Replies to This Discussion

Permalink Reply by Michelle Gonzales on March 23, 2009 at 4:09pm

It's actually not that rare at all. Most DMD boys show signs of the autistic spectrum. For a while, before Nicolas was diagnosed, we thought maybe he had autism, but Dr. Wong confirmed he does not... sometimes he doesn't seem to "connect" if you know what I mean. I hope that you find more similar cases from parents who can answer your question and give you some real advice.

Permalink Reply by MicahsDaddy on March 23, 2009 at 4:10pm

it is very common. my son was first dx'd with autism at 3 1/2 y/o, then 6 months later, DMD.

it has to do with the lack of dystrophin in the brain. many boys will have some type of ASD, the percentages are higher when there is a deletion (or mulitple deletions) somwhere between exon 45 and 52 (i think that's the range).

Permalink Reply by cristina chandler on March 23, 2009 at 4:20pm

Thanks
I don't feel so lost anymore
How you do deal with two diagnosis?
I just find out about the duchenne

Permalink Reply by cristina chandler on March 23, 2009 at 4:28pm

Thanks Michelle
I just find out about the duchenne and is kind of hrad to deal with a double diagnosis.


Michelle said:

It's actually not that rare at all. Most DMD boys show signs of the autistic spectrum. For a while, before Nicolas was diagnosed, we thought maybe he had autism, but Dr. Wong confirmed he does not... sometimes he doesn't seem to "connect" if you know what I mean. I hope that you find more similar cases from parents who can answer your question and give you some real advice.

Permalink Reply by Michelle Gonzales on March 25, 2009 at 11:29am

Christina,

I think we always suspected with Nicolas. He was born premie, and we were told it was developmental delay, which i'm sure a bunch of parents here also heard. then he seemed to cry ALOT and would throw terrible tantrums. We were always told it was the terrible twos, but I knew that wasn't true. I thought autism, because he wouldn't really speak and seemed distant. I had pediatricians and even Dr. Wong check him. He's not autistic, but there's still something with him. He seems a bit OCD and will repeat himself and repeat questions. We've just resigned to the fact that he's just Nicolas and we love him no matter what. I do believe that it has to do with lack of dystrophin to the brain. Can't do anything about that... YET. Do you know yet the severity (or not so severe) of autism that Samuel has? there seems to be such a wide range. I know that some people treat with diet and other variations of therapies. The diagnosis is always very hard at first... I would never want to go back to the day I was told. I felt my heart was being ripped out of me. But now after 2 years, it still hurts and i'm still angry that there's no cure or clinical studies in the US that Nicolas can be a part of, but I don't feel like I'm dying anymore. I cope better... I've learned to love and listen and appreciate Nicolas more than I ever believe I would have. My thoughts and prayers are with you and your family.

Permalink Reply by Brian Denger on March 25, 2009 at 12:34pm

There is evidence to suggest that Autism and associated disorders co-occur at a greater prevalence in boys who have DMD than what is expected in the general population. A study in Massachusetts suggests the rate is significantly higher than the rate of prevalence for the general population: http://jcn.sagepub.com/cgi/content/abstract/20/10/790 Additionally PPMD hosted a Workshop in 2006 where this topic was further discussed: http://www.nmd-journal.com/article/PIIS0960896607006736/fulltext#ba... The participants in the Workshop reviewed literature, including the previously cited study, and work done by Veronica Hinton, PhD that supports the hypothesis that the rate of co-occurrence is higher.

Brian Denger

Permalink Reply by Karen Barnett on March 25, 2009 at 1:02pm

My son is not autistic either but has some problems with behavior, OCD, SID (sensory Integration Disorder), ADHD, etc. My son will also repeat himself (especially the beginning of sentences) and repeat questions (like Michelle's son). He often just doesn't get everything you are saying to him so you have to take it slow. He has very slow processing. He has to really think about what he is saying sometimes and the words often come slow, He is in 2nd grade and has learning disabilities. It is due to the lack of dystrophin in the brain.. Hopefully when they find a cure or treatment for this disease it will help the brain as well. Despite my son's problems, he has some of the most endearing qualities I have ever seen in a child. He is always talking about how beautiful things are - the sky, a certain landscape, picture, etc. He is by far my most affectionate child (I have 3 others). He is always giving me lots of kisses and hugs. When he was a baby he breastfed the longest and always wanted to be held and cuddled. I love him so much despite his problems and really appreciate all his special qualities. You learn to adapt and you adjust to a lot of the quircky behaviors and it does get easier.

Permalink Reply by cristina chandler on March 25, 2009 at 1:08pm

Hi Michelle
Samuel was diagnosed when he was almost 4, we started him with ABA THERAPY, OCUPPATIONAL AND SPEECH
SINCE THEN HE IS PROGRESSING SO MUCH EVERYDAY, FROM NON VERBAL HE JUST STARTED WITH FEW WORDS AND WE HAVE A LOT OF HOPE HE IS GOING TO TALK.
HE'S MD DIAGNOSIS CAME JUST FEW MONTHS AGO AND IS STILL DEVASTATING, LIKE YOU SAID I FEEL LIKE I AM DIYING BUT SAMUEL IS SO BEAUTIFUL THAT MAKE ME WANT TO LIVE JUST TO SEE HIM EVERYDAY.
THANK FOR HAVING ME IN YOUR PRAYERS, YOU AND YOUR SON ARE IN MINE TOO.
CRISTINA
Michelle said:

It's actually not that rare at all. Most DMD boys show signs of the autistic spectrum. For a while, before Nicolas was diagnosed, we thought maybe he had autism, but Dr. Wong confirmed he does not... sometimes he doesn't seem to "connect" if you know what I mean. I hope that you find more similar cases from parents who can answer your question and give you some real advice.

