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  • Mary Santos posted an update 1 month, 2 weeks ago

    Good evening..I have never posted before. I am mom of an almost 8 year old boy who was diagnosed with DMD and Autism a few days before his 6th birthday. 💔. He brings me great joy. He is still ambulatory, thanks be to God!. We found Dr. Brenda Wong within a week of his diagnosis and have been to the UMass Worcester DMD program every six months since. He started Emflaza last year and is on Anxiety meds, vit d and k, coq10, pre and probiotics, multivitamin formulated for picky eaters and a laxative to help soften his stool..He goes to aqua therapy each week, along with a weekly behavior therapy appointment. He does stretches and wears night AFOs. He is homeschooled and enjoys his playdates and classes with his friends. He is very friendly and loving, but also struggles with some behavior issues due to the Autism/DMD affecting his brain. Other than what I have mentioned , is there any other advice you would give me? I’ve only been at this for two years ( I mean since his diagnosis, before that I just thought he had delays)..

    • Thank you for posting Mary! The way you described your son and his life is wonderful. It is so nice to read that he is friendly and loving as well as living his best healthy life, thanks to you! I think you made a great decision reaching out to this group. Having a support system is vital, especially when you feel like you’ve only been at it for two years. I believe it is best to live by example so seeing other people with DMD and other types of MD navigating life is important as well.

    • Mary, I apologize for my late reply. It sounds to me like you are doing everything right and providing your son with the best of care and full and happy life. What you have told me about him, he sounds a lot like me and my early symptoms of MD. I have a type of Muscular Dystrophy called Mitochondrial Myopathy. It is commonly linked with Autism. At 10 months old I had many issues including behavioral and developmental. I was diagnosed with Autism and submitted into an early intervention program in order to treat my symptoms. I had speech therapy, physical therapy and my parents were instructed to expose me to things like certain foods that I wouldn’t eat and sign language since the therapists didn’t think I would talk. I was always struggled with my education and keeping up with other kids so my parents modified my school hours and homework. These days, I take most of the same medications as your son. I did take CoQ10 for a couple years but didn’t notice a change so I stopped taking it. Does your son see a therapist or not? I can make some recommendations for laxatives and fiber that could help him as well. I believe your son has a bright future ahead of him based on the love and care you are giving him.

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