Tourette’s syn­drome an in­di­vid­u­al­ized dis­or­der

North Penn Life - - OPINION -

Sa­muel John­son, the 18th cen­tury word-mas­ter who wURWH A DLFWLR­naUy RI WKH bnglish ian­guage, had it. Amer­i­can hu­morist and New York Times best-sell­ing auWKRU DaYLd 6HdaULs dRHs. Mozart pos­si­bly did and as Philadel­phia Phillies fans may re­call, Jim bisen­re­ich does.

“ft” Tourette’s syn­drome, a neu­ro­log­i­cal dis­or­der that causes sud­den, in­vol­un­tary, repet­i­tive move­ments — blink­ing, shoul­der-shrug­ging, jerk­ing an arm — and sounds — hum­ming, throat-clear­ing, yelling out a word or phrase — de­scribed as tics. More com­plex tics in­clude com­bi­na­tions of move­ments.

There is some be­lief that a char­ac­ter­is­tic of the syn­drome may lie, in part, be­hind the suc­cess of some with TS.

“lften Tourette’s syn­drome goes along with dis­LnKLELWLRn,” saLd DU. -aPHs Cook, a 12-year Abing­ton Me­mo­rial Hos­pi­tal neu­rol­o­gist who has worked with TS pa­tients for about 15 years. “7KHy OaFN a fiOWHU WKaW NHHSs you from say­ing in­ap­pro­pri­ate things. ft’s felt a lot [of those with TS] are creative be­cause they don’t have that fiOWHU.

“There’s a lot of ev­i­dence peo­ple with Tourette’s have gained promi­nence in the per­form­ing arts.”

Ac­cord­ing to a 200T study Ey WKH CHnWHUs IRU DLsHasH Con­trol and Preven­tion,

is three of ev­ery 1,000 chil­dren age S through 1T in the United States, or about 148,000, have been di­ag­nosed with Tourette’s syn­drome. lther stud­ies es­ti­mate the rate at six per 1,000 stu­dents, acFRUdLnJ WR WKH CDC.

The National fn­sti­tute of 1HuURORJLFaO DL­sor­ders and Stroke es­ti­mates 200,000 Amer­i­cans have the most se­vere form of TS, with as many as one in 100 hav­ing milder symp­toms such as chronic mo­tor or vo­cal tics.

Cook, who said he thinks the syn­drome is un­der­diag­nosed, said one find­LnJ Kas FRnFOudHd WKaW fiYH RuW of 100 school-age boys meet more cri­te­ria for Tourette’s. The in­ci­dence in males is es­ti­mated at three times that of fe­males.

There is no lab test or scan avail­able to di­ag­nose TS and some peo­ple don’t even rec­og­nize they have it in a mild form, he said. Cur­rent think­ing is that it is caused by some dis­rup­tion in com­mu­ni­ca­tion be­tween the deeper ar­eas of the brain that con­trol move­ment and the higher ar­eas that reg­u­late vol­un­tary move­ment.

The di­ag­no­sis is made through a clin­i­cal his­tory and ob­ser­va­tion, with onset usu­ally be­tween ages T and 15, Cook said. The tics, which vary in type and oc­cur­rence, “can wax and wane,” and “about twothirds of the man­i­fes­ta­tions go away by late ado­les­cence,” age 1T or 18, he said.

“ft’s al­most cer­tainly ge­netic,” Cook said. “ft tends to run in fam­i­lies,” with the in­ci­dence be­ing “10 times higher than in the gen­eral pop­u­la­tion.”

Those who ex­hibit in­vol­un­tary swear­ing, as­so­ci­ated in “the pop­u­lar imag­i­na­tion” as char­ac­ter­iz­ing TS, com­prise only about 10 per­cent to 15 per­cent of those with Tourette’s, Cook said.

A ma­jor­ity of those with TS have an as­so­ci­ated dis­or­der such as ob­ses­sive com­pul­sive dis­or­der, at­ten­tion-deficitLhy­per­ac­tiv­ity dis­or­der, ADD, an[LHWy, dHSUHssLRn or im­pulse con­trol, Cook said.

But the symp­toms of Tourette’s, and sub­se­quently the treat­ment — “it has to be com­pletely in­di­vid­u­al­ized to what the per­son needs” — vary widely, he said.

“ff you know one pa­tient with Tourette’s syn­drome, you know one pa­tient with Tourette’s syn­drome,” Cook said.

While the tics are in­vol­un­tary, pa­tients “de­scribe an urge or pre­mo­ni­tion of it com­ing on and a feel­ing of re­lief af­ter­ward,” he said. Stress or lack of sleep might bring on the tics and fo­cus­ing on some­thing might keep them at bay. But in the lat­ter case, with the re­duced oc­cur­rence ended, the tics “may come at greater fre­quency un­til they sort of get it out of their sys­tem,” he said.

For those who need help in func­tion­ing with TS, med­i­ca­tions or cog­ni­tive be­hav­ior ther­apy can be pre­scribed, he said. Many times the med­i­ca­tions are needed to deal more with the ac­com­pa­ny­ing dis­or­ders, he noted.

“Some are pur­su­ing newer treat­ments, like deep brain stim­u­la­tion for those with in­tractable TS,” Cook said. blec­trodes are placed in the deeper ar­eas of the brain with wires down into the chest to a pace­maker-like de­vice that sends con­stant elec­tronic im­pulses and re­stores the bal­ance of cir­cuitry, he said.

Cook, who treats adults, said by the time a pa­tient gets to him, the per­son has usu­ally had TS for 10 years and learned how to deal with it.

“ff they can’t sup­press the tics or it’s in­ter­fer­ing with so­cial or oc­cu­pa­tional func­tion­ing, they usu­ally come to me,” he said.

Usu­ally he will pre­scribe a med­i­ca­tion, but “you have to keep ex­pec­ta­tions re­al­is­tic,” he said. “Med­i­ca­tions cut down the rate of tics, but don’t elim­i­nate them.”

To Your Health Linda Finarelli

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