I don't usually post on this forum, but I just read your post about OCD. The brief description that you gave sounds like it could be OCD. Having to repeat actions until it "feels just right" is kind of a hallmark feature. In response to your question regarding a link to DMD, see the scientific article listed below.
James Poysky, PhD
Baylor College of Medicine
"Neuropsychiatric Disorders in Males With Duchenne Muscular Dystrophy: Frequency Rate of Attention-Deficit Hyperactivity Disorder (ADHD), Autism Spectrum Disorder, and Obsessive—Compulsive Disorder"
Joseph G. M. Hendriksen, PhD
Johan S. H. Vles, MD, PhD
Using a questionnaire-based study, we assessed the parent-reported prevalence of attention-deficit hyperactivity disorders (ADHDs), autism spectrum disorders, and obsessive—compulsive disorders in a group of 351 males with Duchenne muscular dystrophy. Of the 351 males with Duchenne muscular dystrophy, 11.7% were reported to have a comorbid diagnosis of ADHD, 3.1% had autism spectrum disorder, and 4.8% had obsessive—compulsive disorder. It can be concluded that the incidence of these neuropsychiatric disorders is higher in Duchenne males than in the normal population. This finding, together with recent reports on the higher prevalence of cognitive and learning problems in Duchenne, supports the view that Duchenne muscular dystrophy is not only a muscular disorder but also a disorder affecting the brain. It is important for clinical practice to take in account this heightened association. More research is needed to examine this association and its consequences.
Brian also had the genetic testing so they believe it is Beckers, and also by his CK levels. The levels are elevated with Beckers compared to normal, but much more elevated in Dechennes patients. I have seen by reading others' posts that some who have been diagnosed with Beckers seem to me to be more like Dechennes, but my son's specialist said the same as far how there is a variation in symptoms. We did go to Boston today and she didn't notice any decrease in his strength, so she isn't sure what's going on. She did do urine and blood testing today so we'll see what that shows. She was most concerned with his kidney function. She consulted with other specialists and isn't sure why his calves have shrunk becuase normally weakness definately accompanies that and he hasn't gotten weaker - so who knows. More waiting around.
Good luck to you and your family in August
new problem - have you experienced this or been told about this?
yesterday after having quite a busy day in and out of the pool and running around the yard with my nephew - my son Brian had very brown urine.He tried to hid it as I walked in the bathroom and then proceeded to tell me it has been brown before ( he had been told if it was ever brown to tell me) I was told by his neuromuscular specialist before if his urine is ever brown to immediately bring him to the ER - never thought that would happen). well my husband didn't want to go (because he is in denial) so I emailed the specialist. she said we should have gone because this is a sign of muscle breakdown and this muscle protein is excreted in the blood stream which eventually goes through the kidneys.. this protein can build up in the kidneys and cause damage. the hospital would have done CK (muscle protein) test and a kidney function blood test and put him on an IV to filter out the blood. she told us next time to page her and have the hospital in our area page her as well. anyway we are going to see her tomorrow in Boston an hour and 20 minutes away, but I really like her and trust her. pretty scary stuff. we were told with Beckers the progress would be very slow with probably little or no symptoms, but that hasn't been the case recently. He now complains not only of sore tired legs but his arms also at times. we weren't suppose to see her again until November but she wants to see us tomorrow. so more drama in our lives.
we have a weird thing going on right now. Brian get pain in his calves but they subside when he takes a break. I recently noticed that his calves which have always been quite enlarged are no longer so. The strap around his calves on his AFOs used to bearly fit. He has had this pair for a year. now the strap suddenly has an extra inch or so. visually his calves definately are no longer enlarged. a genetic specialist we saw recently for Aspergers and his physical thaerapist have also noticed that his calves are not enlarged. I emailed his neuromuscular specialist in Boston and she asked if he had increased weakness, falling down etc, as it is typical in the progress of MD for the calves to become less enlarged, but he hasn't gotten any weaker or falling down. I am concerned about it because it seems so odd and sudden. The specialist said just to keep an eye out for any changes or problems in weakness etc. I hate this just waiting around for things to get worse!!
I know what you mean about the guilt. we were constantly telling my son Brian the same about putting his feet down. also in terms of physical activity in general he has never really had stamina, and often needs to take breaks and we just thought he was being lazy or trying to get attention - of course we now feel so guilty for that thinking.
just noticed in your profile you are a military family - God bless you!
