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When my daughter was two-years-old, the Pediatric Neurologist at Vancouver Children’s Hospital diagnosed her with Motor Stereotypy. In this newly updated post, we share our experience with Stereotypic Movement Disorder (SMD) as we worked to understand Olivia’s medical condition.
UPDATE: See how Olivia is progressing at age 13…
January 29, 2010 — After weeks of waiting, today was our appointment for Olivia at Children’s Hospital with a Pediatric Neurologist.
(In the 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 stereotypy. 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.
What is Stereotypic Movement Disorder
Stereotypic movement disorder, also called Primary Motor Stereotypies, is a disorder that begins in childhood and is characterized by rhythmic, repetitive, fixed, purposeful but purposeless movements that stop with distraction and is not associated with other neurological or developmental delays. Examples of primary complex motor stereotypies can include wiggling fingers in front of the face, rotating or opening and closing the hands, finger wiggling, hand flapping, flapping and waving of the arms, etc.
2021 Update: Recently we shared what we’ve learned over the last 10 years about Stereotypic movement disorder…
What causes Stereotypic Movement Disorder
The cause of stereotypic movement disorder is unknown.
However, one school of thought is that motor stereotypies may involve cortical-striatal-thalamo-cortical pathways. A recent study by Dr. Harvey Singer of Johns Hopkins shows there may be a link between GABA and glutamate dysfunction and primary complex motor stereotypies, but much more research needs to be done.
Growing Up with Motor Stereotypies — Olivia’s Story
In this video, Olivia and I share about what life is like living with complex motor stereotypies.
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]
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.
Our Next Steps after Olivia’s Motor Stereotypy Diagnosis
The neurologist is referring Olivia to a pediatric neuropsychiatrist who specializes in stereotypy, tics and Tourette’s, as well as ADHD, etc.
I 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 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 suggests 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…”
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.
But 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 at Four Years old
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 lineup, 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 has 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 motor 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 on Olivia at Seven Years Old
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!
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 viewpoint of a six-year-old, read this post that Susan wrote with her daughter’s advice to Olivia…
And don’t miss the comment section here on this post. There is SO much great information and encouragement from readers…
UPDATE on Olivia at Eleven Years Old
It has been nine years since Olivia was diagnosed with stereotypic movement disorder and we began posting about motor stereotypies and Olivia’s journey.
Olivia is eleven years old and is in the sixth grade. She still has her motor stereotypy and it presents exactly the same as when she was younger but perhaps slightly stronger in its intensity.
She experiences her motor stereotypies countless, perhaps hundreds of times a day. They still occur most often when she is bored or unstimulated such as sitting in class listening to the teacher, driving in a car, standing in line, etc.
However, she also can have her stereotypic movements when she is engaged or excited, actively listening, walking, watching a movie, etc.
Her motor stereotypies continue to frustrate and hold her back at school. She struggles to stay present during lessons and even during one on one instruction.
Olivia has been diagnosed with ADHD as well as a learning disability in math. She is currently on 18mg of Concerta and finds that it improves her focus, but does not reduce the number or intensity of her movements.
Emotionally and socially, Olivia is thriving. She continues to be a happy and outgoing child who makes friends easily. While she is sometimes embarrassed and occasionally teased or questioned about her movement disorder, she handles it well.
If your child or someone you know is diagnosed with motor stereotypies or stereotypic movement disorder, or you watch your child experience “tics” or uncontrollable movements that you don’t understand, it can be confusing and frightening.
Watching my toddler’s tiny body stiffen as she clenched, contorted and raised her left hand to her mouth countless times a day was terrifying. In those moments, she was somewhere else and I didn’t know what was happening to her.
But please do not despair. Our children are okay.
They will grow and flourish and their movement disorders may help them to become more resilient, more compassionate people!
Our children are not in pain when they “disappear” in their movements — the movements are actually enjoyable to them.
Of course, if a person’s movement includes self-harm, then the situation can be much more complicated and painful!
Personally, we haven’t had to deal with self-harm. Olivia sometimes accidentally bites her fingers or fist when she is experiencing her stereotypic movement, but it is just a minor injury and she often laughs and says, “I just bit myself!” when she stops moving.
For those of you who have children who self-harm, such as self-biting, self-hitting, eye-gouging, etc., my heart goes out to you! That must be incredibly difficult to manage.
Please share in the comment section about your experiences with movement disorders.
One of the reasons we are republishing this post is to reopen the comments. (Our comment sections close on older posts to try to prevent spam comments.)
The comment section on this post is an incredible resource, with many comments from people affected by complex motor stereotypies (CMS) and stereotypic movement disorder (SMD), including adults sharing their perspective on living with stereotypies.
And for more answers to your questions about complex motor stereotypies (CMS) and stereotypic movement disorder (SMD), links to resources and the latest research, we will be publishing a new post on stereotypies, Motor Stereotypies and Stereotypic Movement Disorder later this week.
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Written by Janice, co-founder of 5 Minutes for Mom.
