Thursday, September 3, 2009

Email from Parents

I receive many emails from parents interested in learning more, and here is one such exchange. I encourage other parents to post comments!



Hi Amanda,
I was searching around on the internet and saw both your youtube post and this blog.  I am so happy to reach out to another parent who is trying to learn more about this.  I need all the help and support I can get...I have been trying to figure out what may be happening to my little boy, K., for two and a half years now.

We just heard the term Motor Stereotypy Disorder last week after we visited a Developmental Pediatrician. She gave me a sheet on it and said I should visit a Pediatric Neurologist to further determine if this is what my son has been dealing with. So I went online to research it after thinking this really does sound like my child, I saw a few youtube clips of children with this disorder and began to cry.  While we have not be diagnosed with this, seeing those children reminded me so much of my K. Like I said, we have been searching for answer for years, seeing many drs, therapists and talking to others...and never have I heard of this disorder.  We have gotten that he has Sensory Processing Disorder and some Attention issues.  So we have been doing OT for Sensory for about two years now.  But I always knew there was something more, something we were missing, something that would explain this better.  We have never met or most drs have never seen another child that does what my child does in his movements...so I knew we were different and I had to try to find an answer.

Our symptoms came out of the blue one day and came aggressively.  He was 2.5years old at the time.  We put him in the hospital for seizures and after many tests and medication, seizures were ruled out...but they couldn't tell us what was wrong with him.  We left the drs with no answer at all.  We went back a year later and they told us tics...but I still didn't feel like that was the answer.  My gut told me there was more to this.  He was a very healthy baby with no problems at all, born on time and perfectly...something happened to him and I still don't know what.

He does have complex movements where he jumps, sometimes flaps his legs, moves/flaps his arms around, makes facial expressions and can usually be stopped when distracted or spoken to.  He does it more when he is excited, doesn't have anything to focus on or it is loud.  He is not autistic...as I don't believe he is and all the drs and therapists have said the same.  I keep getting that these movements are his form of stemming and his comfort mechanism.  Even if that is true, I don't and have never believed that in the beginning they were any type of comfort mechanism...his body was doing something all on its own. 

So I have been fighting to find an answer for him and this one seems so close to it.  Any information you can share would be wonderful...actually all the info you have put out has been a blessing for me, finally something that looks, sounds and is so close to what my child is like.  We have been alone in this for a long, long time it seems like.  I just wish I had found this before and wonder how I never heard of it.  But either way, I am glad I have now.  Thank you for putting your life and information out there for others.  Like I said, I cried after seeing/reading your information because it seems like we are not alone anymore.

Sincerely,
A.
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Hi Amanda,
So I just sent you this really long email just talking about us and my son but I did have a question for your blog. 

Do children with Motor Stereotypy Disorder grow out of it?  I noticed in some articles that it stated that children had these certain behaviors more than five years but I am curious what "more" means.  Will it go away one day?

Thanks,
A.
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Hi A.-

I was just reading through the first email!  Do you mind if I post it on the blog for other parents to comment as well?  I will post my reply there so all can see too if you don't mind.  I will id you and your son just by your first initial to protect your privacy as well. 

My ped neuro said that most children see this condition extinguish sometime in their teens.  He told the story about a girl he saw when she was very small for stereotypies who had a really large set of movements, but now as a 14 year old she just drums her forefingers together. My own daughters movements have gotten "smaller" if you will over time, but as she is only 6 I expect that we will see them for some time still yet. 

I'm just like you.  The big concern was that I am was a parent who couldn't get an answer and something horrible might be happening to my child under my nose!  I was assured by the Dr. that unless some other condition crops up, stereotypies on their own are not harmful and do not require treatment except in such extreme cases that a child's stereotypies cause extreme harm to themselves.

I'll reply to your first email as well, but please let me know if you'll be okay with posting it.  I also have other info from a great research in the area with good news about a gift his university received to study stereotypies in non-autistic children.  Great news indeed!

Amanda
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I don't mind at all you posting my info I sent, if our story can any way help like yours did for us, then yes!!! I tried to sign up to be one of your followers but I must not be doing something right.  I will work on that.

But I am so excited/relieved about these new findings and really believe this is our answer.  We are currently trying to get into a different Pediatric Neurologist who specializes in movement disorders to continue with the diagnosis. 

For years peoples kept asking me if K. was autistic because he had these movements and he is not.  We kept falling into that category and I knew we didn't belong there.  We have been just going on that he has Sensory Processing Disorder.  So we do get Occupation Therapy and didn't know if they also treats motor stereotypy but it seems like it is more of a behavioral therapy if any...is that right?