My oldest son is in the Navy stationed in Japan for the last 2 years. It is difficult on a mother but nothing compard to what spouses and children must go through!
continued from last post - sorry it is so long.
difficultly with problem solving, jokes with double meaning, play on words, trouble differentiating who, what, when questions, reading comprehension - inference, predicting etc, reading social cues, personal space. also shouts when he talks. when excited he jumps up and down flapping his hands, walks on his toes. loves deep pressure tight hugs etc. uses a textured cushion at school and home for extra sensory input to keep him focused on school work. used to wear a weighted vest but not recommended now with the MD. very social with kids but more and more with younger kids - more egocentric rather than being part of the crowd - the social level he should be at. doesn't know how to negotiate social situations. butts into a group on a different topic doesn't get back and forth of conversation. very messy eater comes home with a dirty face and clothes and doesn't care. I am now becoming concerned for him how some kids treat kids who are different. fortunately he goes to a small Catholic school with the same kids since kindergarten and they just think that's Brian. but I keep a close eye on it, and make his teachers aware of my concerns.
Other than the OCD symptoms what are some of your son's other behaviors? does he have the sensory issues? how does he interact with his peers?
my son didn't care about friends until 3rd grade. I picked him up one day crying saying we had to go buy pokemon cards immediately because all his" friends" had them. of course we stopped and got them. I was thrilled! I try to keep up with the "in" thing to help him fit in. he recently got an ATV for his birthday and a friend in school has one so we had him over to ride. I feel it is important to be aware because kids can have trouble with this on their own. kids with Aspergers do want to have friends. they just don't always know how to go about getting them. Hope this all helps.
love to hear more about your son
Hi Lisa - thank you to Suzanne for connecting us.
My son is 10 years old. He'll be going into 5th grade. Brian has many sensory isssues. He is very sensitive to all noises, but fearful of loud noises real or anticipated. very sensitive to smells. needs to smell everything. recently developed a new beh. he needs to smell every single bite of food he takes before it goes in his mouth. very picky with food smell & texture. clothing issues, tags nothing around the neck, etc. doesn't like change. I need to give him reminders ahead of time. needs to touch EVERYTHING - taking him into a store is like being with a toddler. no sense of danager - crossing a street, walking in parking lot. very fearful of wind developed last year when they learned about tornados in science. Yesterday was a breezy day refused to go outside. is obsessive but not in terms of starting over. Brian just has to touch everything put it in his mouth etc not afraid to be in front of people. won speech contests at school every year. good at memorizing obsessive about certain topicc that is all he'll talk about, draw, write etc. speaks out in class usually not on topic. continued....
LOL. You crack me up. I have been the same way with other people's problems. My cousin's daughter got her finger slamed in the door and it was cut off at the tip. So the Dr had to sew it back on. My cousin was crying to me over the phone about how kids are mean and will make fun of her becasue her finger will be crooked. If I had the power, I would have slapped my cousin in the head through the phone. I wish that was Michael's only problem. So, I have felt the same too. But, it also made me a stronger person because now when something happens, like a flat tire, I dont get as mad. I just think, "oh well, this sucks but its fixable." I have stopped thinking rude comments in my head about other people that bug me. I just dont let things bother me anymore. I need to focus on Michael and not some stupid person in the drive-thru that cant get my order right. I guess Im more calm now. There are bigger things that I need to worry about.
Venting is always good. It always made me feel better. I dont get all worked up as much as i used to. I think its now just becoming a part of our lives and we are doing what we need to do. We go see Dr. Wong in April. Im so excited to hear what she has to say. I hope she will not want to put Michael on steroids yet. Brent & I are not ready for that.
Talking to other moms on this website was the only way I was able to get through this. I was devastated and felt like my life came to an end. I couldnt except the fact he was not going to have a "normal" life. But I became a fighter and thank the lord I did. Our MDA dr here in Phoenix just told us he probably had Duchenne (didnt check his frames) and told us he will be in a wheelchair at 10 and die in the early 20's. I said, "NO WAY" I could listen to him anymore. We walked out of there and I searched for help. Then I found PPMD. They are our angels. Then I found Dr. Wong. She is the blessing we needed. She took the time to do test, frame checking, and everything she needed to do to give us the right diagnoses. If it wasnt for her, I would still think there was no hope for our son.
There are days where I get mad but I know that we are doing everything there is to do for him. The first Dr didnt deal with a lot of Duchenne boys so he wasnt as proactive as Dr. Wong. You should see her.
Let me know if you need anything. Im hear if you need to vent. Trust me I know how it feels.
Hello Lisa, how are doing? I hope those frame checkers I gave you helped make you feel better knowing he is in-frame. So when did you get his diagnoses? Michael's was confirmed Becker in July 09. Before that we didnt know but his first doctor was telling us Duchenne. Just wanted to touch bases with you. If you need anything, write me or call me anytime.