My lil guy is going back to dr soon and will be starting steroids. I believe its a good move but hes only two im worried if he starts them now how long will he be on it ,and the side affects im worried about weakining of bones and weight gain..... we should be  worried about sledding riding bikes playing and doing all the fun things kids are supposed to do its hard worrying about drs and medicenes and so forth but this is the hand we were dealt and we are trying to stay positive and keep faith but its hard sometimes.. Right now hes too little to understand whats going on  we are just trying to let him enjoy being a happy baby but deep down thinking about the future is so hard to do ..we will never give up hope and always keep the faith we will not let duchennes think its won we will fight .....

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Comment by Veronica Meizelis on January 23, 2011 at 2:35am
Just wanted to let you know that my nephew has been on Deflazacort also, I think he was 6 when he started it. He is 12 now and can still walk even though he does take his wheel chair to school. He does have some osteoporosis (which he takes medicine for) and hasn't grown in a while but, I think that the benefits out weigh the side effect. He is going through a lot of challenges due to this disease but, he has friends, gets good grades, and still enjoys life, it's just a little harder for him. But, I feel the same way you do when it comes to my 3 year old. He has been doing well and nothing has changed within the last 2 drs visits. He does fall but the Dr said that is because of his pronated feet not because of dmd. We decided that we would wait a little bit to put him on steriods until we or the doctors feel that he really needs it. They did tell me though that the sooner he is on it the better so, I think he will be on it (we are choosing Deflazacort if possible) at least by 4-5. I'm not sure where you go to for son's dmd dr but, I am sure that they will listen to your concerns about the side effects and maybe he won't even need to start it yet. My son's dr wasn't even talking to me about steroids until my son was almost 3 because she wanted him to grow more.
Comment by farrah buenaobra on January 22, 2011 at 2:54pm
angela thank u thats exactly what i needed to hear just that these things are still possible !! im happy for your son hes staying active and doing all the things boys love to do .. thank u ..
Comment by Angela Bourgeois on January 22, 2011 at 8:19am

Hi Farrah,

 

I'm not sure how much comfort it will be, but our son is 11, he has been on Deflazacort since he was 4 and he is still walking.  The steriods were the best decision we ever made.  He hasn't experienced any lasting side effects - yet, other than his size.  He is full of life, loves to go sledding and ride his bike - even if he can't keep up with his friends.  He tries to skate.   He has a very active life.  He broke his thumb playing soccer a few years ago.  I was panicked but it healed up perfectly. 

 

Angela

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