Don’t miss posts with our our feed and please tweet with us — @5minutesformom. 🙂
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Jess says
Thank you so much for posting your story! My son is 2.5 and started showing some of these movements at 18 months. At first it was just during moments of excitement. He would tense his body (right side more than the left) and sometimes would bounce or jump as well. Fast forward a few months and he now has them frequently throughout the day when he is excited but also at meal time sometimes. He know makes vocal sounds with it when it becomes too intense-groans or sounds like gasping for air. He sometimes will have them before bed time but it bothers him the most in the middle of the night. After a long period of sleep he wakes up with these tensing up motions, jumping/bouncing, vocalizations, and when it wakes him from sleep he sometimes goes cross eyed as well which is the newest characteristic. I haven’t read any other comments where these impede sleep and wake you up. Has anyone else experienced this? Did anything help you sleep better? It is starting to hinder his day to day because he will be up for hours at a time. He has had EEGs, sleep studies, video EEG just to be sure with the eye movements. The neurologist doesn’t have any recommendations or really any information except they think it is stereotypic behavior.
Carie Liptrot says
Hi here’s a 2022 update: Dr. Singer has developed a behavioral therapy program for motor stereotypies in the last few years that has helped kids learn to reduce the movements. Check out his page at Johns Hopkins for more info. There is a video you can buy that teaches parents how to do this intervention at home and they can also refer you to a behavioral therapist. Also have some ongoing studies to determine how motorsterotypies impact children over years. I just learned about this with my son when we were seen in Baltimore for CMS *complex motor sterotypies* just wanted to add this info in case anyone here is looking for information.
Jess says
I tried looking for thus and couldn’t find it. Can you share the link? Thanks!
Tristan Grabowsky says
I beget to say Yes
Angie Estrada says
Hello Janice,
Thank you for keeping us up to date about Olivia’s story. How is she doing? I know she is in High School, correct? I want to know if there is a support group for teens with Stereotypic Movement Disorder. I have a 15-year-old son who has been wiggling fingers in front of his face and opening and closing his hands since he was 2 years old. He only makes those movements when he is excited, sometimes he also paces. My son, Alec has always been the top student in his classes from elementary to high school. He is an A straight student and a very high achiever. He wants to go Harvard to become a doctor, after he graduates from high school.
Having Stereotypic Movement Disorder never affected Alec’s academic, social or personal life. It was not until middle school that it started affecting him socially. In elementary school, a least he had 2 or 3 friends but after entering middle school, especially in the 8th grade he started with depression symptoms because he did not have any friends. Kids were not including him at school; he was ignored, never gotten invited to birthday parties and eating lunch by himself. The lunch situation was getting so bad that I had to pick him up from school during lunch time because he hated eating lunch by himself. Most of the time, kids will walk away when he tried to join in a social group at school. I strongly believe that Alec’s hand movements has had a big impact on how kids perceive Alec. Kids perceive him as weird or awkward. He has never been bullied but kids don’t want to hang around with him. Alec developed very low self-esteem because of the negative social experiences he has had in school. Luckily, his school grades have never drop, he really wants to persuade his dream of becoming a doctor.
One day he just came up to me crying to ask me for my help to do a google search to help him find ways to become a “cool kid”. He told me he wanted to become popular and have a lot friend (this broke my heart). His school situation (no friends) got so bad that he ending up getting severe depression. I did not want to medicated him and I tried alternative medicine. We tried acupuncture and Chinese herbs, luckily it helped him. He transfer to a new school in hopes he will have friends. He won’t start this new high school until Jan. 2022 (he is attending school virtually due to the pandemic). I don’t think things are going to be different in his new school. I tried to tell him to try to control his arm and hand movements but he tells me he does not care about what other kids think about him, I think his hand movements will continue to affect him socially in his school if there is no change. I hope when he starts his new school kids will accept him!
Do you have any advice based on what you have experienced with your daughter, Olivia?
Are there any virtual teen support groups?
Thank you,
Angie
Janice says
Oh, Angie – I am so sorry to hear about your son’s depression and his situation at school!
I will send you a private email to talk further.
HUGS
heather says
My son has motor stereotypies, he was diagnosed by Johns Hopkins (Dr. Singer who was amazing) when he was 5. Our nursery freaked us out by suggesting that he may be autistic. We were really worried as to how things would turn out when he was little.
Tristan is flourishing at 11 and enjoys what we call “tip tapping”, he used to not be able to control his movements, and we were worried about bullying, but he now can choose when he does this (or do very small movements when he is out that no one would notice).
For him, the movement comes with strong pictures of happiness and excitement in is brain (like football, formula 1 cars, computer games). He says it feels like playing a movie and his movement is strongly associated with pictures and excited feelings. It seems like an X-man super power, and he usually comes in from school and takes 30 mins to walk by himself around the garden “tip tapping”. We wouldn’t change him or his super power for the word which, for him is a great source of enjoyment. I kind of wish I had the same talent. My brain is much more boring.
He is happy to speak to other kids to help. He was voted in as House Captain recently and is doing really well at school. Thanks so much for the blog and the posts.
Janice says
Thank you so much for sharing your son’s story! He sounds like like an incredible, gifted young man!
Olivia doesn’t not experience the Intense Imaging your son does. She is very sad she doesn’t! It certainly sounds like an incredible gift!
cowdough says
I think my wife has something like this. I’d like to send some video but when nobody is around or looking she starts opening her mouth super wide like she’s adjusting her jaw or something… at the same time her hand will touch her nose then mouth then she’s normal for a few seconds and repeat process… if you turn around or call for her or come in the room she immediately stops and is. formal. her mouth does that when she concentrates like tying her shoes or when she sweeps or something
.. but if someone can see she doesn’t do it. she says she’s not aware she’s doing it but I don’t see how… it’s sad and scary for me. I’ve been wondering what it is for years. she wasn’t always affected by it.
