Doctor advised to start steroids as early as 3 which is just three months away. He said the typical is 4-5 years as there is no research on younger. I never knew I would be starting anything this young. I need help I am struggling to make the decision so many side effects. I haven't really done much research yet just saw the Dr this week. So he will just walk until an older age. My brother stop walking at 11 years.
We started both boys at about 4 years old. For the most part I'd say we've had very few side effects, though they are on Deflazacort. Most of the research suggests that kids are better off starting before or as they peak in strength which can certainly start happening by age 5 or 6.
We've had no regrets with the steroids, but like I said, we've been lucky and haven't had much in the way of side effects. Maybe a bit of heightened emotional response, but considering we only have the two boys. There are some standards of care documents here:
And they do suggest starting as early as age 4.
How are you. My Wyatt is 6 years old. He started deflazacort when he was 3 1/2 years old. The only side effect that we have seen is related to behavior. Wyatt is the sweetest most loving little boy. But I have noticed when he gets tired, he turns into a little brat. I think the steroids make it a little more extreme then just a tired kiddo.
But I have to say, I don't regret it for a second. Wyatt is very stable. He was on the same dose 7 1/2 mg alternating every other day with 15 mg for about 2 1/2 years. He just went up to 15 mg daily this Feb (2014). He is still able to run like a non-DMD kid, climb on things, get off the floor pretty easily. We were just at the doc last week and wyatt is growing an average of 2 inches per year, which is great for a DMD kid. He is eating well, but not having weight gain issues. He is doing great. I feel like the little ones who start early can start on a lower dose and can have less side effects. Of course, this is our experience, starting steroids is a huge decision. Good luck and God bless your little man.
Realize too that if you want to try steroids for a while, you can. If you find the side affects are too much for you or him, you can stop (though it requires reducing the dosage over time).
Do you know what deletion or duplication is in your family? We have deletion 3-7 exons. My uncle and 2 cousins also walked into there teens with no treatment. My sons, Calvin started at 10 and Jared 7. Calvin is 18 now and Jared is 15. Both still doing great and walking. But Jared is doing better since he started earlier. Depending on his genetic profile they are now able to predict a bit on how he may react to the steroids. I would recommend the deflazacort. I think a big thing with starting early is height. Earlier seems to equal shorter. So if he has a more mild type maybe wait till he gets a little bigger. Jared is pretty short and that does sometimes bother him. On the other hand he shocked me by learning to ride a bike at age 13. My aunts and mother are amazed with how they are doing. So I think I would have started earlier if I had known earlier. But we are very lucky they have not had any bad side effects and they have never had to increase their dose.
Genetically they are diagnosed as Duchenne. But the doctors refer to them as Outliers. In between DMD and BMD. Which Children's Hospital do you go to. We go come out every year to see Dr. Wong in Cincinnati. She is so awesome.