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Last Updated: 11/20/2017
 

Disability Information - Porencephaly

 

General Information

Education & Classroom Accommodations

Michigan Resources, Support Groups, Listservs & Websites

National Resources & Websites

Articles Related to this Disability

Medical Information

Books & Videos

Personal Home Pages & Websites

 

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 General Information

 

What is Porencephaly?
Porencephaly is an extremely rare disorder of the central nervous system involving cysts or cavities in a cerebral hemisphere. The cysts or cavities are usually the remnants of destructive lesions (due to stroke or infection), but are sometimes the result of abnormal development. The disorder can occur before or after birth. Most infants show symptoms of the disorder shortly after birth. Diagnosis is usually made before age 1. Signs may include delayed growth and development, spastic hemiplegia (slight or incomplete paralysis), hypotonia (low muscle tone), seizures (often infantile spasms), and macrocephaly (large head) or microcephaly (small head). Individuals with porencephaly may have poor or absent speech development, epilepsy, hydrocephalus, spastic contractures (shrinkage or shortening of a muscle), and mental retardation.

Is there any treatment?
Treatment may include physical therapy, medication for seizure disorders, and a shunt for hydrocephalus.

What is the prognosis?
The prognosis for individuals with porencephaly varies according to the location and extent of the lesions. Some patients with this disorder may develop only minor neurological problems and have normal intelligence, while others may be severely disabled. Others may die before the second decade of life.

 

From the National Institute of Neurological Disorders and Stroke
 

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 Education & Classroom Accommodations

 

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 Michigan Resources, Support Groups, Listservs & Websites

 

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 National Resources & Websites

 

Yahoo Listserv: http://health.groups.yahoo.com/group/porencephaly/

 

Porencephaly Contact Group in the U.K.
138 Heresan Road
Ramsgate
Kent
CT11 7EG
Tel: 0184 3593512
Best time to telephone: after 6pm, answerphone at other times
The Porencephaly Contact Group is a small group of parents who have children affected by the condition. The main aim of the group is to put families in touch with each other in the same locality for mutual advice and support.

 

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 Articles Related to this Disability

 

Progressive focal deficit with Porencephaly
W. R. Leahy and H. S. Singer
The association of porencephalic cysts with hydrocephalus was first cited in 1939. Subsequent descriptions of this combination in terms of fixed, nonprogressive neurological problems have been reported. We describe four patients with hydrocephalus who had progressive focal motor deficits secondary to porencephalic diverticulation of the lateral ventricle. Symptoms of increased intracranial pressure were not a consistent finding in all patients. Enlargement of the porencephalic cyst is related to either a generalized increase in intraventricular pressure or to "hydrostatic" forces that may act independently. Computerized axial tomography has provided a noninvasive technique that allows definition of the abnormality and its progression. Neurosurgical intervention has resulted in clinical improvement in all patients studied.

  

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 Medical Information

 

What is the definition of porencephaly? Porencephaly is just a term that means "hole in the brain". This is the result of an injury to the brain (such as a stroke). The body cleans up the dead tissue and a hole is left. This is porencephaly. [from http://www.chasa.org/]

 

Porencephaly is a condition whereby there are isolated cavities within the cerebral hemisphere. They may or may not be single and there may be communication with ventricles and other subarachnoid space. The etiology is thought to be that there is a localized destruction of brain tissue due to a number of causes but potentially including toxemia, maternal injuries, infection, hypoxic injury or even intra-uterine intra-cerebral hemorrhage. Its overall incidence is unknown, etiology must be multi-factorial and some series suggest that there is a risk that a patient with Porencephaly has at 2-4 per cent chance of having a child with a neural tube defect. There is no specific treatment other than symptomatic for conditions that may have caused it . There may be seizures but most of the time these present as incidental findings. [from http://www.cafamily.org.uk/Direct/p30.html]
 

Syndrome porencephaly-cerebellar hypoplasia-internal malformations syndrome
Summary A congenital syndrome of bilateral porencephaly, absence of the septum pellucidum, and cerebellar hypoplasia. Situs inversus and tetralogy of Fallot were observed in one of the original cases and atrial septal defect in the other. Both infants were retarded.
Major Features Head and neck: Macrocephaly and mildly dysmorphic facies.
Eyes: Hypertelorism, corneal clouding, pale optic nerve, and oval pupils.
Mouth and oral structures: Broad alveolar ridges and highly arched palate.
Muscles: Hypertonia.
Nervous system: Porencephaly, absence of septum pellucidum, cerebellar hypoplasia, hydrocephalus, cerebral cortex abnormalities, hyperactive tendon reflexes, and seizures.
Cardiovascular system: Situs inversus, tetralogy of Fallot, and atrial septal defect.
Growth and development: Mental retardation.
Behavior and performance: Feeding difficulty.
Heredity: The syndrome is familial and is transmitted as an autosomal recessive trait.

 

Children with Stroke, Cerebral Palsy, and Porencephaly Sought for Study
http://www.clinicaltrials.gov/ct/gui/show/NCT00001927?order=1

 
Investigators at the National Institute of Neurological Disorders and Stroke (NINDS) are seeking children with stroke, cerebral palsy, and porencephaly for a study of abnormal acquired and genetic coagulation factors. In the study, researchers will measure a series of potential risk factors for stroke that include autoimmune, inflammatory, and genetic clotting factor abnormalities. By identifying the factors that contribute to childhood stroke, cerebral palsy, and porencephaly, researchers hope this study will lay the groundwork for future research projects that will explore potential treatments.

Eligible patients must have a history of porencephaly, cerebral infarction (stroke), and/or cerebral palsy and have a diagnosis of porencephaly or stroke confirmed by computed tomography (CT), magnetic resonance imaging (MRI), and/or Doppler ultrasonography.

The study consists of a 30-minute telephone interview/questionnaire, blood sample, and buccal smear. All study-related expenses will be paid by the NIH. The study will be carried out under testing and safety standards of the U.S. Department of Health and Human Services.

For more information, physicians should send a referral letter and a copy of the patient's recent medical records to Dr. Karin Nelson or Dr. John Lynch, NINDS, NIH, 10 Center Drive, Building 10, Room 5S220, Bethesda, MD 20892-1447; telephone: (301) 496-1714; fax: (301) 496-2358; email: lynchj@ninds.nih.gov.

 

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 Books & Videos

The Official Parent's Sourcebook On Porencephaly: A Revised And Updated Directory For The Internet Age
ISBN:
0597841179
Number Of Pages: 132
Publication Date: February 13, 2004
Publisher: Icon Health Publications
Description: This is a 'must have' reference book for patients, parents, caregivers, and libraries with medical collections. This sourcebook is organized into three parts. Part I explores basic techniques to researching porencephaly (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to porencephaly. It also gives you sources of information that can help you find a doctor in your local area specializing in treating porencephaly. Collectively, the material presented in Part I is a complete primer on basic research topics for patients with porencephaly. Part II moves on to advanced research dedicated to porencephaly. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on porencephaly. When possible, contact names, links via the Internet, and summaries are provided. In general, every attempt is made to recommend 'free-to-use' options. Part III provides appendices of useful background reading for all patients with porencephaly or related disorders. The appendices are dedicated to more pragmatic issues faced by many patients with porencephaly. Accessing materials via medical libraries may be the only option for some readers, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing patients with porencephaly.

 

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