Attention Deficit Hyperactivity Disorder

Asthma

Autism

Cerebral Palsy

Down Syndrome

Low Birth Weight / Prematurity

Other Diagnoses and Conditions

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Other Diagnoses and Conditions

Overview

Key care guidelines, review articles, and information resources for monitoring and managing the health of individuals with specific childhood-onset diagnoses and conditions during pediatric and adult years. 

This page is a work in progress.  Please send your suggestions for articles and guidelines to include. (Dr. Katherine TeKolste at info@medicalhome.org)

A   B   C   D   E   F   G   H   I   J   K   L   M   N   O   P   Q   R   S   T   U   V   W   X   Y   Z

A

Achondroplasia

Health Supervision for Children With Achondroplasia
Tracy L. Trotter, Judith G. Hall and the Committee on Genetics Pediatrics, American Academy of Pediatrics, Pediatrics, Sep 2005; 116: 771 - 783.

Angelman Syndrome

• Clinical Practice Considerations for Angelman Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Angleman Syndrome)

Anxiety

• Utah Medical Home Newsletter on Depression and Anxiety 
  • Information on screening & referral guidelines from the Utah Medical Home Project

Asthma

• See Asthma pages

Attention Deficit Hyperactivity Disorder (ADHD)

• See ADHD pages

Autism Spectrum Disorder (Autism, Asperger's Syndrome, Pervasive Developmental Disorder)

• See Autism pages

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B

(nothing currently listed)

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C

Cerebral Palsy

• See Cerebral Palsy pages
• The Adult with Cerebral Palsy. Rapp CE, Torres , Arch Fam Med. 2000, 9:466-472.

Cleft Lip and Palate

• Cleft Lip and Palate - Critical Elements of Care

  The Center for Children with Special Needs, Seattle Children's Hospital. (Rev 6/06).  52 pages. Funded through a contract with the Children with Special Health Care Needs Program, Washington State Dept. of Health.  http://cshcn.org/sites/default/files/webfm/file/CriticalElementsofCare-CleftLipandPalate.pdf  

• Guideline for the Care of Children and Adolescents with Cleft Lip and Palate. From Physicians Guide to the Care of Children With Disabilities and Chronic Conditions, edited by RE Nickel and LW Desch, Paul H. Brookes Publishing Company.

  www.ohsu.edu/outreach/cdrc/medicalhome/docs/cleftlip.pdf

Cornelia de Lange Syndrome

• Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Conelia de Lange Syndrome)

Cri du Chat Syndrome

Cystic Fibrosis

• Cystic Fibrosis - Critical Elements of Care.  The Center for Children with Special Needs, Seattle Children's Hospital. (Rev 3/06).  19 pages. Funded through a contract with the Children with Special Health Care Needs Program, Washington State Dept. of Health. 

  http://cshcn.org/sites/default/files/webfm/file/CriticalElementsofCare-CysticFibrosis.pdf  

• Best Practice - Diagnosis and Management of Cystic Fibrosis.  Smyth R.  Arch Dis Child Educ Pract Ed.  90:ep1-ep6, 2005.  http://ep.bmjjournals.com/cgi/reprint/90/1/ep1

• Online resource community for cystic fibrosis (launched by Novartis).  Information on CF in adulthood, information for preteens, teens and parents, and more  www.cfvoice.com

Cytomegalovirus

• Cytomegalovirus.  Griffiths PD, Walter S.  Curr Opin Infect Dis. Jun;18(3):241-5,  2005. (Review)

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D

Depression

• AAP Guidelines for Adolescent Depression in Primary Care: Identification, Assessment and Initial Management - Pedatrics, November 2007
• Child and Adolescent Depression and Anxiety Toolkit- online health information resources for parents and health care providers from the Center for Children with Special Needs at Seattle Children's Hospital, Seattle.
• Utah Medical Home Newsletter on Depression and Anxiety 
  • Information on screening & referral guidelines from the Utah Medical Home Project

