Motor Stereotypies: Our Story

My youngest child has a neurological condition called complex or primary motor stereotypies (also called stereotypic movement disorder). It involves involuntary movements of the arms, legs, hands, feet, head (shaking), or the whole body, and can also include facial expressions and vocalizations. Some people also attach Intense Imaginary Movements to this condition. There is a doctor at Johns Hopkins doing research on this condition, which you can read more about here **UPDATE: Tina Kline, Dr. Singer’s assistant, posted in one of the CMS groups that Dr. Singer’s CMS research is coming to a halt as of 11/1/15, due to lack of funding. This has not been confirmed on the website as of 11/1, though.**. They are referred to as “non-autistic” stereotypies, but my son is still too young to definitely rule out autism based on the current criteria. 


We first noticed something was different with our third baby at around 3 months old. He appeared to have an intention tremor when he reached for things. He would also stiffen his arms and legs, and make a facial grimace while holding his breath. This started out happening during diaper changes and when lying on his back on the floor, then transitioned to the high-chair while sitting up. In the chair, he would throw his arms out as if to balance himself, his head would jut forward, and his face would contort into the same grimace. His wrists and ankles would twirl, and he would occasionally repeat a guttural scream that wasn’t his baseline “normal” baby noises. Here and here are YouTube videos of babies (not my son) doing similar movements, and here is a video of a baby doing the “head shaking” stereotypy. I was concerned, but we were always able to distract him out of it, however briefly, so I wasn’t worried about it being seizure activity. Until the week after Halloween, 2014.


Halloween weekend involved me eating a LOT of my older kids’ “gluten free” (I was GF for unrelated reasons at that point) candy in order to save them from eating it. There are obviously no lengths I won’t go to in order to protect my children from bad food. Anyway, come Monday morning, the baby’s (he was 6 months old at this point) movements when we put him in his highchair were constant, very exaggerated, and had started involving his eyes rolling up and to the side. This new development with his eyes freaked me out, and I told his pediatrician that I was now concerned about seizure activity. He was admitted that afternoon for an EEG and neurology consult. We were ruling out infantile spasms


After a few hours in the hospital, a 20 minute EEG, and a brief visit from the pediatric neurologist and his team, we were sent home with the good news that he did not have IS. Of course, we were not given any ideas about what it COULD be. I only had one video at that point of him sitting up and throwing his arms out, and every medical professional, including the neurologist, said it looked like he was just balancing himself. So, I did what any other concerned parent does these days, and I looked to Google for some answers. After quite a bit of searching and watching a lot of YouTube videos, I found a chart describing the different characteristics of tics and stereotypies, which led me to the Johns Hopkins website, which then led me to find a Complex Motor Stereotypies (CMS) FB group.


Figuring out the diagnosis was such a relief. Not only did I have a reputable mainstream healthcare institution to direct the baby’s healthcare providers to for information, but, with one click of a mouse, I became part of a community of hundreds of other parents dealing with the same diagnosis. I was very excited to start getting some of my questions answered, and to come up with a plan for managing and treating this condition. 

 

                       

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In this part I will share some opinions I have about about CMS which have not been the most popular with some other CMS parents in the FB group. 


1. CMS is not a “gift.” 

Something I quickly realized when I first started participating in the group and asking questions is that there is a faction of parents who are only part of the group in order to talk about how special CMS makes the people who have it. To me, this sentiment is similar to the parents who insist autism is a gift, no matter how severely disabled other people’s children are by it. My little boy is a gift from God, and he is truly is a joy to all of us. So are my other two children, who do not have this neurological condition. CMS is not the gift; my kids are. 

So, when I began asking people what factors they think might have triggered CMS to manifest in their child and what they were doing to manage it, I got quite a few responses from people who told me CMS is genetic and that the only thing I could to do was love and accept my child and embrace this special “gift.”


2. There is no research that says CMS is a purely genetic condition.

This is the other part of the “CMS is a gift” answer. People keep telling me that CMS is purely genetic, because they and/or their partner bites their nails or twirls their hair, which are simple stereotypies. Or, they had an uncle who flapped his hands, so they know their child just “took after” him. I bite my nails, and I’m sure there is a connection between that and one of my kids developing a much more severe stereotypy, but there is absolutely no science that shows us that there is a direct, genetic, cause-effect relationship between the two. Just like almost every other health condition, genetics must play a role, but environmental and epigenetic factors do too. This concept has recently been termed the “exposome.” Some people direct me to the Johns Hopkins site to confirm the gene-only cause. Here is what it says:

 

“It is unclear what causes repetitive movements in children who are otherwise normal. Recent research showed that 25% of subjects had a family history of primary motor stereotypies or other movements, suggesting the possibility of a genetic predisposition. Johns Hopkins is currently conducting a study to identify whether there is a genetic connection”


A possible genetic “connection” or “predisposition” leaves a lot of room for other factors to play a role, right?


