Mother notices child’s eyes “dancing”—2 days later got here a devastating analysis

A mother shared footage on TikTok exhibiting the uncommon symptom that hinted on the heartbreaking analysis that was to return. In August 2024, two weeks earlier than her daughter Posie’s first birthday, Christie Seibold’s household acquired the information that might change their lives.

“Posie was identified with Stage 2 neuroblastoma with related Opsoclonus-myoclonus-ataxia syndrome (OMAS),” Seibold informed Newsweek.

Posie had most cancers, together with her situation additional sophisticated by OMAS, an autoimmune dysfunction that impacts the nervous system, usually triggered by the presence of a tumor or viral an infection. OMAS is characterised by new actions of the limbs and eyes in younger youngsters and different irregular behaviors resembling issue speaking or irregular sleep.

“When Posie was first identified, at 11 months previous, she misplaced all of her attained talents, like having the ability to crawl, stroll, eat, or use her arms. All because of OMAS,” Seiblod mentioned. “She suffered from fixed tremors, similar to what Parkinson’s seems like, and fast eye actions. It was extraordinarily scary, and it was debilitating. Other than her most cancers, OMAS is a really scary analysis. And she will fall right into a relapse at any time.”

She did not understand it on the time, however Seibold had filmed Posie’s eyes seemingly “dancing” a couple of days earlier than her analysis.

Dr. Juan Vasquez, a pediatric hematologist and oncologist at Yale Most cancers Middle, informed Newsweek: “Neuroblastoma can current with quite a lot of signs, and early indicators could also be refined. One uncommon however well-known related symptom is opsoclonus-myoclonus syndrome (OMS), typically known as ‘dancing eyes.'”

OMS and OMAS are sometimes used interchangeably to explain the identical uncommon neurological dysfunction. Nonetheless, OMAS is a extra particular time period that features the ataxia element, which refers back to the lack of muscle management or coordination of actions.

“This occurs when the immune system mistakenly assaults the nervous system in response to the tumor, resulting in fast, involuntary eye actions and jerky limb actions,” Vasquez mentioned.

In that temporary, heartbreaking second, Seibold captured her daughter’s “dancing eyes” on digital camera. Decided to “carry consciousness to neuroblastoma in addition to OMAS,” she posted the clip to her TikTok @christiemariesei. The clip went viral, amassing over 3 million views.

That is all Seibold ever needed from it. She acknowledges that OMAS is “very uncommon” however believes it’s essential for fogeys to “know the indicators” and search remedy as quickly as doable. If this helps one household do this, it has been value it.

Vasquez mentioned: “Solely a small proportion of youngsters with neuroblastoma develop OMS. Nonetheless, in youngsters who do have OMS, practically half are discovered to have an underlying neuroblastoma. Due to this robust hyperlink, any youngster identified with OMS must be screened for neuroblastoma as early as doable to make sure early detection and remedy.”

Seibold and her household stay near Seattle Kids’s Hospital and had been capable of get Posie the remedy she wanted.

“Posie had her tumor, adrenal gland and surrounding lymph nodes eliminated again in August at Seattle Kids’s Hospital. She has been in remission from neuroblastoma for six months now,” Seibold mentioned.

Her daughter’s remedy is ongoing and might be for the foreseeable future.

“Posie had a port placement surgical procedure lately. She acquired IVIG infusions as soon as a month, Rituximab infusions each 6 months and month-to-month steroid pulses to weaken her immune system so it does not proceed attacking her central nervous system. She’s going to proceed to be on that medicine for years,” Seibold mentioned.

“So far as her most cancers goes, she will get sedated MRIs each 3 months and common blood labs to ensure her most cancers has not returned.”

Vasquez mentioned that whereas neuroblastoma is a uncommon most cancers, it’s the most typical tumor in infants and one of the crucial frequent cancers in younger youngsters, with round 700 new instances identified annually, primarily in youngsters below the age of 5.

Recognizing the signs and searching for a immediate analysis is nonetheless essential.

Signs Mother and father Ought to Look Out For

Neuroblastoma is a most cancers that arises from immature nerve cells. It mostly happens within the adrenal glands, that are positioned proper above the kidneys, or in nerve tissue alongside the backbone, chest, stomach, or pelvis. As a result of it could actually happen in numerous elements of the physique, signs range.

“If the tumor varieties within the stomach, which is most typical, dad and mom would possibly discover a agency lump, swelling, or complaints of ache,” Vasquez mentioned. “If the tumor is close to the backbone, it might press on nerves, resulting in weak point, issue strolling, or lack of bladder or bowel management. Different indicators can embrace adjustments within the eyes and face.”

“Some youngsters develop what’s known as Horner’s syndrome if the tumor impacts nerves within the neck. This could trigger one eyelid to droop, the pupil of 1 eye to look smaller, and lowered sweating on one facet of the face,” he mentioned.

“One other signal to observe for is ‘raccoon eyes,’ that are darkish circles or bruising across the eyes that happen when the tumor spreads to the bones of the cranium. Lastly, extended unexplained fevers and anemia will also be warning indicators.”

Vasquez famous that a few of these signs can sometimes be mistaken for widespread childhood points. That is why discussing persistent or uncommon signs with a health care provider is necessary.