I was just wondering if anyones son has been diagnosed with OCD.  My son is seven and he has been doing some OCD behaviors.  He has these rituals like he has to go through certain spaces without touching anything.  If he touches something he has to start over.  I asked him what would happen if he didn't start over and he said he would be unsafe.  Anyone else experiencing anything like this? 

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I haven't seen anything about OCD and DMD, but I've seen a couple of things about seizures and Autism. But from what I understand about OCD it stems from the brain so anything is possible. He might just be a neat freak and that's a great thing. Take care
There is a discussion on here somewhere about dmd and ocd issues. I dont know where it is, but I remember reading some of it.
Hi Lisa,

My son is 9 and has also displayed alot of OCD behavior. He had routines he went through every day before I could leave him at school and was extremely detail oreinted and rigid in his thinking. He also had issues with anxiety and struggled with alot of excessive worries and fears. He's been on zoloft for over two years and that seems to have helped a great deal. In addition to starting the zoloft, we also worked with the school counselor and tried things at home, like using a worry box to help relieve some of his anxiety. He's doing much, much better now. Use the search box and search for OCD and you'll find a few discussions. Good luck.

Kim
my 8 year old max has the same worry, rigid, hard to transition. seems like an ocd/ autism spectrum thing. we have not bothered with diagnosis, just recognise him as quirky. i do hear more of these behavioral issues with dmd, we wonder if it is a result of dmd physically or if it results from the "medical" life or feeling out of control as he progresses. he has reason to worry, especially with an older brother who also has dmd and is much further progressed.
My son has BMD and Aspergers. He also has some OCD tendencies and many sensory issues and anxiety. I have been told by our neuromuscular specialist and a genetic specialist on autism at Children's in Boston, MA that many with MD have other issue like OCD, autism, ADHD, and learning disabilities. They feel there may be a connection with MD as it affects the entire body, it must therefore affect the brain as well, but they don't know how yet.

Hi Denise.  My 7 year old son has BMD and we are concerned that he has Aspergers and/or ADHD as well.  He has had a hard time with attention and focusing as well as a hard time in social situations since he was 4.  We've gone to a developmental pediatrician in the past, and she said he has tendencies of both, but she would only diagnose him with a Pramatic Learning Disorder.  She said he was too young to diagnose him with Aspergers or ADHD.  Since he had a June birthday, we ended up sending him to Kindergarten a year later, hoping this would help him.  He still does things that just don't seem like "normal" 1st graders should do.  The best way I can describe his behaviors is quirky.  My son is doing well academically in school, but he lacks appropriate social skills.  I'm just wordering if your experience has been similar to ours.

 


Denise Gionet said:

My son has BMD and Aspergers. He also has some OCD tendencies and many sensory issues and anxiety. I have been told by our neuromuscular specialist and a genetic specialist on autism at Children's in Boston, MA that many with MD have other issue like OCD, autism, ADHD, and learning disabilities. They feel there may be a connection with MD as it affects the entire body, it must therefore affect the brain as well, but they don't know how yet.

Hi Kelli,

Our situation was similar. We went to 3 neurologists before we got our diagnosis of Aspergers. My son was diagnosed at 9 years old. The first time we were told when he was 4 that he had Sensory Processing Disorder - which he definately does. Then the second time around age 7, we were told by another neurologist that that nothing was wrong with him - he just had behavior problems and we needed to go to family counseling to learn to control his behavior - we didn't. Then finally a neurologist at Boston Children's Hospital diagnosed him with Aspergers - which is what I thought all along. He also thoought he might have ADHD, but said why give him another label - it won't make a difference because I wasn't looking to medicate him. Aspergers is difficult to diagnose too early because many of the symptoms have to do with socialization and full typical development of socialization comes later. I definately started to notice big differences compared to his peers in 3rd grade. Fortunately for me his teacher also noticed - which was a big help getting someone to subsatantiate what I was seeing when we went to the neurologist. My son's teachers also comment that my son's behaviors are quirky. It breaks my heart sometimes because I am constantly "teaching" my son appropriate behaviors especially in public and sometime it seems like he is a small child again. The hardest part for me is he doesn't care if he is doing something not appropriate for his age. When I try to point out to him that something he is doing is not what someone his age would do, he just tells me he doesn't care - which he really doesn't. You know at his age now - in 5th grade - kids will act a certain way at home, but very different in front of their peers - he doesn't and really doesn't care what other people think if he is doing something quirky that makes him stand out. Fortunately for him - he goes to a small private school and has been with the same kids in his class since kindergarten. They just accept my son for who his is, because they have always known him to be the way he is. I worry what will happen in high school though. At that age it is all about fitting in - and he definately doesn't at times.

