Potaknuta ovim pismom na stranom forumu: _______________________________
haven't been to this forum in a while, but wanted to share that my daughter's initial diagnosis four years ago (pauciarticular extended arthritis with uveitis) may change next week due to information I learned at the GI round table at the Arthritis Foundation's 2009 National Juvenile Arthritis Conference.
For four years, I have been asking my daughter's various doctors (probably around 8-10 doctors over the years) about what I considered to be abnormal GI issues but my concerns were noted, but (I felt) dismissed as possible side effects of her medications or eating junk food (which she rarely eats). It was at the JA Conference that I got some information that I was able to take back to the arthritis clinic.
A rheumatologist that we hadn't seen before listened to my concerns and nodded his head like other doctors had done. He left and then (to my surprise) returned a little while later saying he had looked at my daughter's chart again and thought we should go ahead and rule out a GI illness.
Fast-forward a few months and several tests later... my daughter ended up having a colonoscopy and EGD last week. The doctor took numerous biopsies throughout because she found a lot of ulcers and inflammation. The doctor said she wasn't expecting to find much, if anything, especially given my daughter is already on the medications she'd give to patients with Crohn's or another Inflammatory Bowel Disease. We will find out the biopsy results next week and what the next steps will be.
On the one hand, I'm not looking forward to opening a new chapter in this journey - it feels like I'm about to start over with research, etc., but on the other hand, I'm glad I didn't give up trying to make a connection between the JA and the GI issues. I have spent countless hours talking with other parents with kids with JA, doing research online, reading books, etc. but never had enough information to go on other than a "gut instinct" (no pun intended!). We did see one gastroenterologist after the JA conference who dismissed my suggestion there was a connection (he was certain it was a dairy intolerance), but the second gastroenterologist was more open to digging deeper since the rheumatologist requested we rule things out.
Anyway, I wanted to share this information in case anyone is trying to decide whether or not to invest the money to go to Philadelphia this summer. Aside from the conference being a great opportunity for our children to have some fun and be around other children who understand what they're going through, it could lead to some answers if you're like me and haven't felt comfortable that your child's diagnosis is complete, or if you have lots of questions and don't feel like you're getting the answers you need. _______________________________
gdje je majka sumnjala da artritis ima veze s gastro problemima i na JIA konferenciji došla do informacija u suradnji s jednim lječnikom da bi to moglo biti točno. Napravili su kolonoskopiju koja je potvrdila upale u crijevima, pitam vas, da li su vaša djeca imala kakve gastro probleme (proljeve, povraćanje, bol u stomaku..)
_________________ Anita Moorjani "Ponovno rodjena"
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