Dystonia Awareness Month: My Toddlers Life with Dystonia
The First Time I Saw Dystonia
The first time I saw dystonia was when my daughter was less than an hour old. At the time, I didn’t know what it was. Her tiny legs were shaking uncontrollably and stiff. The nurses thought it was a seizure, but it wasn’t. It stopped—and nobody mentioned it again. Months later, when she was diagnosed with Alternating Hemiplegia of Childhood, I finally understood. That moment became the start of our journey with dystonia, and why I’m sharing our story during Dystonia Awareness Month.
What Is Dystonia?
Medical definition: A neurological movement disorder characterized by sustained or intermittent involuntary muscle contractions that cause abnormal, repetitive, or twisting movements.
Mother’s definition: Keep reading this story.
Involuntary Movements
Involuntary. Spontaneous. Episodic. These are the words that define Paige’s life at times. She might suddenly become paralyzed—or her muscles contract so painfully that she screams. A toe twitches, then an ankle, then half her body follows. She has no control.
The closest I can compare it to is a charley horse. That sudden, excruciating cramp you can’t stop. Now imagine that pain spreading across an entire limb—or her whole body. That’s dystonia for my daughter.
Stiffening Episodes
Stiffening is probably the most common way dystonia shows up. A child’s neck tilts to one side and won’t move back. Arms twist inward and won’t relax.
For Paige, her body suddenly feels like a rock—rigid, unyielding. She feels it too, and she cries, trying to make it stop. One of the scariest moments was when her jaw locked around her tongue, turning it black. Even her dad couldn’t pry her mouth open. Nothing compares to the helplessness of watching your child’s body stiffen and twist while you can do nothing to ease it.
Twitching and Jerking Movements
When I was younger, I thought twitching was something that happened only to elderly people with Parkinson’s. Now, it’s my baby.
Her toes twitch. The side of her mouth pulls. Her eyes dart. Her fingers look like they’re playing an invisible piano. Sometimes the twitching escalates—her own hand even slaps her face, though she doesn’t intend it. Each limb moves to a different rhythm, all at once, outside her control.
Living With Dystonia
Paige isn’t even the worst case. Sometimes her awareness is reduced, and she doesn’t seem to feel pain. But when she does—it’s unbearable. Her muscles look like they will tear from her body, and I can do nothing but hold her and cry with her.
There are few medicines that help, and hardly any natural remedies. Dystonia is incurable, caused by neurological defects—in Paige’s case, a mutation in the ATP1A3 gene.
A Call for Awareness
Don’t take for granted your child’s voluntary movements. Don’t forget that some parents aren’t crying over colds—they’re crying because for the sixth time this week their child’s body twisted and stiffened, leaving them screaming in agony.
The next time you’re frustrated about giving Tylenol for a fever, remember there are parents begging for even one dose of relief for their child’s relentless pain.
Dystonia Awareness Month is about bringing light to stories like Paige’s. If sharing her journey helps even one person understand or support another family in pain, then awareness is working. May this blog help you to serve someone else, and lessen the burden of someone else suffering in whatever way you can.
Written by a 27 year old with Alternating Hemiplegia of Childhood
