Doctors don't believe my daughter

[katelynsmom]

We have not been on this forum for a while. My daughter had a second colonoscopy and EGD done in May which was negative for celiac and crohns. They were going to monitor as if having IBD. Her pain never went away. She has been in the hospital since Wednesday. One doctor said it was terminal ileitis. One said possible gluten sensitivity. And another one says it could be chronic appendicitis or endometriosis. They are recommending an exploratory laparoscopy to see once and for all what is going on. But they cannot find any facility to accept her as an inpatient. Nothing is helping her pain! She does not want to take the narcotics and just wants someone to believe her. Has this happened to anyone else? We leave early in the morning to go to Washington DC to go to the next specialist.

 

[smhdoormouse]

it took a long time and many mis dx and many diff docs to get my dx best of luck hopefully she will get dx soon i am on a study drug and it has been life saving

 

[Ihurt]

All I can say is keep pushing until they find out what is wrong. There is a reason your daughter is in so much pain. Has she seen a gyneoclogist? Endo can cause extreme pain, but usually it is more so around when you are menustrating. Though I guess it could cause pain anytime. A lap will definitly rule it out as that is how it is diagnosed. What all are her symptoms? Have they done any tests to check her small intestines like small bowel follow through or MRE? I have been reseraching and found these are pretty good in looking at the small bowel. I am sorry she is going through this and I know it is hard on you being the mom. Just keep pushing until you get some answers. You both and in my thoughts and prayers..

We have not been on this forum for a while. My daughter had a second colonoscopy and EGD done in May which was negative for celiac and crohns. They were going to monitor as if having IBD. Her pain never went away. She has been in the hospital since Wednesday. One doctor said it was terminal ileitis. One said possible gluten sensitivity. And another one says it could be chronic appendicitis or endometriosis. They are recommending an exploratory laparoscopy to see once and for all what is going on. But they cannot find any facility to accept her as an inpatient. Nothing is helping her pain! She does not want to take the narcotics and just wants someone to believe her. Has this happened to anyone else? We leave early in the morning to go to Washington DC to go to the next specialist.

 

[JennaRae]

I always had pain as a child and doctors told my mom I was making it up, that I wanted attention. It took several years for my mom to find me a good doctor who would actually listen. I was 19 when I got diagnosed. She took me to a new doctor every week. She never gave up on me, never believed those doctors and I will never forget that. Your daughter will never forget it also.
Keep looking, im sure you will find someone to help your daughter. It's so frustrating.