Diagnosis: Stereotypy

by Janice

OliviaAfter weeks of waiting, today was our appointment for Olivia at Children’s Hospital with a Pediatric Neurologist.

(This fall, I noticed Olivia was experiencing what I thought were facial tics. Our doctor sent us to a Pediatrician, who ordered an EEG, which led to our appointment today with a Pediatric Neurologist. Earlier this week, I posted about her worsening symptoms.)

The Diagnosis

The Pediatric Neurologist believes that Olivia is experiencing stereotypy.

Until yesterday, I had never heard the term stereoytpy. But, a reader actually emailed me yesterday after reading my post about Olivia’s tics, (or what I assumed were tics,) and told me that her daughter had the same symptoms and was diagnosed by a Pediatric Neurologist with stereotypy. She wrote to tell me not to worry, that stereotypy can occur in healthy children.

Here is how Wikipedia defines Stereotypy:

A stereotypy (pronounced /ˈstɛriː.ɵtаɪpi/) is a repetitive or ritualistic movement, posture, or utterance, found in patients with mental retardation, autism spectrum disorders, tardive dyskinesia and stereotypic movement disorder. Stereotypies may be simple movements such as body rocking, or complex, such as self-caressing, crossing and uncrossing of legs, and marching in place.[1] Several causes have been hypothesized for stereotypy, and several treatment options are available.[2]

Stereotypy is sometimes called stimming in autism, under the hypothesis that it self-stimulates one or more senses.[3] Related terms include punding and tweaking to describe repetitive behavior that is a side effect of some drugs.[4]

Distinction from tics:

Like tics, stereotypies are patterned and periodic, and are made worse by fatigue, stress, and anxiety. Unlike tics, stereotypies usually begin before the age of three, involve more of the body, are more rhythmic and less random, and are associated more with engrossment in another activity rather than premonitory urges. Examples of early tics are things like blinking and throat clearing, while arm flapping is a more common stereotypy. Stereotypies do not have the ever-changing, waxing and waning nature of tics, and can remain constant for years. Tics are usually suppressible for brief periods; in contrast, children rarely consciously attempt to control a stereotypy, although they can be distracted from one.[5]

Proposed causes:

There are several possible explanations for stereotypy, and different stereotyped behaviors may have different explanations. A popular explanation is stimming, which hypothesizes that a particular stereotyped behavior has a function related to sensory input. Other explanations include hypotheses that stereotypy discharges tension or expresses frustration, that it communicates a need for attention or reinforcement or sensory stimulation, that it is learned or neuropathological or some combination of the two, or that it is normal behavior with no particular explanation needed.[3]

excerpt from Wikipedia

The doctor assured us that while stereotypy does present in children with other disorders such as autism, it is also common in typically developing children. (Her own daughter experienced stereotypy.)

She said that as Olivia gets older, she may learn to inhibit her stereotypies and do them more when she is alone. She may stop doing them altogether.

Now what?

The neurologist is referring Olivia to a pediatric psychiatrist who specializes in stereotypy, tics and Tourette’s, as well as ADHD, etc.

OliviaI am glad that we will be able to receive some sort of follow up care. Neurology doesn’t treat stereotypy and considers it benign.

I am so grateful that my daughter doesn’t require medication or treatment! But, considering our family history, I do prefer to have her receive some sort of longer term follow up with a specialist. (Olivia’s brother Jackson has ADHD, ODD and Anxiety, and one of Olivia’s cousins is on the Autism Spectrum.)

I just prefer to stay as educated and aware of what my children are experiencing as possible. Even if there isn’t anything I “can do,” knowledge just makes me feel better.

I have been reading tonight about stereotypy, and indeed it does seem to occur often in developmentally healthy children.

Here is an excerpt from an informative article I found and it describes how stereotypies can affect children who do not have mental retardation or pervasive developmental disorders:

“…The stereotypies seen in these children were associated especially with periods of engrossment such as when playing a game or participating in an activity, but also at times of excitement, stress, fatigue, and boredom. They usually lasted in the range of seconds to minutes (but could go on for hours in some cases) and appeared many times per day. In practically all cases, the stereotypies could be suppressed by sensory stimuli or distraction…

Stereotypies usually develop in early life, mostly before 2 years of age, whereas tics begin to occur in children at age 6 7 years. Unlike tics, which rapidly change from one thing to another (blinks, grimaces, twists, shrugs), stereotypies are prolonged episodes of the same iterated movement.

People with a tic disorder often will stop their tics during engrossing activities, but individuals with stereotypies often will start their repetitive movements during such periods. Distraction usually interrupts stereotypies but not tics.

Many of the children in the study had a comorbidity, including ADHD (15%), obsessive-compulsive disorder or obsessive-compulsive behavior (20%), tics (13%), learning disability (4%), or had an early language or motor developmental delay that resolved itself (12%).

The biologic basis for stereotypies remains unclear, although some evidence suggest that there is a dysfunction in the circuitry between the cortex and the striatum, Dr. Singer said (Pediatr. Neurol. 2005;32:109-12).

If a child’s stereotypy doesn’t interfere with his activity, Dr. Singer said that he doesn’t recommend any particular therapy…”

excerpt from BNET Today.com

Relief

I didn’t expect to leave the hospital feeling relieved. Going in, I felt hopeless.

Watching my daughter get lost in repetitive movements, her body clenched and her face contorted, is incredibly upsetting. It interrupts her constantly throughout her day and some episodes go on and on.

OliviaBut knowing that these episodes are not damaging her brain, that they aren’t seizures and I didn’t leave the hospital with a prescription for medication, is such a relief.

Life isn’t perfect. Life isn’t typical. We all have our unique challenges, experiences and blessings.

As difficult as it is to watch my daughter clench and contort her face and her body, even as I hold her or we walk down the street, I am trying to have peace that this is just part of the plan the Lord has for her life.

I need to have faith and let Olivia thrive in the life God has planned for her.

THANK YOU again for all your loving support! Your comments, messages and prayers mean so much to us!!!

UPDATE ON OLIVIA

Olivia is now four years old. She is a happy, energetic, and extremely friendly little girl who keeps us in constant laughter.

Olivia still has her stereotypies. They have not lessened — she still experiences them regularly and is now aware that she has them. There are certain situations and stimuli that always brings on her stereotypic movements, such as driving in a car, waiting in a line up, being in the shower or getting out of the bath/shower, and getting bored. Stress and fatigue do seem to make them worse, but are not as much of a factor as the stimulation around her.

I can “call her out” of a stereotypy by calling her name firmly. She will then “come back” and look at me as if she just came from another place. But, unless I continue to hold her hand and engage her, she will immediately go back into her stereotypic movements.

Olivia will sometimes go for an hour or more and not have any stereotypic movements, but at other times they are far more frequent.

It isn’t easy to watch my daughter struggle with stereotypic movement disorder. It is hard when people stare at her, kids and adults alike, confused by what they are seeing, or ask me if she is special needs.

But, even though I feel a slight panic sometimes when I see my daughter “go away” into a place I don’t understand as she experiences her stereotypies, I constantly thank God. My daughter is alive. She is not experiencing seizures or anything that is hurting her. She is happy. She is here. And I am so very very grateful.

