Guest guest Posted May 6, 2006 Report Posted May 6, 2006 We had our consult with the doctor yesterday – it lasted about 90 minutes. I love this doctor and am so sad that she is leaving us. She is going down to Texas, so if any of you parents are in Texas you may want to look for her. If you are in Texas and email me I will find out more detail about where she is going. We are going to start seeing Dr. Keljo who is the Director of the GI Center at Children’s. Our doctor wants us to see him because she feels with his seniority he is the best person for such a complex situation. Of course I always worry that they don’t have enough experience with the PSC / IBD interactions, but I do have faith that they are extremely competent and will seek other team members if needed. Two things showed up in the biopsies. She does have some " dead " cells, which means her colon is in the process of dying. How long it will take is any body's guess, especially if we can eliminate these symptoms. The second thing is they found a significant amount of eosinophil cells which may indicate the presence of an allergen. It is not uncommon to find these cells present when there is IBD, but the amount is causing the doctors to wonder if there isn't an allergen or other foreign presence (parasite) that may be causing the symptoms, or at least exacerbating them. So - we are going to go through extensive allergy testing (blood work and skin tests) with a pediatric allergist who specializes in eosinophil allergens and testing for parasites etc. If we find nothing there we are going to start trying eliminating medicines to see if one of them may be causing an adverse reaction. If we still find no alternative explanation we are right where we were a week ago - we may need to remove her colon. So, the good news is that we may not have to remove her colon. I am praying that there is an allergen present and that it is revealed through the testing. I am so worried that this will be time consuming and she will not be starting school in August. Thank you everyone … LINDA (Mom of Suzanne, 17; IBD 1/04; PSC 3/04) Quote
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