Janice says
I am so glad you have been able to find information on motor stereotypies! Hopefully this info will relieve some of your worries for your wife. It is such a relief to know what is happening and that it isn’t hurting them!
Porfirio Corren says
It’s hard to say
Alireza says
Hi. My daughter is 2 years old and she does the same movements. Thanks for your text. How long do these movements last? For the rest of your life? Is there no cure? I live in Iran and I am worried about future problems. Has anyone been treated? Thankful
Susan says
Hi Alireza, this is Susan here… Olivia’s aunt.
It is very frustrating how little seems to be known about how to help people reduce or manage these movements. Unfortunately, we have not had much success finding medical help to reduce Olivia’s movements. She is now 13 and the biggest challenge is when she’s trying to listen to a teacher at school… or even me while I’m trying to tutor her one-on-one at home.
We really wish there were more resources available for families.
Please keep in touch and let us know what you find out in Iran and how your daughter progresses.
Alireza says
Hello. Thank you for your answer. I have been researching this for some time. My daughter constantly shakes her hands when she is excited and very happy. I read somewhere that using bracelets and toys, they distract the child’s mind and do not allow her to continue her stereotypical movements.
Susan says
I think bracelets and toys might help some kids avoid or reduce the number of times they engage in their movements. But we didn’t find any fidgets, bracelets, or anything else that really worked to do that for Olivia. We have purchased countless “fidgets” but none have worked for her.
cowdough says
my son did this until he was about 13. my wife did it as a child and now has some sort of complex movement issue that I can’t figure out. my son would straighten his arms to his side or wiggle his fingers and get stuff and almost vibrate it seemed… and his mouth stuck in the ooooo position… he grew out of it but it was weird
Lindsey Richardson says
Thank you so much for sharing your family’s story! My four year old daughter just got diagnosed with stereotypies. Similar to you, we first noticed the symptoms around 18 months and thought it was just a cute, silly thing she would grow out of. They have slowly increased since then, and suddenly happened much more frequently with all of the life changes due to COVID-19. While I am incredibly thankful it is not something serious, my “mom brain” can’t help but worry about how this may affect her growing up. Your post gives me such hope from a real-life perspective, versus a medical paper. Please keep the updates coming on your beautiful daughter!
Lindsey Richardson says
ETA: my daughter’s symptoms include clasping her hands or holding her hair, opening her mouth, and shuddering for several seconds. This typically occurs when she is engrossed in play, especially when we are playing pretend or when she is using fine motor skills (Legos, etc.).
Janice says
Thanks so much for sharing about your daughter!
I understand how hard it is not to worry and obsess over your child’s development.
Olivia will be 13 in September and I still worry about how her SMD will impact her as she grows older.
So far, Olivia has been able to handle the challenges considerably well.
But that doesn’t mean it is always easy. Her SMD along with her ADHD makes school and homework difficult.
She has good friends, she is a cheerleader (when we aren’t in the quarantine of course!) and kids rarely bother her about her SMD. Becoming a teenager and starting high school this fall will bring new challenges I am sure. But, I am so grateful for how healthy she is and so grateful that her SMD isn’t damaging or destroying her brain or body, etc.
Ally N says
My daughter is 4 and was just diagnosed and has similar movements. Do you have any updates on how you and your daughter are doing? I wonder if Olivia has any updates in the past couple of years also
Janice says
Hi Ally – I missed this comment but I have replied to your other comment over on our other post Complex Motor Stereotypies with an update on Olivia, etc.
HUGS!!!
Alyssa says
Thank you so much for sharing your story. It’s hard to find information on this. My daughter is 16 months old and just diagnosed with stereotypies. It’s so upsetting to watch her and you wrote about it exactly how I feel. I hate not knowing what her future looks like with this. I will keep checking your page for updates on your beautiful girl. Thank you again for making me feel less alone.
Alyssa says
I just wanted to add for anyone who is reading that my daughter’s movements include a facial grimace, bringing her head to her shoulder, and either clenching her fists or spreading her fingers out while she she shakes her upper body and head.
Janice says
Hi Alyssa, thank you so much for sharing here!
I know it can be so upsetting to watch our young children experience CMS and not know how it is affecting them, if they are hurting, etc., as well as worrying about how it will affect their future. Parenting can be so hard!
How is your daughter doing now?
Alyssa says
Hi, I just saw your reply! My daughter is now 26 months old and still doing her movements. It’s mostly just clenching her fists and shaking her upper body and mostly just when excited or when she’s handing somebody something. It has gotten a little more frequent since she turned 2. I can see that it doesn’t hurt her so that makes me feel a little better. We will just take it day by day and see what happens. Thanks for your reply!
Janice says
Yes – day by day is all we can really do! Always feel free to write to me if you have any questions as the years go by. HUGS!
Josie says
Very grateful to have come across this post. Our 3 year old daughter was diagnosed with CMS earlier this year (2019) and we have noticed our 9 month old son is starting to do the mouth opening and hand movements. Does anyone know of any research on CMS and siblings? I’m having a lot of trouble finding information on CMS in Australia and I’m also trying to find a specialist so if anyone could point us out in some direction it would be great. Thank you to you all super Mum’s and Dad’s.
Janice says
Hi Josie – I am sorry for the delay responding to your comment!
