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Thank you for joining our Gastrointestinal Disorders Group @tlcsmom and @tanyab! We [...]

Thank you for joining our Gastrointestinal Disorders Group @tlcsmom and @tanyab!
We would love to get to know you better by telling us a little bit about why you are interested in this particular group and how you hope to connect with other patients and families within the group in the comment box below. We look forward to connecting with you further!

TLCs mom likes this

Posted by @tlcsmom, Dec 16, 2014

I have a 9 year old son who was diagnosed with moderate to severe Crohn's 2 years ago. I took him to his pediatrician with a golf ball size "bump" (it seemed to grow that big just in a few days) on his buttock and at that point the Dr. told us to go to Shands @ UF children's ER. After the consult with the ER Dr's and peds surgery, it would have to be drained in the morning. So our first night of many started. Once in the or, the surgical team noticed the "bump" was tunneling - so ped's GI was asked to consult. After draining and many test, scopes, labs etc it was determined Trevor has Crohns. Started on Remicade infusions, after 10 months, and another abscess and fistula, Remicade was not working. So switched to Humira. Another abscess showed up and so Humira was changed to weekly which is where we are now. This last abscess was in June and the seaton band/drain is still in place. Just this past month the blood labs and calprotectin results are showing inflammation. Actually the calprotectin has never been in normal range always off the charts high. Next step now is a liquid diet and adding Rifaximin for 4 weeks. Any help/advice I can get is truly accepted. Thank you


Posted by @ArnoldPalmerMod, Dec 16, 2014

Hi @tlcsmom - Thank you for sharing with the rest of the group! We hope you find the support an encouragement you are looking for as a part of this group. Does anyone have any advice for TLCs mom who has been through a similar situation?


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