There is a manual on this PPMD website that talks about OCD symptoms being very common for DMD boys. I think it is under "Understanding Duchenne" and then under the "For Professionals" tab. It's a manual for parents and teachers and it is great as far as explaining so many things in simple terms. Look those up...a little lengthy but well worth the ink to print them out. I actually have given one to Landon's teachers and school counselor because it breaks down what to expect at each age and they really appreciated it. So if you have not seen that manual...it is well worth looking at.
This is my first time to post anything, but so much of what I am reading in this discussion sounds like Bryce, who is 6. We didn't find out until this last October about Bryce's MD. I am the SPED coordinator for our district, and have been a SPED teacher for 20 years. I began our autism program about 10 years ago, and have said since Bryce was very small that he seemed very much on the spectrum. Because of lots of motor delays, which for some reason his doctor didn't take very seriously, I though he might have mild CP. I had our PT and OT look at him at the beginning of the school year, they expressed major concern and wrote a report to give to Bryce's doctor, who suddenly went into high gear. MD came out of nowhere! There are no resources here, we drive to LR, and always seem to be on a waiting list to get in. While Bryce's Kindergarten teacher was wonderful, the behaviors he exhibits are difficult - extremely OCD - must finish everything, work must be perfect, difficulty transitioning, perseverating on particular topics (particularly Cars movie and Transformers). Though many of his social skills are good, he is extremely defensive, doesn't like crowds or new social situations, becomes anxious and believes that people are "looking" at him. I finally took him to a psychologist here - who knows nothing about MD, but has been willing to do a little research, and Bryce has started on zoloft. He has only been on it a week, so are still unsure of how it will help. It helps to know what others are doing in the same situations. At our initial visit at the MD clinic, the doctor we saw said that she didn't believe that there were behavior problems associated with MD, so I thought it must just be him. But the more I research, the more I am seeing the connection. Thanks for all of your discussion on this issue
I remember when we were diagnosed and seeing the specialist and he spoke about the effects of DMD and one of the things he spoke about was the OCD/autistic tendencies that these kids have. They can fall anywhere on the autism spectrum where some kids arent affected at all to being quite autistic. It isnt really understood how DMD affects the brain although I know that there is a brain promoter sequence in the dystrophin gene. I think I read that it is thought to have something to do with trasition of signals in the brain but there really isnt a lot written about this side of things that I have found.
A lot of the comments I have read ring true though for WIlliam too. He likes to finish whatever it is he is doing, which his teacher has commented on, he likes to line everything up, especially his toy cars, and he doesnt like crowds of people. There are a myriad of other things too, but we just take it as being who he is. In fact we think we have been quite lucky as he really enjoys change and doing different things which we were told they usually dont.
Happy summer Lisa and Denise,
I can't believe I responded back in April and it's already July. There's a reason why I never responded back. If you look back at my email, we were going to a psychologist for my son. My husband and I had a 1 1/2 hour meeting with the doctor, and he also looked at the rating scales each of us and his teacher filled out regarding ADHD and Aspergers. The doctor said the tests do not show either one, but when he talked and observed Logan, plus with our conversations with the doctor, he said it sounds like possible Asperger's but called it "Non-verbal disability". He also said he needed more testing. We took him back after school was out and he went 3 different days/3 hours per day. Unfortunately, we haven't gotten the results back yet, because the doc went on vacation. Also, we've just been asked by Children't Hospital in Chicago if we want to get Logan screened for a 2 year clinical trial. We're still waiting to schedule that as well. Lately, I've been thinking about Logan's BMD since it's summer time and all of the kids are running around. As an 8 year old, he always seems to need more monitoring than other kids. He's also so much slower than everyone he plays with. I hope both of your summers are going well!! I am attending the BMD Conference in LA this August. Just hoping to get more information. It will be 1 year in September since Logan's official diagnosis. Take care!