I don’t have any specific info on siblings and CMS. I have a son who is 5.5 years older than Olivia. He doesn’t have CMS but he has ADHD, Anxiety/Depression, and SPD. Considering that many conditions such as ADHD and ASD have genetic components, I wouldn’t be too surprised to hear of siblings with CMS. How are your kids doing now? Have you been able to find any local doctors with experience with CMS?
Cass says
Hi Janice, thank you so so much for sharing Olivia’s story. She’s such a beautiful soul! Everything you said resonates very strongly for me and my now 4yr old daughter.
Josie, if you’re in Sydney and haven’t found a neurologist yet, I can recommend Dr Michelle Lotentzos at Child Neurologist, Westmead. She did her research on movement disorders and psychological comorbidities under Prof Russell Dale (Australia’s biggest expert on movement disorders that I can find) and recognised my girl’s symptoms straight away. She has seen lots and lots of kids with CMS and not fazed at all, very reassuring.
My girl started just after 2yr old, she moves as if she was acting out an imaginary play, eg she will waltz around with an imaginary partner or look like she’s offering food to other people then putting in her mouth. Her movements are usually around her hands and mouth. She also started strange laughing during these episodes last year, which really disturbed us. She says she sees her ‘dreams’ and she can’t turn them off. Apparently this is a subset called ‘intense immagery movement’, or IIM for short. It was such a relief to read so many of the comments from others in the same boat, especially Heather’s sharing of her son Tristan’s explanation and ‘tip tapping’.
Dr Lorentzos also said cognitive behavioral therapy (CBT) has shown the best results to date. It often doesn’t stop the CSM, but can help kids contain and reduce it. There is no medication that has been shown to be effective. My daughter has had blood levels checked often, for iron, B12, vit D etc. All good levels. She is too young for CBT now but when she is 6 or 7, we will start that. My daughter is like many of the children in these comments: bright, outgoing, no other neurological or development issues etc and for that we are extremely grateful. She tends to do CMS when she is very tired or bored. It’s getting harder to distract her and her movements are getting more complex and more frequent.
Stay strong. It is so disturbing but now we know this is not a psychiatric condition we are greatly relieved! We will just have to help her learn to live with and manage it as she gets older … easier said than done, I know. Lots of love to all you tired and stressed parents out there xxx
PS we also started seeing a pediatric psychologist. Dr Lorentzos’ research found that CSM kids are over 4 times as likely to have a psychological issue as well, so we need to stay aware of possible anxiety or depression etc.
Janice says
Thank you so much Cass for sharing about your daughter!!! My daughter is so disappointed that she only has CMS and not IIM!
HUGS
Alyssa Hedenstrom says
This blog post helped our family so so much! In February (2019), a friend of mine insensitively asked me if our 2 year old was autistic. She wondered if he had been tested for autism because she noticed his hand movements and thought they might be tics. My husband and I had noticed our son’s movements but we had thought they were sign language and then we just got used to them. We knew it wasn’t causing him distress and in fact, we could tell that he was only doing it when he was very, very happy! After my friend mentioned this, I started doing some research online and came across this blog and articles from Johns Hopkins. From the advice of our pediatrician, we got a rec to see a pediatric neurologist. During that time, I had also reached out to Janice and she was so helpful and encouraging! We went to our son’s appointment with 90% certainty that our 2 year old had complex motor stereotypies. Sure enough, he was diagnosed with just that. The doctor was kind, helpful, and said that we have nothing to worry about. When our son gets older, if they cause him to feel emotional stress, self conscious, the movements change in occurrence, or they make it hard for him to focus, we could seek further support. We are so thankful that this was a great post to turn to when we weren’t sure what we were facing. Now we know how to respond to people who ask what’s up with our son and we can let his care-givers and teachers know too. Overall, we love being able to see his joy when he does his movements and are thankful for a great team that with help him feel confident as he grows. Thank you Janice!
Karli says
Thank you for your post. My daughter is 5 years old and has primary complex motor stereotypies. She first started to show signs around 1 year old and it severely intensifies right after our 2nd child was born when she was 4. I still have moments I wonder if adjusting to a new sibling triggered something to make her episodes more intense and more frequent.
There are already so many comments and questions from friends and family when they see her face contort and her hands flap and I don’t know how to deal with it emotionally. She’s going into kindergarten and my heart hurts thinking about how other kids may bully my sweet, very sensitive little girl. I don’t want this to define her. My husband is in denial and thinks in time it will go away. She’s so smart and funny and I have so much anxiety over whether this is going to affect her making friends or even what her adult life will look like.
I understand in the scheme of things those is so trivial. There are children all around the world suffering with far worse conditions but I’m still heart broken. I admire your compassion and grace. I hope one day to get to that point.
Janice says
Hi Karli – I am sorry for my delay in replying to your comment! I am so sorry to hear how much you are hurting! I understand your pain and fear so well. I want to give you a big HUG and let you know that it will be ok. There will be hard times for sure. Parenting is always a painful endeavor! But nowadays kids are getting so well educated on different conditions/situations/diagnoses etc. Your daughter will probably have other children in her classes with differences and challenges too. And on the hard days, when she does feel sad and alone, she will have an amazing mom to hug her and tell her that she is FABULOUS just the way she is!!! HUGS my friend!!!
Margie Dunn says
Have you supplemented her with magnesium? Doctors overlook the simple but powerful mineral which calms the mind and body in wondrous ways. Look up Dr. Carolyn Dean who wrote “The Magnesium Miracle.”