Well, K. has been having the movements since he was 2.5 and he is almost 6 now.  While they haven't gone away, he has learned to disuse them more to look like he is playing and has some good days where he hardly does them and some really bad days where that is all he does.  I watched him on the playground at his small private school yesterday and that was all he was doing.  It breaks my heart because I wish he would use that time playing with others or just playing.  But he does stop when asked to or when he is distracted...then goes back to it later.

Thanks for writing back, I am so excited to have someone to talk to about this.  And like I said, any good, new info you might get...I would love to learn it as well.  I want to learn as much as I can, now that we might have our answer!!

A.
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Hi A.-

I want to thank you first for allowing me to post your email on the blog.  This is the best way I can think of to get the information ball rolling!  Your email is so similar to the many I have received from other parents who are looking for answers.  They just never feel like they get to the bottom of the matter!  As your son hasn't been seen by the pediatric neurologist yet for a diagnosis, I would caution you to be prepared for whatever they might say.  I would hate for you to get comfortable with the motor stereotypy idea and then have something else to face.  I'm not trying to discourage you, but please do make sure to follow up with the neuro. 

That being said, your son seems to have a pattern much like my daughters.  She is also 6 now and one of the main places we see her stereotypies is in physical play.  Her kindergarten teacher last year and her new 1st grade teacher have both reported seeing no stereotypies in the actual classroom setting.  They have seen them on the playground and in the gymnasium.  I don't understand what it is about being up and around that lets them happen more often, but that seems to be the case.  Of course at home she does them all the time.  Best reasoning I can come up for that is she is in her private home environment, whereas in school she is maybe unconsciously monitoring her stereotypy better.  It can be frustrating at home to see them every 30 seconds, but honestly they can happen that frequently, if not more.  Some days I feel like I say 'settle'  a thousand times!  We typically say her name or 'settle' and that interrupts the stereotypy.  

The good news about my daughter is that socially, she has been completely unaffected.  She is a funny little girl who has several little friends and is just as chatty as can be!  She has however, started getting frustrated recently with trying to curb the stereotypies.  She's been saying, "Why can't I just stop," and "It's so hard to stop it."  That breaks my heart of course, because I know she can't stop it and this has really been the first indication that she's frustrated with it too.  About a year ago she asked my husband, "What's wrong with my body," which even thinking about now makes me want to cry.  I understand that stereotypies are not as devastating as plenty of other pediatric illnesses, but for a parent who hears that, I think we'd do anything to try and make it better.

Good luck to you and your son, and please keep checking back.  I'm going to be gathering as much info as I can!

Thanks again for sharing-

Amanda
 

8 comments:

  1. My son started with stereotypies at the age of 2.5 also. We moved to a new house which he had a really hard time with and within 2 weeks he started with this odd behavior. At first we thought he was having seizures. He would look like he was in a daze starring at his hand and then his arms would start to move involuntarily. Seizures were ruled out after an awake EEG and video EEG. His behaviors quickly turned much more complex...running back and forth sometimes jumping and jerking his right arm up to his face. He also makes a noise while he is doing this. The nuerologist said that it was a stereotypie and there was nothing to worry about it would probably stop. That was a year ago he is now 3.5 and still going strong. I am about to take him back to the doctors because I want a second opinion. The other thing i dont understand is that he never really does the running thing out in public. The only thing I notice if we are not at home is the starring off and the humming noise. Do any of your children make any noises. Also what i dont understand is if this is such a big characteristic of autism I dont understand how it doesnt put them on the spectrum.
    Thanks P.

