Special Needs, Special Horses: A Guide to the Benefits of Therapeutic Riding

Chapter 26: Ben—Infantile Seizures

173 Chapter Twenty-Six Ben—Infantile Seizures Hemispherectomy.฀What฀a฀chilling฀word.฀Probably฀one฀most฀of฀us฀ have฀not฀heard฀before.฀Yes,฀it฀means฀what฀it฀sounds฀like—removing฀onehalf ฀of฀the฀brain.1฀ Imagine฀the฀heartbreak฀of฀being฀told฀your฀beautiful฀ two-year-old฀son฀needed฀a฀hemispherectomy.฀This฀is฀what฀happened฀to฀ the฀parents฀of฀Benjamen฀Schwalls,฀Michael฀and฀Michelle฀of฀Fort฀Worth,฀ Texas.฀After฀hearing฀of฀Ben’s฀dramatic฀surgery฀and฀recovery,฀I฀arranged฀ to฀watch฀him฀ride฀while฀his฀father฀told฀me฀his฀story. When฀Ben฀was฀about฀four฀months฀old,฀the฀Schwalls฀began฀noticing฀ unusual฀body฀movement฀and฀his฀grandmother฀thought฀he฀might฀be฀having ฀mild฀seizures.฀The฀pediatrician฀diagnosed฀reflux฀until฀two฀or฀three฀ months฀later฀when฀the฀condition฀worsened฀and฀it฀became฀apparent฀that฀ an฀Electroencephalogram฀(EEG)฀was฀necessary.฀The฀test฀confirmed฀the฀ baby฀was฀having฀seizures. “The฀diagnosis,”฀Michael฀Schwalls฀said,฀“was฀infantile฀spasms,฀a฀ rare฀form฀of฀seizure.฀When฀the฀doctor฀gave฀us฀the฀bad฀news,฀he฀threw฀ a฀lot฀of฀percentages฀at฀us฀about฀what฀to฀expect,฀indicating฀the฀disease฀ would฀likely฀be฀debilitating,฀if฀not฀deadly.฀The฀cause฀was฀never฀determined ,฀but฀we฀were฀told฀it฀was฀not฀genetic,฀therefore฀we฀need฀not฀be฀ hesitant฀to฀have฀more฀children.”฀Schwalls฀recalled฀that฀the฀unusual฀activity ฀started฀shortly฀after฀Ben฀received฀his฀second฀diptheria/pertussis/฀ tetanus฀(DPT)฀shot,฀but฀no฀official฀connection฀was฀made. Ben’s฀parents฀took฀him฀to฀several฀other฀doctors.฀In฀this฀situation฀ who฀wouldn’t฀hope฀to฀find฀an฀opinion฀not฀so฀devastating?฀But฀they฀all฀ horse2.indd฀฀฀173 3/11/05฀฀฀2:10:43฀PM PROFILES 174 came฀to฀the฀same฀conclusion.฀Various฀drugs฀were฀available฀for฀controlling ฀ the฀ condition฀ and฀ were฀ prescribed.฀ The฀ Schwalls฀ tried฀ them฀ all,฀ even฀one฀they฀managed฀to฀obtain฀which฀was฀not฀yet฀approved฀in฀the฀ United฀States.฀ “Some฀of฀the฀medication฀seemed฀to฀help฀a฀bit,฀but฀from฀age฀seven฀ months฀to฀three฀years,฀Ben฀suffered฀anywhere฀from฀ten฀to฀thirty฀visible฀ seizures฀a฀day,”฀Schwalls฀said.฀“We฀also฀tried฀cranial฀manipulation,฀a฀ treatment฀to฀insure฀the฀head฀and฀brain฀are฀shaped฀correctly,฀and฀used฀ during฀a฀child’s฀first฀year฀and฀a฀half฀before฀the฀bone฀has฀hardened.” Approaching฀his฀third฀birthday฀in฀1996,฀Ben฀wasn’t฀gaining฀ground.฀ He฀had฀no฀vocabulary฀and฀did฀not฀walk.฀He฀was฀able฀to฀use฀his฀arms฀ and฀hands฀freely,฀and฀could฀pull฀himself฀up฀by฀a฀table,฀but฀his฀capabilities ฀were฀diminishing. “His฀doctor฀knew฀we฀were฀trying฀to฀be฀aggressive฀in฀Ben’s฀treatment฀ and฀referred฀us฀to฀a฀surgeon฀in฀Dallas,฀who฀recommended฀a฀hemispherectomy ,”฀Schwalls฀said. “There฀being฀two฀sides฀of฀the฀brain,฀they฀didn’t฀know฀which฀one฀ triggered฀ what.฀ If฀ one฀ side฀ generates฀ seizures,฀ the฀ other฀ follows,฀ the฀ electrical฀impulses฀jumping฀around฀as฀they฀do,฀so฀it฀took฀a฀lot฀of฀testing฀ to฀determine฀the฀source.฀Something฀called฀a฀Positron฀Emission฀Tomography ฀(PET)฀scan,฀which฀shows฀moving฀matter฀and฀pinpoints฀different฀ blood฀flows,฀helped฀narrow฀it฀down.”฀The฀surgery฀was฀a฀very฀drastic฀ treatment฀to฀be฀sure,฀with฀a฀high฀risk฀factor.2 In฀a฀study฀at฀John฀Hopkins,฀fifty-two฀hemispherectomies฀were฀performed ฀from฀1975฀through฀1994.฀Three฀patients฀did฀not฀survive฀the฀surgery ,฀and฀a฀fourth฀died฀of฀unrelated฀causes.฀Of฀the฀remaining฀forty-eight,฀ ninety-six฀percent฀became฀seizure-free.฀But฀only฀forty-four฀percent฀could฀ function฀in฀their฀age฀appropriate฀class,฀or฀work฀independently.฀Eighteen฀ recovered฀with฀semi-independence,฀and฀nine฀were฀pronounced฀lifetime฀ dependent.3 ฀ A฀tough฀decision฀indeed.฀Ben’s฀parents฀wanted฀him฀to฀have฀a฀chance฀ at฀the฀best฀life฀possible,฀and฀the฀future฀likelihood฀of฀continuing฀seizures฀ outweighed฀the฀risk฀of฀surgery.฀They฀signed฀the฀consent. In฀ an฀ eight-hour฀ operation,฀ originally฀ estimated฀ to฀ be฀ five฀ or฀ six฀ hours฀and฀requiring฀blood฀transfusion,฀surgeons฀removed฀the฀left฀hemihorse2 .indd฀฀฀174 3/11/05฀฀฀2:10:44฀PM BEN 175 sphere฀of฀Ben’s฀brain.฀The฀aftereffects฀of฀this฀procedure฀were฀similar฀to฀ those฀from฀a฀stroke.฀The฀absence฀of฀left-brain฀function฀caused฀weakness฀ in฀Ben’s฀right฀arm,฀and฀a฀lot฀of฀therapy฀lay฀ahead฀for฀him.฀During฀his฀ recovery฀in฀the฀hospital,฀which฀lasted฀about฀two฀weeks,฀he฀was฀given฀ standard฀rehabilitative฀therapy. ฀After฀his฀release,฀Ben฀continued฀with฀physical,฀occupational,฀and฀ speech฀ therapy.฀ About฀ five฀ or฀ six฀ months฀ into฀ his฀ recovery฀ from฀ the฀ surgery,฀the฀Schwalls฀added฀horseback฀riding...