Janice says
Thank you for the advice! While I take Magnesium, I haven’t had Olivia take it regularly. She complains about having to swallow supplements, but I think I will give it a go. Thank you!
Jules B says
Yes! I found what I have been looking for =)
I first noticed my daughter’s sterotypies when she was about 6 months old. When I heard your video saying at first you thought she was just very enthusiastic….that is EXACTLY what I believed with my baby. Her mouth opens, she makes firsts, bends her arms up towards her chest and shakes. It truly just looks like excitement to the untrained eye. And your daughter’s are the closest comparison I have ever seen to my daughter. She is now 8 years old and in 2nd grade. It is starting to get to the point now that her friends and people around her are paying more attention to what she is doing and commenting on it. It is a huge topic of embarrassment for her and the fact that she doesn’t even realize when it is happening….or that it has just happened, frustrates her poor heart. I do my best to build her up, but unfortunately, sometimes there is only so much even a mom can say to make hurt feelings better.
In one of your updates you had said you were going to the psychiatrist, did they ever do any kind of treatments? I was told behavioral therapy may be a good idea. But I don’t know what would or wouldn’t help. I haven’t read the comments yet, but that is my next stop. THANK YOU for this post!!
Janice says
Hi Jules – sorry I didn’t reply earlier to your comment!
I am so sorry your daughter is struggling with embarrassment. That is so hard. I know that Olivia has her struggles with embarrassment too, even though she tries to remain confident. And while I try to offer positivity and encouragement here to parents who are worried about their kids facing teasing and curious questions and stares, I know that it isn’t easy. There are difficult days.
Olivia has not done any behavioral therapy. She does take Concerta for her ADHD and she likes that it helps her concentrate more. It doesn’t seem to change the amount she moves, but it would be hard to tell. She still has her stereotypies and they are consistent and happen throughout her day. But recently, she is twelve now, she thinks she may be suppressing them more at school or social situations. It would be hard to know for sure though as she is often not really aware of how often she has them.
Her stereotypies are most disruptive when it comes to her learning. Trying to help her with homework is very difficult because she can’t stop her stereotypies while I am reading or showing her something. But as she gets older, that may improve.
How is your daughter doing now?
Karen says
Thank you so much for this thread! It’s incredibly helpful. My son has this and I always feel like I’m shaming him when I ask about it. Really, all I’ve wanted is to understand what is going on for him, and it’s so hard not to be able to talk about it.
Janice says
I am so glad this thread has been helpful to you. I know it has helped me so much to hear from other families and people with stereotypies to understand better what is going on with my daughter and to help put my mind at ease. Now that my daughter is 11 and can talk to me about her stereotypies, it really helps as well. HUGS! 🙂
John says
https://complexmotorstereotypy.weebly.com/
Please read the Q and A section as I think you will enjoy it.
My 7year old son has stereotypy with IIM just like these people who wrote this blog. It is very informative for adults trying to understand what it is and how it works.
Janice says
Hi John – thank you so much for sharing that link! What a great website – I hadn’t seen it before. Thank you!
Chandra says
I have never heard of this, and my comment may not be valid or related. But it may be, and therefore I will share. My mom had awful tics (she constantly would be twitching her head to the side), to the point where the doctor was considering prescribing a seizure medication. My mom was hesitant to do that and so researched other options. She started taking large doses of B-12 vitamins, and the tremors/tics stopped completely. B-12 is about as benign as it can get, I believe it’s almost impossible to overdose on it, and it comes in chewable tablets that (gasp) actually taste good. It is also fairly inexpensive. As I said at the beginning of this comment it may be completely useless, but its something that is soooo easy to try, so I thought I’d mention it.
Susan says
Thank you for sharing your experience. What a miracle that was for your mom! It’s always great to hear different ideas and B-12 vitamins can’t hurt right? Maybe Janice will try it.
Natalie Goosen says
My son has started to have alot more movements. He still does his arm flapping and jumps on the spot but has started to rub his face until it is red & sore plus pulls his face & neck. He seems to get his direction wrong at times. If you give him an instruction (eg: go brush your teeth) he will go the bathroom but will then just stand there staring into space or flap his arms, you have to actually tell him again to brush his teeth. Can anyone please tell me if this is the norm for children who have the Complex M.S? This advice would be greatlly appreciated. Thank you.
Janice says
Hi Natalie — thanks so much for sharing with us. It sounds like your son has a more complicated case than my daughter. What has your doctor said? How is your son doing now? We would love to hear an update.
Jackie says
My six year old also has primary complex motor stereotypy with hand and foot clenching when he is happy. Initially, when I first noticed it when he was a baby, I was very nervous wondering what it was and what it meant. Through time, learning about it, and reading others stories, particularly adults who have done it, I have learned to not only embrace but be happy when I see him doing it. It is joy coming out through his hands and feet. When I see it I feel happy because I know he is happy. He has a way of expressing his feelings that feels wonderful for him. It is like laughing or smiling only better. The problem isn’t them, it is our society for not understanding. For labeling these kids as having something wrong with them. It can certainly cause some attention problems but that can be worked through. I am a therapist and I hope to help him love himself, explain to others what it is, to stand up for himself if need be and to be joyful that he has this as it is a blessing. People with this are typically more imaginative, creative, smart, and it feels good to them. I hope this helps….all the best to you mamas out there.