I would suggest you keep at it and get the support of his teachers. Try again in a couple of years if you still notice the same behaviors.

Denise,

Hi Denise,

Thank you so much for your indepth email.  I find comfort in knowing we're not alone. My son is seeing a psychologist next Tuesday, then a Developmental/Behavioral pediatrician on Thursday.  I'll let you know the results.  I may be chatting with you again in the near future.

 

Take care,

Kelli   



Denise Gionet said:

Hi Kelli,

Our situation was similar. We went to 3 neurologists before we got our diagnosis of Aspergers. My son was diagnosed at 9 years old. The first time we were told when he was 4 that he had Sensory Processing Disorder - which he definately does. Then the second time around age 7, we were told by another neurologist that that nothing was wrong with him - he just had behavior problems and we needed to go to family counseling to learn to control his behavior - we didn't. Then finally a neurologist at Boston Children's Hospital diagnosed him with Aspergers - which is what I thought all along. He also thoought he might have ADHD, but said why give him another label - it won't make a difference because I wasn't looking to medicate him. Aspergers is difficult to diagnose too early because many of the symptoms have to do with socialization and full typical development of socialization comes later. I definately started to notice big differences compared to his peers in 3rd grade. Fortunately for me his teacher also noticed - which was a big help getting someone to subsatantiate what I was seeing when we went to the neurologist. My son's teachers also comment that my son's behaviors are quirky. It breaks my heart sometimes because I am constantly "teaching" my son appropriate behaviors especially in public and sometime it seems like he is a small child again. The hardest part for me is he doesn't care if he is doing something not appropriate for his age. When I try to point out to him that something he is doing is not what someone his age would do, he just tells me he doesn't care - which he really doesn't. You know at his age now - in 5th grade - kids will act a certain way at home, but very different in front of their peers - he doesn't and really doesn't care what other people think if he is doing something quirky that makes him stand out. Fortunately for him - he goes to a small private school and has been with the same kids in his class since kindergarten. They just accept my son for who his is, because they have always known him to be the way he is. I worry what will happen in high school though. At that age it is all about fitting in - and he definately doesn't at times.

I would suggest you keep at it and get the support of his teachers. Try again in a couple of years if you still notice the same behaviors.

Kelli,

So much of what you described sounds like Connor.  Actually, before he was diagnosed with BMD (we had no clue) I thought he had a form of autism (toe walking and leg cramps have been his only BMD symptom).  He is very "quirky".  He will talk to you all day about animals but when you asked him if he likes something he shuts down.  He can talk about dinosaurs and animals but shares very little about himself.  His first grade teacher brought up Aspergers.  She noticed that he just didn't seem to enjoy being at school.  He would not look her in the eye when he spoke.  He stills has trouble with transitioning between activities.  He is always very loud.  He also has trouble controlling himself when he is angry (yelling and such).  His is in the 2nd grade and he does have two good friends (although I had to find that out through the teacher because he would never mention them at home).  He does still at times have some OCD repetitive behaviors but they are not constant. 

We have never had him tested for Aspergers although we have discussed it with his doctor.  I have been thinking about having him tested.  He is doing well in school as far as grades but his teacher's only concern is behavior issues.  I have also noticed that he still really enjoys playing with younger kids.  I don't think other 8 year olds enjoy playing with four year olds as much as he does. 

