May 19, 2016- The Huffington Post

A little boy diagnosed with a rare epilepsy syndrome now has doctors around the world — and supportive Facebook users — keeping up with his condition.

In March, Maryland 5-year-old Cameron Longley was admitted to the hospital after having seizures that seemed to be prompted by a fever. At first, doctors couldn’t determine the boy’s diagnosis. As physicians tried different tests, his parents started a Facebook page for him and began sharing posts with the hashtag #AnswersForCameron. The page includes photos of the boy in the hospital as well as updates on his symptoms, which have included a collapsed lung, a rash, a swollen tongue and kidney issues.

A little boy diagnosed with a rare epilepsy syndrome now has doctors around the world — and supportive Facebook users — keeping up with his condition.

In March, Maryland 5-year-old Cameron Longley was admitted to the hospital after having seizures that seemed to be prompted by a fever. At first, doctors couldn’t determine the boy’s diagnosis. As physicians tried different tests, his parents started a Facebook page for him and began sharing posts with the hashtag #AnswersForCameron. The page includes photos of the boy in the hospital as well as updates on his symptoms, which have included a collapsed lung, a rash, a swollen tongue and kidney issues.

He is now at Children’s National Medical Center in Washington, D.C., where Dr. Elizabeth Wells is the medical director of inpatient neurology. Wells told The Huffington Post that Cameron didn’t respond to the initial seizure treatment he received from doctors, which later helped clue her in on a specific diagnosis. After running several tests, the team at Children’s National Medical Center has determined that Cameron meets the criteria for FIRES, or febrile infection-related epilepsy syndrome. Part of its diagnosis includes not responding to traditional treatment for seizures.

According to Wells, less than 100 cases of FIRES have been reported worldwide. Because of its rarity, the medical center has shared information about Cameron’s condition with doctors around the world. His parents are using the Facebook page they set up to look for more answers and are glad the hospital is asking for help as well.

“I feel like this hospital is willing to reach out to other avenues and not just try to keep it in house and solve the problem on their own,” Zarinah Cuffee, Cameron’s mom, said.

The hospital also implements family-centered rounds that focus on including families as much as possible in patients’ cases. These rounds can include patients, their families, physicians, nutritionists, therapists and social workers. Wells explained that Children’s National isn’t the only hospital to incorporate family-centered rounds, but the way they provide them for patients with brain diseases and complex medical diseases is what makes the hospital stand out. Referring to the rounds, Shaun Longley, Cameron’s dad, said “it’s nice to not feel out of the loop.”

Other people don’t want to feel out of the loop either when it comes to Cameron. As of Thursday more than 1,700 people are following the Facebook page set up to share updates about his health and progress now that he’s been responding to treatment. Shaun told HuffPost they’re preparing for his son to transfer to a rehabilitation center next week, and according to a recent Facebook post, Cameron and his family are “taking it one day at a time.”

 

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