Developmental Delay and Mental Retardation

• See also: references for evaluation under Physicians: Developmental Surveillance and Screening section - Workup for DD/MR
• Guidelines for the Care of Children and Adolescents with Developmental Delay or Mental Retardation. From Physicians Guide to the Care of Children With Disabilities and Chronic Conditions, edited by RE Nickel and LW Desch, Paul H. Brookes Publishing Company. www.ohsu.edu/cdrc/medicalhome/docs/dd.pdf

• Primary care of adults with mental retardation. Amer Fam Physician.2006 Jun 15;73(12):2175-83. Link
• Mental retardation: What caregivers need to know. Link
• Caring for Adults with Mental Disabilities.  Councilman DL.  Postgrad Med. 1999. 106(6): 181-90.  Link
• Transition of cognitively delayed adolescent organ transplant recipients to adult care  Kaufman M.
  Pediatr Transplantation. 2006: 10: 413–417.  Link to abstract

Developmental Disabilities

• Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information> Early Identification Of Developmental Delay And Disability)

DiGeorge Syndrome -  see VeloCardioFacial Syndrome

Down Syndrome

• See Down Syndrome pages

Duchenne Muscular Dystrophy

• Duchenne Muscular Dystrophy - Critical Elements of Care.  The Center for Children with Special Needs, Seattle Children's Hospital. (Rev. 5/06).  pages. Funded through a contract with the Children with Special Health Care Needs Program, Washington State Dept. of Health. 19 pages.

  http://cshcn.org/sites/default/files/webfm/file/CriticalElementsofCare-MuscularDystrophy.pdf 

• Clinical Practice Considerations for Duchenne Dystrophy.  Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Duchenne Dystrophy)

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E

Epilepsy

• See Seizure Disorders

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F

Fetal Alcohol Syndrome Disorders

• Washington State Fetal Alcohol Syndrome Disorders

  http://depts.washington.edu/fasdwa/

• Fetal Alcohol Syndrome Diagnositic and Prevention Network- Univ. of Washington clinical/research program

  http://depts.washington.edu/fasdpn/
  

• Fetal Alcohol Syndrome and Alcohol-Related Neurodevelopmental Disorders

  Committee on Substance Abuse and Committee on Children With Disabilities
  Pediatrics 106 (2):358-361. Aug 2000.  [Abstract] [Full Text] [PDF]

• Drinking and Reproductive Health: A Fetal Alcohol Spectrum Disorders
  Prevention Tool Kit

  Strategies and materials to help health professionals identify women who drink at risky levels and engage them in changing behavior to reduce their risk for an alcohol-exposed pregnancy. Sponsored by the American College of Obstetricians and Gynecologists with support from the Centers for Disease Control and Prevention. www.acog.org/from_home/misc/dept_pubs.cfm.

Food Allergies

• FEAST (Food Education Allergy Support Team) - Greater Puget Sound support and advocacy group

  www.seattlefoodallergy.org

• The Food Allergy and Anaphylaxis Network (US)

  www.foodallergy.org/

Fragile X Syndrome

• Health Supervision for Children with Fragile X Syndrome

  Committee on Genetics (1 Aug 1996)  
  Pediatrics 98 (2) : 297-300. [Abstract] [PDF]

• Clinical Practice Considerations for Fragile X Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Fragile X Syndrome)

• Diagnosis and management of Fragile X Syndrome.  Wattendorf DJ, Muenke M.  Am Fam Physician. 2005.  72:111-113. Link

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G

Genetic Disorders

• Genetests website.   Funded by the National Institutes of Health. Searchable database of tests, labs, resources. (click on GeneReviews from homepage).
  www.geneclinics.org/

