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Primavera 2001 Tabula de Contenido
English version of this article (Versión Inglesa)

 

Por Kate Moss, Epecialista Familiar, TSBVI, Sordoceguera Outreach de Texas

La información del Censo 2001 de Sordoceguera de Texas indica que la meningitis es una de las principales causas de sordoceguera en nuestro estado. Ha habido de manera reciente en Texas varias alarmas relacionadas con brotes de meningitis. ¿Qué es esta enfermedad y cuáles son algunos de los problemas asociados con ella?

Ante todo, la meningitis no es lo mismo que la encefalitis, aunque ambas ocurren en el cerebro. La meningitis es la inflamación del tejido que cubre al cerebro y a la médula espinal, las meninges. La encefalitis es la inflamación del cerebro en sí. Hay dos categorías amplias de meningitis, viral y bacterial.

La meningitis bacterial es la más común, pero puede ser extremadamente seria. A veces es fatal, especialmente si no se trata de manera inmediata. Aquellos que sobreviven a este tipo de meningitis a veces sufren de discapacidad severa como resultado. El daño cerebral y la sordera son dos consecuencias frecuentes de este tipo de meningitis. Los bebés en EUA son vacunados generalmente contra un tipo de bacteria que ocasiona la meningitis, la haempohilus influenzae tipo b (Hib). Gracias a este tipo de vacunación, esta clase de meningitis ha desaparecido prácticamente del país. Los otros dos tipos de meningitis son meningococal y pneumococal. Ambos tipos de bacteria son muy comunes. De hecho, en cualquier momento dado, alrededor del 25% de la población porta esta bacteria, que vive en la parte trasera de la garganta y la nariz. Generalmente esta bacteria no ocasiona ningún problema real.

Una persona que se enferma con meningitis bacteriana necesita tratamiento médico inmediato. Se utilizan antiobióticos para tratar a la meningitis bacteriana. De acuerdo a los Centros para el Control de Enfermedades, (Centers for Disease Control), los síntomas comunes de meningitis son alta temperatura, dolor de cabeza y rigidez en el cuello en cualquier persona mayor a los dos años de edad. Los síntomas pueden desarrollarse en el transcurso de varias horas, o podrían presentarse en 1 a 2 días. Otros síntomas podrían incluir náusea, vómito, incomodidad al observar luces brillantes, confusión y somnolencia. En los recién nacidos y en los pequeños infantes, los síntomas clásicos de fiebre, dolor de cabeza y rigidez del cuello podrían no presentarse o ser difíciles de detectar, y el niño podría aparecer únicamente como lento o inactivo, o estar irritable, tener vómito o estar comiendo poco. Conforme avanza la enfermedad, los pacientes de cualquier edad podrían sufrir desmayos. (Sitio Web CDC, 2001). Un diagnóstico se hace generalmente mediante una exploración espinal.

La meningitis viral por lo regular no es tan peligrosa como la bacteriana, aunque los síntomas a veces parecen ser los mismos. Cerca del 90% de los casos de meningitis viral son ocasionados por un grupo de virus conocido como enterovirus. Los virus de herpes y de paperas también pueden provocar meningitis viral. No hay tratamiento para la meningitis viral. Las personas sanan por lo general por sí mismas con reposo absoluto. Simplemente se les proporciona líquidos en abundancia y también medicina para tratar la fiebre y los dolores de cabeza. La meningitis viral por lo general no provoca otras condiciones de discapacidad y rara vez resulta fatal.

Una persona puede sufrir de meningitis en más de una ocasión, aunque esto es raro. Existen vacunas para algunos tipos de meningitis. Alguien que muestre cualquiera de sus síntomas debería consultar inmediatamente a un doctor que pueda determinar el tipo de meningitis presente y comenzar el tratamiento. Incluso con la meningitis viral, pueden presentarse problemas severos como resultado de la deshidratación, especialmente en niños y en bebés.

Ambos tipos de meningitis se contagian por medio de secreciones respiratorias y corporales. Por eso una de las mejores formas de prevenir la meningitis es el lavado regular y concienzudo de las manos. Por lo general no se contagia mediante el contacto casual como el estornudo o la tos.

