anybody tried alternative treatment post-BMT?
My daughter had stem cell transplant in September 2005 for her relapsed-AML condition. Until 4 months after BMT she showed very little GVHD which was considered to be desirable. At 4th month she had a very bad infection (not know what though) which seemed to trigger a heavy GVHD. Doctors cannot however confirm that, whether the fighting with the infection triggered the GVDH or vice versa. My own theory is the first.
Since then the GVDH turned into chronic and my daughter (12yrs old) has suffered from skin reactions. Luckily her Liver and other organs were ok. But the reactions on skin took different forms. This accompanied with temperature and infections. The found urinal infections, skin bugs etc.
All these made me strongly believe that since she is immune suppressed with cyclosporine, body tries to fight against infections but the new cells attack the skin as well.
What made me annoyed also that each time she developed a temperature she was under antibiotic protocol (5 days of standard antibiotic treatment). This repeated so many times and I think it did not give body a chance to recover properly. And, in many occasions they could not grow anything in the blood cultures.
She was given anti-body treatment to deplete the B-cells to fight against the prolonged chronic GVHD. Doctors found little improvement so far. We are still observing.
I am not a medical expert (have a PHD in chemical eng) but I have learned to read my daughter over the course of her treatment. I can read the signs much better than anybody. I know very well when to call a doctor and when not. Doctors also trust my judgments and allow me on varying her steroids levels etc. within the given limits.
Recently however, I have developed a belief that modern medicine has done everything that was possible for my daughter. I now seek alternatives.
I am asking if there is anyone out there who tried any alternative approach for a similar case. I'll be happy to listen.