Permalink Reply by cristina chandler on March 25, 2009 at 1:15pm

Thanks BRIAN
Do you think the autism is a consecuennse of the MD, or the autistic behaviors are related.
Looks like my other son Cristian 3 and 10 months also has Duchenne but he doesn't have any other issues like autism or developmental delays.
All this is so overwhelming, I am just trying to organize a lot of things in my head and I think trying to find an answer.
Cristina
Brian Denger said:

There is evidence to suggest that Autism and associated disorders co-occur at a greater prevalence in boys who have DMD than what is expected in the general population. A study in Massachusetts suggests the rate is significantly higher than the rate of prevalence for the general population: http://jcn.sagepub.com/cgi/content/abstract/20/10/790 Additionally PPMD hosted a Workshop in 2006 where this topic was further discussed: http://www.nmd-journal.com/article/PIIS0960896607006736/fulltext#ba... The participants in the Workshop reviewed literature, including the previously cited study, and work done by Veronica Hinton, PhD that supports the hypothesis that the rate of co-occurrence is higher.

Brian Denger

Permalink Reply by Brian Denger on March 25, 2009 at 2:43pm

Hello Cristina,

There is a lot going on as a result of the physical, behavioral and intellectual manifestations of DMD. In my mind it often is a question of which came first the chicken or the egg. For families living with some of these co-occurring behaviors and conditions an answer today would be wonderful.

Many families believe their sons have Obsessive Compulsive Disorder and I wonder in at least some of the cases does the child such little control over their world that they make up for some of this through their quirky habits. Regardless there is some level of continuity between how these boys/young men function. Often I read of parents describing sensory issues such as an extreme dislike for loud noises and I remember when my sons were little my younger one covered his ears in anticipation of any noise. My older son didn't do this as often, but he hated to walk on the beach with bare feet and loved to have his arms gently stroked to the point he wouldn't so the person wouldn't stop. Both are related, but how and why all this is associated with DMD is interesting, albeit of much concern to affected families.

There are a few people working in this area (Poysky, Hinton and Hendricksen are a few who come to mind.), but understandably the priority is in ending the progression of muscle weakness for DMD to improve the quality of life and extend lifespan. The document from the PPMD Workshop might be of help to physicians who are trying to help families sort through much of this for their sons.

Brian Denger

Brian

cristina chandler said:

Thanks BRIAN
Do you think the autism is a consecuennse of the MD, or the autistic behaviors are related.
Looks like my other son Cristian 3 and 10 months also has Duchenne but he doesn't have any other issues like autism or developmental delays.
All this is so overwhelming, I am just trying to organize a lot of things in my head and I think trying to find an answer.
Cristina
Brian Denger said:

There is evidence to suggest that Autism and associated disorders co-occur at a greater prevalence in boys who have DMD than what is expected in the general population. A study in Massachusetts suggests the rate is significantly higher than the rate of prevalence for the general population: http://jcn.sagepub.com/cgi/content/abstract/20/10/790 Additionally PPMD hosted a Workshop in 2006 where this topic was further discussed: http://www.nmd-journal.com/article/PIIS0960896607006736/fulltext#ba... The participants in the Workshop reviewed literature, including the previously cited study, and work done by Veronica Hinton, PhD that supports the hypothesis that the rate of co-occurrence is higher.

Brian Denger

Permalink Reply by Janine on March 25, 2009 at 5:08pm

I think it is also important to point out to parents of young children that just because their son has dmd does not mean he will have cognitive issues. There is a higher incidence but they do not always go hand in hand.

Janine

Permalink Reply by Michelle Gonzales on March 25, 2009 at 5:27pm

Karen,

I have to agree with you totally about the endearing qualities. my Nicolas sees the beauty in the simplist of things and he is very affectionate and loving and has the richest imagination ever. One of his difficulties of course was language. we just take it slow with him and he's improved leaps and bounds. He also has the memory of an elephant!!


Karen Barnett said:

My son is not autistic either but has some problems with behavior, OCD, SID (sensory Integration Disorder), ADHD, etc. My son will also repeat himself (especially the beginning of sentences) and repeat questions (like Michelle's son). He often just doesn't get everything you are saying to him so you have to take it slow. He has very slow processing. He has to really think about what he is saying sometimes and the words often come slow, He is in 2nd grade and has learning disabilities. It is due to the lack of dystrophin in the brain.. Hopefully when they find a cure or treatment for this disease it will help the brain as well. Despite my son's problems, he has some of the most endearing qualities I have ever seen in a child. He is always talking about how beautiful things are - the sky, a certain landscape, picture, etc. He is by far my most affectionate child (I have 3 others). He is always giving me lots of kisses and hugs. When he was a baby he breastfed the longest and always wanted to be held and cuddled. I love him so much despite his problems and really appreciate all his special qualities. You learn to adapt and you adjust to a lot of the quircky behaviors and it does get easier.

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