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Vaccines can be given as scheduled &BAC@Small Group DiscussionWhat referrals should be made? What resources might be useful to these new parents? If you had been the pediatrician to break the new to these parents, what techniques could you use to improve their satisfaction? What kind of anticipatory guidance should you give this family? " Summary of ReferralsPCardiology Ophthalmology Audiology Genetics PT/OT/speech >> AZIEP DDD AZEIP CRS QQ, %,Do you remember the referral alphabet soup??Start with A& AZEIP = Arizona Early Intervention Age 0-3 for developmental delay Referral by phone, mail, or in person By PCP, parent, or other caregiver www.de.state.az.us/azeip 480-820-3605 Evaluation begins after referral 4 1!0DBSmall Group DiscussionWhat referrals should be made? What resources might be useful to these new parents? If you had been the pediatrician to break the new to these parents, what techniques could you use to improve their satisfaction? What kind of anticipatory guidance should you give this family? ,5Parent ResourcesRaising AZ Special Kids www.raisingspecialkids.com National Association for Down Syndrome www.nads.org National Down Syndrome Society www.ndss.org Exceptional Parent www.eparent.com 0[ZcZZl) " !03"!0\h#!0!0ECSmall Group DiscussionWhat referrals should be made? What resources might be useful to these new parents? If you had been the pediatrician to break the new to these parents, what techniques could you use to improve their satisfaction? What kind of anticipatory guidance should you give this family? ,TAImproving CommunicationBreaking the News Allow enough time Bring family and child into the room Refer to child by name Use positive language Discuss future and prognosis in a realistic, yet empowering manner Schedule a time for follow-up&Improving CommunicationBreaking the News Allow time for questions Encourage family to write down questions as they come up Validate emotions Put the family in contact with other families or support groups - ASAP&FDSmall Group DiscussionWhat referrals should be made? What resources might be useful to these new parents? If you had been the pediatrician to break the new to these parents, what techniques could you use to improve their satisfaction? What kind of anticipatory guidance should you give this family? "AAnticipatory GuidanceDiscuss the importance of early intervention Discuss risk of recurrent OM, increase risk for URI Discuss family support system, telling other family members/friends Anticipatory GuidancebIf child will need surgery  discuss need for neck films Review need for genetic counseling Hopefully, by following the checklist you have discussed all other systems involved.  Case 24 year old female with Down Syndrome presents to your clinic They have just moved from Iowa She has a history of repaired AV canal defect, speech, developmental delay, and recurrent OM Mom is unsure about services available in Arizona Z!Case 2In addition to the the clinical concerns already discussed, what new concerns arise in a preschool age child? What screening should be done on this 4 year old with Down syndrome? What referrals should be made? How can you answer mom s question about services available? Is there any additional anticipatory guidance that should be given?RZRGESmall Group DiscussionIn addition to the the clinical concerns already discussed, what new concerns arise in a preschool age child? What screening should be done on this 4 year old with Down syndrome? What referrals should be made? How can you answer mom s question about services available? Is there any additional anticipatory guidance that should be given? $SZn''Additional Clinical Concernsn Obstructive Sleep Apnea Atlantoaxial instability Obesity Recurrent OM Eczema School progress and development no IHGSmall Group DiscussionIn addition to the the clinical concerns already discussed, what new concerns arise in a preschool age child? What screening should be done on this 4 year old with Down syndrome? What referrals should be made? How can you answer mom s question about services available? Is there any additional anticipatory guidance that should be given? .SZnE" Screening- Preschool ageCardiac  Continue to monitor symptoms, communicate with cards Endocrine  Yearly TSH, T4 GI  Screen for constipation and treat appropriately Vision  Yearly evaluation by Optho Hearing  Yearly evaluation by Audiology Z$ %"2Screening  Preschool agebENT Recurrent OM (50-70%) OSA  refer to ENT if needed Antlanto-axial instability (5%)  Neck films by age 3, repeat once per decade Screen for behavioral problems Dental Care@Z4ZyZ4y9qIFSmall Group DiscussionIn addition to the the clinical concerns already discussed, what new concerns arise in a preschool age child? What screening should be done on this 4 year old with Down syndrome? What referrals should be made? How can you answer mom s question about services available? Is there any additional anticipatory guidance that should be given? .SZ$! Referrals6Cardiology ENT Ophthalmology Audiology Dental DDD CRS  JHSmall Group DiscussionIn addition to the the clinical concerns already discussed, what new concerns arise in a preschool age child? What screening should be done on this 4 year old with Down syndrome? What referrals should be made? How can you answer mom s question about services available? Is there any additional anticipatory