If your child is experiencing stereotypic movements or tics, please don’t despair. Yes, it is hard. I know the pain and panic I felt when I first realized something was going on with Olivia. We want the best for our children. We want to keep them from all suffering.

But we can’t. Life sometimes hurts. And a diagnosis of stereotypy or tics??? Well — it isn’t the end of their world or yours. As Julia’s cousin told Olivia, it is just a part of who she is.

UPDATE #2 on OLIVIA

It has been over four and a half years since I wrote this post. It has been incredible to read the comments and receive emails from other parents and people dealing with Complex Motor Stereotypy.

Learning from one another is such a blessing — thank you so much to each of you who have shared your thoughts and experiences with us.

Olivia is now almost seven and will be starting second grade next week. Her CMS movements are growing more challenging for her and she has started to express frustration with them.

She has a difficult time in class and any time she has to wait or try to stay still and listen to instructions. When her movements take over, she cannot listen or follow what someone is saying.

Olivia is an incredible child, full of energy, enthusiasm, and imagination. She rarely stops moving and seems to be here on this earth to make friends and have fun!

FINAL-crop-liv-2986_WEB

It has been so encouraging to read in the comments below from teenagers and adults who have Complex Motor Stereotypies.

As parents, it is frightening to watch our children “slip away” to a place we have never been and don’t understand.

However, hearing from people who HAVE been there and report that it is a pleasant, refreshing, and safe place makes all the difference in the world.

We want the best for our children — and fortunately it appears that our passionate, energetic, active children who experience stereotypical movements may just have more energy and imagination than they can contain. It seems like their brains have just found another way to release all the extra stimulation that is pent up in their bodies and minds.

Again, thank you so much for your concern and interest in our sweet Olivia. To hear an inspiring take on stereotypies from the view point of a six year old, read this post Susan wrote with her daughter’s advice to Olivia

tics-stereotypy-kids

And don’t miss the comment section here on this post. There is SO much great information and encouragement from readers…


Written by Janice, co-founder of 5 Minutes for Mom.

Don’t miss posts with our our feed and please tweet with us — @5minutesformom. :)



Email Author    |    Website About Janice

Janice is co-founder of 5 Minutes For Mom. She's been working online since 2003 and is thankful her days are full of social media, writing and photography. You can see more of her photos at janicecrozephotography.com.

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{ 97 comments… read them below or add one }

1 laura January 29, 2010 at 4:16 am

Happy for your family! Wahoo!

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2 Eileen January 29, 2010 at 5:17 am

First of all I have to say your little darlin’s award winning BREAK OUT smile there just made me smile… and it’s 4 am and not a happy insomniac right now…
I am sorry I missed your post about Olivia before and your very worries that all mom’s have when we intuitively or otherwise know that something is “amiss” with our kids. My daughter is 10 and had some strange type of “pass out” seizures when she was barely walking…they passed them off as her HOLDING HER BREATH when she was frustrated. I was like…you have GOT to be kidding! She would also have febrile seizures, so I was not going to just be blase’ about this. THey really didnt find anything but we are now dealing with horrible migraines with Morgan. She is smart, funny, seems physically healthy…but just breaks down with head pain often. Nothing is showing up. SO…I know how you feel, hearing there is nothing physically damaging showing up and hoping the doctors are right in saying they “will probably” go away. Some things really ARE simple and kids grow out of it. I also know how you reach when you already have a child with issues. (We have another child that struggles with school and ADD or social anxiety disorder…they really dont know WHAT it is and nothing has helped for 8 years. She works VERY hard and has overcome a lot of the stigma and is very confident now.)

Just wanted you to know there are lots of brilliant, beautiful little angels out there who might have simple or not so simple issues…and their wonderful moms/dads are there to get them through, to protect them… to love them no matter what and do any work at all to help them. I can hear your love for Olivia in your words and know that no matter what your kids have to brave,no matter what triumphs they feel, you will be there by their side.

So scary to go through. Just a couple pointers. I would get video or audio of any kids health issues you may think should be tended to, dont think a second about getting a second opinion. AND you are ALREADY reading all you can get your hands on—be informed. Knowledge is power, and in the age of the communication web, sometimes we find research and studies that doctors dont have TIME to look at.

You will be OK. God will answer yours and our prayers for your little girl…so she will always smile from her heart like your beautiful photo above. God bless your family, always Janice!
eileen

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3 Mom24 January 29, 2010 at 6:28 am

Lots of hugs and compassion. I’m sorry that she has this, I’m sorry that you’re struggling with yet another worry, yet I’m happy that the news wasn’t much, much worse and that she’s over-all healthy.

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4 Christine Holroyd January 29, 2010 at 6:54 am

I feel relieved that you feel relieved KWIM? It is still a hurdle I’m sure, but you’re right about being educated on the subject. Knowledge and finally having a diagnosis can help to relieve so much anxiety.

Hugs to you from afar.

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5 Debbie January 29, 2010 at 7:11 am

Thankful the news was not worse. Praying for you all and the Dr.’s as you move forward with this diagnosis and deal with the condition problems she is facing in the future. Praying it will lessen and disappear in the coming months or years. Praying for peace for you all.

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6 Kelly Tirman January 29, 2010 at 7:27 am

wow – I had never heard of this before. Thanks for sharing.

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7 TheAngelForever January 29, 2010 at 7:49 am

So glad that you have an answer and know that Oliva is not in danger from what is going on. More hugs coming your way from a parent that know even after relief from a neurologist your brain still races a mile a minute.

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8 Deb - Mom of 3 Girls January 29, 2010 at 8:34 am

Oh I’m so glad that you have a diagnosis and that it’s something treatable and ‘benign’! It’s got to feel good just to have answers and be working toward a plan to help Olivia overcome this. Hugs…

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9 Susie's Homemade January 29, 2010 at 8:53 am

I am so glad that she has something that can be worked out in therapy! That’s great news!

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10 A Cowboy's Wife January 29, 2010 at 9:33 am

At least knowing what it is helps. It’s not knowing I think that makes it harder.

((Hugs)) to you all. Hoping they can do more to relieve them…

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11 Christine Jensen January 29, 2010 at 10:14 am

I am so glad to hear that you have gotten a diagnosis that gives you relief!

I too had the scare of my little one (My 3 year old) needing to see a neurologist. He had a seizure this summer and has since has small odd twitching at night. The neurologist think he has a benign form of epilepsy that only occurs when waking from sleep or falling asleep. It is scary, but having more information always makes you feel better than when you don’t know and you are imagining all sorts of scary diseases!

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12 Carissa January 29, 2010 at 10:41 am

I am so glad to hear that there is a diagnosis and that you are already on top of everything! I agree that it is hard to watch our children do things that we know do not normally happen. Good luck with all of the future treatment and please keep us posted! I will keep praying for your family!

