missmechelle's Journal

HI. I came to this website in search of support, help, guidance anything I can get. My daughter was diagnosed with Behcets this year. It came after many doctors offiice visits starting about 4 yrs ago. The docs always just said its her genetic makeup to be a sickly child. I went with that. 2 years ago she got really ill-fever of about 106 that is with tylenol and motrin in her. Of course took her to the doctor they prescribed an antibiotic like always since she tested negative for flu, strep, mono - this was the case everytime. Finally, I took her to the childrens hospital because she had sores in her mouth and a few on her privates. They had a infectious disease doctor look her over and tested her to see for herpes - herpes test came back negative. Sent us home with the diagnoses ADNO virus and the sores were a secondary infection from the ADNO. OK I went home thinking doctors know what they are talking about. That whole year she always had atleast 3-5 mouth sores in her mouth. Constant rinsing with different things. When she would start to get more than 5 sores we would know she was getting ill. She got ill many times that year and always had the sores and always ran a temp atleast 104. February 2009 she fell very ill again. Sores in the mouth, a few sores in her privates, HIGH fever running around 105 and getting as high as 108. Took her to the doctor they said keep giving her tylenol and motrin and here is some antibiotics. I got to the parking lot and said THIS IS NOT NORMAL so I took her to the childrens hospital they blew us off. The next day I called the infectious disease doctor that had seen her the year before she saw us right away and realized this WASNT normal. So she did bloodwork, called a gastro doctor-they wanted to see us right away - by this time she had sores on her privates and in her crack of her litte butt (sorry to term it that way). They wanted to do a endoscopy and colonoscopy on her to check for chrons or any other damage. By this time she had sores in her ears too. Once they popped they would drain - very gross drainage. But they didnt see any signs of chrons just major damage from ibuprofen, so she is no longer allowed to take that. But after seeing many doctors the rheumatologist has came to Behcets disease. He is treating her with prednisone and colchicine. I am very confused with this disease. I read about prednisone and all the things it can do to your body and I just dont want this to happen to her. I need help anything you can offer. She started school a month ago and has been out 8 days so far - sick-fever and mouth sores. This is really rough on me. I thank you much
Posted on 09/17/09, 07:09 pm