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    1. hey! my name is rebecca and i have a 2.5 year old daughter with cms and she has a phonation (sound) while doing her movement but it's very subtle. phonations are common with a child with cms.
      i worked as a behavioral specialist for 4 years prior to staying home and i'd like to answer your question as to why the movements don't put them on the spectrum. autism is a social and developmental disorder and is marked by delays ie social delays, frequently speech delays in toddlers and young children etc. delays depend on where on the spectrum they fall. in the most high functioning form of autism, aspergers, they may actually be very advanced but still have social handicaps, to name only one of the many features. autism being a social and developmental disorder automatically distinguishes cms children from the spectrum. children with cms are completely normally developed children with a motor movement. the only difference between other children and a child with cms is a movement, no delays and no social ramifications which is always characteristic of any autistic child any where on the spectrum. an autistic child has many varying sorts of social impairments like not making eye contact, obsessing and only wanting to talk about a narrowed interest, lack of understanding of social cues, social gestures, social situations, etc. again, it is a spectrum but these are typical behaviors and all autistic children have social delays or idiosyncratic social behaviors.
      the repetitive movements in an autistic child are referred to as stimming from the root word stimulate. another characteristic of autism is the high rate of sensory issues which is what stimming revolves around. an autistic child is having difficulty processing sensory information where as a child with cms doesn't have a processing problem as it's not classified as a sensory disorder.
      to give an example of a child with autism having sensory issues: a loud crowd, bright lights, an exciting party, loud sirens, etc. cause many children on the spectrum to have meltdowns because it is too much of a sensory overload. the same reason they have a meltdown in a hectic situation is the same reason they may rapidly do a movement in a happy moment as well, but both stem from sensory processing.
      to simplify, autism is a social and developmental disorder marked by delays. within autism you will see sensory issues which many times is what a flapping or repetitive movement comes from. a child with cms is not delayed in any area and though a child on the spectrum can have the same motor movements, having one 'response' or 'symptom' of a disorder doesn't qualify a person as having a disorder or diagnosis. in order to be diagnosed with any disorder, a child must have a group of symptoms because if not, we would all have five disorders....
      examples:
      i check my alarm clock repeatedly five times a night and ritualistic anxious behaviors are a facet of ocd so i must have ocd. or i am forgetful or distracted at work so i must have ADD. of course not, right? that's because you need a group of symptoms to distinguish one disorder from another and without a group of symptoms, its not considered a diagnosable disorder. in the same way a fever and sore throat doesn't mean it's strep but a fever, sore throat, and white blotches very well may. similar symptoms don't mean the same disorder or same root just as strep comes from one strain and a sinus infection giving you almost the same symptoms comes from a completely different cause. repetetive movements come from different places/causes in these children and having a movement in and of itself can have absolutely nothing to do with autism even though they resemble each other outwardly. in the same way, these movements wouldn't qualify them as having tourettes.
      i hope you could extract something of sense from that! haha

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  2. I am so happy that I came across this blog. I have a beautiful 4 year old son. At about 18 months he began to rub his hands in a fast upward motion on his stomach every time he was excited. At about 2 years old he started jumping in place as he was rubbing his hands on his stomach when excited. He does these repetative motions many, many times a day. About six months ago he added rubbing his eye with his right hand when jumping and after stomach rub. When he started we used to laugh and say how cute he was when he was excited but now we are beginning to realize that it is more. He does not seem to be aware of these movements and we have not called it to his attention. I have talked to his dr. and she said it was a tick and not to worry. How can you not worry when you have little to no information and you realize that as he gets older it may become an issue for him with his peers. Developementally he is smart, plays great with friends, can sit and focus on reading, doing a puzzle, watching a movie,for long periods of time. I have not met or heard of any other parents experiencing these behaviors with their children and I would appreciate any information you can provide to me regarding motor stereotypy. I want to protect him from being hurt by something that is not his fault. How can I help without having him think that what he is doing is wrong?

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  3. Michelle (Mason's Mommy)December 8, 2009 at 7:55 PM

    Hi there! I’d like to preface this entry with a huge thank you for creating this forum for parents of children with primary stereotypies.

    My son, a beautiful 3.5 year old little boy, has been doing his ‘movements’ for nearly 2 years. In his case, when he is engaged in an activity that excites him, he moves his fingers-one at a time (like a pin wheel) into the palm of his hands, in front of him. He does both hands at the same time and makes a humming noise (sticking his tongue out on occasion).

    For years I have taken him to various neurologists which were very quick to suggest medication for his “ticks” in an effort to minimize the ‘urges’. Although, I never even considered that course of treatment, I have taken him for therapy with a Behaviorist (a few months worth) as well as OT (which he has been doing for over a year). Despite all of our efforts, his hand movements have not subsided.

    This past summer, I (like Amanda who commented on an earlier entry) also took my son to John Hopkins University to meet with Dr. Singer and participated in his study. After meeting with my son for a few minutes, he explained the diagnosis of “primary stereotypy.” Finally I had an answer! Although, according to Dr. Singer, there’s not much more I can do at this point, it appears that if my son is in the process of one of his hand movements, giving him a car or toy, etc seems to distract him…But only sometimes.

