Our two sons 2 and 4 are both diagnosed with dmd. 2009 Shaun(4) was diagnosed and just this last year Austin(2) was diagnosed. Shaun goes to jk right now and is doing well, he has an Educational assitant, and all the help that he needs. Austin is still at home and is a very happy little boy. Both my sons have a gene called the stop condon which means that the gene produces the dystrophen but it stops. The best way that I can describe it.
I myself have been trying to connect with people going through the same thing but finding it hard to connect with anyone in my area.
You have come to the right spot for information and hand holding. You just got a shocking blow - as we did a little over a year ago. My son was 8 with virtually no symptoms other that running a bit slower than his piers.
Please tell me about how your figured all this out, what symptoms did your son show? Does he have deletions or a point mutation or ?????
This site is full of information from all points of view and quite invaluable. Currently, steroids are the treatment to slow progression.
Many folks try many different things with many outcomes. For us, I try my very best to keep weight off my son as any extra weight can damage the muscles. We do not eat fast food of any kind, nor do I offer foods high in sodium as again, sodium adds water weight and additional weight can damage muscles. We rarely eat preservatives or pre-packaged foods. I try to be as close to nature as possible and try very hard to make sure Liam get additional mineral/vitamin sources from natural foods instead of pill form as nothing is better than the actual natural source. I do give Viactive chews twice daily and a CoQ10 tab daily, but not off the grocery store shelf. I use the CoQ10 that Children's here in DC used in their trial with supported evidence. We also have a swimming pool in the back which Liam lives in during the summer months. He rides horses as well. Oh, we stretch Liam each evening and he wears AFOs to bed at night. But, please keep in mind that Liam is A-Typical. He has less than 1% of dystrophin produced (revertant fibers) - but is completely ambulatory - he walks, he runs, he climbs. In the spectrum of all sciences - exceptions are abound. But this is also an MD time of change with new therapies coming down the line with great success. If our kids had to get this disease, it is at a much better time than it was even a few years ago. We are all buzzing with anticipation. Just know that you are not alone - come here often with as many questions as possible. Enjoy each and every day with your children.
Our son David was diagnosed at 6.5 years and is now doing very well at 8.5. He is on Deflazacourt. We are in Orangeville, ON - not sure where Wainfleet, Ontario is? David sees Dr. Biggar in Toronto. He is great. Feel free to contact me if you have questions or just need to talk.