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Tamoxifin for Sclerosing Mesenteritis
Digestive Health | Last Active: Jan 18, 2015 | Replies (6)Comment receiving replies
Hello. I’m a mom with a daughter with Sclerosing Mesenteritis – diag at 14 (2008). She’s now had 17 abdominal surgeries later, multiple bowel obstructions, resections, and now TPN dependent, inpatient frequently, she’s 5’10” at just over 100# now, etc etc etc . . . anyway, we have a pretty great group of MP and SM people if you’re interested. It’s a private group and there are 57 members to date. I also have one of my kiddo’s docs on our group as well who’s been in several of her surgeries! Please write back and I can give you the info and add you to it.
Replies to "Hello. I'm a mom with a daughter with Sclerosing Mesenteritis - diag at 14 (2008). She's..."
Dana I\’m abt to text u now.
Lisa, here is my sons CT scan reports. I would really like you to give
your opinion….
This is final wrap up of the CT scan…..The other one has the details of
all but theis has the basic opinion…
This is the earlier CT scan done on the 4th of JAnuary….
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Lisa, My 17 month old son was just diagnosed with this condition at St. Mary’s hospital in Rochester MN. He was on the list to get a kidney transplant at the time and now is off of the list. The doctors at MAyo said they have never seen this before, so it is so confusing to me to hear that there are other people that have children and loved ones with this disease that are being treated within the mayo system. I have also been told that it will likely not be a chronic disease process and will likely not prevent him from getting a kidney transplant later. From what so many other people with this disease are saying, that does not appear to be accurate either. He just came out of the ICU and is now on the regular floor but struggling with a lot of discomfort. They continue to try to wean his pain meds because he “should be getting better by now”. Could you please call me to talk further about this? My contact information is 612-462-2452 I will be going to the hospital today to see my son and continue the discussion about how to advocate for him. Any help or advice that you can give, including professionals at Mayo that the doctors can talk to or doctors that have been helpful in management of your daughters condition would be so very helpful. Medical articles that I can print and show them would also be invaluable. Thank you so much for your help!!!! I look forward to talking to you further! Sincerely, Dana