guidance that should be given? .SZ<E&#Services AvailableAge 3 or greater services received through school system Parent must request an evaluation in writing Child should receive an IEP DDD evaluation should also be completed($What more alphabet soup?!Division of Developmental Disabilities Many services provided Family completes application Pediatrician completes medical documentation Apply at DDD office  (602) 870-1721 www.de.state.az.us/ddd 6 !0)&&More alphabet soup& IEP  Individualized Education Program Developed by team involved in child s education, therapies, and care providers Required by law to be provided for those that qualify Progress reviewed yearly or at parent s request KISmall Group DiscussionIn addition to the the clinical concerns already discussed, what new concerns arise in a preschool age child? What screening should be done on this 4 year old with Down syndrome? What referrals should be made? How can you answer mom s question about services available? Is there any additional anticipatory guidance that should be given? $SZE*(Anticipatory GuidanceDiscuss transition to preschool, school performance, interaction with peers It s never too early to talk about the future! Help parents begin to foster appropriate amount of independence early Discuss nutrition and activity -,Case 313 year old female with Down Syndrome here for Well Child Exam Her last year has been unremarkable She plans to participate in Special Olympics Mom has questions regarding puberty.-Case 3What routine screening should be done in this 13 year old? What should you tell mom regarding pubertal development? What anticipatory guidance should you give at this visit?LJSmall Group DiscussionWhat routine screening should be done in this 13 year old? What should you tell mom regarding pubertal development? What anticipatory guidance should you give at this visit? ;t/.*Screening  Age 13-21Annual hearing exam Annual eye exam Annual thyroid studies Screen for constipation Screen for OSA Review nutrition and activity 0/*Screening  Age 13-21Review school progress Review growth and development Review behavioral issues Follow-up on any other consults that have been neededMKSmall Group DiscussionWhat routine screening should be done in this 13 year old? What should you tell mom regarding pubertal development? What anticipatory guidance should you give at this visit? &;9;10Sexual DevelopmentUsually normal sexual development when compared to peers Males are usually sterile, may have low testosterone Approximately 40% of females ovulate >=Sexual DevelopmentIssues of GYN care and reproduction should be addressed early Adolescent should be involved in discussions of development and birth control if appropriate NLSmall Group DiscussionWhat routine screening should be done in this 13 year old? What should you tell mom regarding pubertal development? What anticipatory guidance should you give at this visit? t;21Anticipatory Guidance,Discuss school performance Discuss sexuality and socialization Discuss transition to adulthood and adult care Discuss risk for early onset Alzheimer s42Transition To AdulthoodlVocational planning Living arrangements Transfer to adult medical care Degree of supervision, guardianship k53Vocational PlanningMany adults with Down Syndrome hold steady jobs Preparation for this can start during high school Adolescent should be assessed for appropriate job options Adolescent should be involved in this decisions!Z65Living ArrangementsInstitutionalization once the norm Now most live with parents, in groups homes, or other independent living situations Begin to explore possible options early and discuss with the patient and family76Transition to Adult CareIdentify adult health care provider Establish an uninterrupted flow of care Provide a brief and complete health care summary to the patient and new provider 87Transition to Adult CareProvide list of specialists, medications, equipment, and other services Educate the patient regarding their own health issues and empower them to make decisions if appropriate:8Take Home PointsUse of Down Syndrome specific screening guidelines can improve care Provide support to your patient and family by referrals for services, contacts, and effective communication Always keep in mind the next transition your patient will be making ?> References>AAP Policy Statement  Health Supervision for Children with Down Syndrome. Pediatrics. Feb 2001. AAP Policy Statement. The Medical Home. Pediatrics, 110(1), 184-186. Girgus A., Sanson-Fisher, R.W. (1995). Breaking Bad News: Consensus Guidelines for Medical Practitioners. Journal of Clinical Oncology, 13, 2449-56. Nickel, Robert E. & Desch, Larry W. (2000) The Physicians Guide to Caring for Children with Disabilities and Chronic Conditions. Paul H. Brookes Publishing Company. (www.pbrookes.com) Northouse, P.G., & Northouse, L.L. (1992). Health communication strategies for health professionals, 2nd Ed. Norwalk, CT: Appleton & Lange, pp. 73-117. Pantell, R. H., Stewart, T.J., Dias, J.K., Wells, P., & Ross, A.W. (1982). Physician Communication with Children and Parents. Pediatrics, 70(3), 396-402. Wilson, Golder and Cooley, Carl. Preventive Management of Children with Congenital Anomalies and Syndromes 2000 d*""t"";"T"e"8""*"" "q"  {~e$!0l ` TTrff` TTrh-[ʬ` 333MMM` TTr8r-[ffV>` TTrQ[-[` TTrTz<7FӥaG|` TTr4eXQƄΗ|aHb>?" dd@,? 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