My daughter Katherine is 13, dx’d at age 7. She has never really been sick. This past November, she had a bad stomach bug, and vomited for only the second time in her life. The bug only lasted about 12 hours, but for a few weeks afterward, she said that her stomach hurt on and off, as if it never got completely better. It became worse in Feb., and thus began the odyssey of trips to various Drs. Her only symptom all along has been stomach pain. Nothing else.
So far, she has tried lactose-free, gluten-free. Monday she had an endoscopy w/ 10 tissue samples taken (no results yet). She has been on different meds, prescribed by the ped gastro. Initial blood work didn’t come up positive for anything. My first thought was celiac, and she went gluten-free for a few days, but I wasn’t sure what other names existed for gluten ingredients. (She tried the gluten-free on her own- Dr. said the tissue biopsy would reveal celiac, if that was the problem.) The pain is constant, but today she was pain-free for 20 minutes, and was so excited -she asked if I could take her to school. Then the pain came back. She’s missed about a month of school so far. She’s in 8th grade, and school is really easy for her, so she is keeping up, even in her trig class. On another note, she was told a few weeks ago that she would need hip surgery, and might never dance again. We see that specialist on 3/28. I’m wondering if this bit of news has made her stomach pain worse, by adding to it.
So we wait, wait, and continue to wait. She has been very frustrated, but is handling this much better than I’d expect. I guess T1 has taught us to be patient. So the big question is: what is going on? I realize it could be anything! She is being treated by a ped gastro, but she is consulting with an adult gastro, b/c Katherine is more like an adult, in that she is 6’ tall and 130 lbs. So they are turning over every rock here. It’s discouraging that everything takes so long. We live in a densely populated area, and are short on Drs., especially specialists. I made the endoscopy appointment more than 2 weeks ago, and the earliest appointment they had was 4/11! She got in Monday on a cancellation.
Sorry for the length of this post. If anyone has any ideas I’d love to hear them!