Mass. girl recovering from rare, serious illness linked to flu

A Massachusetts mother is sharing her family’s frightening experience with the flu after her 4-year-old daughter developed a rare but potentially deadly complication of the virus.

Caitlin Lyons of Ashland told CBS News that her daughter, Althea, came to her in the middle of the night, complaining of dizziness. She was taken to Mass General Hospital, where doctors became concerned after diagnosing her with acute necrotizing encephalopathy (ANE).

Though rare, ANE is linked to common viral infections such as the flu and causes rapid brain swelling that can lead to lasting brain damage or death.

According to Boston Children’s Hospital, symptoms of ANE can develop quickly and often begin with signs similar to the flu, including fever, congestion, cough, vomiting, or diarrhea. As the condition progresses, symptoms may become severe and life-threatening, with some patients losing consciousness, experiencing seizures, or developing serious breathing problems.

A study from Boston Children’s Neuroimmunology Center found that ANE has a mortality rate of about 27 percent.

“I just remember [the doctor] saying, ‘She’s very sick, I’m very concerned,’” Lyons told CBS. “And my only question was, ‘Is she going to live?’ And he said, ‘I hope so.’”

Lyons said her daughter’s age may have helped her survive. 

“Thank God she’s the age that she is — old enough to fight the flu, which she had to get over before the swelling could come down, but young enough to have the time to heal, for her brain to heal, because there was damage done,” she told the news station.

Althea is now recovering, Lyons said, but she chose to share her family’s story to raise awareness about the condition.

“I understand they are seeing more cases of this disease, but I think overall it’s still pretty unknown,” Lyons told CBS. 

Her story comes as flu cases continue to surge across Massachusetts this winter. State health officials have reported 66 flu-related deaths so far this season, including four children — two of whom were under the age of 2.

In Boston, confirmed flu cases increased by 126 percent between Dec. 14 and Dec. 27, according to city health officials, with hospitalizations nearly tripling. Flu-related emergency room visits also rose by 135 percent during that period.

“Flu cases are surging in Boston, and we are seeing an uptick in serious cases involving children, including the tragic deaths of two very young children,” said Dr. Bisola Ojikutu, commissioner of public health for the City of Boston. “While the flu is usually mild, it can cause hospitalization and death. Children under the age of 2 are at higher risk.”

Ojikutu urged parents to vaccinate children ages six months and older and to seek immediate medical care if a child with flu symptoms shows signs of severe illness, including trouble breathing, decreased urination, persistently high fever, or extreme lethargy.

Morgan Rousseau is a freelance writer for Boston.com, where she reports on a variety of local and regional news.