• Newborn Screening-Condition-specific Action Steps and Treatment Algorithms
  • An ACTion (ACT) sheet describes the short term actions a health professional should follow in communicating with the family and determining the appropriate steps in the follow-up of the infant that has screened positive. 
  • An algorithm that presents an overview of the basic steps involved in determining the final diagnosis in the infant. The algorithms were developed by a work group that included experts in the various specialties and conditions involved in newborn screening for endocrine, hematological, genetic and metabolic diseases.
  • All materials were approved by the Board of Directors of the American College of Medical Genetics (ACMG). The materials will be maintained by ACMG over time and additional materials added as new conditions are introduced into newborn screening programs

• Dysmorphic features list  - 
  • See pages 18-20 at the following website: www.ohsu.edu/cdrc/medicalhome/docs/dd.pdf
  • Dymorphology assessment of the newborn
    www.netsvic.org.au/nets/handbook/
    index.cfm?doc_id=885#Examination_Checklist 

• Additional Etiologic Work Up Information:
  • Laboratory Testing: Array-based Comparative Genomic Hybridization (CGH) - general information for physicians
  • Laboratory Evaluation for Disorders of Energy Metabolism, including Mitochondrial Disorders- (link)

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H

(nothing currently listed)

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I

(nothing currently listed)

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J

Juvenile Idiopathic Arthritis

• Juvenile Idiopathic Arthritis - Critical Elements of Care.  The Center for Children with Special Needs, Seattle Children's Hospital. (Rev. 5/06).  19 pages. Funded through a contract with the Children with Special Health Care Needs Program, Washington State Dept. of Health.

  http://cshcn.org/sites/default/files/webfm/file/CriticalElementsofCare-Arthritis.pdf  

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K

(nothing currently listed)

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L

Learning Disabilities

• Learning Disabilities Online - Resources page www.ldonline.org/ldresources
• En español / spanish: www.ldonline.org/features/espanol

Low Birthweight

• See Low Birthweight/Prematurity pages

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M

Marfan Syndrome

• Health Supervision for Children with Marfan Syndrome. Committee on Genetics (1 Nov 1996) Pediatrics 98 (5) : 978-982. [Abstract] [PDF]

Maternal Depression

• Screening for depression in an urban pediatric primary care clinic.  Dubowitz HD et al.  Pedaitrics.119(3):435-443. March 2007. Link
  • Parent Screening Questionnaire - A Safe Environment for Every Kid: A brief screener for psychosocial problems

Mental Retardation

• See also Developmental Delay
• See also: references for evaluation under Physicians: Developmental Surveillance and Screening section - Workup for DD/MR
• Primary care of adults with mental retardation. Am Fam Physician. 2006 Jun 15;73(12):2175-83. Link
• Mental retardation: What caregivers need to know. Link
• Transition of cognitively delayed adolescent organ transplant recipients to adult care  Kaufman M.
  Pediatr Transplantation. 2006: 10: 413–417.  Link to abstract
• Caring for Adults with Mental Disabilities.  Councilman DL.  Postgrad Med. 1999. 106(6): 181-90.  Link

Mental Health

• The King County Mental Health Plan - A Guide to Public Mental Health Service in King County

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N

Neurofibromatosis

• Health Supervision for Children with Neurofibromatosis

  Joseph H. Hersh and the Committee on Genetics. Pediatrics 2008;121;633-642.

• Clinical Practice Considerations for Neurofibromatosis Type 1. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Neurofibromatosis)

Noonan Syndrome

• Clinical Practice Considerations for Noonan Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Noonan Syndrome)

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O

(nothing currently listed)

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P

Pervasive Developmental Disorder

• See Autism pages

Phenylketonuria (PKU)

• University of Washington PKU Clinic

  http://depts.washington.edu/pku/

• Children's PKU Network

  www.pkunetwork.org

• National PKU News

  www.pkunews.org

Prader-Willi Syndrome

• Clinical Practice Considerations for Prader-Willi Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Prader-Willi Syndrome)

Prematurity

• See Low Birthweight/Prematurity pages

Q

(nothing currently listed)

