Well here  I am again. Getting frustrated with my son Shaun, lately he has been very moody and not sleeping and does not listen. Probably the age and steroids. Being so patient but it is wearing thin. I think that he is starting to realize that he is different.

Then there is Austin my 2 year old. He is so sweet and always smiling. Thankfully he does not have to start steroids anytime soon. Then I will have two moody boys. I'm bad saying all this stuff.

I just wish this huge weight on my shoulders would go away. Now to add to more stress I now have to find a way for Shaun to still be able to recieve pt, ot, and speech. Because he needs it on a weekly basis. Npcc will be discharging him and then i am stuck. Where do i go from here this is my first time dealing with this issue. I really really hate this.....

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Comment by Donna Cicardo on April 26, 2011 at 11:44am

Sharon,

 

My son was having those same problems.  he would get so sad you could see it on his face, he would hide under tables, not look at people, scream, threaten to hurt himself and others, not do his work and just sit stone faced and most of all he would just cry for no reason.  We do have a family history on his fathers side of bipolar/depression and it seemed the steroids were making it worse.  the psychiatrist said he probably had the tendency for depression that may have appeared later in life but she said the steroids probably exacerbated the depression.  he went to MDA camp and had a complete melt down and it was then that we just decided that we would not let him continue like this.  we took  him to the psychiatrist, she put him on prozac and has been great ever since emotionally.  he is a happy little boy like he was before the symptoms of MD got worse.  he also sees a counselor, Joe, every 3 weeks and he just loves him.  i think it is also good for him to talk to someone outside of the family.   as far as PT/OT i do not know where you are but Baylor Hospital, called Our Children's House has a great program.  You can also check with your state to see if he qualifies for assistance.  my friend's son has DMD in a wheelchair and since he is in a wheelchair now he gets assistance he needs and a therapist comes to their house every week.  if you want to talk to his mom, let me know, she is really informed about the programs for disabilities.  good luck and dont give up.  as far as some who say, no dont put you son on antidepressants, well in my opinion they are wrong, Alex is doing so much better on them and we would not go back. 

Comment by Andrea Cleary on April 26, 2011 at 9:40am

Sharon,

I wish I knew what to say about the services you get. We don't get any help for PT or OT, just a meeting every 6 months and a routine of stretches to follow, and nothing offered at school (grade 5 now). And now we just got a phone call that our OT has taken another temporary job replacement for 2 years and since there was no one to replace her, Simon's file was closed, but if we really needed something we should call!

Sounds like you've got a case of the Moody Blues. Listen to some Nights in White Satin. It might even help Shaun sleep.

I always found that some "white noise" in my boys rooms helped them to sleep better, just drowning out other sounds from outside or in the house that might wake them. Try a fan (not blowing on them), air-cleaner or humidifier.

Good luck,

Andrea

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