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13 Jenean January 29, 2010 at 10:42 am

Crazy! I think my son has that. We’ve never taken him to a specialist, though, because I didn’t think his symptoms were severe enough and they didn’t accompany some other type of behavior. I can remember him doing strange things since he was about 3 or 4. He did eye blinking, throat clearing, scrunching up his nose, and now he kind of flaps one of his arms. Not in a wide arc, but kind of against his body. I think we notice it more because we’re around him.

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14 Marj McClendon January 29, 2010 at 10:56 am

I am so glad to hear Olivia has no seizures or anything that requires medication. Thank you Lord. Big Hugs to you and Olivia.

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15 Nancy T. January 29, 2010 at 11:17 am

Oh what a relief to get a diagnosis! So glad to hear it’s something that can be managed.

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16 Jessica Harwood January 29, 2010 at 11:22 am

I’m so glad that you have a diagnosis and that you feel like knowledge helps you. I’m also glad to know that little Olivia won’t need to be on medications or anything like that. I wish your family the best as you continue to learn about this & work through it together.

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17 Renee January 29, 2010 at 12:30 pm

A dear friend of mine have had the same experience with her son a couple years ago. Same symptoms and borderline ADD and autism spectrum. At age 2 is started is tics and repetitive MVTs and parents were concern and got him check.

His vocabulary was behind and he was not obeying simple command. After 3 years of speech therapy, 3 days of week with a special behavioral therapist and a special diet (no sugar, no white bread, no gluten all pro et pre biotic and all organic diet) he shown lots of improvement and is now attending public school.

He did not receive any vaccination after 2 years old and his parents decided not to pursue any vaccination in the future (after recherche they believed that their son little body is not tolerating them !!!)

So that is their story, and what did work for them might or might not work for your family… each case ans child is different.

May the Lord grant you some wisdom concerning the health and training of your child.

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18 Blessing January 29, 2010 at 12:32 pm

I am so happy there is no damaging effect to the diagnosis. I read up some things online and it doesnt seem like it would affect her that much.
Here are some few tips shared by the Mayo Clinic. Hopefully it helps, the more information you have, the better prepared you are to handle it.

http://www.mayoclinic.org/medical-edge-newspaper-2008/jan-06.html

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19 Lisa L January 29, 2010 at 12:32 pm

I’ve been praying and praying for Olivia Janice. So glad to hear this good news.

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20 Katie January 29, 2010 at 12:40 pm

I’m so happy to hear about Olivia’s diagnosis. If I were there, I think I’d dance around and hug you lots. But, since I’m not I’m just going to have to dance around by myself and send you lots of virtual hugs.

Being educated is a very good thing. It was once said to me that as a mom, I am my child’s greatest advocate. You are too and while it’s a lot of responsibility, it’s the best job in the world.

*hugshugshugs*

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21 Lucretia M Pruitt January 29, 2010 at 12:41 pm

So happy that you have more information and that you got to leave the doctor’s relieved!

There is nothing that makes us feel more helpless than watching things happen to our children and not knowing what, if anything, we should do.

((hug))

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22 suburbangranola January 29, 2010 at 12:53 pm

I also have a almost 8 year old child that has a tic. She throws her head back. She has been doing it off and on for about 2 years. She has asthma and eczema but other than that she is very healthy. Our pediatrician told us that it is nothing to worry about. He did send us to a neurologist (to ease my mind I think) and he concurred.

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23 Pamela January 29, 2010 at 1:15 pm

As a parent, I know how important it is to have a diagnosis. What a sweet little girl you have here. So full of life!

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24 Christi January 29, 2010 at 2:12 pm

So thankful that this is something that can be dealt with! Praising the Lord with you!

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25 Stacie January 29, 2010 at 2:22 pm

I am so happy that it is nothing too serious!
((hugs))

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26 The Mom Jen January 29, 2010 at 2:23 pm

I’m so glad it’s this and nothing worse. My husband always says “we all have something” and it’s the way we deal with it is what matters. You are strong, you are educating yourself and you are a amazing mother full of love, keep it all up and we’re hear whenever you need to talk!

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27 Jon Gray January 29, 2010 at 3:28 pm

Praying for all the best for Olivia and you guys. Glad to read that the prognosis is good. Hang in there!

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28 Mindy January 29, 2010 at 4:03 pm

Oh Janice, isn’t it a relief to at least KNOW something at last? Even if the news is devastating ( your news isn’t thank the Lord! ) it is simply better to know…always.

You know, you didn’t have to share this with us at all…but thank you for doing so. There might be a mama who reads your story and is comforted/educated/inspired to act etc…knowledge is power and support is strength.

You have my complete support. Always!

I am glad for the Olivia update!

mindy

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29 Tarasview January 29, 2010 at 4:19 pm

Janice- I am so happy for you that it is not something too serious and scary. But I know it is still so hard to see your child going through something “atypical” or “abnormal”… no matter how “benign” it may be. I’ll be praying with you that Olivia is one of those kids where it just goes away. Soon.

Hugs.

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30 Rachel January 29, 2010 at 5:21 pm

What wonderful news! I’m so glad that it is benign and much less serious than you had feared. That’s so excellent!

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31 Jennifer, Snapshot January 29, 2010 at 6:06 pm

It is great to have support, and I know that you are relieved to have a diagnosis so that you can rest in that.

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32 Mary January 29, 2010 at 9:43 pm

Praise God for a diagnosis! I know that he has a good plan for Olivia.

I bet you were so comforted to hear the word “benign”. It doesn’t make watching her contortions more fun but hopefully the road ahead will not be too hard.

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33 Muthering Heights January 29, 2010 at 10:51 pm

I’m so sorry that she has this, but I’m glad that now you can move on with a course of treatment!!!

Hugs to you!

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34 Bailey's Leaf January 29, 2010 at 11:13 pm

So happy for you that Olivia is okay! Always good to run for the extra advice, particularly in light of family history. Hoping that as she grows older, she will be able to tweak the movements a bit herself so they are less interrupting to her life.

Praise that she is healthy as we had all prayed!

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35 Debbie January 30, 2010 at 4:21 am

Janice – thanks for sharing this information. I had not heard of stereotypy, either, and appreciate the detailed information you provided. So glad you are relieved – she’s such a sweet little thing.

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36 Caren January 30, 2010 at 5:56 am

Glad to hear that she is ok. I have trichotillomania (hair pulling) which gets worse with stress. I have had several friends who have had good luck with brain types of disorders by altering their diet and using supplements. Getting rid of dairy and wheat, eating more raw vegetables and fruit, more proteins like quinoa, spirulina and peas, and taking a probiotic has helped many children. Some also recommend ambertose. God bless you and your family, and I hope her episodes stop soon.

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37 Sydney February 22, 2013 at 8:02 pm

Caren-I also have trichotillomania. Self diagnosed at first-but now in therapy for the past 4 weeks. Learning biofeedback which is really cool-but i would still rather pull my hair :( I was so relieved to find info about this online. Interested how you are treating yours? Also any homeopathic suggestions for us? God Bless to you also!

