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how do you explain this

my 8 year old daughter was just diagnosed with Crohn. in January her calprotectin level was 653, iron level low, CRP elevated, she had done endo and colonoscopy. Confirmed chronic inflamation. back in January she had for while loose stool and occasional belly pain. since then we changed diet (dairy free, gluten free 80%, very low sugar -no junk no processed. added probiotic, prebiotic, vit D, iron butyrate. no is March she repeated calprotectin and was 129. I was so excited, but went with her to doctor for intestinal ultrasound. The doctor said lot of inflammation and fistula on small bowel. she is symptom free. her stool solid (1-2 day), no pain at all. how do you explain this calprotectin fell down, she feels great, but ultrasound says completly different.

  1. anyone

    1. Hi . First, let me say that it is good to hear that your daughter has been feeling better. Concerning the difference between the calprotectin test and what was seen on the ultrasound, I don't know if this is the case with you daughter, but this article notes that "In some cases, calprotectin may be low even when inflammation is present (a false negative). This is most frequently seen with children:" Has the doctor had any comment on this difference and any thoughts on additional treatment? Every case is different and what works for one person may not for another, but I want to share with you this article from Boston Children's Hospital on Crohn's disease in children, including information on treatment options:

      Also, I want to note that we know it is not easy to see your child have to deal with this condition. I want to share with you this article from our contributor Natalie titled "For the Parent Whose Child was Diagnosed with IBD:" Please know that there are people here who understand and that this community is here for you. Best, Richard (Team Member)

      1. I'm so sorry your daughter is going through this. I second what Richard said. Sometimes tests can show improvement yet other tests show other findings and this can be hard to juggle. I have experienced this in my own personal journey with Crohn's. My blood work looks great and shows lowered inflammation yet my colonoscopy shows inflammation and ulcerations.

        I think celebrate your win. Continue doing what you are doing because you are improving in one aspect, her CRP is lower. That is a win. Don't get discouraged. Stack new therapies on top of what you have established. I'm sure your doctor has offered his/her suggestions on how to help with the fistula? I'm wondering if you would consider seeing a Naturopathic Medical Doctor? In addition to seeing a GI, I saw an NMD. And it was a wonderful experience. I was getting different perspectives on how to heal and it was a great move for me. Maybe you can see an NMD and get more information on how to heal your daughters fistula?

        Sending strength your way. I am rooting for you.

        Elizabeth (team member)

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