Candace - posted on 09/22/2009 ( 5 moms have responded )
My 4 year old son was just diagnosed with DMD in July. We haven't found out if I am a carrier or not because I am already pregnant with #2. We found out that I was pregnant 3 weeks after the 1st blood test indicating a muscular problem and 3 weeks before the results of genetic test came back confirming DMD. I have decided against all testing on the baby because as sad as I am about this diagnosis I wouldn't trade my son for anything in the world. Its an honor to be his mother and I will cherish every day I have with him as well as this new little one regardless of what any of these test results or doctors say. They are probably going to do the genetic testing on my to see if I am a carrier but not until after I have the baby. Anyway....the reason for my conversation is to ask everyone for their opinions on the use of prednisone. The neurologist I saw with the local MD Clinic said and I quote "I have some parents that have chosen to use it, some that haven't, and some that have tried and decided against it. That's really only a decision you can make." Mind you the only info I have on prednisone is from the Internet. He didn't offer any professional opinion on it or any real information on it. He said that my son "might" walk a little longer but it's not a guarantee. Now knowing all the side effects of prednisone from what I have read online it seems like the chance that he "might" walk longer doesn't outweigh all the negative side effects. Let me know what you're opinions are. I have not been able to meet many parents in WI dealing with DMD that I can talk to. The MDA rep in my area is busy every time I call. They have time for quick 5 minute phone calls or time to pop something in the mail but as far as support it's not there. I can't find any other families near where I live to talk to. I'm feeling more hopeless and really need all the shoulders I can get to lean on right now. I am quickly losing faith in doctors and the medical field in general. I have more faith in the Social Security Administration and Medicaid right now than I do in most of the doctors or clinics I have been to in the last 2-3 months. That's a conversation for a different day though. This prednisone issue was pushed on me big time again today because they want me to make up my mind as to if we are going to do it or not but I don't have enough information to feel comfortable making that decision. Which I have told them and they keep telling me to talk to other parents for advice. I've tried and been unsuccessful thus far.