Cuando una persona tiene meningitis, hay un periodo a largo plazo de recuperación. También existen algunos problemas que pueden esperarse inmediatamente después de la hospitalización a causa de esta enfermedad y pueden desaparecer con el tiempo. En los niños podemos ver varios cambios en el comportamiento que pueden deberse, en parte, al trauma de estar en el hospital. Esto incluye comportamiento de bebé o lloriqueo, mojar la cama, rabietas, problemas para dormir en la noche y el olvido de habilidades aprendidas. Hay otros síntomas, sin embargo, que pueden durar más tiempo o incluso ser permanentes. Estos incluyen fatiga general, dolores de cabeza recurrentes, problemas de concentración, pérdida temporal de la memoria, torpeza, vértigo, problemas de equilibrio, depresión, arranques temperamentales violentos, cambios de ánimo, períodos de agresividad, dificultades de aprendizaje, tinnitus (zumbido en los oídos), coyunturas resentidas o rígidas, problemas visuales como doble visión e impedimento visual cortical, y la posibilidad de sordera, daño cerebral o desmayos como mencionábamos anteriormente. (Fundación de Meningitis de América Meningitis Foundation of America, 2001).

REFERENCIAS/RECURSOS

Fundación de Meningitis de América
Meningitis Foundation of America Inc.
7155 Shadeland Station, Suite 190
Indianapolis, Indiana 46256-3922
Teléfono: (800) 668-1129
Fuera de Norteamérica: (317) 595-6383
Sitio Web: http://www.musa.org/

Centros para el Control y Prevención de Enfermedades
The Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333
Teléfono: (800) 311-3435
Sitio Web: http://www.cdc.gov/

El Instituto Nacional de Desórdenes Neurológicos e Infarto - Instituto Neurológico NIH
The National Institute of Neurological Disorders and Stroke - NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Teléfono: (800) 352-9424
Sitio Web: http://www.ninds.nih.gov/health_and_medical/disorders/encmenin_doc.htm

The references listed below range from brief summaries to more detailed information.

Corn, Anne L. & Koenig, Alan J. (eds.). (1996). Foundations of low vision: clinical and functional perspectives. New York : AFB Press, p. 438-439.

Magalini, Sergio I., Magalini, Sabina C. & de Francisci, Giovanni. (1990). Dictionary of medical syndromes. (3rd ed.). Philadelphia : J. B. Lippincott Company, p. 640.

Pavan-Langston, Deborah (ed.). (1996). Manual of ocular diagnosis and therapy. (4th ed.). Boston : Little, Brown & Co., p. 284.

Donnai, Dian.; Mountford, R. C. & Read, A. P. (1998) "Norrie disease resulting from a gene deletion : clinical features and DNA studies." In Bernas-Pierce, Julie. (ed.). (1995). The Hoyt-Akeson selected readings in pediatric ophthalmology. San Francisco :Blind Babies Foundation.

Norrie Disease Association
P.O. Box 3244
Munster, IN 46321
708-620-4556
www.norriedisease.org

Some useful Web Resources

Norrie's Syndrome - NORD

Norrie's Syndrome - WebMD

Norrie Disease:Madisons Foundation

Norrie Disease:Genetics Home Reference, NLM

Norrie Disease - Family Village Library


Winter 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Kate Moss, Family Support Specialist, Texas Deafblind Outreach

A "syndrome" is described as a recognizable pattern of birth defects. One of the more complex syndromes that can result in both vision and hearing loss is CHARGE Syndrome. Children diagnosed with CHARGE most commonly have:

  • Coloboma of the eye (a cleft or keyhole-shaped defect occurring in one or more areas of the eye including the iris, retina, or disc); and Cranial nerve problems (facial palsy and swallowing problems); and Cartilage anomalies
  • Heart defect
  • Atresia of the choanae (closure of the passages from the back of the nose to the throat which allow breathing through the nose)
  • Retardation of growth and/or development
  • Genital Hypoplasia (this can include in boys a small penis, undescended testicles, no urethral opening at the end of the penis and in girls it can include a small or absent labia) and urinary abnormalities
  • Ear abnormalities and hearing loss

The name "CHARGE" comes from the first letter of each of these conditions or anomalies. Children with CHARGE may have additional problems. Some of these problems include:

  • Postnatal growth problems
  • Cleft lip and/or palate
  • DeGeorge sequence (related to immunity problems)
  • CHARGE facial features (square shape of the face and head, flat cheekbones, facial asymmetry, wide nose with a high bridge, and unusual ears)
  • Tracheo-esophageal fistula (an abnormal connection between the trachea or wind pipe and the esophagus or food pipe)
  • Esophageal atresia (the esophagus or food pipe ends in a pouch instead of connecting to the stomach)

There is no laboratory test that can diagnose CHARGE Syndrome. Usually the diagnosis is made because of the presence of a number of these typically unrelated anomalies. Because of this, the diagnosis is usually made by a team of specialists, based on the specific combination of features seen in the child. These features vary greatly from one child to another. For this reason, a diagnosis of CHARGE Syndrome may be a long time coming.

