Our 5 year old DMD son also was diagnosed with autism. Very common as we’ve come to find out. As for the steroids and eyes this is news to us. We are starting Vamorolone in Dec. I too have a difficult time pronouncing the word with our Neuro team. Great video! So happy that you post it gives some normalcy to our life.
Yes we are also learning the connections with autism and ADHD etc are pretty common. Steroids in general can have the side effect of cataracts unfortunately but it's honestly pretty atypical at this age for Mason to be experiencing so I don't believe that's overly common in young DMD boys. It's so hard to pronounce some of these names! 😂 and thank you that means so much to us and so grateful to you for watching!
Why don’t you want to stop the use of steroids? I’ve seen presentations by specialists from Sarepta, and they mentioned that steroids may not be necessary. We are planning to stop the steroids in a few months. Our son received gene therapy only two months ago. So, we plan to use the steroid for another 3-5 months.
Yes, we are in the process now of transitioning him from steroids (prednisone) 😊 and hoping to put him on vamorolone. We have heard the same information regarding the gene therapy! But the anti inflammatory is also still helpful certainly not worth the nasty side effects of prednisone 🥰
We have our eye apt with Cleveland Clinic next week for same issue.
Good luck and I hope it goes well! 🥰 It's hard to add on more thing to the mix.
Our 5 year old DMD son also was diagnosed with autism. Very common as we’ve come to find out. As for the steroids and eyes this is news to us. We are starting Vamorolone in Dec. I too have a difficult time pronouncing the word with our Neuro team. Great video! So happy that you post it gives some normalcy to our life.
Yes we are also learning the connections with autism and ADHD etc are pretty common. Steroids in general can have the side effect of cataracts unfortunately but it's honestly pretty atypical at this age for Mason to be experiencing so I don't believe that's overly common in young DMD boys. It's so hard to pronounce some of these names! 😂 and thank you that means so much to us and so grateful to you for watching!
Why don’t you want to stop the use of steroids? I’ve seen presentations by specialists from Sarepta, and they mentioned that steroids may not be necessary. We are planning to stop the steroids in a few months. Our son received gene therapy only two months ago. So, we plan to use the steroid for another 3-5 months.
Yes, we are in the process now of transitioning him from steroids (prednisone) 😊 and hoping to put him on vamorolone. We have heard the same information regarding the gene therapy! But the anti inflammatory is also still helpful certainly not worth the nasty side effects of prednisone 🥰