A mom shared footage on TikTok showing the rare symptom that hinted at the heartbreaking diagnosis that was to come. In August 2024, two weeks before her daughter Posie’s first birthday, Christie Seibold’s family received the news that would change their lives.
“Posie was diagnosed with Stage 2 neuroblastoma with associated Opsoclonus-myoclonus-ataxia syndrome (OMAS),” Seibold told Newsweek.
Posie had cancer, with her condition further complicated by OMAS, an autoimmune disorder that affects the nervous system, often triggered by the presence of a tumor or viral infection. OMAS is characterized by new movements of the limbs and eyes in young children and other abnormal behaviors such as difficulty talking or irregular sleep.
“When Posie was first diagnosed, at 11 months old, she lost all of her attained abilities, like being able to crawl, walk, eat, or use her hands. All due to OMAS,” Seiblod said. “She suffered from constant tremors, very similar to what Parkinson’s looks like, and rapid eye movements. It was extremely scary, and it was debilitating. Aside from her cancer, OMAS is a very scary diagnosis. And she can fall into a relapse at any time.”
She didn’t know it at the time, but Seibold had filmed Posie’s eyes seemingly “dancing” a few days before her diagnosis.
Dr. Juan Vasquez, a pediatric hematologist and oncologist at Yale Cancer Center, told Newsweek: “Neuroblastoma can present with a variety of symptoms, and early signs may be subtle. One rare but well-known associated symptom is opsoclonus-myoclonus syndrome (OMS), sometimes referred to as ‘dancing eyes.’”
OMS and OMAS are often used interchangeably to describe the same rare neurological disorder. However, OMAS is a more specific term that includes the ataxia component, which refers to the loss of muscle control or coordination of movements.
“This happens when the immune system mistakenly attacks the nervous system in response to the tumor, leading to rapid, involuntary eye movements and jerky limb movements,” Vasquez said.
In that brief, heartbreaking moment, Seibold captured her daughter’s “dancing eyes” on camera. Determined to “bring awareness to neuroblastoma as well as OMAS,” she posted the clip to her TikTok @christiemariesei. The clip went viral, amassing over 3 million views.
That’s all Seibold ever wanted from it. She acknowledges that OMAS is “very rare” but believes it is crucial for parents to “know the signs” and seek treatment as soon as possible. If this helps one family do that, it’s been worth it.
Vasquez said: “Only a small percentage of children with neuroblastoma develop OMS. However, in children who do have OMS, nearly half are found to have an underlying neuroblastoma. Because of this strong link, any child diagnosed with OMS should be screened for neuroblastoma as early as possible to ensure early detection and treatment.”
Seibold and her family live close to Seattle Children’s Hospital and were able to get Posie the treatment she needed.
“Posie had her tumor, adrenal gland and surrounding lymph nodes removed back in August at Seattle Children’s Hospital. She has been in remission from neuroblastoma for 6 months now,” Seibold said.
Her daughter’s treatment is ongoing and will be for the foreseeable future.
“Posie had a port placement surgery recently. She received IVIG infusions once a month, Rituximab infusions every 6 months and monthly steroid pulses to weaken her immune system so it doesn’t continue attacking her central nervous system. She will continue to be on that medication for years,” Seibold said.
“As far as her cancer goes, she gets sedated MRIs every 3 months and regular blood labs to make sure her cancer has not returned.”
Vasquez said that while neuroblastoma is a rare cancer, it is the most common tumor in infants and one of the most frequent cancers in young children, with around 700 new cases diagnosed each year, primarily in children under the age of five.
Recognizing the symptoms and seeking a prompt diagnosis is nevertheless crucial.
Symptoms Parents Should Look Out For
Neuroblastoma is a cancer that arises from immature nerve cells. It most commonly occurs in the adrenal glands, which are located right above the kidneys, or in nerve tissue along the spine, chest, abdomen, or pelvis. Because it can occur in different parts of the body, symptoms vary.
“If the tumor forms in the abdomen, which is most common, parents might notice a firm lump, swelling, or complaints of pain,” Vasquez said. “If the tumor is near the spine, it may press on nerves, leading to weakness, difficulty walking, or loss of bladder or bowel control. Other signs can include changes in the eyes and face.”
“Some children develop what’s called Horner’s syndrome if the tumor affects nerves in the neck. This can cause one eyelid to droop, the pupil of one eye to appear smaller, and reduced sweating on one side of the face,” he said.
“Another sign to watch for is ‘raccoon eyes,’ which are dark circles or bruising around the eyes that occur when the tumor spreads to the bones of the skull. Lastly, prolonged unexplained fevers and anemia can also be warning signs.”
Vasquez noted that some of these symptoms can occasionally be mistaken for common childhood issues. That’s why discussing persistent or unusual symptoms with a doctor is important.
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