The cause of CHARGE is not known. It is not known to be related to illness, exposure to drugs or alcohol during pregnancy, and typically it does not occur to more than one person in a family. It is very rare, and cannot be predicted. It is important however, to discuss the risks for passing CHARGE Syndrome to future generations with a trained geneticist.

Children with CHARGE require a great deal of medical management. There are often numerous surgeries to repair heart defects, choanal atresia, the gastrointestinal tract, the esophagus, cleft lip or palate, etc. Although many of these procedures are done when the child is a newborn, some of the less life-threatening problems may not appear until later or may have to wait until later in the life of the child to be addressed.

This results in a very difficult time for the child and the family emotionally, physically, and financially. It is easy to neglect a spouse (or other children) when such incredible demands are being made of the parents. These families have great need for support in finding medical, financial, and respite resources. Often times the hospital social worker can help families in locating these resources locally. However, it is also a good idea to contact the CHARGE Syndrome Foundation to help the family learn more about the specific condition and what other families have done in similar situations. The address for this organization follows:

CHARGE Syndrome Foundation
2004 Parkade Boulevard
Columbia, MO 65202-3121
families call (800) 442-7604
professionals call (573) 499-4694
email:

This organization provides a newsletter, informational materials, parent-to-parent networking and match-up, referrals to local resources, a national conference (see 1999 conference information), and a research registry. There are also local chapters of this organization around the country. There is also a listserv for this organization.

Once the major medical problems are addressed there are still ongoing issues related to problems with growth, sexual maturation, intelligence, vision, hearing, speech and language development, and general health. Again, not every child will have all of these anomalies present, but it is good to be aware of the issues since some of the problems may develop later in the child.

Children with CHARGE Syndrome are often sickly, especially in the early years. They frequently experience colds that turn into pneumonia. Even illnesses that would be minor for most children may become serious for them.

Though many of these children have normal intelligence, some children with CHARGE may have mental retardation which can range from mild to severe. However, the level of the child's intelligence may be difficult to assess if there is vision and/or hearing loss. This is why it is essential that children with CHARGE have their vision and hearing evaluated.

Some children with CHARGE have problems with visual acuity (either near- or farsighted) which usually can be corrected with glasses. However, some of these children may also have field losses in the upper half of the visual field which can cause problems for them in reading, travel, reading sign language or doing other visual tasks. Children with CHARGE are often sensitive to light and are more comfortable wearing sunglasses, even indoors. A good ophthalmologist can help advise the family on corrective measures. A teacher of the visually impaired can help in making recommendations for educational modifications and strategies.

If the child has a suspected hearing problem the otolaryngologist and audiologist can evaluate the child to determine if there are surgical procedures and/or assistive listening devices that can be considered. Since these children often suffer from chronic otitis media (fluid in the middle ear), they need to be monitored on a regular basis. Additionally, the teacher of the deaf and hearing impaired will be able to assist in making recommendations for educational modifications and strategies. A speech pathologist is also likely to be involved in helping the child with speech issues.

Children with CHARGE Syndrome are very different one from another. The combination of defects they experience and the impact of the combination of defects vary greatly. What these children have in common is the need to have a thorough evaluation of all the conditions they manifest and a team approach in both the medical and educational arenas that provide for the child's individual needs. The families of these children must be a part of these teams, and they must have support in addressing the unique needs of their child.

I encourage parents of children with CHARGE Syndrome to contact the CHARGE Syndrome Foundation. Your local school district staff, Regional Education Service Center staff, Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) caseworker, or TSBVI Outreach staff can also be very helpful to you.

References

Davenport, Sandra L. H., 1998. CHARGE syndrome. Paper presented at the 6th Canadian Conference on Deafblindness, Mississauga, ON, Canada.

Hefner, Margaret A., Thelin, James W., Davenport, Sandra L. H., and Mitchell, Joyce A., 1998. CHARGE syndrome: a booklet for families. Quota Club of Columbia and University of Missouri Hospital and Clinics, Columbia, MO.

Resources

Organizations

CHARGE Syndrome Foundation, Inc.
2004 Parkade Blvd.
Columbia, MO 65202-3121
Phone: (800) 442-7604 or (573) 499-4694
Fax: (573) 499-4694
email: or

This organization is the primary resource for information and activities which support families of children with CHARGE. Be sure to check the "Classified" section of this edition to learn more about the International CHARGE Syndrome Conference taking place in Houston, TX in July, 1999.

Texas Deafblind Outreach is making special travel and registration stipends available to families in Texas whose children have CHARGE so they may attend this conference in Houston. Texas families should contact Connie Miles at (281) 298-6157 or email to if they are interested in attending this conference.

