Hi,

I was wondering if anyone whose son is on an ADHD or mood stabilizer type medication would be willing to share their experience. We have been struggling with our son's
behavior for several years now and recently had a neuropsych evaluation done. He
was diagnosed with ADHD, cognitive disorder and expressive language disorder.


Our primary concerns are his irritability, extreme emotional reactions, low frustration tolerance, impulsivity and his rigid thinking. He has been on Deflazacort, but he really had most of these behaviors prior to beginning it. I know that these types of behaviors can be common for some boys with DMD. The neuropsychologist has suggested we might give medication a try.  

Although we are hesitant to resort to more medication, we just want to do what’s best for him and think we need to explore our options. He is a delightful child, but we would love to see him a little happier and less high strung. If anybody would be willing to share their experiences or particular medications that may have helped these types of behaviors, I would greatly appreciate any insight. I am talking with his pediatrician next week, but I would love to hear any experiences from people here. Thanks in advance for any help! 

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You just described my son Kian. He is 9 and on deflaz. We started taking lozartan a few months ago, and while it is not a cure all, I see mild benefits. We also started taking the Deflaz in mid afternoon. We do so many other things, its hard to count. On the bright side, he is still very strong and mobile, but his behavior leaves us all drained. Went to child psych, total waste of time and $$. He gave me a book that had no clue. We see Dr. Wong next month and we plan to talk more about it. Would like to talk more about this with you.
You just described my son Daniel as well. He is also 9 and on deflazacort. I too saw some of these issues before the steroids but they really intensified ten fold when the steroids were started at 5yrs old. Stopped the steroids once and all the extreme behaviors decreased dramatically. Daniel is on Imipramine for his OCD like behaviors and Lamictal to stabilize mood. The Lamictal really helped a lot and I saw the biggest difference with it. I think that Imipramine has helped but he still has a lot of OCD and rigid thinking.
My son is also on Deflazacort. After getting Dr. Wongs OK, we have started Concerta for ADHD symptoms. It's really helping with school work, frustration level, and behaviors - impulsive yelling, noise making etc. An added benefit has been a decreased appitite. He's lost a couple of pounds! We found that he felt a little odd the first week, with mild headaches, but he quickly adjusted and feels good now.
Hi Emily,

Going to play a little devil's advocate here, and I'll apologize right away, because I have NO phsych background whatssoever. However, many of the concerns you have above really kind of sounds like how my NON-DMD son was from pretty much age 1 thru perhaps age 6 - 7. We also had him tested - I was freaking out - I didn't know what was wrong with this kid. And we went to see the child/family phsychologist for a while. He'd have these extreme emotional reactions and the low frustration tolerances, etc if things weren't quite going his way and/or if we didn't give him any advance warning when it was time to do something else. I remember too going through his difference growth phases, crawling, walking, talking, etc that if he couldn't do it, he'd get very frustrated and emotional; and yet he was right on target if not ahead. We did not do medication, nor was it even recommended. His was just that he had to learn how to deal with frustration - and it was quite a frustrating process at that. If he was going to have an outburst - we'd make him go in his room and scream in to his pillow. He would scream so loud and so long that if you'd look at him, he'd be so glassy eyed and just exhausted. Luckily - when I woudn't deal with it very well, my husband would, and vice versa - because he was quite a trying kid. Now, at age 12, he's really probably for 99.9% of the time has grown out of it and if he does get frustrated, it's just a pouty look on his face, no screaming :-). I guess what I'm saying is that I'd almost recommend a second opinion. I too am not thrilled with having to give my son a steriod, nor any other medication that I'm sure will come down the road, but you do have to do what is best for your son.

Best of Luck!!!
Joshua is 7 and has been doing this as well. We were told not to put him on anything in the Ritalin family because it can cause heart palpitations, and with DMD, that's not something to risk. He did tell us though to use coffee. Everything before Ritalin was based on caffeine. So Joshua will drink a cup of coffee before he goes to school and his teacher has coffee beans in the classroom for when he is getting to his point. When taking beans and/or the coffee, you see the effect within a few minutes. Deflazacort's biggest side effect for many has been ADD / ADHD. When other parents whose children don't have DMD, but ADD, they started using it too. It's cheaper and there are no side-effects to deal with... except for the mood swing being gone.

Naomi
we started concerta also about 8 months ago and it has helped with all those things, he is also on deflazacort, but it helps with school, focusing, really even a little maturity, he not as frustrated, or angy.
Thanks so much for all of you replies! We are going to think some more about this and talk with Dr. Wong more about her recommendations. I appreciate all of the input!
You also described my son Seth to the T. He started taking the Deflazacort last summer (before 2nd grade) but was definitely exhibiting behaviors toward the end of the year of 1st grade. We are taking him to a psychologist in a couple months...we'll see. I'd rather not use meds, either, but I want him to be successful. It's so hard.

For those that use coffee-how do you get your kid to drink that or take coffee beans? Seth is super picky as it is, I can't see him ever doing that.
When Joshua has coffee, he drinks it just fine. When he first started drinking it, he liked it. With the coffee beans, we buy the chocolate covered espresso beans. Those have a hint of coffee and quite a bit of chocolate. They taste really good! We buy them in the bulk section at the store so they are quite a bit cheaper. He prefers drinking the coffee though. You can add hot chocolate or anything you like. His favorite is an ice cappuccino. It's at least worth a try. Hope this helps.

Naomi
So glad I founnd this conversation. My son fits the description. Fine up to 2nd grade. Having a ton of trouble this year.
I don't think the teacher and him hit it off either..so doesn't help. Recently saying Oh. Crap at school so I'm getting notes from the teacher. Thats mild compared to how he talks back to his DSI when he gets frustrated...lol. I do take this seriously. Today he could not focus, said the word again and argued with her. She made him write an apology note to her and the class. I recevied an email from the teacher earlier today so I knew when I called grammas house..but he did tell me on the phone about it. He already wrote the letter with pap and I believe he does feel bad. We try to talk to him and he just seems to zone us out at times and knows what buttons to push. We took him to be evaluated in Jan..but nothing. although
they stated a behavior specialist may help. We are calling tomorrow. Tired of being tired and arguing. What is Concerta and do you need a perscription? Thanks...
Concerta is another form of Ritalin. http://www.drugs.com/concerta.html Joshua uses caffeine because everything before Ritalin and Concerta were based on caffeine. Caffeine doesn't have the heart palpitation side effects at least. I works great! May I suggest trying that before you turn to the medication? Joshua drinks coffee or eats chocolate covered espresso beans whenever it is needed.
Thanks, where do you get the choc cov beans? Does it hep with outburts?

Joshua's mom said:
Concerta is another form of Ritalin. http://www.drugs.com/concerta.html Joshua uses caffeine because everything before Ritalin and Concerta were based on caffeine. Caffeine doesn't have the heart palpitation side effects at least. I works great! May I suggest trying that before you turn to the medication? Joshua drinks coffee or eats chocolate covered espresso beans whenever it is needed.

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