My daughter, Isabelle, is four and was diagnosed in January with Crohn's colitis. Her ONLY symptom was bloody diarrhea (8-12 x/day) and resulting weight loss. She was treated twice for c-diff but finally got a colon and endoscopy. I am told that visually only her large intestine is affected, which would make it UC, but that a biopsy came back positive for a granuloma, making it Crohn's.
I was also told that she is refractory, or steroid dependent. She reacted well to Orapred but became symptomatic after one week of weaning. She was hospitalized for bowel rest and IV steroids and worsened. I took her home and began supplementing with fish oil and VSL#3 probiotics and put her on a low fat/fiber/residue diet with no dairy/chocolate/carbonation/caffeine and she was literally better the next day. We gave the diet 4 weeks after weaning from Orapred and slowly reintroduced foods.
She has just had all of the restrictions lifted and is flaring.
I am glad to find a forum and hope to learn from others who have been/are going through this!
I was also told that she is refractory, or steroid dependent. She reacted well to Orapred but became symptomatic after one week of weaning. She was hospitalized for bowel rest and IV steroids and worsened. I took her home and began supplementing with fish oil and VSL#3 probiotics and put her on a low fat/fiber/residue diet with no dairy/chocolate/carbonation/caffeine and she was literally better the next day. We gave the diet 4 weeks after weaning from Orapred and slowly reintroduced foods.
She has just had all of the restrictions lifted and is flaring.
I am glad to find a forum and hope to learn from others who have been/are going through this!
Ugh, I'm so sorry to hear you're beautiful little girl is having to go through something like this 