Janice says
Thank you so much for sharing your perspective Jackie! I love your attitude! Indeed, our children are imaginative, creative, smart, etc and their brains are simply working in a way that we don’t understand. Thank you for your thoughts! 🙂
Natalie Goosen says
Thank you for that insight and what I can expect while my son grows up. I have started asking him what he is thinking while he is either moving is arms / jumping / rubbing his face but he looks at me and says “nothing”. I will continue ununtil he actually realises that he does these movements. I have tried to change his habit from arm flapping to leg tapping but this has not worked. Any other suggestions that would be more socially acceptable? What age were you when you became aware of your movements? I have applied at regular schools for him for 2017 Grade 1. We live in Cape Town and I am only aware of 1 other child in our area that has this disorder. He has a vast imagination and come up with things I would not even think of as an adult. He is our special little guy!
Raj James says
Hi,
Sorry I could not respond sooner. I was around 8 years old when I became aware that these are socially unacceptable. My parents did not make me aware of the habit. In fact, they never raised any objections to it. Again, since you keep mentioning regular school I thought I would add this – I think special school for this type of a disorder does not make sense unless there is some delayed development. I am now in India and am in a similar situation with my son as well. I have him enrolled in regular school for 1st grade in 2017.
R
Natalie Goosen says
Thank you Raj James for the inlighting information. I have been trying for ages to get more information on motor stereotyping to see if there is a treatment for it. I am so glad to have found this website. Thank you. My son would sit and twist his feet when he has 1 years. Then the movement went to flapping his arms which I thought looked very silly. I used to call him my bird. My son was diagonosed when he was 4 years old and sent to OT to help. After 6 months of OT it has stopped a little bit. I was told by my Dr that is was habit forming and would stop. But to date he still flaps his arms and now has started jumping on the spot. He slaps himself on the odd occassion in the face. I feel his movements are getting worse and am worried that when he starts Grade 1 in 2017 the children are going to tease him as children can be very cruel. The problems as present are not sitting still during class time and jumping up to jump on the spot. Should we consider putting him on a school where children don’t see each other as different? He is very clever and absorbs everything you tell him, he is a very deep thinker. It is encouraging to hear that children can grow up to lead normal lives and have great futures.
raj james says
Hi Natalie,
As I mentioned, my son like myself also has stereotypies. I have put him in a regular school. He turns 4 this week and I sometimes tell him to control his stereotypies. It is difficult even for someone like me to watch him go through it. As for friendship is all about people who accept us the way we are. As for people taunting, we learn fast and so we will learn to control it. Will we be hurt? yes. Will we hide it? yes.
One thing that merits mention – I have found people with these can be extremely imaginative. I imagine/day dream a lot. Again, this does not come in the way of me executing day to day. I have a masters degree, 5 US patents and numerous publications.
As always, I shall be happy to monitor this thread and answer any more questions.
RJ
raj james says
Some things I would add.
It is very difficult to get a school where kids don’t see each other as different. I would not put the kid in a special needs school unless your doctor recommends and if he is severely lagging behind in speech or motion.
I used to slap my face occasionally especially when I used to study hard. Sometimes people try to bunch this with Aspergers which is not true. Aspergers is a separate diagnosis. Often times (not always) we do not perform on command i.e. you want to show off your kids singing skills to others – he might not do it on command like most other kids.
We have a lot of emphathy, and often go to extreme lengths to understand and sympathize with other people’s problems. We might not be social with other children but I had friends right from childhood who remain my best buddies now.
I hope this helps.
RJ
raj james says
Oops…to clarify more….When I meant Aspergers I meant stereotypies and sometimes social awkwardness that comes with it (not the slapping behavior per se)
Raj James says
Great article and I hope people will learn from what I am going to share here.
I am a 35 year old who has had a variety of stereotypies all through my life. Before you ask let me tell you. I consider myself fairly successful – I run my own company, am happily married and blessed with a lovely son who also has stereotypy. So what were my stereotypies:
I sucked my thumb till I was 12 years old (yeah!). When it became an object of ridicule as I reached the age of 6, I started doing it in private. I grew out of it when I was 12.
I constantly, still do, clench my teeth and shake my head mildly. There are certain visual cues that trigger it and not necessarily when I am excited or bored. I sometimes bite my finger (the lower phalange or whatever that is called). I clench my fists at times and at times I just feel like I need to let out some extra energy doing these things.
Not sure if this is related but I used grind my teeth when I was younger. The doctors hooked me up to an EEG machine and one even tried to diagnose me as an epileptic (I have never had a seizure. I never showed my stereotypies to the doctor).
I learnt fairly quickly that these quirks were not socially acceptable. Though I never could get why it was perfectly acceptable for a drunk teenager to puke his guts in front of his friends but me clenching my fist was a no no. We as a society are superficial. And no. I am not the Dalai Lama.
Though I hate parties, I have a lot of friends and connect with them on a very deep level. I am also fun to be around. Maybe I will tell you a couple of jokes if you guys are nice to me. I am very articulate and can talk from anything regarding ancient history to astrophysics. One bummer though – I was never much good at sports.
I will watch this thread and I am happy to answer any questions.
