I am at a loss. Kians behavior has been so bad since a bout with the flu 2 months ago that he has been suspended 2x one week. I know some boys are on medication for behavior. What are the meds and what were the symptoms prior? A child psychologist didnt help at all. I am feeling desperate.
Joshua has the ADD side-effect from deflazacort. I can be aggression, sadness, and hyperactivity. In many cases a doctor would prescribe Ritalin, or a form of it. Because the Ritalin etc. can cause heart palpitations, we were told to give the base of the medication which was given before Ritalin became popular. Coffee. Joshua is 6 and either drinks coffee, ice caps, or eats chocolate covered coffee/espresso beans. It works in a matter of minutes and the most he has ever had in a day was 5. You only have to give them when he needs it and the teachers keep a bag at school as well and gives when needed. He can't overdose. The doctor said that the only side effect of doing this may make them coffee drinkers when they get older. It's worth a try and works extremely well for Joshua. You can buy the beans in the bulk bins of most stores and they are cheap to buy that way. Good luck.
The Lamictal was suggested to me by my primary care physician. She was convinced it would help Daniel. Her son had cognitive/behavioral problems due to another condition but very similiar to Daniel's behaviors when I described them to her. She specialized in helping children with frontal lobe issues. Lamictal is used for treating siezures and mood disorders.
Because my PCP was not Daniel's pediatrician, I talked to Daniel's pediatrician about trying it and he had no problem with it. It worked really well and I believe had it not been for the Lamictal we would have had to stop the steroids completely. I reported the results to Dr. Wong and she has no problem with Daniel being on this drug.
The Imapramine was prescribed in Cinc. by Dr. Gilbert. He's treats OCD and tic disorders.
My Billy, age 9 as of Jan. 6, has had behavior problems since preschool age 3-4 prior to diagnosis at 4 1/4 yrs. old and Deflazacort treatment at age 5. So in our case Deflazacort didn't cause the problem, but I would say is unfortunately among the 40% of boys with inherent social, emotional, and behavioral problems associated with Duchenne. Billy has had a full time TSS at school kindergarten-2nd grade and is now in 3rd grade and has a part time school aide and we were able to drop the full time TSS after weaning her hours over the past two years. We have a mobile therapist that comes to our home for 3 hours at a time once a week even during summer--this has been a great help in dealing with Billy's behaviors. Also, consistency in discipline is imperative to control the behaviors both at school and at home. This has worked for us. The therapist that comes to the house is a master's degree level with an emphasis on behaviour; in addition, her boss visits the school every so often to evaluate and observe and then prepares FBA'S (Functional Behavioral Assessment plans) for us to follow at home. The school and parents are on the same page. This has been alot of work, but it is working and Billy should be independent of aides at school by the time he goes to middle school in two years. This has not cost us a penny. I am in Pittsburgh, PA and these services are thru a 'Wrap Around Agency' and are covered thru Billy's supplemental insurance. Billy does have an IEP at school and receives OT AND PT weekly. Consistency in discipline at home has been the key. Billy is very bright A-B student and knows how to "work the system". Billy's main problems were non-compliance, disrespect of authority figures ie. principals and teachers, physical aggression (of which Billy was suspended many many many times starting in Kindergarten) this was before the school understood the disease and that it is not just a physical disability) attention seeking, disruption at school. That was 3 years ago--now Billy's main problem are verbal outbursts and using inappropriate words ie. stupid, idiot, shutup and sometimes refusing to complete work in class and sometimes social issues with peers. We have come a long long way and without drugs. This worked for us. Billy now knows the boundaries and what is expected and knows that there will be consequences for inappropriate choices he has made ie. loss of WII, no play dates for a day or two or three. At one point, I went into mediation with my school district, one step prior to suing the district for their mistreatment of our situation. They now know how serious I am in making them understand Duchenne, but I had to threaten to sue==things have been smooth since that threat. Do not be afraid to speak out for your son, if you have a problem with your school. They do not understand Duchenne for the most part. I told them from the beginning that my platform would be in dealing with Billy's illness and any other boy in the district was to educate on Duchenne. They want to lump our boys into the ADHD category and recommend drugs to sedate. I chose to go a different route. It may not work for everyone, but it is worth looking into. Billy was diagnosed with ODD and DBD (Disruptive Behavior Disorder) often misdiagnosed with ADHD. I had a great neuro-psychologist who advocated for us and went to mediation with me and was familiar with Duchenne and who also stated that she sees the % much higher than the 30% documented with behavior problems. She thinks it is closer to 40-50%. Hope this helps. Sorry for being long winded. Will be glad to communicate with anyone. Take a deep breath when you need to--I still do. And don't give up the hope--keep fighting. God Speed to the researchers, scientists, and doctors==God Bless Our Boys and Moms and Dads too. Please let me know if you receive this--i have not communicated much on this site-need to make sure my responses are getting. thru. My personal email is email@example.com