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R

Rare Disorders

• National Organization for Rare Disorders

  www.rarediseases.org/

Rett Syndrome

• Clinical Practice Considerations for Rett Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Rett Syndrome)

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S

Seizure Disorders

• Guidelines for the Care of Adolescents and Children with a Seizure Disorder. From Physicians Guide to the Care of Children With Disabilities and Chronic Conditions, edited by RE Nickel and LW Desch, Paul H. Brookes Publishing Company.

  www.ohsu.edu/cdrc/medicalhome/docs/seizure.pdf
  

• Washington State Seizure Action Plan
  www.medicalhome.org/4Download/seizure_actionplan.doc
  
  
• Seizure Action Plan (available in English and Spanish )
  
  
• My Medicine Schedule (available in English and Spanish )
  
  
• Wallet Medication List
  www.medicalhome.org/4Download/walletmedlist.pdf
  

• The Epilepsy and Seizure Disorders: A Resource Guide for Parents.

  Developed by parents and professionals to help parents of children with epilepsy and/or a seizure disorder better understand their child’s condition.  This 48-page guide is divided into 4 sections: Understanding Epilepsy and/or Seizure Disorders, Health Care for my Child: Access to Care/Access to Services, Advocacy and Support, and Forms and Tools. 

  www.epilepsyfoundation.org/local/norcal/Parents-Resource-Guide.cfm

Sickle Cell Disease

• Sickle Cell Disease - Critical Elements of Care

  The Center for Children with Special Needs, Seattle Children's Hospital. (Rev 6/06). 44 pages. Funded through a contract with the Children with Special Health Care Needs Program, Washington State Dept. of Health. http://cshcn.org/sites/default/files/webfm/file/CriticalElementsofCare-SickleCell.pdf  

• Sickle Cell Information Center

  www.scinfo.org/

Spina Bifida

• Clinical Practice Considerations for Spina Bifida.
• Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Spina Bifida)

• Health Care Issues for Adults with Spina Bifida
• Improving Transition to Adulthood for Adolescents with Spina Bifida; Nienke Dosa MD, MPH

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T

Teratogens

• Developmental neurotoxicity of industrial chemicals (Review Article).  Grandjean P, Landrigan PJ.  Lancet. 2006.  368:2167-2178.  Abstract Link  Article link

Tourette syndrome

Tourette syndrome diagnosis module. Utah Collaborative Medical Home Project.  Module authors: Dr. Samuel H. Zinner and
Lynne M Kerr, MD, PhD. Posted 7/2008

www.medhomeportal.org/diagnosis/tourette-syndrome/description

Tuberous Sclerosis

• Clinical Practice Considerations for Tuberous Sclerosis. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Tuberous Sclerosis)

Turner Syndrome

• Clinical Practice Considerations for Pediatric Traumatic Brain Injury. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Turner Syndrome)
• Turner syndrome: Transition from pediatrics to adulthood. Endocr Pract. Rubin KR. 2008 Sep; 14(6):775-81.

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U

(nothing currently listed)

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V

Velocardiofacial Syndrome

• Clinical Practice Considerations for Velocardiofacial Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Velocardiofacial Syndrome)
• Information from the National Institutes of Health http://www.ncbi.nlm.nih.gov/disease/DGS.html
• Information at Online Mendalian Inheritance in Man (OMIM) http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=188400
• VeloCardioFacial Foundation http://www.vcfsef.org/
  

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W

Williams Syndrome

• Health Care Supervision for Children With Williams Syndrome

  Committee on Genetics (1 May 2001)

  Pediatrics 107 (5) : 1192-1204. [Abstract] [Full Text] [PDF]

• Clinical Practice Considerations for Williams Syndrome. Developmental Disabilities Resources for Healthcare Providers website: www.ddhealthinfo.org (Click on > Health Care Providers > Medical Care Information > Williams Syndrome)

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X

(nothing currently listed)

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Y

(nothing currently listed)

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Z

(nothing currently listed)

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