Sandra K. Houser, APRN, MSN
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1 Sandra K. Houser, APRN, MSN
2 Every child deserves a medical home American Academy of Pediatrics American Academy of Family Physicians American Osteopathic Association National Association of Nurse Practitioners Family Voices United States Maternal Child Health Bureau
3 Model of delivering primary care Accessible Continuous Comprehensive Family-centered Coordinated Compassionate Culturally effective
4 American Academy of Pediatrics Committee on Genetics, 1994 Health Care Guidelines for Individuals with Down Syndrome William Cohen, 1999
5
6 Physical Examination Cardiac status Monitor growth: Weight, length/height and head circumference (up to 3 years) Standard growth curves for children with Down Syndrome Body Mass Index (BMI) calculated Developmental Milestones/Progress
7 Immunizations As recommended by the American Academy of Pediatrics
8
9 Hearing Monitor for ear infections/ hearing loss Audiogram every 6 months if ear canals cannot be visualized Behavioral audiogram 1 year of age Annual pure tone audiogram
10 Vision Evaluation by 6 months Pediatric ophthalmologist or ophthalmologist with experience with children with Special Health Care Needs Annual or every other year evaluation by pediatric ophthalmologist
11 Thyroid function screen Repeat newborn screen at 6 and 12 months Annual evaluation free T4 and TSH Atlantoaxial instability Cervical spine X-ray obtained 3 to 5 years of age Tethered Cord
12 Feeding/swallowing issues Diet for age Progression of diet Sensitivity to textures Balanced diet Stool patterns Test for celiac disease at 2 to 3 years of age Constipation
13 Sleep Obstructive sleep apnea Snoring, restless sleep & sleep position SBE Prophylaxis as needed American Heart Association Dental Care Good hygiene Evaluation by 2 years then every 6 months
14 Family support groups and resources Education services Respite care Behavior management Genetic counseling Long-term planning, financial planning & guardianship Transition planning
15 Physical examination annually Audiologic testing annually Vision evaluation annually CBC annually Thyroid function screen annually Dental exam every 6 months Immunizations as recommended Cervical spine x-rays as needed Echocardiogram as indicated
16
17
18 Nutrition Monitor weight and BMI Mental health Sexuality Testicular examinations yearly Pelvic examination if sexually active Assess need for hormone management Breast Examination
19 Education services Functional skills Behavior management Respite services Social and recreation opportunities SBE prophylaxis as needed Balanced diet and exercise
20 Transition adulthood plans High school graduation Vocational plans Alternative living plans Health care Long-term financial plan Guardianship Registration for Selective Service 18 years Registration for voting 18 years
21 Physical examination annual Neurological Cognitive skills Behavior assessment Sleep Eyes Ophthalomology/ every 2 years Ears, nose and throat Audiology every 2 years Pulmonary system Seizure assessment as needed
22 Cardiovascular system Gastrointestinal system Genitourinary system Endocrine and autoimmune Diet counseling Muscular system Atlantoaxial subluxation Immunizations Tetanus-diphtheria every 10 years Pneumonia Flu vaccine annually
23 Laboratory evaluations Complete blood count, differential & platelets Cholesterol/Lipid profile at age 35 Fasting blood sugar Renal function Urinalysis Thyroid function tests
24 Annual breast exam at age 40 Mammograms Pelvic exam annually Testicular exam annually
25 Mental health/developmental functioning Living situation Vocational opportunities Social opportunities Long-term planning Guardianship Trusts
26 The purposeful, planned movement of adolescents and young adults with physical and medical conditions form child-centered to adult oriented health care system. The Society for Adolescent Medicine
27 Dynamic, lifelong process to meet the individuals needs as they move form childhood to adulthood. Goal: maximize functioning and potential through the provision of high-quality, developmentally appropriate health care services.
28 Envision your child s future promote future planning Begin with child learning to participate in health care visit Answer questions appropriate to developmental age Instill self confidence Ask questions May require coaching from parents Learning about condition
29 Teach child independence Activities of daily living Health care routines Learn the role of providers in health care Develop rapport with MD or NP to develop transition plan Referral to adult providers Insurance/Medicaid/Medicare
30 American Academy of Pediatrics Health Supervision for Children With Down Syndrome. Pediatrics, 107(2), American Academy of Pediatrics, American Academy of Family Practioners, American College of Physician- American Society of Internal Medicine Pediatrics, 110 (6 ), Bosch, J.J Health Care Needs of Adults with Down Syndrome. International Journal of Nursing in Intellectual and Developmental Disabilities, 1(2), 2. Breast Health Access for Women with Disabilities (DHWAD) Cohen, W.I. (ED) Health Care Guidelines for Individuals with Down Syndrome. Down Syndrome Quarterly, 4, Gordon, S Girls are Girls and Boys are Boys. Prometheus Books. Heaton, Caryl. Let s Talk About Health: What Every Woman Should Know. The ARC. Nadja, G.P., Forke, C. M., Ginsburg, K.R., Schwars, D.F Transition Form Pediatric to Adult Care: Internists Perspectives. Pediatrics, 123,
31 Pilcher, E.S Dental Care for the Patient With Down Syndrome. Down Syndrome Research and Practice, 5(3), Scal, P., Transition for Youth With Chronic Conditions: Primary Physicians Approach. Pediatrics, 110, Siegel, P.C., Changes In You. Family Life Education Associates. Smith, D Health Care Management of Adults with Down Syndrome American Family Physician, 64(6), Van Allen, M.I., Fung, Jurenka, S.B. 1999, Health Care Concerns and Guidelines for Adults with Down Syndrome. American Journal of Medical Genetics, 89, Van Cleve, S.N, Cohen, W.I Part 1:Clinical Practice Guidelines for Children With Down Syndrome From Birth to 12 Years. Journal of Pediatric Health Care, 20(1), Van Cleve, S.N., Cannon,S., Cohen W.I., Part II: Clinical Practice Guidelines for Adolescents and Young Adults With Down Syndrome: 2-21 Years. Journal of Pediatric Health Care, 20(3),
Health Care Information for Families of Children with Down Syndrome
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PLAN FEATURES Deductible (per calendar year) $0 Deductible Unless otherwise indicated, the Deductible must be met prior to benefits being payable. Deductible is NOT applicable to Hearing Aid Reimbursement,
Keeping Track of Your Health
Your Health Journal Keeping Track of Your Health Your Health Journal THE BASICS Name: Height: Weight: Date of birth: Primary doctor: Specialist: Specialist: Specialist: Specialist: Pharmacy: Health insurance:
Now is the time to focus on quality of the life being lived.
Panel Colleen Denman, Family Member (Parent) Laura Hunter, RN, BScN, Nursing Support Services Kim Brighton, RN, BScN, Health Services for Community Living, Clinical Coordinator Wendy Eves RN, BScN, Nursing