Janice says
Thank you so much for sharing your valuable insights with us Raj! We really appreciate it! How is your son doing now? Thanks again for sharing!
raj james says
Hi Janice,
Apologies for my delayed response. It has been a while and I just happened to check in again on this thread. My son is doing fine. He does have the ticks from time to time when too excited but has learnt to control it in usual situations. If I see it I gently tell him not to do it. My mom was pretty blunt with me and I thank her for it :). My son talks a lot and has made friends. A vivid imagination makes him blurt out things that other people might think is silly but he will get an handle on that too I am sure. He is interested in sports but not throwing himself into it unbridled like the other kids. He does have his hesitations specifically in group sports. I am trying to push him more towards games where he has his space (ping pong, badminton, cricket (if you know the game :)). Don’t hesitate to ask me for more details. I hope your kid is doing fine.
On the whole though I am seeing a lot more kids with the stereotypies.
Angela says
Found your beautiful article on our way home from San Francisco where our 11year old daughter was just dx with stereotypy from a pediatric neurologist. Three weeks ago she suddenly began having uncontrolled face shaking and head nodding. We immediately sought help from the top doctors (who needs money to live on right) fearing the worst. Julia is very intelligent, highly creative, always has 3-4 books going at one time (and remembers what each storyline is ), has a memory that would put an elephant to shame, but also lived on very little sleep. Since this started the only good thing that has come from this is she for some reason she is sleeping better than ever before. She’s way older than most who have this and it concerns me how she will get looks, but your article gave me an outlook that I want. It’s not life threatening, no medicine, and it’s not limiting. I read the last to Julia and she said that’s how I feel -“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.” So thank you for helping us to get a grasp on this new addition to our lives.
Janice says
Thanks so much for sharing with us Angela! How wonderful to hear your daughter’s perspective. She sounds like a wonderful person! May I ask how is she doing now? We would love to hear an update. 🙂
Gerry says
How old is Olivia now and how is she doing? Has the behavior worsened or subsided? Our son is 11 1/2 and I don’t hear about many children his age or older that have CMS. Thanks!
Janice says
Hi Gerry – Sorry I missed your comment originally. We recently updated this post and so I saw your comment now. Olivia is 11 1/2 and doing well. She still has her stereotypic movements and she struggles to stay focused in school, etc. She is on Concerta and it helps her concentrate a bit, but she misses a large amount of what is going on in class and has her CMS movements all throughout the day. How is your son?
Elana says
Thanks so much for sharing your story. Do you think the Concerta increased your daughter’s movements? Ritalin was just prescribed for my daughter but I am concerned about a potential increase in stereotypic movements.
Paula says
I want to thank you for writing this. My daughter was just diagnosed with stereotypy tics. After going through a MRI, they found out she was not having seizures and doing an EEG, they saw some tics but don’t know why. It breaks my heart watching her go through this. She is almost 4 years old and I am afraid that kids are going to make fun of her with her hand clenching and her facial movements. Please keep me updated on what you and the drs are doing with your daughter. I feel like I am not getting the right answers. I am glad that I am not the only parent going through something like this and no one seems to understand me. I thank God everyday for giving me a healthy, fun, loving little girl.
Rebecca says
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!
Susan says
Rebecca,
Thank you so very much for sharing your experiences!
It is incredibly helpful to hear from an adult who can articulate what is happening and what it feels like.
Olivia also describes it as daydreaming.
Rebecca says
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.
Julia says
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?
Tanya says
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.
Susan says
Tanya,
Thank you for taking the time to comment and share your story.
It is very difficult wondering what the future will hold and how long these movements will continue and how they will affect their lives.
Try hard not to focus too much on what happens in other cases, because each child is so unique.
But I hear you… Janice and I (I’m Olivia’s aunt) are worriers by nature, so we can relate to the “What ifs…”
We were SO scared when Olivia was a toddler and we first noticed these movements. We were terrified for her health. And so even to this day, when it’s frustrating that the movements haven’t stopped, we try to remind ourselves how blessed we are that she is safe and okay. This will be a difficult road ahead as she’s now in grade 2 and still consistently doing the movements as soon as she’s bored, waiting in line, sitting in a car etc.
We’ve been so relieved that she still has not been bullied or teased about this behaviour… which to be honest by now, we would have suspected that kids at school would have teased her. Likely, a day will come that some kid will try to tease her about it… My guess is she’s going to handle it very well. But it’s hard not to worry about it.
Stay in touch and let us know how your daughter progresses.
Claudia says
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.
Janice says
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!
Erin says
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.
Janice says
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!
Geeky says
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. 😀 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.
Janice says
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!!!
Mick Mauricio says
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.
Erin says
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.
Janice says
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!
MJ says
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.
Shelly says
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!
chris says
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.
mommyteach says
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.
Crystal says
My son is 6 and has been doing the opened mouth hand flapping, feet kicking “episodes?” since I can remember. Whenever he catches me glimpsing at him, he’ll reply “I’m excited!” and laugh. I’m not quite sure if he’s just saying that because that’s how we, his parents, described it and he just feels like that’s a good thing to say about it OR if he truly is excited. I notice he does it while watching action packed movies, playing video games, playing regular games etc… his primary physician has never actually diagnosed him with CMS, he said it seemed to be a tic, this was when he was about 2 years old. However, everything described with CMS is my son and he does stop if I distract him. I do want to mention it to his doctor, in private I guess? Or should I be open about it with my son and have him apart of the conversations? I do not by any means want him to think it’s a problem and he has something wrong with himself, that is not the case and it breaks my heart even thinking that. His teacher hasn’t mentioned anything, he’s extremely smart. He’s in first grade, reads at a third grade level, and he knows how to multiply and divide (even large figures) in his head! so I can’t help but wonder if he does it in class while bored, as sometimes he will say he’s bored and it’s so easy. I don’t really know what to do, I’m a bit lost and it is very scary because I don’t know if it will progress, if the kids will torment him etc…I just don’t know. Any advice would be wonderful…thank you
Janice says
Crystal – I am so sorry I missed your comment! Worrying about our kids is so overwhelming – I hope you have had some help/guidance from your doctor.