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38 MommyNamedApril January 30, 2010 at 7:55 am

I’ve been thinking about you and your family – I’m so glad you got a benign diagnosis… what a fantastic word to hear from the doctor! I know you’ll all come through this just fine :-)

((hugs))

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39 Shannon January 30, 2010 at 8:13 am

as a mom to another mom, I can imagine it is frustrating, but you are doing an amazing job just being a mom. You are doiing an amazing job just realizing that she needed some additional help.

I am glad that you have a piece of “closure” so to say that you know whats going on!

Hugs to you and your fmily!

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40 Deanne January 30, 2010 at 8:33 am

I love this comment you made……
“I need to have faith and let Olivia thrive in the life God has planned for her.”……that is beautiful.
((hugs))

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41 Stacey Kannenberg January 30, 2010 at 8:51 am

I went from Kindergarten to College with a girl who was a “rocker”. When she was stressed she rocked back and forth without being in a rocking chair. Her face would get flushed but she seemed alert to everything around her. It calmed her almost like a type of mediation. After she would be refreshed, relaxed and very at peace! It wasn’t until we were in college together that she shared that her rocking was a type of illness. None of her friends never thought much about it nor ever really commented on it, other than to say we would make a great mother! Some of us would rock slightly when she was rocking to keep up with her conversation, it was kinda “catchy”. She has a masters in education and today is a successful mom business owner who still ROCKS!

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42 Wendy K January 30, 2010 at 9:18 am

Thinking of you and your family and wihsing you the best!

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43 fidget January 30, 2010 at 9:50 am

im glad to hear it’s not something that requires medication

My daughter stims, she is on the spectrum. She is high functioning, fabulous and successful in her endeavors.

Since you have a family history, please make sure your doctor is familiar with the differences in autism when it comes to girls. Many of the diagnostic tests we do are geared towards DXing boys and “classic” autism. According to those tests she’s not even on the spectrum but when grouping her various issues, it’s clearly the best diagnosis for her.

We had to FIGHT to get her DXd, some docs still refuse to acknowledge that autism happens in girls. Girls often WANT to be social and some can even socialize successfully to a certain extent and still are spectrum.

Since Mira has been in the autism program at school she has grown by leaps and bounds.

feel free to email me if you have any questions. Mira has been DXd for 4 years now. For me, her diagnosis was a relief, I finally understood what was going on and we could roll up our sleeves and get to work on making her life better

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44 shelly January 30, 2010 at 10:33 am

SO happy to hear that they have figured out what it is! It’s so worrisome to have an issue and not know what to do or how to help. I will keep praying for you and for little Olivia.

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45 oh amanda January 30, 2010 at 1:02 pm

Oh, I just got chills reading your post. I’m glad you got a diagnosis, but know that I’m praying for her!!

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46 Shop with Me Mama (Kim) January 30, 2010 at 2:24 pm

Glad to hear you finally got some answers. Yeah for no treatment or medication. Hugs and continued prayers to you and your daughter :)

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47 Sarah January 30, 2010 at 3:39 pm

I’m so happy to know that she’s healthy, and she is fortunate to have a caring and supportive family who will help her cope and thrive despite any challenges she may face! I’ll be thinking of you both.

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48 Angie January 30, 2010 at 4:16 pm

I’m glad it’s nothing serious! I’ll keep you all in my prayers!

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49 Farrah January 30, 2010 at 5:03 pm

That’s good to hear it’s not too serious. I know what it’s like to see your child do something off and worry while they’re pinpointing what could be wrong. My son was recently diagnosed with tics this past fall. He’ll be 9 next month and what started out as constant blinking which he still does it has now progressed to neck jerks. We’ve been trying to find the right med to help suppress it but have yet to discover one. They say it may eventually get worse but I’m trying to keep the faith.

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50 Naomi January 30, 2010 at 6:02 pm

So happy to hear the diagnosis is not a life-threatening condition and that she may very well outgrow it.

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51 JamericanSpice January 30, 2010 at 7:54 pm

It is hard to watch our kids hurt or be uncomfortable ot just now know what’s wrong. I’m so glad you have a diagnosis and can now focus on research and follow up care for your baby.

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52 Kate January 31, 2010 at 12:04 am

Sounds like good news? It must be somewhat comforting to have an answer – and one that doesn’t involve neurological intervention. I hope that you continue to find answers.

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53 Rachel - Busy Mommy Media January 31, 2010 at 2:25 am

As hard as that must be, I’m glad you at least got some answers. We went through nearly a year of testing with my 3 year old before we got a diagnosis and I know how scary the waiting can be.

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54 Debra January 31, 2010 at 2:25 am

Thanks for keeping us updated with the news. I’m sure it feels so much better having the knowledge you do now.

HUGS!

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55 Mikki January 31, 2010 at 7:13 pm

Janice~
I remember the day that I was told that my oldest daughter may have Autism. I can honestly say that I didn’t remember driving home or calling my husband in tears asking him to come home, but I did all those.
I remember sitting on the floor in my living room in the fetal position cussing out God for messing with my life again.. but at the end of that night, I found myself naked before God.. not literally, but spiritual.. I was stripped FINALLY of my need to control everything and gave my life and my family’s life to Christ.
I know you have this same faith, and it will be what carries you through the days ahead.
PTL for an answer right.. Now you know what’s causing these tics and can go from there..
One thing that God CONTINUES to whisper in my ear on those days when I cry out ‘why’.. is this.. ” Mikki, I created her this way.. for MY purpose.. not yours. Your job is to love her the way I do.”
May God continue to guide you, hold you, strengthen you and most of all.. shape you into a great Mommy!!
My oldest is no longer considered autistic. She was so young with they tried diagnosing her anyways.. but she is AWESOME.. just like your little Olivia!!
Looking forward to seeing God’s amazing work in her life!!
Can’t wait to meet you next week!!

Blessings.. and sorry for rambling on.. LOL

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56 Stephanie February 2, 2010 at 5:47 pm

So happy to hear that you have a diagnosis and that your little Olivia won’t require medication. Just sent a prayer up for her – that the tics will disappear and she’ll be in the pink of health…today and always.

P.S. Beautiful pictures! She is precious.

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57 Lorie Shewbridge February 4, 2010 at 9:34 am

Please know that my heart goes out to you and Olivia, Janice. You are doing the best thing that you can do: educating yourself and loving your daughter unconditionally.

I have found some extrememly helpful and unbiased info on health matters whenever I’ve needed some by going to the NIH. I hope this is helpful:
http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v:project=medlineplus&query=stereotypy

God bless your whole family and know that you are all in my prayers.

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58 Julie May 11, 2010 at 10:41 pm

Thank you for sharing your story. My daughter’s name is Harmony Faith, and she just turned 4 in Feb. We have been going to doctors in our area to try and find out why she flaps her arms and her face contorts. She also holds her breath. All this happens when she gets excited, and it all started when she was 10 months old. I have been looking online for answers, and I saw some u-tube videos of children with this. I also read your story on here. We have an appt. with another neurologist next week, and I am bringing all the info I found on this. I know in my heart she has this. It fits her perfectly. I am really struggling to admit my beautiful, bright, loving daughter has this because there is no cure. She is advanced in all areas with her milestones, and is very social. I am praying that God heals your daughter, and I am praying that He heals ours as well. Thank you again for sharing your story because your strength is giving me hope.

