I live in KC and am mom to an amazing toddler recently diagnosed with ulcerative colitis. Even though I have a brother with severe UC and have decent knowledge about the disease, it is another thing entirely when it is your child and such a young one at that. I am devoted to finding the answers and doing all I can to help my sweet boy thrive. I am also a self-employed attorney in my free time.
Hello! I am writing for help for my young son who has Ulcerative Colitis.
Recently, following a long multi-hospital stay, my 12 month old son Colin was diagnosed with ulcerative colitis (technically called very early onset inflammatory bowel disease (VEO-IBD)). We were originally admitted in our hometown of Kansas City (Children’s Mercy Hospital). We had spent the previous two weeks going to urgent care, the pediatrician and the ER. The initial diagnosis was a milk protein allergy. When Colin did not improve, and taking into account that he has both an aunt and uncle with UC, it turned to inflammatory bowel disease (pathology from the colonoscopy was indeterminate). We were at the hospital in KC for almost a month and, after a heavy dose of steroid, total bowel rest with TPN feeding and a blood transfusion, his initial flare-up got under control. We were then sent to Boston Children’s Hospital to confirm the diagnosis and experiment with treatment. He had another upper and lower scope and lots of bloodwork esp genetic testing. They started to taper his steroid and try a maintenance medication to which he has responded. We were sent home where Colin is currently on a maintenance therapy of sulfasalazine, rowasa enemas, vitamin D and folic acid. I also give him a probiotic recommended by our Boston doctor.
He is much improved and seems to be in remission but we are still having some issues. In particular, he is constantly gassy and seems to be in pain from it at night. I don’t know whether it is diet related or something else. Unfortunately, because the disease is so rare at his age as well as so individualized, I am not getting a lot of answers and can’t find much online. I feel very alone trying to figure this all out and it is so difficult because my sweet babe can’t talk and tell me how he feels. I am seeking out other parents who have had very young children with this disease for support and information. Thank you
written by Megan
submitted in the colitis venting area