Good luck to you

Denise Gionet said:

Hi Kelli,

Our situation was similar. We went to 3 neurologists before we got our diagnosis of Aspergers. My son was diagnosed at 9 years old. The first time we were told when he was 4 that he had Sensory Processing Disorder - which he definately does. Then the second time around age 7, we were told by another neurologist that that nothing was wrong with him - he just had behavior problems and we needed to go to family counseling to learn to control his behavior - we didn't. Then finally a neurologist at Boston Children's Hospital diagnosed him with Aspergers - which is what I thought all along. He also thoought he might have ADHD, but said why give him another label - it won't make a difference because I wasn't looking to medicate him. Aspergers is difficult to diagnose too early because many of the symptoms have to do with socialization and full typical development of socialization comes later. I definately started to notice big differences compared to his peers in 3rd grade. Fortunately for me his teacher also noticed - which was a big help getting someone to subsatantiate what I was seeing when we went to the neurologist. My son's teachers also comment that my son's behaviors are quirky. It breaks my heart sometimes because I am constantly "teaching" my son appropriate behaviors especially in public and sometime it seems like he is a small child again. The hardest part for me is he doesn't care if he is doing something not appropriate for his age. When I try to point out to him that something he is doing is not what someone his age would do, he just tells me he doesn't care - which he really doesn't. You know at his age now - in 5th grade - kids will act a certain way at home, but very different in front of their peers - he doesn't and really doesn't care what other people think if he is doing something quirky that makes him stand out. Fortunately for him - he goes to a small private school and has been with the same kids in his class since kindergarten. They just accept my son for who his is, because they have always known him to be the way he is. I worry what will happen in high school though. At that age it is all about fitting in - and he definately doesn't at times.

I would suggest you keep at it and get the support of his teachers. Try again in a couple of years if you still notice the same behaviors.


Lisa

what you describe sounds much like my son Brian. My son also has the toe walking - he was in Early Intervention because at the age of 18 months he had no language, and they never brought up a problem with his toe walking. I finally brought it up to my pediatrician when he was in first grade and she sent us to a pediatric orthopedic surgeon and she never brought up the possibility of MD. She felt he was toe waliking for extra sensory input as he had been diagnosed with Sensory Processing Disorder by then. When he got that diagnosis they ruled out autism., although he had some the symptoms, he didn't meet all the criteria at that time. The orthopedic surgeon prescribed AFO's to help stretch his heel cords and he went to occupational therapy, but no one mentioned MD. It was quite a shock when we accidentaly found out. My son also prefers to play with younger kids - I think it is easier because the social expections are much lower than what is expected by their peers. My son is also loud, and says he has friends at school, but I think they are more friends to him, than he is to them. My son also has OCD synmptoms and doesn't like transitions. He doesn't have any behavior problems at school and does fine academically, but he definately has quirky behaviors that set him apart from his peers. the dtrouble with transitions is more at home when we are going somewhere - even if it is something he wants to do - like go the movies or a birthday party. He gets very anxious about new situations. I guess the good part is he doesn't seem to notice he is different and is happy to play with younger kids - especially at school during recess or his after school program.
Lisa Anderson said:

Kelli,

So much of what you described sounds like Connor.  Actually, before he was diagnosed with BMD (we had no clue) I thought he had a form of autism (toe walking and leg cramps have been his only BMD symptom).  He is very "quirky".  He will talk to you all day about animals but when you asked him if he likes something he shuts down.  He can talk about dinosaurs and animals but shares very little about himself.  His first grade teacher brought up Aspergers.  She noticed that he just didn't seem to enjoy being at school.  He would not look her in the eye when he spoke.  He stills has trouble with transitioning between activities.  He is always very loud.  He also has trouble controlling himself when he is angry (yelling and such).  His is in the 2nd grade and he does have two good friends (although I had to find that out through the teacher because he would never mention them at home).  He does still at times have some OCD repetitive behaviors but they are not constant. 

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