stereotypic movement disorder

I ahve a 7 yo daughter diagnosed with stereotypic movement disorder.  I am looking for someone with this disorder who can shed a little light on the subject.

[painkiller99]

Stereotyped motor behavior can occur both in normal children as well as children with primary neurodegenerative disorders. Some examples of stereotypic activity include repetitive head banging, thumb sucking, rocking, etc.

However, it is important to recognize any underlying brain dysfunction as most stereotypies are suggestive of this. These stereotypic movements occur in about 1/3 of mentally retarded children and can also be present in some autistic disorders, such as Asperger's, Rett's, and Angleman's syndromes.

The stereotypies in these conditions commonly present as repetitive, purposeless, coordinated, involuntary movements such as body rocking, chewing, lip smacking, weight-shifting, shoulder shrugging, etc.

[mapmanalex]

Dear dalejrsgirlie,
       I am not a doctor so please check with your pediatrician before applying or connecting anything I say to the particular case of your daughter, as we are all individuals with different histories, environments, and genetics.
        It is only for the past couple of weeks that I even knew there was a name for the disorder I have had for over fifty years.
        Most of the literature I have found on the computer says that most people with SMD outgrow it by the age of four.  I am fifty-one and have been seriously affected by SMD my whole life.  I am reluctant to say  "suffered my whole life" because it has always been an extremely enjoyable and often necessary activity.
         You don't give a lot of detail on how SMD is seen in your daughter. In my own case the most common and comforting behavior is to lay face down, fold my arms under my forehead, and rock my head up and down, slapping and at times slamming my forehead into the softer parts of my folded arms.  This I usually do for an hour or two when I go to bed, though occasionally it will last for several hours or even all night until I get up again.
          This has always been a kind of secret thing, as it was too embarrasing to discuss with others.  My mother used to yell at me because I might wake her with what she called my constant "bouncing".  Before he left us, when I was four, my father even tied me down to the bed to try and stop me.  PLEASE don't ever do that to your daughter--the thought of how terrifying that would be, how uncomfortable, is inexpressible for me.
            I was generally able to restrain my head banging as a child if I were spending the night with friends.  As an adult I could keep myself from the most noticeable movements when married, as I would not want either of my wives to see and be alarmed by this behavior.
             When married and in bed other, less-comforting, movements would take over, such as quietly slapping my hand against my leg or chest, swiveling both feet in cadence to the strange beats in my head, or lying on my back and rolling my head back and forth.  Most of the time these behaviors went unnoticed. If me wife were to wake during this type of episode it was easy to stop, sigh, and make her think that I was sleeping and that she had just fallen awake.
            Anytime in my adult life and all the way back to my childhood that I slept alone in a room I would "bounce". Until recently,  I didn't tell people about it.  It was an embarrasing secret--only my family knew about it and probably thought I had outgrown it when I moved out on my own.
            Other mannerisms I share that seem to be related to SMD are extreme skin-picking (scabs, blackheads, scars, cuts, dry patches, cracks around the heels, ears), hitting myself (not to cause pain--it is always done in a very steady and comforting cadence), toe or foot tapping, severe and ritualized nail biting.
            The one activity I have that I have never hid is the need to rock back and forth while in conversation or when reading. This is somehow connected to my ability to concentrate and absorb information.  Everybody knows I do that and I never thought much of it until my sister said that people might assume that my constant rocking indicated disinterest in the conversation or the people I was talking to.
            You should know that I have also had three serious head traumas in my life. The last one, in 2004, left me in a coma for three days, and since then my short term memory is bad, I am easily confused, and my SMD movements have taken such a prominant place in my daily life that I no longer bother to hide them. I am the caregiver for my mom and I don't care if she, or my sister, or anybody else sees or hears my constant, mostly late night rocking.
            Well, I hope that your daughter has a great life.  Maybe doctors can figure out what to do.  In the meantime, it would be my personal wish that you don't make your daughter feel bad about this.  These behaviors are, to my experience, unstoppable--they are at times the only comforting part of our lives.
           Best wishes and God Bless, Alex

[dalejrsgirlie]

I appreciate your reply to my post.  I haven''t checked my posting in a while.  She has a sideways rocking of her head that is of an unknown nature.  The worst part is the general irritability she has and her infrequent headaches that are awful.  She is also unable to stand still for more than a minute or two at a time.  She body rocks and it drives her teachers nuts but they are dealing with it quite well with reminders.  This is something that she doesn't even realize that she is doing which makes it even harder to help her with.  We have learned to just accept that this is part of who she is and are trying to help her cope withthe fact that she may deal with this the rest of her life.  We're all just thankful that it's nothing life threatening.  I helped her to read your message and she wanted to tell you thank you for sharing that with her.  She understands how hard it is to share with others.  God bless you for being so open and caring.  Your words have helped me to deal with her "behavior" as the neurologist calls it.  Take care!

                                                                    ~Amanda & Lyndsey