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Vegas Stronger Champion: Local pediatrician raises awareness about rare disease after his son was diagnosed

Posted at 9:35 PM, Nov 01, 2020
and last updated 2020-11-02 16:45:10-05

LAS VEGAS (KTNV) — Throughout his 16 years, Dr. Henry Ky's son Matthew has had his share of health issues. He is cognitively delayed and has a rare form of epilepsy. But in early June, Dr. Ky said it was like a switch flipped and his sweet, witty boy was gone.

"I lost my son. It's like someone else took over him," said Dr. Ky.

Overnight, Matthew started showing several concerning symptoms - uncontrolled laughter, obsessive thought, a Tourettes-like motor tick in his mouth, anxiety, nightmares, oppositional behavior and physical shaking.

"Within a few weeks, he would stop talking to us," Dr. Ky said of his son. "He would start talking to the ceiling. He said he had a voice in his head.The dream can take over your reality basically."

Dr. Ky and his wife initially thought Matthew may have some kind of mental illness but he said he didn't believe psychiatric disorders came on suddenly. They spoke to several specialists including pyschiatrists and about a month later, Matthew was admitted to the hospital and treated for encephalitis, but the treatment only made him worse.

"When we got home, we hit the low point. He ceased talking to us. He was talking to the ceiling. He was catatonic almost," said Dr. Ky.

Dr. Ky was desperate. He went back to Matthew's pediatrician who recommended a pediatric rheumatologist, who had once treated a patient with a rare disease called Pediatric Acute-Onset Neuro-Pyschiatric Syndrome - or PANS.

"He fit like a glove symptoms for PANS," he said. "They have OCD symptoms. A lot of time they have obsessive talk. Bad dreams. Their sleep hygience, appetite, personal hygience all deteriorate."

Matthew was taken to Summerlin Hospital for two days worth of IVIG.

"Lo and behold, I said to myself, probably nothing going to happen, 7 days after treatment he showed signs of improvement," Dr. Ky said.

Dr. Ky said Matthew began talking to his family again. He was sleeping and eating better too. Three weeks later though, his symptoms came back. Dr. Ky said for severe cases like Matthew's, patients may need monthly IV treatments for six months or longer. But Matthew is getting better and with every treatment, returning to himself.

"I never cried so much in my life, honestly," said Dr. Ky of the last few months. "Usually I try to be pretty tough but it was very heartbreaking."

Dr. Ky believes PANS may be underrecognized. If you recognize these symptoms in your child, Dr. Ky recommends finding a good rheumatologist or immunologist and pyschiatrist to address the behaviors.

For raising awareness about a rare disease and sharing his important story, Dr. Ky is our Vegas Stronger Champion. Vegas Stronger Champion is sponsored by Findlay Automotive.