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.
Anxiety
Asthma
Attention Deficit Hyperactivity Disorder (ADHD)
Autism Spectrum Disorder (Autism, Asperger's Syndrome, Pervasive Developmental Disorder)
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B
(nothing currently listed)
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C
Cerebral Palsy
Cleft Lip and Palate
Cri du Chat Syndrome
Cystic Fibrosis
- 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
Deafness - see Hearing Loss
Depression
Developmental Delay and Mental Retardation
- 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
DiGeorge Syndrome - see VeloCardioFacial Syndrome
Down Syndrome
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E
Epilepsy
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F
Fetal Alcohol Syndrome Disorders
Food Allergies
Fragile X Syndrome
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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 -
- Additional Etiologic Work Up Information:
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H
Hearing Loss
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I
(nothing currently listed)
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J
(nothing currently listed)
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K
(nothing currently listed)
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L
Learning Disabilities
Low Birthweight
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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
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
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N
Neurofibromatosis
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O
(nothing currently listed)
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P
Pervasive Developmental Disorder
Phenylketonuria (PKU)
Prader-Willi Syndrome
- Health Supervision for Children With Prader-Willi Syndrome. The Committee on Genetics Pediatrics 2011; 127: 195-204. Link to abstract
Prematurity
Q
(nothing currently listed)
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R
Rare Disorders
Robin Sequence
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S
Seizure Disorders
- 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
Spina Bifida
- Clinical Practice Considerations for Spina Bifida.
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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
Traumatic Brain Injury
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
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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]
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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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