control his bp and the tumor was removed Dec 08 one year after Amber had her surgery. Amber had testing done in Dec 08 there was some disease in her lymph nodes but not enough to be real worried about. Around the middle of Jan she started having bp problems and was put on medication. The first of Mar 09 she had several scans ran and found to have several tumors in her abdomen.

Will be adding to this story as our lives change.