3. I am not trying to blame myself or anyone else for my son having CMS.

I do appreciate family and friends who are concerned about me coming up with a long list of things I did while pregnant or before that potentially contributed to my son developing  CMS. I understand that they don’t want me to become overwhelmed with guilt and “what ifs?” I agree that that would be counterproductive and would negatively affect the entire family. I am not looking for things to blame on myself, though. I am looking for things that might have contributed to the problem, because once you figure those things out, you are on your way to figuring out how to mitigate or fix the problem. I am only trying to find ways to help my son, and am not looking for someone to blame, including myself. I am also not trying to imply that other parents are to blame for their kids’ CMS. This line of thinking does upset some of the other parents in the group, though, likely because they take my questions to mean that I am trying to place blame somewhere. I have tried to explain how that’s not the case in the group before, with varying levels of success. Let me be clear here, though: My only reason for asking questions about what might cause or contribute to CMS is to find ways to help my son going forward.

Go here for Part 2 of our story. 

 

 

 

4 thoughts on “Motor Stereotypies: Our Story

  1. Hi,

    I was wondering if you had any ultrasounds during your pregnancy? When I was six weeks pregnant, I went to a clinic that caters to Medicaid patients, and expected to get quality care. I couldn’t get into my own clinic because of having been released a year before because I had not come in a third time to be told I did not have breast cancer. Anyways, the nurse at the Medicaid clinic did a transvaginal doppler ultrasound and I could hear my daughter’s heartbeat at six weeks in utero. I underwent four more ultrasounds up until five months of pregnancy – two more being transvaginal and two being abdominal- when I decided no more and went to a midwife group. Fast forward and my daughter, who is now four, has hemiplegic cerebral palsy, mixed expressive-receptive language disorder, a possible visual processing disorder, possibly an auditory processing disorder, and now this thing that looks like a tic and or a motor stereotypy. She brings her hand in front of her face and shakes it and opens her mouth in a wide fashion over and over but it can be interrupted, and sometimes I think she can almost make it occur. According to her MRI the neuro said she had an interruption of some sort to the neuronal migration. Huh, an interruption-possibly sound waves that came in at a high intensity and beat and beat against her brain until the cells could take no more, being that there was no skull to protect it. The nurse had that doppler on for a few seconds over a minute. And when I had gone to the next appointment the very next week at my regular clinic, the tech said she would not turn on the doppler because it could harm the fetus. When I had put everything together, I called a few years later about this, she said that it is supposed to be turned on at 16 weeks which would be an abdominal ultrasound. My research has led me to understand that all ultrasounds are damaging to the fetus (three studies are now in medical journals, showing damage to chick and mice brains and one showing a correlation between first trimester scanning and autism; also, Jim West wrote a book where the Chinese did scans on babies who were going to be aborted and in every one of the babies, the brain had been damaged), but that doppler in the first trimester could be devastating. And noting all the CP, speech issues, dyslexia, tics, motor issues, etc. that are occurring so much in our children, it seems as if ultrasound is being overlooked as to the cause of it all. People have told me that the medical community would not allow it if it were not safe: my own neurologist said to not get a CT for my daughter due to the fact that it is known to cause cancer in people! Funny, they are still taking place every day! Screw safety, as long as there is a kickback in the form of money. These scans don’t help any baby for the fact that they injure them needlessly; the only saving grace for most is that the brain can repair itself to a point, leaving those who only had one or two ultrasounds to go gliding by on the sidelines without notice of any disruption, while the rest is being chalked up to genetics, environmental factors, infection, etc. My own neuro wasn’t sure what happened, said it was possibly infection, CMV. I have never had that, and I am about to do blood work to prove it to him. There was no stroke, no ischemia, no drinking, no drugs, no smoking, he said it was not genetic, so all he had left was infection. My second daughter had no ultrasounds and is perfectly healthy, not one issue. I know that ultrasounds harm, just wondering if this could possibly be the answer you were looking for. For me it has been bittersweet. I feel as if I should have known, that I allowed this to happen by not knowing, by not researching well enough. I only hope that one day ultrasounds will be removed completely from obstetrics.

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    1. Hi Carisa-
      Check out Part 2 of my story. I did bring this topic up and cited the same Chinese studies that you are referring to. It’s another issue of a potentially beneficial procedure or product being over- and incorrectly-used and abandonment of the precautionary principle.
      ~Lila

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