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59 Amanda May 17, 2010 at 8:49 pm

Hi there-

My daughter was diagnosed with complex motor stereotypies a few years back and at first, I was terrified. The lack of information outside of the autistic population was sparse, and after finally piecing what I could together I posted my daughter’s video on YouTube. After receiving so many emails from parents, I was convinced that I should bring together what info I could, so I started a blog at http://www.motorstereotypy.com.

I still try to post new info as I get it, and recently Dr. Singer finished his website at http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pedsneuro/conditions/motor-stereotypies/. It has tons of info on this condition, and is very reassuring about the benign nature of the movement. Such a comfort to finally get some information out there, so thanks for sharing your story!!

Amanda

Thankfully,

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60 Christina Lopez February 26, 2012 at 8:36 pm

Wow! Years ago back in 2009 when I tried to google this diagnosis I couldn’t find much information. My son symptoms started at 22 mo old, was diagnosed w/ stereotypies w/ possible tourettes but in the beginning it was very scary because of the unknown. Our neurologist had him tested many times for epilepsy in the beginning (for safety and acute concerns) and also w/ a neuropsych to check his development and any other concerns for Autism. I only ended up googling again because I am filling out insurance paperwork and I wasn’t sure what they (insurance) considered this a behavioral diagnosis or neurological.

Thanks for posting your story and it’s comforting to find others out there. My son just turned 5 and is doing great, neuropsych eval came out very positive and his symptoms have decreased significantly. I am only to return if his symptoms worsen or it becomes a social concern. My understanding too, was that because he could be distracted during his symptoms this was why he it was more stereotypies than tourettes. My son’s symptoms was to abruptly sit up, turn his head, point his index finger up on one hand and the other arm would come in as well as a dreamy odd look on his face w/ an odd grin, over and over starting at first lasting seconds to eventually increased to many many minutes and repeating over a period of hours of these episodes. Even in the middle of the night. I also found fatigue increased his symptoms. What a crazy time life can be during the time your looking for a diagnosis.
I was told that 1/3 rule will get worse, get better or go away by puberty/adolescents. No medication is required for my son and he continues to progress academically/socially/and behaviorally.
During the diagnosis process I also noted another symptom, when the neurologist observed this she wanted to diagnosis him w/ motor tourettes since again no medication is required, she just wanted more testing to confirm the “new” symptoms was not epilepsy I declined the very expensive test and am confident he does not have epilepsy.
Many prayers and positive thoughts to every family that is going through this diagnosis and letting others know that things can be great at least they are here at my home.

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61 tabatha May 19, 2012 at 1:49 am

Thankyou so much for posting this blog.
My 3 year old son Brody has this. I was so terrified when I heard the diagnosis back in October. I have spent months coming across information online that hasn’t eased my nerves one bit. Reading you blog has brought me great comfort. Thankyou and God bless.

-Tabatha

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62 Katherine Trask July 8, 2012 at 11:01 pm

Thank you so much for this article. It was like you were writing about my own child. I have a 6 year old daughter with stereotypy who has been experiencing these odd movements and facial grimacing since 18 months old. We just got the diagnosis of stereotypy last month!! It has been doctor appt after doctor appt, a mis-diagnosis of tourette’s, tests and more tests….I am so relieved to know that my baby can be a normally developing child and have stereotypy. She is a smart girl….very creative and loves to sing. She is not at all behavioral and does not have ADHD. Her Stereotypy causes her to have a lot of “attention issues” at school because she is losing focus to do her stereotypy movements but the teachers know to just interupt her and redirect her now. Thank you for your story on Olivia…..God Bless our babies….

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63 Tammy July 21, 2012 at 3:10 pm

My 8 year old daughter has complex motor stereotype. She also has a number of other health issues. We went to an amusement park yesterday and found a little boy with the same thing. It was interesting to finally meet another little one with similar issues. I get so concerned with how slimy daughter will be when she gets older. I don’t want this to affect her too much. It’s nice to read the other stories and meet other parents going through the same things. Feel free to email me anytime about this.

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64 Anonymous August 1, 2012 at 4:53 am

I am a 23 year old university student who has had complex motor stereotypy since I was one or two years old. I mainly engaged in hand flapping, jumping, facial grimacing and toe wriggling whenever I was excited, playing or imagining things. I didn’t even know what it was called until this year (thanks to a relative who sent me the link) because it’s not something I think about a whole lot and I never thought of it as a disorder before-more just a quirk that I had. My parents never made a big deal over it, and neither did other children at school.I definitely spaced out at school occasionally but a teacher simply saying my name brought me back to earth. My grandparents would affectionately suggest that I was trying to “fly away”.

However, I do cringe at watching old home videos of me as a child. I would jump around and flap like crazy. As I got older, I learned to do it only when I was alone. It really is just a “happy place”…it helps me to imagine things as if I am actually there. I do not think of it as a disorder, but more like a gift. I have a great imagination. Also, it does not affect me socially, intellectually or in any other way. I have great friends, a boyfriend, and amazing grades and advanced degrees in university.

I hope this gives some comfort to those googling “motor stereotypy”, wondering how their child will cope.

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65 Julia Tweedie November 11, 2014 at 11:38 pm

Thank you for your post! I was just given a diagnosis for my son about a month ago. I have been trying to figure this out for about four years. He had 2 EEGs and an MRI and no one seemed to know what it was. We moved and are going to a new pediatrician. She knew immediately what it was when I described it to her. I also had videoed him on my cell phone and showed it to her. My son says it is like he is daydreaming. He does arm flapping, pacing back and forth, bouncing and wiggling his fingers in front of his face. I used to work with autistic adolescents, so this always scared me. No one else seemed to be very concerned about it. It was so nice to read your comment. I think that my son will hopefully be just fine. He is a very happy and sweet boy. I was just so worried he was killing his brain cells when he would “zone out”. I’m glad it is more of a happy place for him. Thank you for sharing!!

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66 Michele August 20, 2012 at 2:41 pm

Wow. Reading all about Olivia and everyones comments (especially those who have been dealing with sterotypy for so long has been soooo helpful. I am convinced this is what is going on with my daughter. Ever since she was 2 she will contourt her face, flex her arm out at the elbow and stiffen her hand bringing it in and out to her chest. ONLY when she is excited, playing with her dolls, and nervous. She is a very happy, high functioning child. Neuro has done every blood test under the sun (costing us lots of $$) 2 EEGs, MRI and even sending us to genetics (which all their labs came back normal too). I can “call her on it” when she does it, and she can stop. she will go right back to it if she is excited, unless, like you said, I distract her or hold her hand. She just started PreK 4 this week. I was so nervous about how her peers will respond. Many times, when we have been in public, talk to her as if she is special needs. we are blessed she is not having seizures/brain tumor and is normal functioning. I was worried as she gets older (and unfortunately once kids are in about 2nd grade) they start to make fun of kids that are not like everyone else. She also wears glasses and has a large hypopigmented area on her chest/arm. She is very sensitive, and I just don’t want her to get her feelings hurt. Please let me know if this has happend to any of your children (or those of you who are now adults with sterotypy) and what advice would you give me. I also read on Habit Reversal Training. Has anyone tried that ? Or any other therapies ? Dance , Music ???????

