About two weeks ago we started Andrew on the steroid Deflazacort. This steriod is not FDA approved but is available everywhere else (pretty much) except the US. Our Dr. sent the perscription up to Canada and they order is from Europe. We have to bring him to the dr. every 2 weeks for weight gain, gluscose in his urine and blood pressure. The steroid he is on is to known to show less side effects in boys with DMD. If you would like to read more, here is a link. http://www.parentprojectmd.org/site/DocServer/filename?docID=124
We will be traveling back down to Philadelphia in November for a follow up!
5 weeks ago