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What referrals should be made? How do you answer mom s question? What anticipatory guidance should you give this family? What other resources are available to the family?  Z3 ResourcesSpina Bifida Association of America (SBA) www.sbaa.org Association for Spina Bifida and Hydrocephalus www.asbah.demon.co.uk March of Dimes www.modimes.org Raising AZ Special Kids www.raisingspecialkids.com Zn   !0+7!0h}!0!0Case 23 year old female with spina bifida presents for a well child check History is significant for VP shunt She does not ambulate and has some mild developmental delays Mom is concerned about starting preschool Case 2Are there any additional secondary conditions for which you should screen? How should you address mom s concerns about starting preschool? What referrals should be made? What other anticipatory guidance should be given?LGCase 2Are there any additional secondary conditions for which you should screen? How should you address mom s concerns about starting preschool? What referrals should be made? What other anticipatory guidance should be given? KSecondary ConditionsContinued concerns: Hydrocephalus, shunt function Bladder function, renal function Development and growth Orthopedic conditions Vision and Hearing &Secondary ConditionsVAdditional Concerns Tethered cord Renal function Learning disorders Behavior disorders&CC Tethered CordOccurs in 10% of patients More common in lower lesions Scarring/adhesions at surgical site Back pain, leg pain, worsening gait, worsening bowel, bladder function Surgical evaluation is needed Renal FunctionMay develop impaired renal function due to reflux, recurrent infection, hydronephrosis causing scarring Decrease with early screening and intervention Screen with blood pressure Urology follow-upHnCognitive Function:IQ not greatly affected Early shunting can improve outcome+'Cognitive FunctionStrengths include: verbal, reading, spelling Difficulties: math, visual, perceptual skills BUT every child is different! Formal evaluation should be pursued Behavioral IssueshMay be increased risk for behavioral problems and psych issues Screen for and treat as early as possibleFACase 2Are there any additional secondary conditions for which you should screen? How should you address mom s concerns about starting preschool? What referrals should be made? What other anticipatory guidance should be given? 2K@R Transition to Preschool*Great opportunity to begin to foster child s independence School is required to provide services  both medical and academic IEP should be completed!4Back to the 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 GBCase 2Are there any additional secondary conditions for which you should screen? How should you address mom s concerns about starting preschool? What referrals should be made? What other anticipatory guidance should be given? 23" ReferralsNeurosurgery Urology Orthopedics Ophthalmology Genetics DDD, CRS Many of these referrals done through CRS multidisciplinary team It is still your responsibility to follow-up! Z HCCase 2Are there any additional secondary conditions for which you should screen? How should you address mom s concerns about starting preschool? What referrals should be made? What other anticipatory guidance should be given?2#Anticipatory GuidanceReview latex allergy risk Review growth and development Review orthopedic options available to assist ambulation Review transition to preschool Review signs of shunt dysfunction/infection $ Case 3A 15 year old female with Spina Bifida (L2 level) and a VP shunt presents for a routine well check She is in a wheelchair and no longer uses bracing for assisted ambulation She is at grade level in school She asks you what the chances are she will have a child with spina bifida Z,  %!Case 3 What additional screening should be done How do you answer the patient s question? What anticipatory guidance should be given?MHCase 3What additional screening should be done? How do you answer the patient s question? What anticipatory guidance should be given? **W,( ScreeningdGrowth and development Annual hearing and vision exam Review school progress Obtain BP at each visit-) ScreeningScreen for shunt dysfunction/infection Screen for symptoms of tethered cord Review any orthopedic issues Assess bowel and bladder care Screen for skin breakdown and wheelchair fit .*Wheelchair AssessmentAppropriate fit Signs of use, wear and tear Position and setting in the chair Distribution of weight Restraints/safety features /+Skin AssessmentTake patient out of wheelchair Check pressure points for decubitus ulcers, skin breakdown Examine for any orthopedic abnormalities 8 C&"Growth and Development]Risk of obesity Good nutrition and activity should be encouraged Normal pubertal developmentIDCase 3What additional screening should be done How do you answer the patient s question? What anticipatory guidance should be given? 2)*-1,High Recurrence RiskEither parent has neural tube defect Previously affected pregnancy First degree relative with neural tube defect Risk 2-4% Should receive 4 mg folic acid daily PRIOR to conception2-TAnd now for a public service announcement& ALL women of planning to become pregnant should be taking 0.4 mg of folic acid daily Neural tube closes at 28 days, waiting until you know is TOO LATE!JECase 3What additional screening should be done How do you answer the patient s question? What anticipatory guidance should be given? *S-3.Anticipatory GuidanceReview latex allergy risk Issues of adolescence should be addressed  peer interactions, sexuality, drugs, school performance Independence should be fostered and encouraged as much as possible Transition to adulthood and adult care 4/Transition to AdulthoodBegin to identify barriers to this transition early Start to explore educational, vocational, and living options available to the adolescent Empower the adolescent to assume control of their own health care and decision making "ZZ50Transition to AdulthoodIdentify an adult care provider Establish an uninterrupted flow of care Provide the adolescent and family with a concise record of care Facilitate transfer of care61Take Home PointsUse of disease 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 NI ReferencesAAP Policy Statement. The Medical Home. Pediatrics, 110(1), 184-186. 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) Wilson, Golder and Cooley, Carl. Preventive Management of Children with Congenital Anomalies and Syndromes 2000 Dr. David Hirsch and Dr. Kevin Berger of Phoenix Pediatrics Southwest Institute for Families and Children with Special Needs r*""5"T":"q}NZ !0L' ` fDW&cC3` f}MMM&3fff` 333___` RP.-W~` ;%k)LnV6ff` m'@Q0 ;9]>?" dd@,? 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