A ter­ri­fy­ing, rare com­pli­ca­tion

The risk of a measles sur­vivor get­ting fa­tal dis­ease SSPE shows need for vac­ci­na­tions, med­i­cal ex­perts say.

Los Angeles Times - - LOS ANGELES - By Rong- Gong Lin I I ron. lin@ latimes. com Twit­ter: @ron­lin

Measles is com­monly thought to be a one- time deal: Get it once, sur­vive and you’re im­mune for life.

But like a Tro­jan horse, the virus can f ind a way to hide from a baby’s un­de­vel­oped im­mune sys­tem. The baby will sur­vive, but within his or her body, a weak­ened form of the measles lurks, be­gin­ning to in­fect the brain.

Over the en­su­ing years, the dis­ease gets stronger. Then the in­fected per­son, long past in­fancy, ex­pe­ri­ences mood swings and be­hav­ioral prob­lems. Con­vul­sions, coma and death fol­low.

There is no cure. It is al­ways fa­tal.

There were at least 11 cases of this deadly com­pli­ca­tion, known as SSPE, or sub­a­cute scleros­ing pa­nen­cephali­tis, af­ter the 1988- 91 measles epi­demic in the United States, which in­fected more than 55,000.

Dr. James Cherry, pri­mary editor of the Text­book of Pe­di­atric In­fec­tious Dis­eases and a UCLA pro­fes­sor, said the com­pli­ca­tion un­der­scores the need for measles vac­ci­na­tion rates to re­main as high as pos­si­ble, as in­oc­u­la­tions have fallen in the last decade.

“Measles is not a be­nign dis­ease,” Cherry said. And SSPE, he said, is a “hor­ri­ble dis­ease.”

The most vul­ner­a­ble to get­ting SSPE are those younger than 2, who have an un­de­vel­oped im­mune sys­tem. Es­pe­cially at risk are ba­bies too young to get their f irst measles shot, which hap­pens at 12 months.

That’s what hap­pened to Ra­mon “Ju­nior” Cortes, who was born in Or­ange County 26 years ago.

His mother, Marissa Cortes- Tor­res, was 24 when she gave birth to him. When Ju­nior was a month old, Cortes- Tor­res be­came very ill.

Doc­tors didn’t fig­ure out she had con­tracted measles un­til the baby fell ill. ( Cortes- Tor­res had been vac­ci­nated in the 1960s, when mis­takes were of­ten made in ad­min­is­ter­ing the newly in­tro­duced in­oc­u­la­tion.)

The in­fant was in the hos­pi­tal for two months, hooked up to tubes, strug­gling to breathe.

By the time Ju­nior was 3 months old, he seemed to have re­cov­ered.

Years later, in kinder­garten in Es­con­dido, he would stand when a teacher told him to sit. He strug­gled to add. At home, he would ar­bi­trar­ily take clothes out of draw­ers. When he biked or roller- bladed, the boy would take sur­pris­ing spills, bruis­ing his legs.

Fi­nally, a neu­rol­o­gist at Rady Chil­dren’s Hos­pi­tal in San Diego said to Cortes-Tor­res, “I’m sorry to tell you: Your son is go­ing to die.”

SSPE, she was told, “at­tacks the ner­vous sys­tem and it de­stroys the brain.”

It was the day be­fore her son turned 7.

Soon, the boy who used to “swim like a lit­tle fish” be­came con­fined to a wheel­chair.

Ju­nior started to suf­fer tremors so se­vere he couldn’t feed him­self. He be­came so frus­trated that he would push his food away and refuse to eat. He had to wear di­a­pers again. Seizures sapped his strength. When he hal­lu­ci­nated, all Cortes- Tor­res could do to try to soothe him was say, “Ju­nior, Ju­nior. Mommy’s here.”

One day, af­ter he turned 9, he laughed while watch­ing “Bar­ney & Friends,” but he wasn’t look­ing at the tele­vi­sion.

“I put my hand in front of his eyes,” Cortes- Tor­res said. “He was blind.”

Ju­nior breathed his last breath a month later, on his mother’s lap.

There have been at least 16 cases of SSPE in Cal­i­for­nia since 1998, which is likely an un­der­count be­cause not all cases may be di­ag­nosed and they aren’t re­quired to be re­ported to the state, ac­cord­ing to the Depart­ment of Public Health. There are sev­eral sus­pect cases that have not been con­firmed.

Seven of the 16 con­firmed cases in­volved peo­ple born in the United States. The nine other cases in­volved peo­ple born out­side of the coun­try who fell ill with SSPE in Cal­i­for­nia.

Kath­leen Har­ri­man, chief of the state’s Vac­cine-Pre­ventable Dis­eases Epi­demi­ol­ogy Sec­tion, said she of­ten hears from peo­ple who say that get­ting a dis­ease like measles nat­u­rally is best.

“I can’t even tell you how many times I’ve heard that … ‘ My child will be f ine, be­cause I feed them re­ally good food and they’re well- nour­ished and so they will sur­vive measles,’ ” Har­ri­man said. “This is a clear ex­am­ple where it’s not bet­ter to get a nat­u­ral in­fec­tion.”

Of­fi­cials say they hear a re­port about SSPE about once a year in Cal­i­for­nia.

In the Bay Area, a 4- yearold boy is cur­rently dy­ing of SSPE, said Dr. Cather­ine Son­quist For­est, med­i­cal di­rec­tor of the Stan­ford Health Care clinic in Los Al­tos.

The boy, born in the United States, was only 5 months old when he was in­fected with a se­vere vi­ral ill­ness. Af­ter he turned 3, the once- healthy child be­gan to strug­gle with be­hav­ioral prob­lems and seizures. Soon he was di­ag­nosed with SSPE.

He is now in hos­pice care. His eyes are open, but he can no longer move on his own and can­not re­spond to com­mands.

“He was ex­posed be­cause other peo­ple weren’t im­mu­nized,” For­est said.

This month, For­est re­counted the boy’s di­ag­no­sis to a Cal­i­for­nia Assem­bly com­mit­tee on health. In a let­ter, she urged law­mak­ers to re­quire that chil­dren, bar­ring an al­lergy or other med­i­cal rea­son, be vac­ci­nated as a con­di­tion of en­try into school.

The Assem­bly passed the bill, SB 277, on Thurs­day. It must re­turn to the Se­nate for an ex­pected ap­proval of mi­nor amend­ments, and then would be sent to Gov. Jerry Brown for his sig­na­ture. It is un­clear whether he will sign the mea­sure.

“As the mother of my pa­tient told me last week,” For­est wrote, “‘ My child is dy­ing be­cause some­one who chose not to be im­mu­nized ex­posed my vul­ner­a­ble baby, and noth­ing can be done to save him.’ ”

‘ He was ex­posed be­cause other peo­ple weren’t im­mu­nized.’ — Dr. Cather­ine Son­quist For­est, on a 4- year- old pa­tient at the Stan­ford clinic in Los Al­tos

Allen J. Schaben Los An­ge­les Times

MARISSA CORTES- TOR­RES holds a photo of her son Ra­mon “Ju­nior” Cortes, who died in 1998 af­ter de­vel­op­ing a fa­tal dis­ease stem­ming from a case of measles.

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