Hi all -
I am new to this site and am still trying to find my way through it - I cannot believe the amount of information here - practical, helpful information.
I am the mom of Jack and Abby - Jack was diagnosed with mito in 1999 and he went to Heaven in 2001 at the age of 7. Abby is now 11 1/2 and has been much less symptomatic throughout her life - in fact, if it had not been for Jack's diagnosis we may not have even known that she had the disease. But, as she has gotten older, the disparity between herself and kids her age became greater and she became more symptomatic. A muscle biopsy was done in December of 06 and she was diagnosed with Complex I.
In August of last year she got 3 bacterial infections at one time - H Pylori, C Diff and Giardia. It took a toll on her and began a down turn in her health that ranged from leg pain, joint pain and headaches, to chronic, severe bouts of nausea (she does not vomit or have loose stools so she get the nausea symptoms but no "relief"), her constipation and dysmotility worsened, chronic UTIs and she had a terrible time falling asleep and staying asleep. By far the worst symptoms for her were the sleep issues and the chronic nausea. We tried every avenue of treatment and it was finally decided in April of 08 to do a trial of IVIG, as our son had been on it and it had helped his symptoms. The results were very, very good and she continued to have really a return to baseline for six months, with the exception of, in the last week prior to her infusion she twice got recurrent UTIs. Then, in October, she contracted C Diff again. We treated the C Diff and she had a reaction to the antibiotic that caused eye and urine discoloration. The antibiotic was stopped and she was put on a probiotic. The C Diff is suppressed right now, but will likely be a battle for her from hereon out. However, the nausea is back with a vengeance - it is debilitating. We treat her with Zofran, Phenergan and Lorazepam. She is eating very little, is more fatigued than I have ever seen her, having joint pain again, etc.
I know that GI problems are a commonality amongst many mito patients. I was wondering if anyone had any input regarding the nausea and treating it as well as anyone with input regarding recurrent C Diff?
Thanks so much - I appreciate it.