HI. I will now formally introduce myself, like recommended.
I am a mother of a 14 yr old daughter diagnosed with Crohn's in March 08. We live in the New Orleans area.
We have struggled like many others ever since with the doctors and medications and diet and missing school and all those in between frustrating days when you just don't know where to turn. Unfortunately, we do not know any other young people/teens locally and that is a very isolating feeling as well.
My daughter's story is typical...tummy aches for months and months. Her Pediatrician ran some in house labs, saw nothing unusual, said it was stress. We went back a couple months later and told the ped that we would like to be referred to a specialist. After 3 mths of test after test, Crohn's was confirmed. It was present in the ileum but mild according to doctor. She started on Imuran and Pentasa. She did well for a while. Gained a little weight, grew a little bit.
A year later she ended up with an NG tube and was on a homebound schooling program. She also had mono about this same time which went undetected for a while. She was not doing well, barely getting out of bed at all. Her doctor became more and more difficult to deal with and she became afraid of him after a bad experience with inserting the 2nd NG tube. After little success with the tube, she lost weight again and continued to get worse.
We recently changed doctors and he found her inflammation levels very high, 'uncontrolled', and upped her Imuran along with a recommendation to start Remicade. At this same time we learned through a stool study that she tested positive for Blastocystis hominis. She was treated last week with Alinia, a 3 day treatment, and she felt really REALLy bad for days. She is starting to feel a little better today and actually had a normal BM.
Since parasites and bacteria love sugar and starches, I am looking more at the scd diet as an option and also giving more probiotics and supplements to help with the healing after this parasite treatment. We re-test stool again in 3 weeks.
I am really interested in meeting other parents of children dealing with this disease.
That was a longer intro than I expected....thanks!
Post Edited (docdundidit) : 1/19/2010 1:06:12 PM (GMT-7)