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67 Karenina September 9, 2012 at 6:17 pm

Thank you so much for your post. I stumbled upon it trying to research stereotypy, as my 11 year old daughter has just been diagnosed with the same, after thinking for years that she had Tourette’s. She has other diagnosed issues, but this one is the hardest to deal with, as you mentioned. It’s dreadful watching people watch her. I’m still wrapping my head around all of this (still trying to figure out how to pronounce it!), but I am very grateful that I don’t feel so alone after reading your post.

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68 Lukrecja September 14, 2012 at 4:08 pm

See: Childhood Habit Behaviors and Stereotypic Movement Disorder
Author: Cynthia R Ellis, MD; Chief Editor: Caroly Pataki, MD
http://emedicine.medscape.com/article/914071-overview

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69 Lukrecja September 14, 2012 at 4:16 pm

There is a WIDE range of childhood habit behaviors, simple and complex. teh same as there is a wide range of adults of what is ‘normal’. 20-50% of NORMAL children exhibit some form of this or another habitual behavior for one reason or another. These are NORMAL. One survey found that 91 % of ADULTS pick their nose ;) Maybe you have not considered that the child is functioning on some higher -normally not avialable- energy plane, that child might be spiritual. I only know of one “happy place”- it is called HEAVEN. May God Bless you with the knowledge and understanding or ceach and single one of your child individual needs, and help you find solutins to how to help them ‘exist’ in the ‘regular/normal’ plane of three dimensions plus time ;) May God protect you and your children form spiritual attacks and bless them in HIS mercy with a good and happy life, here and now, in this world, before returning HOME to HIM.

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70 Jamie October 5, 2012 at 1:42 am

Janice,

Thanks for your info. I have an average, 4 year old daughter who I took to a specialist a year ago who told us more than likely she has Stereotypy. Since around one year of age we called her doing the Miss America wave or changing of the light bulb hand. Now at 3 and 4 it turned into jumping, spinning and hand flapping. There seems to be no rhyme or reason why it starts. Sometimes its a few seconds and then sometimes it last a lot longer. I can say before bed it seems to be the worse. I purchased the book The Out of Sync Child and the book following it to get some times to help her “release” the energy. I’m curious to see if it helps her. She also had speech delays. It “babbled” lots and it wasn’t till she was almost 3 before we could understand her. At the age of 3, her language exploded and now speaks intelligently however still has some speech articulation needs which she is now getting practice with. i.e. mermaid is mertaid. And instead of using the word behind in the sentence she might say the bear is hind the tree. She’s a “normal” (of course who of us is really normal”), active healthy child. I praise God on high for the gift of this child. Shes amazing. I would be interested to hear if theres any diet changes people have made or possible vitamin deficiency these children may need to supplement with.

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71 Amy December 27, 2012 at 11:07 pm

My daughter also has this (she is almost 5). She does not have ADHD, autism, OCD, etc. However I have recently been dealing with extreme frustration issues with her (that usually end in her hitting her almost 3 yr old brother). I was wondering how her stereotypy affects her behavioral and cognitive learning. Is she prone to frustration easier? Does she have a harder time trying to express herself (BC of her stereotypy)? Should I be easier on her? Or, is this what typical 4 almost 5 yr olds do??? This is where I always fall short or feel the most guilt and helplessness…am I doing enough to help her understand herself knowing she has sensory issues and may need greater help. For me, since she was my 1st child, I had nothing to compare her development to. Her brother has really shown me the differences.

Anyone have any theories as to what triggered this in their child?

Thx for reading.

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72 Geeky March 17, 2014 at 12:19 am

I have this, basically for me when ever my brothers would bug me right after an episode I would lash out on them.

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73 Celeste November 20, 2014 at 12:10 am

I have a similar situation, a 5 year old with stereotypy and a 2 year old who does not have it. I feel the same about not really knowing what to expect with my first child and now with his younger sister I really see the differences between them. Sometimes with my son he seems to get frustrated a lot more than his sister and he needs “do-overs” a lot when that happens. I don’t know whether I should discipline him the same, or if I should be more patient and lenient with him? I don’t have any advice for you, but I feel a little better knowing there is someone out there with a similar situation and similar questions and frustrations about mothering a child with stereotypy. I hope it is some comfort to you as well to known that I am right there with you with the same questions on this journey. I think to some extent the best relief is knowing that we are not alone in this, even though it sure seems that was sometimes. :)

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74 Karen December 29, 2012 at 1:16 am

Thank you for sharing Olivia’s story. My son, who is a little over 2, also was diagnosed with Sterotypy about 6 months ago. He only does them in periods of fatigue or boredom. His actions have changed over the last few months, from complex and rhythmic hand and arm movements to a reduced amount of physical movements but he now does a tune-less hum, almost as if he is just expelling air that happens to be passing his vocal cords. I must admit that it is a bit concerning in the way it sounds, but he almost always is smiling with a far off look in his eyes while he does it. I just consider it a part of his quirkiness.
@Amy, my son also shows a high level of frustration. I don’t know if it is just his temperament to be hot-headed or if it has a relationship with the stereotypy he exhibits.

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75 Aleksandra January 3, 2013 at 6:09 am

I have 3,5 year old son who has stereotypy disorder more than 2 years now. He has facial grimicing and hands flapping, and almoust always when hi is excite or bord. Neurologist said that we should not do anything, and to stimulate bihavour that he likes (playing with puzzles, cars) but also to stimulate some activities that he avoid (painting, modeling…engage hands and brain)… He is developing, and until we start to do painting I can see some positive changes. Also, it is very improtant to talk with him like he is adult…I gave him some natural vitamines and it is also very important to somehow “clean” him…He was suffernig from bronchitis and we gave him a lot of steroids, and I am sure that this treatmens have some effect in developing his sterotypy…Just love them, and support them and I am sure that all of them will be quite special and important persons in future…

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76 Chrissy March 7, 2013 at 5:53 pm

My daughter has done “excited arms” since she was 6 months. She’s 3 now almost 4 and they are getting more frequent. I got concerned as did the preschool last week. Today the neurologist said she has stereotypies. Reading your story gave me comfort. Last night we went out to eat and She did her arms over and over in the middle of the pizza place. I noticed one man staring at her but then he eventually smiled at her. But in my mind I felt he wondered “what was wrong with her”. Why does she keep doing that? And she doesn’t even know she’s doing it. Seeing her do this breaks my heart!! I can’t fix this! We are so blessed its nothing serious. Glad to have a name to it. And God will see us through!

