Do any of you here have a son who is nearing the age of nine? I can't seem to find anyone who has a child this age whose just been diagnosed with DMD. Our son had few at best symptoms of this horrid disease. He ran slower than his peers. How could we have missed this? Our son never toe walks, does not fall down, runs - not too fast, but does run, jumps, swims, rides horses. He doesn't have trouble with getting up the staircase, although takes two feet per step, and gets up sometimes in gower and sometimes not. Someone please help me to understand why these symptoms NEVER showed up when Liam was four or five or six or even seven. He was diagnosed at eight!!!! I am still new at this game and all I wrote above was Liam before taking any steroids. He is now on Deflazacort, which, in my opinion, beats Prednisone ten to one. While on Prednisone, Liam was so so hyper and ate live a truck. He gained nearly four pounds in a month. Then we switched to Deflazacort and the hyper activity went totally away and his appetite is much more like normal. Liam still does all these things I mentioned before. But the difference is not night and day here. We see little changes in that he is a bit stronger when he wrestles with his dad and he goes up stairs faster. The biggest change would have to be in Liam's attitude. He now wants to try more stuff, it seems that his confidence is boosted. But Liam could do all this stuff before. Please HELP me understand this. I know I sound like a whimp and I am, but Liam is my only child and I love him to pieces, so much it hurts so badly at times. Do I still get him braces? Do I still send him to the best schools I can? I mean what is the point if I keep reading on the internet that DMD kids only live into early 20s? Since our son was diagnosed later, does that mean he will live longer? The best cure for me is to have Liam outlive me. :ast summer I watched both my parent die of cancer within three months of each other and now I get the pleasure of watching my son waste away. Will there be something to help further slow this progression in the next few years? I just don;t know how to handle this. All of our friends who come in contact with Liam just cannot believe he's got MD. Do I still hold the same hopes and dreams for him? When do the steroids stop working, one year, five years, 10 years?????
I have not been on this site in a month or so, but I know it's the best place to come when I am overwhelmed as I am right now!!!!! Any response would help about now!!!
All I know is that we cannot predict the future of our boys, so don't live with the thought of 10 years from now, you have to focus on the here and now. One day at a time. I always get upset when I think of the future, that is why we need to focus on the here and now, it will kill you if you don't. I have already lost a Son and have two more to watch go through this. I will handle it for them, I have too, they are always looking to me for the answers and if I don't have them, I tell them I don't and let them know I will find out. I have cried with them and laughed with them, screamed MUSCULARRRRRR DYSTROPHY IS MEANNNNN WITH THEM TOO. Keep your chin up you can do it!!!!!!
The really great thing is that Bradley has accepted Christ and he knows that he can look forward to an eternity in heaven with Jesus. This is something my husband discussed with him as well when he talked to him later. I don't think he is really afraid of death; but it was hard to hear those questions coming from him that day. My husband told him that any of us could die at any time and only God knows when that will be.
Quick question here...
Are there any boys out there who are 9 and can still RUN??? It is my understanding that when DMD boys are nine, they can still walk, but they just cannot RUN! Is this true?