    He’s very aware of his hand movements, since they occur throughout the day, and while he does them, often announces it to me saying, “Mommy I’m excited & I can’t stop this. I don’t want to stop.” When I’ve asked him why he “needs to do his hands” he’ll just say that he likes it because he’s excited about the cars, train, houses, etc. Sometimes he’ll tell me not to look and to leave him alone but then there are those times where he’ll actually call me over so he can do his movements and joke about it.

    One of the OT’s he was seeing last year, in an effort to ‘fix’ my son, was telling him to ‘stop’ in a harsh tone & had both me & my husband do the same… It was horrible and, undoubtedly, made him very aware & very insecure. Often yelling, “Don’t look at me!”. It was truly heart-wrenching seeing a 2 year old go through those emotions and, after about 1 month, I found another OT who specializes in working with bright, high functioning kids. She has focused on trying to substitute his movements with other activities, among other things. Between his new OT, me & my husband, we have been able to help him overcome most of the insecure feelings he was having. Now, he’s a very happy & active little boy who gets ‘excited’ a lot.

    My fear is that, as he gets older, children may see him as different and subject him to ridicule. As it is now, there are some kids in his preschool class that mimic his hand movements but they, as per his teachers, do it with him (“monkey see, monkey do”). It comes from a sweet place…Alas the beauty of non-judgment! I just pray the older children will be as kind.

    I have some video of my son, which I had initially submitted to Dr Singer for review prior to our visit, of him doing his hand movements and hope to post within the week.

    Once again, thanks for this forum & for letting me vent….

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  4. I am so grateful that you have started this website. My beautiful daughter Michaela is 3 years old and was just diagnosed with motor stereotypies about 3 weeks ago. She flexes her elbows and pill rolls her fingers with occassional singing or humming. She is a healthy child. She has achieved all of her developmental milestones. She started with the hand movements at about 6 months old when excited, tired, or stressed. I knew that this just could not be normal. Of course everyone (family, doctors) kept reassuring me that it was and I was just being overprotective. I couldn't understand how the movements could be identical every single time. We recently moved and changed pediatricians. I took the video of her doing these movements and he referred us to a neurologist who diagnosed her with this. We also will be seeing Dr.Singer in March. I have so many questions.. I hate to vent but I am so distraught over the situation. I have found myself crying more than I ever have before. I am having a hard time finding research about the diganosis. The neurologist was nice as could be but it was like your daughter has stereotypies and there is nothing you can really do to help it. Has anyone found anything that has been helpful in controlling the stereotypies? Have any of the doctors mentioned if this is something that will go into adulthood. I have not found anything about healthy adults with stereotypies? I am just so worried about her future and psychological well being. She is a sweet, intelligent, loving child with a wonderful heart and spirit. I don't want people to judge her because of something that is out of her control. I am worried about her starting school and also have even considered home school to protect her. Thanks again for the site. It feels good just to let this out to people who understand my situation.

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  5. Wow am I glad to read these posts. We are raising our now 5 year old grandson who flaps things in front of his face quite often. On Wednesday the school plans to 're-label' him so he can 'get more support services.' There is some toe walking and also face slapping and drumming. The flapping of objects in front of his eyes is often accompanied by him sucking in his lower jaw. Yes, on the stimming alone on the playground as others have described in postings, very familiar. Breaks our hearts to watch all this time stimming instead of playing or learning. We try to distract him as much as possible. We figured it was autism spectrum, however, after 2 extensive evaluations at the state hospital they would not diagnose autism and instead diagnosed Reactive Attachment Disorder (I don't agree) along with low IQ (again I do not agree)and they wanted him to do an MRI so they can rule out possible mini-strokes going on (you have to call his name several times to 'bring him out of it.') So that's where we stand for now. When I viewed a video of flapping motor sterotype girl it looked so familiar. Also, I have no idea if there is a pediatric neurologist anywhere in our state. Grandson does receive O.T. twice weekly for an hour as well as speech but nothing, I mean nothing, not exercise, rest, or staying home from school, nothing decreases the stimming. I am hungry for any feedback and that John Hopkins study is certainly a good thing. I hope this posts, I just looked ad Select profile and didn't know what the heck it is talking about. I sure want to hear from someone, and soon ! BTW, he has a brother 15 months younger who has none of these symptoms so we have a good point of comparison there.

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  6. Great read! I wish you could follow up to this topic

    clomid

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  7. So many years have passed since these posts. Does anybody have an update? Did most of these children learn to control these movements? Or outgrow them? My daughter has this also and it's very heart breaking and hoping to get some hope that it does get better.

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