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77 Sara March 8, 2013 at 1:09 am

wow. I was just looking into my 2 year old ‘twitch’ as my husband calls it, because that’s what my parents call mine and before me, my uncle. We still have them, with less frequency but always when excited/happy. Knowing now that it can be diagnosed is so odd to me, especially since I never thouht about it until my daighter showed signs too!

i learned at a young age to suppress the ‘twitch’ and would only let it go in the comfort of home, usually when no one was looking, but even if they were I wouldn’t care. I also enjoyed the action, it never occurred to me when I was doing it that other people were watching or not feeling what I was. even knowing this now at 35, it still doesn’t dawn on me as the ‘twitch’ is happening. only after. I now have my 2 year old doing similar movements and realize that mine must have been like that as well, and yet my parents say they dont remember it being as fequent, however I do. So I will attribute them not remembering as they were raising me my twin and an older sibling while both working.

anyway, hope this helps, I always felt special because of it, my family while may have coined the ‘twitch’ name, never commented meanly or made me uncomfortable, it was my thing and while they sometimes teased, it was always in good fun, and usually around/on christmas!!! or my birthday!!! when i really really couldnt contain myself!! And just for the recored my friends and classmates never said a word, and I wonder if they ever even noticed.

So I say let your child be, they’ll figure it out, just so long as you support and love them.

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78 Sara March 8, 2013 at 1:15 am

wow. I was just looking into my 2 year old ‘twitch’ as my husband calls it, because that’s what my parents call mine and before me, my uncle. We still have them, with less frequency but always when excited/happy. Knowing now that it can be diagnosed is so odd to me, especially since I never thouht about it until my daighter showed signs too!

i learned at a young age to suppress the ‘twitch’ and would only let it go in the comfort of home, usually when no one was looking, but even if they were I wouldn’t care. I also enjoyed the action, it never occurred to me when I was doing it that other people were watching or not feeling what I was. even knowing this now at 35, it still doesn’t dawn on me as the ‘twitch’ is happening. only after. I now have my 2 year old doing similar movements and realize that mine must have been like that as well, and yet my parents say they dont remember it being as fequent, however I do. So I will attribute them not remembering as they were raising me my twin and an older sibling while both working.

anyway, hope this helps, I always felt special because of it, my family while may have coined the ‘twitch’ name, never commented meanly or made me uncomfortable, it was my thing and while they sometimes teased, it was always in good fun, and usually around/on christmas!!! and my birthday!!! when i really really couldnt contain myself!! And just for the recored my friends and classmates never said a word, and I wonder if they ever even noticed. Sometimes things left alone are best.

So I say let your child be, they’ll figure it out, just so long as you support and love them.

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79 Chrissy March 8, 2013 at 11:11 am

Her friends don’t notice at all. I’m very grateful for that. I have decided to let her be herself. She’s perfect in my eyes and Gods. I’m not going to correct her, for this is who she is and it’s not affecting her learning. It makes her more special to me. I would love to find more resources and other mothers to guide me.

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80 Serrina June 27, 2013 at 12:20 pm

My son was diagnosed yesterday as having Complex Motor Stereotypy so I understand exactly what you have been going through. It is extremely hard and scary to watch your child do these things and you not have any idea what is going on. My son is 3 1/2 and has been having these tensing movements of his entire body since he was around 2 months old but they have gotten more intense the older he has gotten so I decided to have him sent to a neurologist to find out what was going on. I was very nervous going into the doctors office yesterday because being the worrier I am I was expecting the worse. I am so thankful that it wasn’t anything worse than what it was. I have some of the same worry’s as far as children and adults staring at him or asking him why he is doing it but I know we will find ways to deal with it. He is too young right now to understand what he is doing so it makes it hard to try to figure out ways to help control it. Im hoping as he gets older he will either outgrow this or develop his own way of coping with it. I thank God everyday that he is healthy and happy. Our family had been blessed and I know we will get over this little bump. I wish you and your family the best and thank you for writing about this because it has made me feel better knowing that my son can move forward with this :)

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81 mommyteach July 7, 2013 at 7:57 am

Hi. My daughter, now entering first grade, has complex motor stereotypies also. She is healthy and normal developing. Some weaknesses in motor skills, but no big deal! A local neurologist diagnosed it, but I chose to take her to see Dr. Harvey Singer at Johns Hopkins in MD. This is where the studies and research are currently being done. And like all of you, I wanted all the info I could get. He was very nice and informative.

Check out his articles. They are helpful. As a special education teacher, all I can say and remind myself is thank GOD! They are A LOT worse diagnoses out there. I do understand the stress with this, as you see other children staring wondering what the child is doing :) My daughter just tells everyone she is excited! She is full of life and enjoys it to the fullest. It does not stop her from doing anything.

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82 chris December 17, 2013 at 10:03 am

I must thank everyone for their comments which have helped my wife and I and specifically this courageous, informative and enlightening post. My wife and I have been very concerned since our daughter was diagnosed with having Stereotypes. It is very challenging to see our 2 1/2 year old angel engage in these movements without trying to do something about it. This post was a blessing to our family in dealing with this situation. We are thankful to all who shared.

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83 Shelly February 5, 2014 at 8:29 pm

My daughter is 5 and has been seen by her pediatrician and occupational therapist, neither of whom had a name for what she does. Then I searched youtube and realized she has CMS. Hers is pretty intense and big… big flapping with grand motions and jumps, and goes on for hours and hours. People in large crowds (a-hole grown ups, not kids) make fun of her. She’s perfectly normal in every other way though. What type of specialist can make a diagnosis? I called Dr. Singer’s office but they said they would not see her based on my hunch, and that she had to have a proper diagnosis of CMS first. Any ideas are welcome! Thanks!

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84 Mick Mauricio March 1, 2014 at 1:08 am

I am a 28 year old attorney and I have been dealing with complex motor stereotypy my entire life. When I was young, they attached me to an EEG machine because of my arm-flapping and facial clenching, and found nothing wrong with me. I’m not sure they had diagnosed stereotypies like this at that time, and out of curiosity I just googled what I deal with to see if there was a name for such a thing. Turns out there is!

Over time, I subconsciously learned to control it, after getting made fun of a little as a kid, and now only my oldest friends are even aware that I ever had such a thing. None of them know that I still do, not even my wife. Its that subconscious. But it doesn’t impact my life, its as effortless as breathing to me, it only comes out when I’m alone at home, in an elevator, anywhere I’m isolated. Its just a release, when I’m lost in my imagination and extremely excited about some thought or daydream that I’m having. I can’t say its the same for everyone, but to me I think its a gift, I have a powerful imagination, I’ve always been at the top of my class, I can create worlds in my head and daydream about them intensely. If you trained a secret camera on me, you’d be pretty surprised, and there are probably some elevator cameras with some footage of some strange “dancing” on my part, but oh well. I’m healthy.

Thanks for posting this.

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85 Erin August 21, 2014 at 1:39 pm

Mick thank you for sharing. My son is 7 and does the same thing and calls it “his imagination” he is very creative and does this when he’s really into something he’s doing. Like you I didn’t know it had an actual name. Thank you for sharing your story.

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86 Janice August 26, 2014 at 6:31 pm

Thank you so much Mick for sharing your experiences!

As a parent, the hardest part is not knowing what my daughter is experiencing. It almost looks painful and she seems to go to “another place.”

Our specialist assured us that she is not in pain and that it is a release, like you describe. But it is so nice to hear it from an adult who has been there!

