A mother recently took to social media to thank strangers who helped her identify her daughter’s condition. The mother had been regularly sharing videos of her beloved girl who is nonverbal and has autism spectrum disorder. She usually shares tips for traveling with a young child who is on the spectrum. And, it was the warnings from concerned commenters that allowed to her get her daughter the help she needed before it was too late.
Cassie, also known as @travelingthelunaverse on TikTok, says commenters’ special warnings after a video she shared last year allowed her to get her daughter, Luna, some help before it was too late.. The incident happened last year when Cassie shared a video of Luna, who is almost 2. On February 3, she explained how an older video had received a lot of traction. “I shared this video of [Luna] on a little red slide on my social media pages,” she shared.
In the video, Luna can be seen sitting in deep thought or zoned out but worried viewers had a different opinion. “I received a few messages saying: ‘I don’t want to freak you out but that kind of looks like a seizure,'” she recalled. Thus she consulted Luna’s doctor who instructed the pair to see a neurologist. “The first EEG showed no abnormal activity but her neurologist still believed she was having seizures,” said Cassie.
“At first this was diagnosed as a pineal cyst but we got a second opinion and the neurosurgeon said, ‘well, we can’t really tell on the imaging. You need another MRI with contrast to be able to clarify between a cyst and a tumor,” explained Cassie in the video. The mother then revealed that Luna’s absence seizures had been getting severe as the mass grew.
“Her absence seizures are progressing into mild chronic seizures which are more jerky. If this cyst is what is causing these seizures, it makes sense that they’re not shown on the EEG because this is the deepest [part] inside of her brain, it’s the center of the brain where the pineal gland is,” she shared.
But thankfully, she learned that the mass in her head was not a tumor. “Luna’s MRI results were posted and it is a 5 mm pineal cyst. For now, it is not a tumor. It is a cyst and life is good,” she shared.
“Before learning about them, I had no idea that a seizure could be something different than your body falling to the ground and jerking. All I knew about seizures were the stereotypical seizures,” she admitted.
The seizures would last 10-15 seconds and Cassie thought Luna was just taking in sensory information like she does most of the time. Thus, she decided to share the critical information with fellow parents hoping that it would help someone else. “I’m not a professional at all but I’m just sharing our story and our journey. I hope sharing our story helps someone else,” she explained.
Featured Image Source – PrtScr/TikTok