Websites

CHARGE Syndrome Foundation Website
< http://www.kumc.edu/GEC/support/charge.html >

Minnow's Place
< http://www.geocities.com/Heartland/1220/ >

Rachel's Page
< http://www.priam.com/cathya/rachel.htm >

Listserv

CHARGE Syndrome Discussion List
To join the list send an email message to:
In the body of the message type: Subscribe CHARGE

Spring 2001 Table of Contents
Versión Español de este artículo (Spanish Version)

By Kate Moss, Family Specialist, TSBVI, Texas Deafblind Outreach

The 2001 Texas Deafblind Census data indicates that meningitis is one of the leading causes of deafblindness in our state. Recently in Texas there has been several scares related to outbreaks of meningitis. What is this disease and what are some of the concerns associated with it?

First of all, meningitis is not the same condition as encephalitis, although they both occur in the brain. Meningitis is the inflammation of the tissue lining of the brain and spinal cord, the meninges. Encephalitis is the inflammation of the brain itself. There are two broad categories of meningitis, viral and bacterial.

Bacterial meningitis is more uncommon, but it can be extremely serious. Often times it is fatal, especially if not treated immediately. Those who survive this type of meningitis often have a severe disability as a result. Brain injury and deafness are two common results of this type of meningitis. Babies in the USA are typically vaccinated for one type of bacteria that causes meningitis, the haempohilus influenzae type b (Hib) strain. Because of this vaccination program, this type of meningitis has practically disappeared in this country. The other two types of meningitis are meningococcal and pneumococcal. Both of these bacteria are very common. In fact, at any one time, around 10 to 25% of the population are carrying this bacteria, which lives on the back of the throat and nose. Usually these bacteria do not cause any real problems.

A person who becomes sick with bacterial meningitis needs immediate medical treatment. Antibiotics are used to treat bacterial meningitis. According to the Centers for Disease Control, high fever, headache, and stiff neck are common symptoms of meningitis in anyone over the age of 2 years. "Symptoms can develop over several hours, or they may take 1 to 2 days. Other symptoms may include nausea, vomiting, discomfort looking into bright lights, confusion, and sleepiness. In newborns and small infants, the classic symptoms of fever, headache, and neck stiffness may be absent or difficult to detect, and the infant may only appear slow or inactive, or be irritable, have vomiting, or be feeding poorly. As the disease progresses, patients of any age may have seizures." (CDC Website, 2001) A diagnosis is usually made with a spinal tap.

Viral meningitis is usually not as dangerous as bacterial meningitis although the symptoms often appear to be the same. About 90% of cases of viral meningitis are caused by a group of viruses known as enteroviruses. Herpes viruses and the mumps virus can also cause viral meningitis. There is no treatment for viral meningitis. People usually get well on their own with plenty of bedrest. They are simply given plenty of fluids and also medicine to treat the fever and headaches. Viral meningitis does usually not result in other disabling conditions and is rarely fatal.

A person may have meningitis more than one time, although this is rare. There are vaccines for some types of meningitis. Someone showing any symptoms of meningitis, should immediately see a doctor who can determine the type of meningitis present and begin treatment. Even with viral meningitis, severe problems can result from dehydration, especially in children and babies.

Both types of meningitis are spread through contact with respiratory and bodily secretions. That is why one of the best preventions for meningitis is regular and thorough hand washing. It is usually not spread through casual contact like sneezing or coughing.

When a person has meningitis, there is usually a long-term recovery period. There are also some problems which can be expected immediately following hospitalization for this illness and may disappear in time. In children we see many behavioral changes that may be due, in part, to the trauma of being in the hospital. These include babyish or clingy behavior, bed-wetting, temper tantrums, problems sleeping at night, and forgetting recently learned skills. There are other symptoms, however, that may last longer, or even be permanent. These include general fatigue, recurring headaches, problems concentrating, short-term memory loss, clumsiness, giddiness, balance problems, depression, violent temper outbursts, mood swings, bouts of aggression, learning difficulties, tinnitus (ringing in the ears), joint soreness or stiffness, visual problems such as double vision and cortical visual impairment, and the possibility of deafness, brain damage, or seizures as mentioned earlier. (Meningitis Foundation of American, 2001).

References/Resources

Meningitis Foundation of America Inc.
7155 Shadeland Station, Suite 190
Indianapolis, Indiana 46256-3922
Telephone: (800) 668-1129
Outside North America: (317) 595-6383
Web: http://www.musa.org/

The National Institute of Neurological Disorders and Stroke
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
Phone: (800) 352-9424
Web: http://www.ninds.nih.gov/health_and_medical/disorders/encmenin_doc.htm

The Centers for Disease Control and Prevention
1600 Clifton Rd.
Atlanta, GA 30333
Telephone: (800) 311-3435
Web: http://www.cdc.gov/