My Olivia is SO fabulous – a great imagination and so much fun. My main concern is just that it is very hard for her to follow instructions at school, cheerleading, etc. – any time she has to stand or sit still. But hopefully we will be able to help her find ways to work around it. :)

THANK YOU!

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87 MJ September 16, 2014 at 1:31 pm

I’m just learning that there is a term for this (complex motor stereotypy) and have enjoyed this thread and particularly your post. My son has been a “hand-flapper” from about 8 months old, usually when he was excited/stimulated/thinking. He was an extremely bright and well-behaved child but his Kindergarten teacher was very concerned about the hand-flapping. We had him evaluated for sensory integration issues but decided not to sign him up for therapy. Instead we signed him up for T-ball. And we called the behavior “marvelling”, recognizing it but not making a big deal out of it. As he grew, he continued to marvel, but increasingly in private. I think sports helped: he was a very good high school athlete in football, baseball, and wrestling. Today, he is a 23-year old Ivy League college graduate with a job he loves. Just the other day he was visiting and I walked around the corner and caught him marvelling. I didn’t say a word, but I suspect he’ll do it his whole life.

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88 Geeky March 17, 2014 at 12:10 am

Funny thing is my name is also Olivia and I have the same problem, they started going away but recently they’ve come back. I hold my breath clench my face and I wiggle my hands and fingers. It is really hard having this even though I’ve got friends and family to snap me back into “reality” as they put it, though I say it’s like they snap me back out of my reality. :D this dose get better, although people look at me and ask what’s wrong with me. Ahh typical junior high kids, just remember that this is what makes Olivia and I unique.

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89 Janice August 26, 2014 at 6:35 pm

Thanks so much for sharing here Olivia! I will read my Olivia your comment. It is so nice to hear experiences from a teenager! Thanks!!!

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90 Erin August 21, 2014 at 1:36 pm

Just read your article. My son turns 7 today and has been doing this since I can remember. Mostly while watching a show he loves, playing a video game, sometimes during sports, and in the car when he’s in the back seat without his sister or someone distracting him. He always snaps out of it when I call his name and he doesn’t have any major psychological issues that we know of except maybe hyperactivity. I am just learning that this has a name. Thank you for sharing.

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91 Janice August 26, 2014 at 6:36 pm

Thanks so much for your comment Erin. Calling my daughter’s name is also the way “I call her out of it.”

She is also hyperactive and seriously cannot sit still. lol But I am so grateful she is healthy!

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92 Claudia August 26, 2014 at 3:33 pm

Omg. I am so glad that I found this website. my granddaughter just turned 7 in July and she has been showing signs of this since she was an infant. we had no idea what it was but a lot of people had their own ideas. we are so relieved to finally know what it is and she’s OK. the pediatric neurologist said stereotypy and I had no idea what that was or if it wasn’t right diagnosis. Seeing the videos on YouTube gave me more clarity. Thanks everyone for sharing your stories.

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93 Janice August 26, 2014 at 7:02 pm

Thanks so much for your comment Claudia — so glad you were able to find answers. It is frightening when we don’t understand what is happening!

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94 Tanya September 30, 2014 at 3:53 pm

My 2 year old daughter has been opening and closing her fingers and tensing her hands and doing a little shake for as long as I can remember. My GP thought it was motor tics in childhood and referred us to a neurologist. The neurologist diagnosed her with stereotypies. She said they would eventually go away, but after reading these comments that doesn’t seem to be the case? Does anyone know if it does go away for some people? I know her diagnosis could have been worse, and the doctor said this was better than actual motor tics, and definitely better than tourettes, but I can’t help feeling so worried for my daughter’s future if people make fun and start to bully her. I left the appointment feeling so elated at the thought that these movements would eventually stop but am again feeling so discouraged.
Thank you for sharing all of your stories.

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95 Rebecca October 27, 2014 at 6:17 am

Hi, I am a 39-year-old mother of two, and I also have had complex stereotypies my whole life :) I just wanted to drop a line from the point of view of an adult who has this. I have had a happy life (relatively) and a successful education and career. I learned to control the stereotypies when I was young mainly by not allowing myself to get caught up in my imagination when I was around others. I will do my best to describe how they feel:

When I get caught up in my thoughts that involve a lot of action (in my imagination), the movements start. For me it is a wringing of my hands against my face. I am not aware of the movements at the time as I am far away in my thoughts, that feel very real at that moment. The energy generated from those thoughts has to go somewhere, so it goes out through those movements. I understand it looks odd and maybe painful to others if they were to see it as I squeeze my hands ery tight, but it is no trouble. Important to understand is that the imagination and thoughts cause the movements, not the other way round. If I get conscious of the movements, it immediately stops.

Usually those thoughts that trigger movements are ones where I am thinking of something very positive, like how I have done something well that I am proud of, or of something nice happening in the future.

If your daughter if having difficulties staying focused in class, I would say it is not a fault of the stereotypies which come about because of deep thoughts. The falling into the deep thoughts instead of being present in the class would be the issue. It can happen to me in really boring meetings at work, so I have to keep my hands under the table then! But it is rare. It is true that in the moment you are in that far away place, the rest of the world doesn’t touch you! Sometimes my husband will ask me what I was thinking about. He loves to hear what goes on in my head! Though I sometimes feel a little shame to admit that I was having a moment of pleasure at the thought of some future victory on my half ;D

I hope this helps you understand a little more about this “condition”. I am happy to answer any questions! Thank you for your story.

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96 Julia November 12, 2014 at 12:10 am

Thank you for your post! I was just given a diagnosis for my son about a month ago. I have been trying to figure this out for about four years. He had 2 EEGs and an MRI and no one seemed to know what it was. We moved and are going to a new pediatrician. She knew immediately what it was when I described it to her. I also had videoed him on my cell phone and showed it to her. My son says it is like he is daydreaming. He does arm flapping, pacing back and forth, bouncing and wiggling his fingers in front of his face. I used to work with autistic adolescents, so this always scared me. No one else seemed to be very concerned about it. It was so nice to read your comment. I think that my son will hopefully be just fine. He is a very happy and sweet boy. I was just so worried he was killing his brain cells when he would “zone out”. I’m glad it is more of a happy place for him. Thank you for sharing!! I would like to know, if it is a happy place, should I let him continue doing it without distraction? It does not affect him at school, he usually only does it at home or at least no one else seems to notice but me. If he is happy, I don’t want to take him away from that. I usually just say “Chasie, calm down” and he comes right out of it. Maybe I should let him be? What do you think?

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97 Rebecca November 12, 2014 at 1:40 pm

Hi Julia,

You’re welcome! I would say you could ask him what he is thinking about, and show an interest rather than discouraging it. Once he has expressed verbally what it is he is excited about, the built up energy might dissipate anyway. Perhaps you could try joining him in celebrating the happy thoughts with comments like, “oh yes, that is an exciting idea!”

Pent up emotions can bring on bouts of this for me, so encouraging your son to share those emotions in a way that he won’t feel judged for them would be a possible way to preempt episodes.

Good luck!

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