Early Turner Syndrome Feeding ExperiencesEarly Turner Syndrome Feeding Experiences Faculty Advisors:...
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Early Turner Syndrome Feeding Experiences Faculty Advisors: Margaret DeRamus, M.S., CCC-SLP, & Debbie Reinhartsen, Ph.D., CCC-SLP Student Presenter: Heather Lam
Transcript of Early Turner Syndrome Feeding ExperiencesEarly Turner Syndrome Feeding Experiences Faculty Advisors:...
EarlyTurnerSyndromeFeedingExperiences
FacultyAdvisors:MargaretDeRamus,M.S.,CCC-SLP,
&DebbieReinhartsen,Ph.D.,CCC-SLP
StudentPresenter:HeatherLam
TurnerSyndrome
• Xchromosomedisordercharacterizedby:– Shortstature– Hearingloss
• Early:conducIve• Late:sensorineural
– Higharchedpalate&retrognathia– LearningdisabiliIes– Ovariandysgenesis
(Zajac,2016;Hjerrils,Motensen,&Gravholt,2008).
Growth
(Frias&Davenport,2003)
TurnerSyndromeFeeding
• DifficulIesduetoinefficientsuckingandswallowingrefluxes– ImpairedoralmotorfuncIon
• DysfuncIonaltonguemovement– Poorlydevelopedchewingskills
• Prevalence:74%– Frombirththrough6months-3yearsofage– Slowrate,poorappeIte,frequentvomit,suck&swallowproblems
– Difficultyintroducingsolids:poorchewing,vomiIng (Donaldson,Gault,Tan&Dunger,2006;Frias&Davenport,2003;
Starke,Wikland,&Moller,2003)
FeedingStudy• In-homeinterview,feedingobservaIon(videorecorded),andFeedingAssessmentSchedule
• MotherofinfantswithTurnerSyndrome– Introducedboblefeedingearlierandsolidslater– Only4of10hadreceivedadviceaboutmanagingfeeding
• InfantswithTurnerSyndrome– Verypoorsuck-swallowsequencecoordinaIon– TonguedysfuncIon:poorchewing,fewerchewingabempts
(Mathisen,Reilly&Skuse,1992).
ResearchQuesIons
• HowcommonareearlyfeedingdisordersingirlswithTurnerSyndrome?
• WhendothesedifficulIesoccur,andwhatcharacterizestroublewithfeeding?
CurrentStudy
• 41parIcipantsfromCIDDTurnerSyndromeClinic,2010-2013– Longitudinal,cross-secIonaldesign
• ClinicalobservaIon,parentquesIonnaire,ScheduleforOral-MotorAssessment
• Ages– Newborn– 6months -24months– 12months -48months
Results
Results
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TotalCasesbySymptom
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12months
24months
48months
Results
Conclusions&ImplicaIons
• Higherrateoffeedingproblemsthanexpectedfromtypicallydevelopinginfants
• UIlityofadapIvefeedingequipment
• EducaIngfamiliesandcareprovidersaboutfeedingconcernsupondiagnosis
TeamMembers
• Family• Client• GeneIcist• Pediatrician• NutriIonist• SpeechLanguagePathologist• LactaIonConsultant
• Counselor• OccupaIonalTherapist
References• Donaldson,M.D.C.,Gault,E.J.,Tan,K.W.,&Dunger,D.B.(2006).
OpImisingmanagementinturnersyndrome:frominfancytoadulttransfer.ArchivesofDiseaseinChildhood,91,513-520.DOI:10.1136/adc.2003.035907
• Frias,J.L.&Davenport,M.L.(2003).Healthsupervisionforchildrenwithturnersyndrome.PEDIATRICS111(3),692-702.DOI:10.1542/peds.111.3.692
• Hjerrils,B.E.,Motensen,K.H.,&Gravholt,C.H.(2008).Turnersyndromeandclinicaltreatment.BriDshMedicalBulleDn86,77-93.DOI:10.1093/bmb/ldn015
• Mathisen,B.,Reilly,S.,Skuse,D.(1992).Oral-motordysfuncIonandfeedingdisordersofinfantswithturnersyndrome.Developmentalmedicineandchildneurology,34(2),141-9.
References• Ramasamy,M.&Perman,J.A.(2000).Pediatricfeeding
disorders.Journalofclinicalgastroenterology,30(1),34-46.
• Ranke,M.&Saenger,P.(2001).Turner’ssyndrome.TheLancet,358,309-314.
• Starke,M.,Wikland,K.A.,&Moller,A.(2003).Parents’descripIonsofdevelopmentandproblemsassociatedwithinfantswithTurnersyndrome:AretrospecIvestudy.JournalofPaediatricDhildhealth39,293-298.
• Zajac,D.(October,2015).CommonSyndromes[PDFSlides].LectureconductedatUniversityofNorthCarolina,ChapelHill,NC
