I have been researching my health condition on the internet. The doctors here in Salt Lake do not understand very much about gastro paresis, they say it is very rare in kids and usually is quite short in duration. NOT mine.....I have been researching Dr. Carlo DiLorenzo in Ohio and he is world renowned for his work in this area. People travel from all over the world and yes, even from Draper, Utah to seek his expertise. He performs a procedure called a GI Pacemaker. It is apparently similar to the heart pacemaker but is placed on the side of my stomach. At Primary Children's Hospital, the doctors are unfamiliar with this procedure and it is still not FDA approved for use on children but we are hopeful to get a pacemaker anyway!
Two teenage girls have YouTube videos of their adventure with Gastro Paresis and their excitement of finally getting help with a GI Pacemaker. This gives me hope and makes me smile......which I don't do enough of lately. They have experiences that are like mine and so I have followed their stories and today, I contacted a girl named Megan by facebook.
She called my phone today and we had a great talk!!! I hope that I can help other people when I am better. Because we are both girls and teenagers, we were both often thought to possibly be anorexic or bulimic or just in need of attention.......NOT even close!!!!! I cry for food all of the time and when my friends and family are eating, I am always sad and VERY frustrated. It is so helpful to talk to someone who understands all of the pains and struggles that are associated with this little known condition. She also has had a great amount of pain in her stomach, which very few believe because they haven't experienced it and think that if your stomach doesn't work you shouldn't be feeling anything......not so!
My mom is going to talk with her mom today and see what they had to do to get the pacemaker. We will begin our journey to Ohio on Tuesday........just 2 days and we can get some of our questions answered!!!
I'll let you know how things are going........keep me in your prayers!!! XOXOX