I know there are a ton of questions on here about behavior and steroids. Landon (age 6) has been on Deflazacort since Jan of 2010.  His behavior has gradually gotten worse and worse and is now to the point that it is causing him problems at school. He will throw fits and just act so defiant and it makes me so sad because I know 6 year-old little boys will throw fits but his are like short bursts and craziness that he seems to not be able to control. He will even call you a name or a curse word which makes me just cringe with anger.This is not the little boy he used to be and it is like those steroids have completely changed who my son is.  My question I guess is this...can any of you tell me your thoughts about how beneficial are these steroids? Is it worth our boys becoming different kids and being so frustrated, sad, angry, emotional, defiant, etc.? This disease is so hard as it is and I am having to make all decisions alone for I am a single parent now and his dad is not involved in this type of thing because he "can't talk about it" so I guess I am just looking for any advice/opinions of other parents. I am to the point of exhaustion and questioning are the benefits worth my son not being happy and getting in trouble all the time.  I can handle this disease IF HE CAN BE A HAPPY CHILD and I know he won't be all the time but the way he is now is absolutely wearing us both down so any advice you all can give would be so appreciated! Thanks!

Views: 407

Reply to This

Replies to This Discussion

I can't say how beneficial they are or not, I myself am going through the tough decision of whether to or not the dr and physio want me to put him on the Deflazacort, but my heart says putting him through the possible side effects and taking all those extra pills isn't worth the few possible benefits.  My son was just diagnosed 2 years ago and they wanted him started sooner but he had his heel cord surgery in february this year and couldn't start him on deflazacort till after the healing process from that surgery was done.  But I worry alot because it does lower their bone density and such and he has already broken his wrist from just a jump from 1 foot above floor level that it would be devesating to the development of his DMD if he broke a leg. Sorry not sure if any of that helped but I think what you typed has helped me a bit in my decision. You may add me to friends as I have none on here and this is my first day on ppmd. Thanks Betty

Thank you for your reply!  I am still pretty new to this all as well but I try to be involved in the conference, research, fund raising and all of that. I try to stay up to speed on it all...and as you know...not always easy!  Feel free to email me anytime at joanne.hathcoat@yahoo.com   I think we all need friends and people to talk out our thoughts with! Thanks and nice to meet you!

The benefits of steroids are clear.  They slow progression.  It's proven and documented.  This link has a technical paper about it, and there are many others.  Steroids are part of the Standard of Care for DMD, which was put together by a group of experts.     

There are side effects.  Some boys experience what you're describing.  My son struggled with the same thing. Some days it's worse than others.  It's gotten better over time, and we've been actively helping him try to manage it.  There are psychologists that can help.

Only you can decide whether the benefits are worth the side effects.  The equation is different for everyone. Some boys experience mild side effects - others are worse.  

Good luck.

Hi!!! I do not consider myself an expert, but would like to share with you my road of Duchenne in hopes it helps...First, no one road is right or wrong and second NO ONE knows your son better than you!!!!!  Having said that, my son has been on Deflazacort for almost 4 years....he started later...at 81/2 because he was diagnosed at this age.From 81/2 until 12 I have seen improvement in his abilities and most importantly at this all critical age of 12 stability!!! He has always been a child with a very strong personality. I can not say that Deflazacort has worsened this, but I can say some time with a psychologist has helped this...as hard as this disease is for us to get our heads around.....imagine a child trying to understand why his body will not do what his head wants it to do!!!  This leads to great frustration and acting out is a way of coping for our boys. My son still has his moments of utter frustration {as do I} but he has received some tools to help him cope....My very personal opion which has absolutely no documented back up is.......our boys are afraid and need to know that no matter how bad they act....we will be there and love them.....because if we love them when they are bad, we will love them if their bodies stop working....We can and should still keep them in line,,,,I'm not advocating letting them get away with everything because they're "special" In a funny way that we adults forget, discipline is actually seen as love from our children....I hope this helps...please keep the faith that you are a special mom taking care of a special boy

and if you need anything just post!!!!!!!!!!!!!!   

First of all, Steroids is not a cure..I have 2 with DMD and I have my kids doing different doses and regimens with their steroids for many reasons..Now, I understand the studies on the benefits of steroids but there are some major side effects associated with them especially daily.  I think there is a way to get some benefit of the steroid without the awful side effects you are facing. Have you tried him on weekend dosing?..That may be a way to balance his behavior at school however, you will take the brunt of it on the weekends but at his age it's worth a try.  Also, maybe talk to your doctor about giving him a lower dose than the standard says.  My 2nd son who is 13 is still walking and taking daily steroids but at about 1/3 of what the standard dose would be and he didn't start daily until he was 10..Obviously, none of this is scientific but it is what has worked for us.. but whatever you decide, steroids is not a cure for our boys and if you decide not to do it anymore it's OK..just my opinion obviously..

Joshua has been on deflazacort since he was 3.  He will be 9 in February.  We had a lot of issues with behavior when he started them.  We resorted to caffeine.  Before Ritalin, everything was based on caffeine.  We used coffee, caffeinated tea, chocolate covered coffee beans, cappuccino, anything with caffeine in it.  You can test him to see if this would work.  The reaction takes approx. 5 minutes... at the most.  Joshua's reaction was approximately 2 minutes. If he was too far into the behavior, we'd give him the caffeine and make him have some alone time to calm down.  We also began melatonin at night so he would have full sleeps and be much more behaved in the morning.  We changed our diet so most everything is natural, cut down the dairy and increased the starch.  Once we started idebenone, he became much more cognitively aware.  You have lots of choices we all have taken to decide from.  My biggest suggestion is researching your child specifically.  Every child is different.

Naomi

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service