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OHSU teams diagnose, treat young child with mysterious, potentially deadly condition

‘You must never give up and never stop believing that your child will get better,’ says father; Spanish-speaking family fought to be heard, found support at OHSU
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An OHSU pharmacy technician works with a non-English speaking patient to identify the appropriate language for interpretation services. OHSU health care teams diagnosed 4-year-old Frank Sanchez-Cacatzum with autoimmune encephalitis after his Spanish-speaking parents had felt dismissed by other health care providers. (OHSU/Christine Torres Hicks)
An OHSU pharmacy technician works with a non-English speaking patient to identify the appropriate language for interpretation services. OHSU health care teams diagnosed 4-year-old Frank Sanchez-Cacatzum with autoimmune encephalitis after his Spanish-speaking parents had felt dismissed by other health care providers. (OHSU/Christine Torres Hicks)

Catarina and Francisco Sanchez-Cacatzum were concerned when they noticed significant and abrupt behavioral changes in their 4-year-old son, Frank.

Usually a happy, energetic and even-tempered child, Frank suddenly wasn’t sleeping at night, regressed in his potty training, and began acting angry and belligerent.

The Sanchez-Cacatzums, a Spanish-speaking family, took Frank to three different emergency departments seeking answers. One visit resulted in a recommendation to seek psychiatric care for suspected trauma, while others thought the behaviors may be the result of severe insomnia; they prescribed Frank medicine to help him sleep, and sent them on their way.

But Frank’s symptoms only worsened, and by the next week, he was completely unable to speak.

Now desperate for answers, his parents brought him to their primary care pediatrician, who recommended he be sent to OHSU Doernbecher Children’s Hospital to receive a comprehensive evaluation, which they hoped would get him closer to a diagnosis.

“As parents, this situation was not easy for us,” Catarina said through a Spanish-language interpreter. “We had gone to three different health clinics, but I refused to accept what they were saying, because I knew there was something more serious going on with my son.”

From the moment Frank arrived at OHSU Doernbecher, efforts to determine his condition required expertise and collaboration across various specialties, including family medicine, emergency medicine, urology and neurology. The care team also included an interpreter, Kyle Pinniger, who was essential to ensuring the Sanchez-Cacatzums received accurate and comprehensive information about their son’s care, and were able to ask questions and voice concerns.

After receiving a full medical workup — including numerous blood tests, a spinal tap and MRI — the care team determined Frank was suffering from anti-NMDAR encephalitis, a specific type of autoimmune encephalitis in which the body’s immune system attacks the brain and causes severe inflammation. The disease worsens over time, and if left untreated, can quickly become serious. It may lead to coma or permanent brain injury, and in some cases, can be fatal.

Miles Fletcher, M.D. (OHSU)
Miles Fletcher, M.D. (OHSU)

“Frank and his family came to us feeling pushed away and not listened to by the medical system, so it was really important to us that when they arrived at OHSU, their concerns were fully addressed,” said Miles Fletcher, M.D., a resident physician in family medicine in the OHSU School of Medicine, who served as a member of Frank’s initial care team.

“Autoimmune encephalitis progresses quickly,” Fletcher said. “When things are moving fast, it’s especially important to make sure families have the resources and support they need to feel comfortable and confident in their child’s care.”

In close partnership with the pediatric neurology team, Frank’s care team began a treatment plan that included steroids to reduce brain inflammation and the immune system’s response, and intravenous immunoglobulin, an IV drip to decrease the effect of the harmful antibodies.

Frank showed incredible signs of improvement within a few days. After about a week, he had returned to his normal self.

Maria Xiang (OHSU)
Maria Xiang, M.D. (OHSU)

“Seeing a sudden, unknown change in your child’s health can be frightening, so it’s incredibly rewarding to be able to provide those answers for a family,” said Maria Xiang, M.D., assistant professor of pediatric neurology in the OHSU School of Medicine, OHSU Doernbecher Children’s Hospital, who served a member of Frank’s initial care team and now provides ongoing care for his condition.

“Symptoms of this condition are often vague and can be confused for something else, so it takes a lot of time and effort to get to a proper diagnosis,” Xiang said. “But that’s our job as a medical team to ask the right questions and explore all options until we can find a way to help that child who needs us.”

Frank is now healthy and thriving at home, and loves to smile, laugh and play with his parents. He will continue to receive follow-up care at OHSU for the next several years, to ensure there are no long-term complications as a result of his condition.

The Sanchez-Cacatzums say this was life-changing experience for them, one that can remind every family about the importance of hope.

“What we went through changed our lives and left a permanent mark,” Francisco said through a Spanish-language translator. “We’re so grateful to the doctors at OHSU who helped us through it.

“I want parents to know that if you notice something isn’t right with your child, trust your instinct, because those moments that you’re hesitating could make a big difference. You must never give up and never stop believing that your child will get better.”

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