My name is Mark, and like some of you, I am just a parent whose entire life has been derailed by this illness. When my son was diagnosed in 2009, I was living in North Carolina and recently wed. It was then that I knew I had to get back to California in order to get the kids back near their mom and get back near my family for support. Unfortunately, my wife wasn't willing to make the change and after a year in New York, I made it back here in March 2011, once again, a single father. Through it all, my kids have come first. Unfortunately, returning to California got the kids close to family, but also traded remarkable care in North Carolina and New York for California's despicable heathcare system. I am simply not one to take anything less than the best for my son. This alone is all I needed to get off the sideline and into the game. I have figured out everything on my own so far, but now I want to share my experiences and gain knowledge with families who have suffered through this as well.
About my family:
I have two boys from my first wife, Matthew 8, and Mark Ethan, 5. . My 8 year old son Matthew was diagnosed with DMD in October 2009. I am still struggling with this terrible diagnosis and hoping to meet some other families that are dealing with this as well. Thankfully, my son Mark Ethan appears to have no problems. I am supported by a brother and sister and my mom, all of whom live nearby. Their mom is also involved, and takes them for a day on the weekend. She is also dealing with her son Josh, who has DMD as well. Either way, any normality in my life is gone. I am not privilidged to live for myself anymore. Half of my world is being picked apart and I am definitely going to do anything I can to fight it.
Name(s) of child(ren)/individual(s) with Duchenne:
Actually Mark, Trey is on the Prednisone...we thought we would give it a shot before the Deflazacort (our doc said if we had problems she would immediately write a script without question) so we went ahead and gave the Prednisone a shot...so far he has been on it 2 weeks and we have seen NO side-effects...no weight gain, no hunger, no behavior problems whatsoever...we got our diagnosis about 6 months ago and I was so afraid to start him on it, but after seeing how Trey is reacting to it I wonder why we didn't start him sooner...within like 1 day of using it he was telling us his 'legs felt better' and 2 weeks later his endurance is amazing!!! It is almost shocking to us and we are already telling him to SLOW DOWN, TAKE A BREAK! We aren't seeing any strength at this point, just seems like he isn't fatiguing hardly at all anymore, so far it has been a miracle drug for us!
Two summers ago, we had an in ground pool built in our back yard and Liam literally lives in the pool during summer time. I am vigilant with his diet and work to not have him gain any extra weight as that extra weight hurts the muscles. Prednisone made Liam eat like a MAD CHILD. Deflazacort does not for Liam anyway. I agree with you 100% on the Deflazacort and please keep me up to date on how well Matthew tolerates it and if you notice any big changes. My hubby's name is Matthew.
I wish you all the best with Matthew. I know it is hard and horrid, but we have them now and our boys are awesome. Please keep me up to date with Matthew.
Have a great day.
You sound like you are in our boat with Matthew - us with Liam. As to the steroids - OMG - we put Liam on Prednisone when the diagnosis came down. To this day, if that were our only option - Liam would be without. It completely altered his personality and I mean completely - so much that I would rather have him on nothing. We switched to Deflazacort and are completely happy with it. Well, as happy as you can be with your child on this stuff. Liam tolerates his extremely well and we have our regular kid back. I hear many parents remark that once they start their DMD child on steroids, they see a night and day difference. We NEVER did. Liam has remained steady for the nearly two years he's been on the Deflazacort. With exception of our last DMD clinic appointment. We see Dr. Leshner here in Washington DC at Children's and at the end of March, the good doctor, sat there after completely examining Liam like he's NEVER done so before, was amazed and baffled by the fact that Liam has gotten stronger. We were blown away as was the doctor. Liam is missing exons 48, 49 and 50 and I am a perfect carrier. That was a tough pill to swallow, but Liam seems to be a perfect candidate for exon 51 skipping - like it was made for him. So, we are thrilled by that and take stock in the fact that if our boys had to get this crappy disease, it is at a great time with so much in the pipeline as far as treatments. It is a very exciting time for our boys. But we have no idea what the heck is going on with Liam - especially at 10.5 years. We keep him fairly physically active - he rides horses twice weekly and takes swimming lessons.
This is part one of a two part message...
Age 7 is a very late diagnosis. That is good. Welcome!
How did the diagnosis come about with Matthew? Was he showing any of the tell tale DMD signs that led you to think something may be wrong?
The adjustment is so so hard. My son was diagnosed at age 8 and really had no signs other than being slower than his buddies. He is now nearly 10.5. He is full of beans.
DO you know Matthew's genetic profile - mutations/deletions? There are so many exciting medical things in the pipeline for DMD right now and that is great!
Please, tell me some more about Matthew and your family and again, welcome. You have connected into a great place for info and support!