will he be nice
my son is 4 and 2 weeks ago we were told that he has duchenne and some of the reason that he might be so agressive is because he lack in running and doing normal stuff will he every settel down and be my sweet boy again? and if he is already this agresive then would it be a good idea to put him on steroids like i have haerd so many people talk about on here and the doctor mentioned puttin him on steriods.
Replies to This Discussion
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Permalink Reply by Lori Ware on
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Hi Vicky,
I am so sorry to hear about your son's diagnosis. My son does not have real behavioral issues, but there are some on this board who do. I will tell you that steroids helped my son run and jump and be more 'normal'. We have him on Deflazacort and he has had NO behavioral side effects at all. His growth has been stunted, but we are dealing with that. My son was on Prednisone for poison ivy and it made him crazy!!! I would not be able to handle that!
Where are you located? It is great to get connected to local families.
Lori
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Permalink Reply by Karen Barnett on
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Well, I guess I need to pipe in on this one as we have dealt with a lot of aggression with my son.
First of all, I too am very sorry to hear about your son's diagnosis. With it only being 2 weeks I know how fresh the pain of the news is (I remember it like it was yesterday) and I can only say that my heart goes out to your family during this difficult time. It will get easier with time.
My son is dealing with more of the cognitive issues that can sometimes go along with DMD boys. Impulse control, ADHD, OCD, sensory issues, extreme mood swings, immaturity and aggression have all been part of it. I have to say though that the extreme mood swings and aggression were not way out of the ordinary though when my son was 4. It didn't get bad until the steroids were introduced at 5. With the slower processing that my son has always had, he is slower to understand things and "get things" - learning and behaviorally. Frustration comes more easliy to my son than my other kids (at least my girls) that are not dealing with DMD and I know this has to do with the fact that he struggles more physically and mentally to do things. This is probably what you are dealing with and possible cognitive issues. Is your son's speech affected? That can cause major frustrations - I have dealt and am still dealing with it with both my son's now. It is very hard to tell at 4 on the cognitive issues and they don't like to do neuropsychs that young. With DMD it can be very subtle, high end cognitive functioning that makes it harder to see and diagnose. I "knew" that was my was delayed mentally and it was not normal behaviors way before his diagnosis at 5 but I didn't know what to do about it and what it was. Everyone (including me I guess) shrugged it off as just "normal" boy behavior and he would mature and catch up or I got the " he just needs more direction and discipline".
I knew from the beginning I wanted to put my son on steroids and did at 5 and at 7 1/2 my son is still on steroids. We have really had to play around with the dosing to help stablize his mood and sensory issues. He is also on a drug to help with mood stability and that has helped a lot. He is on a very low steroid dose. His control over his emotions and behaviors has gotten a lot better in the last year and besides the mood stabilizer I attribute a lot of it to growing up and maturing. They say some boys with DMD are about 2 yrs behind in maturity and I believe this is true from much of what I have read and heard from other parents. I can attest to it with my son. I suggest you get some early intervention with the school. Get an evaluation. Also try and get some professional help from a therapist if you can with your insurance or through the state. They have behavior modification programs and strategies to help. My 2 yr. old son (non DMD) has some speech issues and a lot of frustration over that and we went to the school immediately for help. He has been getting help from them since last year when he just turned 2. They did a full evaluation and he qualified for a home therapist to come out once a week and now this year he attends what they call the "Spot Program" where he see's a speech therapist, O.T. and others to help him.
I hope this helps and I have not over loaded you.
Karen
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Permalink Reply by Angela on
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Two weeks, wow do we all remember those feeeling. So sorry that you are having to go through all this, but we are glad to welcome you to our big family!
It is a "catch 22" because the steriods might give him the boost in strength that he needs to be less frustrated and aggressive or it might make it worse. I hate to say it, but the only way to find out is give it a try. Make sure your doctor is good about trying different dosing schedules, if the first one doesn't work well for him. Good Luck!!!
Ang
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Permalink Reply by jessica and gary fluaitt on
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Well steroids have a side effect of anger so I don't think that would be a good idea. My son is 12 and has been dealing with anger and bad attitude since he was 5 and I have had him in counseling and on meds nothing really seems to help and I know the doctors say it is all that they have to deal with and I understand that but it is still hard to deal with I miss my sweet boy everyday. I have him on a new med and with a new counselor so I hope it gets even better soon. Good luck and if you ever want to talk send me a message its rare to meet someone else who has a aggressive son with DMD.
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Do your boys that are dealing with the aggression like my son has dealt with swing completely the other way and demonstrate extreme affection, especially to you the mothers? My son has always been my most affectionate loving child and he can demonstrate extreme affection and kindness especially to me and often to animals. He is very huggy kissy. I love it but it can be very over the top. With the anger , rage and aggression there are certain situations and triggers that can send him over the edge and the response is totally over the top and inappropriate. His aggression has led to hitting, biting, throwing things and us having to physicaly restrain him at times to keep him from destroying things. When it over it's like nothing happened and he can turn around the next minute, act like nothing every happened, and be all loving and the most affectionate thing you have ever seen. I have to say this is directly related to steroids and what they call riod rage episodes but it is very bi-polar in nature and I think the steroids and what they can do to some boys mentally can be mistaken for that when it's not. Boys that are more cognitively affected have a harder time with the steroids. Unless people are living with this and dealing with it every day it can be very hard for others to understand.
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