Sclerosing Mesenteritis is a rare disorder caused when the small bowel's membranes become inflamed and fibrous resulting in an abdominal mass.
She does not see Dr. Pardi up there. Dr. Schaffner has consulted with us and her docs on her since 2008 when she was diagnosed. She was in critical care and was to be life flighted to Mayo that following day . . Mayo refused her due to her age . . . She's over 18 now . . but there's nothing they can do for her up there that they can't do down here and I do speak with Dr. Schaffner (another of the SM guys at Mayo) . . Drs. Pardi & Schaffner in MN, Pico in FL Mayo, and Dr. Eli in Chicago are the SM people in the U.S. i'd have to say they have some pretty amazing ones here in Oklahoma as well as my kid is still alive and they were very aggressive with her. In seeing some of the others that were treated at Mayo and i can think of one that passed with SM a year after diagnosis that I knew him and his family (we're still in contact with our Sm group) . . . he wasn't given the chances my kid was. Docs read - surgery can make it worse . only do surgery if bowel obstruction, etc. . . well, seeing it with 2 families up there . . and on one 1 they did do 1 surgery . .but wouldn't do anymore . . (we keep taking my kiddo's ostomy sites up higher above add'l SM stuff) . . she's had many bowel obstructions! :(
Sharon - Thx for responding. We have a pretty amazing group with over 80 people in it now with SM and/or MP from all over the world. Would love to add you to our group if you like . . i sent you my email before as well lisas444 @ yahoo . My kiddo hasn't responded to most of the SM treatment . . she's still alive though. She's had 17 abdominal surgeries now, has ostomy placement, TPN dependent for over a year now . . . the SM also affected the right ureter as well (she's had multiple multiple multiple and can't say that enough how many times) but bowel obstructions . . . she's inpatient frequently and this past year has been in more than 50% of the year again . . . she's been on ALL the meds out there to treat SM and is no better. She's had a pretty aggressive team of docs who have been amazing and haven't quit on her. She's just started a new drug that was used by one other SM person in the UK that was a 29 year old girl . . . I got the drug from drug manuf to use it on her here . (insurance won't pay as not FDA approved and experimental) . . . she had 1 treatment so far and then ended up in the hospital with 2 sepsis rounds back to back and endocarditis as well developed (over the last 3 months). She's starting the 2nd infusion today . . .
I'm sorry to hear about your child, so young, being diagnosed with this and to such an extent! Have you consulted Dr Pardi at the Mayo Clinic? He is considered to be the most knowledgable physician in this country on SM. I seem to have hit a plateau for now. For the past three weeks I have only had five days where the pain, bloating and diarrhea ha been bad. I have changed my diet to no processed foods or dairy and very little fiber. I make my own yogurt with soy or almond milk now and I seem to tolerate it well. I am a physician and with the multiple disease processes, I have had to retire on disability. I have cryoglobullinia, due to the hepatitis C I contracted during my intern year, which is the worst. I get chemo therapy every six months for that after it finally caused kidney failure. At least my kidneys got better but there's no cure. Then I got mononeuritis multiplex, also caused by the cryo. I probably have a lot more knowledge than the average doctor, lol. I end up giving them the names of articles and research. Now I'm researching SM. I've gotten really good at medical research.
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