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.
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.