I think you should be open with your son and talk to him about what he thinks about his movements and how he feels about them. Do they upset him? What do they feel like?
Reassure him that there is nothing wrong with him and this is just how his brain responds in certain situations and with certain stimuli. It sounds like he is very bright and the truth is, there is SO much happening in the human brain that we don’t understand. His brain is probably firing on so many levels, his movements may be a coping strategy, or simply a by-product, etc.
The result is only that some people don’t recognize this movement and thus are confused. It is not because something is wrong with him!
Nowadays, kids are learning to be far more understanding and accepting of differences in one another. I think our kids are growing up in a far more educated and understanding world. HUGS!!!!
Serrina says
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 🙂
Chrissy says
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.
Sara says
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.
Sara says
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.
Chrissy says
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!
Aleksandra says
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…
Karen says
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.
Amy says
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.
Geeky says
I have this, basically for me when ever my brothers would bug me right after an episode I would lash out on them.
Celeste says
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. 🙂
Jamie says
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.
Lukrecja says
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.
Lukrecja says
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
Karenina says
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.
Michele says
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 ???????
Anonymous says
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.
Julia Tweedie says
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!!
El says
Thank you for this comment! It is very comforting to think that my 3yo’s behavior is just something wonderful for him. He is so quirky and great, and I never know if I am sticking my head in the sand about something that is actually a problem, or over-pathologizing a behavior that is just fine the way it is.
Teresa says
Thank you so much for your comment. My son is 6 and has this. He is smart and social but when he does his hand flaps/nose touching routine it’s like he goes into his own world and when I have asked him what are you thinking about Nolan he tells me he is just using his imagination and when he does those movements it makes them feel more real. So reading your story really hit home and gave me comfort. I worry about him because he does have a hard time staying focused at school and I worry about kids making fun of him as he gets older. Thank you for sharing your story!
Tammy says
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.
Katherine Trask says
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….
tabatha says
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
Christina Lopez says
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.
Amanda says
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,
Julie says
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.
Lorie Shewbridge says
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.
Stephanie says
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.
Mikki says
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
Debra says
Thanks for keeping us updated with the news. I’m sure it feels so much better having the knowledge you do now.
HUGS!
Rachel - Busy Mommy Media says
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.
Kate says
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.
JamericanSpice says
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.
Naomi says
So happy to hear the diagnosis is not a life-threatening condition and that she may very well outgrow it.
Farrah says
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.
Angie says
I’m glad it’s nothing serious! I’ll keep you all in my prayers!
Sarah says
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.
Shop with Me Mama (Kim) says
Glad to hear you finally got some answers. Yeah for no treatment or medication. Hugs and continued prayers to you and your daughter 🙂
oh amanda says
Oh, I just got chills reading your post. I’m glad you got a diagnosis, but know that I’m praying for her!!
shelly says
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.
fidget says
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
Wendy K says
Thinking of you and your family and wihsing you the best!
Stacey Kannenberg says
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!
Deanne says
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))
Shannon says
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!
MommyNamedApril says
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))
Caren says
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.
Sydney says
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!
Debbie says
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.
Bailey's Leaf says
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!
Muthering Heights says
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!
Mary says
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.
Jennifer, Snapshot says
It is great to have support, and I know that you are relieved to have a diagnosis so that you can rest in that.
Rachel says
What wonderful news! I’m so glad that it is benign and much less serious than you had feared. That’s so excellent!
Tarasview says
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.
Mindy says
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
Jon Gray says
Praying for all the best for Olivia and you guys. Glad to read that the prognosis is good. Hang in there!
The Mom Jen says
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!
Stacie says
I am so happy that it is nothing too serious!
((hugs))
Christi says
So thankful that this is something that can be dealt with! Praising the Lord with you!
Pamela says
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!
suburbangranola says
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.
Lucretia M Pruitt says
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))
Katie says
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*
Lisa L says
I’ve been praying and praying for Olivia Janice. So glad to hear this good news.
Blessing says
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
Renee says
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.
Jessica Harwood says
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.
Nancy T. says
Oh what a relief to get a diagnosis! So glad to hear it’s something that can be managed.
Marj McClendon says
I am so glad to hear Olivia has no seizures or anything that requires medication. Thank you Lord. Big Hugs to you and Olivia.
Jenean says
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.
Carissa says
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!
Christine Jensen says
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!
A Cowboy's Wife says
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…
Susie's Homemade says
I am so glad that she has something that can be worked out in therapy! That’s great news!
Deb - Mom of 3 Girls says
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…
TheAngelForever says
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.
Kelly Tirman says
wow – I had never heard of this before. Thanks for sharing.
Debbie says
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.
Christine Holroyd says
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.
Mom24 says
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.
Eileen says
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
Melissa Hodges says
Was she ever diagnosed….what about chiari malfunction I think it is
Melissa Hodges says
Malformation….sorry
laura says
Happy for your family! Wahoo!