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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We get the chocolate covered coffee beans in the bulk bins at the grocery store we go to. If he is on the verge of an outburst, we either give him a bean or pour some coffee for him. We timed it for the first year, it takes about 2-3 minutes to calm after having the caffeine. It still hasn't changed 4 years later. If we are not fast enough, he goes to his bedroom for some alone time. He can kick, scream... and he does. You probably already know the signs that he will have though.
This may be a silly question but I tried the coffee beans with Landon bc his behavior is becoming so sporatic and he started chewing them up and they were terrible. He will not drink coffee...maybe will try a flavored capp sometime and see if that helps. I wonder if a soda such as Mt Dew would do the same thing being its high caffeine content? It is hard when they are screaming words like "shut up!" and Landon's favorite is "butthole" that he learned from my teenage daughters friend. He only does it when he is having these outbursts but it is so uncontrollable and very embarrassing in the wrong places. But like many of you, I do not want to have to put him on medicine for this...I want to help him learn to "control" it. Good luck to us all huh?
I was listening to a podcast the other day (Manic Mommies-it's pretty good!) and both of their sons have attention issues. Somebody called in and said there is water with caffeine in it, it's called Water Joe. Go to www.waterjoe.com and you can search to see where you can buy it near you. I'm going to try it for me first and then see how Seth does with it.
I've posted on PPMD multiple times about how Barleans Kid's DHA Omega 3,6,9 100% Pure Icelandic Cod Liver Oil (fruit punch flavor), helped my son, completely, hasn't had a crazy outburst since. He takes 1 teaspoon per day and within 2 weeks, they went away. Other moms have tried it, after I suggested it, and it seems to work. I buy it at a vitamin store. I hope this helps. Michelle
Caffeine is a drug.

JoAnne Hathcoat said:
This may be a silly question but I tried the coffee beans with Landon bc his behavior is becoming so sporatic and he started chewing them up and they were terrible. He will not drink coffee...maybe will try a flavored capp sometime and see if that helps. I wonder if a soda such as Mt Dew would do the same thing being its high caffeine content? It is hard when they are screaming words like "shut up!" and Landon's favorite is "butthole" that he learned from my teenage daughters friend. He only does it when he is having these outbursts but it is so uncontrollable and very embarrassing in the wrong places. But like many of you, I do not want to have to put him on medicine for this...I want to help him learn to "control" it. Good luck to us all huh?
Michelle: What properties does cod liver oil contain that it helps to regulate mood? How did you first find out about this? Cod liver oil has been around for ages, but I never knew that it could help with mood and behavior issues. It's worth a try.

Kelvinsmom - Michelle said:
I've posted on PPMD multiple times about how Barleans Kid's DHA Omega 3,6,9 100% Pure Icelandic Cod Liver Oil (fruit punch flavor), helped my son, completely, hasn't had a crazy outburst since. He takes 1 teaspoon per day and within 2 weeks, they went away. Other moms have tried it, after I suggested it, and it seems to work. I buy it at a vitamin store. I hope this helps. Michelle
I'm so happy to have come across this discussion thread. We've been struggling with behavioral/emotional things with our son, even before his diagnosis of DMD & starting steroids. Were you abel to get ahold of this Water Joe? Did it work?



Tracey Hartz said:
I was listening to a podcast the other day (Manic Mommies-it's pretty good!) and both of their sons have attention issues. Somebody called in and said there is water with caffeine in it, it's called Water Joe. Go to www.waterjoe.com and you can search to see where you can buy it near you. I'm going to try it for me first and then see how Seth does with it.

Donna, is it OK if I contact you regarding this?  Thank you.  

Leigh

Donna said:

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!!!

Oh my God, I was going to post something today about this. I don't even know where to begin. I just feel like crying, sometimes I don't feel like I know myself or him when he has these outbursts. They can last from 1 minute to 15minutes of screaming and ranting. It is sooooo frustrating. I don't know what to do. Wyatt just turned 5 and has been on deflazacort for 1.5 years. He has always had a onery(sp?) personality, I feel it spawned from his colic when he was a baby. He has always had this short temper and has always gotten easily frustrated, and has a -5 patience level. I talked to Dr. Wong and she said she was hoping to contact me with a mom who has controlled her son by just making sure he knows that "she" is in control. It just doesn't work, atleast it doesn't seem to. Sometimes he is absolutely wonderful and then like the flip of a switch he becomes a totally different kid. I don't blame the DMD for this, but I am sure the steroids don't help at all.

Sorry for the rattling on but I just spent 4 days with him, nonstop along with my mom and we all left crying. My mom says she wants to help but just doesn't know what to do. It is so hard. I love him so much, I just want things to be easier not harder. He starts kindergarten on Monday and I can only hope that she doesn't get the boy that I spent alot of time with this week. I think I will start trying the coffee tomorrow and see how it goes.

Hi Jessica,

My Simon is an ANGEL at school, saves the steroid fits for us at home (which I have been told by 2 therapists that it means he feels secure with us and that he knows that no matter how bad he acts,that we will still love him). School staff can't believe he is ever anything but sweet. I bet it will be the same for you.

Just once at school he took a royal fit when the occupational therapist went to visit and found his desk was up around his armpits and she ordered the janitor to cut the legs so it would be at a better height. When Monsieur saw that his desk was different than every other students, sparks flew and they had to go find another ill fitting desk to calm him down. The principal still talks about that day and just says "that boy knows what he wants!" and consults Simon now on any decisions concerning him, which I guess is as it should be.

Strength and patience to you.

Andrea

I agree - strength and patience.  If you look at my thread earlier on this as well as Andrea's above, we were in the same boat.  When our non-DMD son started kindergarten, we thought, great, here we go.  At the first parent/teacher conference his teacher told us she wished she had 25 kids just like Joey in her class.  My husband and I looked at each other and then I asked the teacher if she was talking about the right student :-).  He was horrible (okay, that might be a little harsh) for us, but very, very good for others - particularly school.  I would try to see if you can get him to scream in to a pillow or something - it really worked for us.  AND, I would also suggest, if school doesn't start out as hoped, that perhaps even have him see a child phsychologist or counseler - hopefully you'll get the right one.  Ours seemed to know he'd grow out of it and he has.  Good luck with school!!!

 Our son is 11 years old, we have been dealing with behavioral issues for years. We just had him tested in Oct 2011. Results was ADHD, OCD, Anxity disorder, and Mood disorder. He was having rages in and out of school. He was on Xanan and Trazadone, which worked for a while but it made him sleepy. He is now on Rispidal and Concerta he is doing better. We are also working with a counselor and helping him work on making better choses. Hope this helps you.

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