Resource Links

Patient Registries

Patient Crossroads

Research

 

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)


http://www.walshlab.org/ Extensive research program affiliated with the Children’s Hospital Boston
http://clinicaltrials.gov/ct2/results?term=polymicrogyria&Search=Search  Clinical Trials currently being done for Polymicrogyria (PMG) Research


What about Stem Cell Research? The National Institutes of Health website- all you want to know and then some




What is Polymicrogyria?


http://ghr.nlm.nih.gov/condition/polymicrogyria (National Institutes of Health)


http://www.ncbi.nlm.nih.gov/books/NBK1329/ NIH page for PMG with pictures of differing forms of PMG found lower down on the page



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.seattlechildrens.org/medical-staff/William-B-Dobyns/ (THE most renowned PMG specialist in the country)

http://health.usnews.com/best-hospitals/pediatric-rankings/neurology-and-neurosurgery  (Article ranking BEST hospitals for pediatric neurologists and neurosurgery

http://www.walshlab.org/services.php  Christopher A Walsh Brain Development and Genetics (BrDG) Clinic at Children’s Hospital Boston

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:

Support Groups


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


Cerebral Palsy

http://cerebralpalsy.org/ (Cerebral Palsy Organization)
http://www.ucp.org/ (United Cerebral Palsy)

Epilepsy



http://www.epilepsyfoundation.org/  Epilepsy Foundation

http://www.dannydid.org   Danny Did Foundation



 http://www.epilepsy.com/epilepsy/treatment_Ketogenic_Diet Ketogenic Diet- useful in some children with uncontrolled seizures

http://www.epilepsy.com/epilepsy/newsletter/jul11_surgical  surgical options for some children with uncontrolled seizures


http://www.theseeprogram.com/html/s_e_e__library.html  The S.E.E. The Seizures & Epilepsy Education (S.E.E.)

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



Microcephaly

http://www.childrenwithmicro.org/ (Children with Microcephaly)

Hydrocephalus

http://www.hydroassoc.org/ (Hydrocephalus Association)

Developmental Delays

http://www.devdelay.org/   (Developmental Delay Resources)

Feeding Issues

http://feedingtubeawareness.org/ (site dedicated to feeding tube awareness)


http://feedingtubeawareness.org/for-friends-family.html (for families and friends of tubies-feeding tube etiquette)

http://www.vitalstim.com/provider_search/index.aspx (VitalStim is a form of neuro electrical stimulation that is used to help patients who have difficulty with swallowing)

Vision Issues



Speech Issues

http://www.asha.org/docs/html/PS2005-00113.html  (Position statement for the American Speech-Language-Hearing Association on Augmentive and Alternative Communication (AAC) communication rights for children with communication needs)

Macrocephaly/Megalencephaly
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)


http://idea.ed.gov/  (Individuals with Disabilities Education Act)

http://www.earlyinterventionsupport.com/default.aspx (A great resource about Early Intervention)

http://www.earlyinterventionsupport.com/resources/links/state.aspx (Link to your state’s early intervention resources)


Financial Assistance


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.

http://medicaiddirectors.org/ (State listings for Medicaid offices)

http://www.ssa.gov/applyfordisability/child.htm (Application for disability income for your child -please note that if your child is 18, you will need to apply for regular disability for adults)

Katie Beckett Waiver – Financial aid for people who do not qualify for Medicaid



Assistive and Adaptive Technology


http://www.cms-kids.com/home/resources/es_policy_1011/Attachments/6_ES_AssistTech_Brochure_Insert.pdf Early Steps information about Assistive Devices for children under 3 -rights and advice NOTE: Early Steps is the name of the early intervention for the state of Florida –see the link for your state’s early intervention program at:  http://www.earlyinterventionsupport.com/resources/links/state.aspx

http://www.fctd.info/factsheet/at101 (assistive technology)

http://www.asha.org/docs/html/PS2005-00113.html  (Position statement for the American Speech-Language-Hearing Association on Augmentive and Alternative Communication (AAC) communication rights for children with communication needs)

Disability Rights and Information


http://www.ndrn.org/ (National Disability Rights Network)

http://www.ada.gov/ (Americans with Disabilities Act)

http://www.asha.org/docs/html/PS2005-00113.html (Position statement for the American Speech-Language-Hearing Association on Augmentive and Alternative Communication (AAC) communication rights for children with communication needs)