http://www.seattlechildrens.org/medical-staff/William-B-Dobyns/ Dr. William Dobyn’s at Seattle Children’s Hospital (THE authorative expert on PMG – he has published 237 papers on the brain and developmental disorders) as well as over 25 years of research (originally associated with the University of Chicago and a long time researcher with the National Institutes of Health)
What about Stem Cell Research? The National Institutes of Health website- all you want to know and then some
What is Polymicrogyria?
Prevalence of Polymicrogyria (from the NIH website)
Although polymicrogyria in all its forms collectively is a fairly common brain malformation, each individual disorder in which it can be observed is rare. Perisylvian polymicrogyria is the most commonly described syndrome; its prevalence, like that of the other syndromes with polymicrogyria, remains unknown.
Recommended Medical Specialists/Clinics/Hospitals/Research
http://www.kennedykrieger.org/ Located in Baltimore, MD., Kennedy Krieger Institute is an internationally recognized institution dedicated to improving the lives of children and adolescents with pediatric developmental disabilities and disorders of the brain, spinal cord and musculoskeletal system, through patient care, special education, research, and professional training.
State Newborn Screening by State
Each state has it’s own list of newborn screening tests (done by heel stick) right after birth. These tests are ran to look for major (and usually life threatening) diseases and disorders. The link below will allow you to see what your state screens for. The blood spots (literally) are put on cards and stored and can be accessed (usually for many years) to run additional tests to see if your child was born with a condition/disease/disorder. Currently, there are a LOT of states that do not test for CMV, a known cause of PMG, but you may be able to have the card retrieved for additional testing. Please see your state’s link for specific information. Click on the link below:
Online Support Groups
Support for Parents of Special Needs Children
Medication safety guideline during pregnancy – frequently asked guide to FDA classification of drug safety during pregnancy
Conditions that MAY be associated with PMG
Hypotonia – Decreased muscle tones (muscle weakness)
Arthrogryposis – abnormal stiffness of the joints of the arms and legs (contractures) and occasional hip dislocation
Reflux – Gastroesophageal reflux – Abnormal finding of food backing up in the esophagus
http://www.m-cm.net/ – M-CM Network (Macrocephaly Capillary Malformation)
http://rarediseases.info.nih.gov/GARD/Condition/10341/Megalencephaly_polymicrogyria_and_hydrocephalus_MPPH_syndrome.aspx MPPH Syndrome (Megalencephaly Polymicrogyria Polydactyly Hydrocephalus Syndrome)
http://www.ajnr.org/content/30/8/1620.full MPPH Syndrome
Early Intervention and Educational Rights (This is a FEDERAL RIGHT)
Medicaid- state based insurance for those with limited income or high cost health care issues
NOTE: Each state’s requirements to meet income restrictions vary. However, there are frequently other programs to assist if your family exceeds the income guidelines. Contact your state’s medicaid office to find out more.
Also, some state’s Medicaid programs may have resources for nursing care at home and/or medical daycare for your child/family. Unfortunately, with economical hardships we have to fight for our children now more than ever.
Katie Beckett Waiver – Financial aid for people who do not qualify for Medicaid
Assistive and Adaptive Technology
Disability Rights and Information