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After Reye's Syndrome

The National Reye's Syndrome Foundation offers the following information to parents of children who have experienced Reye's Syndrome. It is furnished to provide assistance in understanding the  potential needs of the RS survivor and the family and, in addition, to provide guidance in securing any necessary services.

It is possible for the RS survivor to recover completely with no after-effects or observable changes. There may, however, be recovery with brain damage and disability ranging from very slight motor or learning disabilities to profound brain injury.

 

What are the Potential Problems
of the Reye's Syndrome Survivor?

Reye's Syndrome can result in brain damage and disability in some survivors. The number of cases of RS which fall into this category is unrecorded. If damage occurs, it can range from slight to profound, depending on the individual case. Likewise, the rehabilitative requirements will range from minimal remediation to institutional care. Since there is such a wide range of possibilities, and since these possibilities are to a certain extent unpredictable, parents need to become aware of the potential problems and the appropriate services which may be required. Early evaluation following physiological recovery should be pursued for the purpose of identifying problems and beginning any appropriate educational remediation and/or therapy.

 

Following are specific problem areas that may be observed:

  • Problems with attention
  • Problems with memory
  • Difficulty with concentration
  • Speech and language difficulties
  • Problems with fine or gross motor skills
  • Changes in the child's activity level
  • Difficulty with task completion
Elissa Bell Sargent
NRSF Poster Child
Age 4, 1999
Reye's Syndrome Survivor

Any specific problem may occur individually or in combination with others. Any or all of the above may manifest themselves in learning or academic problems. For example, a change in academic performance may reflect a change in the ability to attend or to concentrate on a task. Difficulty with math, spelling, writing, or reading may occur. A pre-existing learning problem may become more severe following Reye's. Also, some RS survivors may appear after recovery not to  have any residual effects; however, problems may later be observed in the areas mentioned above.

Evaluation for learning disabilities requires a multi-disciplinary team consisting of the child's pediatrician or primary care physician, neurologist, psychologist, educators, the family and possibly others such as a speech therapist, physical therapist, and occupational therapist. This evaluation can be requested by the parent through the local school system.

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When the Child Comes Home from the Hospital

There are many adjustments required by the family suddenly faced with the fact of a brain-injured or other special needs child. These children need a great deal of attention, understanding and, therefore, use a great deal of the family's energy. Parents need to realize that the child who returns from the hospital can be a very different child from the one who entered the hospital with Reye's. His or her abilities may be very altered and, indeed, the child's personality may seem to be changed.

 
The following traits are common following hospitalization:
  • Overdependency, clinging
  • Refusing to eat or overeating
  • Sleep disturbances
  • Bed wetting or soiling
  • Regression to earlier levels of behavior
  • Motor tics
  • Depression, anxiety
  • Fear of hospitals and medical personnel
  • Restlessness
  • Uncommunicative states
    (withdrawal from contact with others)
  • Over concerned with the body (hypochondria)

Once home from the hospital, the child should not become the center of attention. He or she should be given responsibility equal to ability as soon as possible. For the benefit of all family members, there should be a return to normal family life.

The recovering child can reduce anxiety and fear through play activities and verbalization, depending upon his or her age. At the same time, such play can help the child gain confidence and security through the control of the play situation. Dramatic play using modeling clay, dolls, cars/trucks, etc., can ease the return to normal life as he or she comes to be treated more as a well person and less as a patient. Listening to the child patiently and lovingly will be very helpful.

As there is a grieving process following the death of a child, so there is also a grieving process for the family of a child who survives with residual effects. The entire family, not just parents, will experience a wide range of emotions, including disbelief, sadness, guilt, fear, frustration, loneliness, helplessness, regret, despair, anger and isolation. It is critical that these feelings be accepted as normal. There are many possibilities for additional problems that may result from the emotional turmoil of all of the family members. There may be a tendency for the parents, especially mothers, to dedicate themselves to the child and neglect other family members. Or, there may be the other extreme -- intolerance and actual rejection. Emotional responses should be closely monitored so that such feelings as jealousy and guilt do not go unresolved. Family discussions of the situation should be open and frank, with all members participating and all members being encouraged to share their feelings. The initial denial and then despair experienced in the grieving process will eventually give way to acceptance, if these emotional responses are acknowledged and resolved.

Whatever the reaction, a family with a child with multiple special needs requires support emotionally as well as financially. The family needs to know that there are resources available to help them and what these resources are. Family counseling may be in order to assist in making the adjustments required by the child's altered condition. Short-term intervention can have profound effects in preventing future long-term problems for the entire family. Local child and family service agencies are a good resource.

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Dealing with Disability

Although brain damage is not reversible, it is true that much progress is possible. Parents must remember that their child has the capacity to grow and change, and that he or she must be given the room to do so. The family of the brain-injured Reye's Syndrome survivor should take steps to ensure that the child's needs are met and, at the same time, ensure that the family as a whole can continue to function normally. Treatment options should be explored and, when a decision is reached, should be supported by all family members. The quality of life for the entire family can and should remain at normal levels. It is very important that a sense of balance be reached and maintained as soon as possible.

The hospital social services department can play a vital role in assisting the family. That department, in cooperation with the parents and medical team, should prepare a discharge summary, detailing recommendations for future evaluations and therapies (speech, physical, occupational, etc.) and possible educational needs, as well as service agencies in the child's community which would assist in the implementation of the discharge recommendations. 

The local public library can also be useful to parents who are trying to find services for their child. Many communities publish directories of social service agencies. 

A child with disabilities, age 3 through 21, is entitled to a free appropriate public education, individually tailored to his or her needs. Federal law requires local school districts to provide special education services and includes any necessary therapies and/or transportation. In addition, there are special schools, private rehabilitation centers, and special education settings in the private sector which for various reasons may be better suited to a child's needs. These facilities should be considered when making a decision about the child's placement. 

If the child is under 3, available services vary from state to state. Some states provide educational and rehabilitative services to infants and toddlers in a wide variety of settings. Contact the Special Education Division of your state's Department of Education for information on what is offered. The social services department of the hospital should be able to assist in carefully evaluating the available services to select a program which is best suited to the child's and the family's needs.

 

A small percentage of RS survivors will require extended institutional care. Usually, however, the decision to institutionalize a severely disabled child is not primarily a medical one, but one that should be made based on the needs and capabilities of the child and the family. Parents should be aware of the different types of facilities available in their area and should thoroughly investigate these facilities, including on-site visits, to find a program appropriate for the child. Family counseling may be needed to help the family adjust to the decision to institutionalize the disabled child.

It is recommended that parents become familiar with the Individuals with Disabilities Education Act (Title 20, Chapter 33, Sec. 1400 and Sec. 701) of the Rehabilitation Act of 1973 so that they can ensure that their child receives the benefits to which he or she is entitled.  Families may also contact the State Developmental Disabilities Agency in their state. The KDWB Variety Family Center, University of Minnesota Gateway, can be a worthwhile resource, providing up-to-date facts on new state and federal laws and offering information on how to use legal rights to get the best possible programs for handicapped children.  

 

Remember...

  • Reye's Syndrome survivors may have NO after-effects.
  • If damage occurs, it can range from slight to profound, depending on the individual case.
  • Currently, available information indicates that only a very small percentage of RS survivors will develop RS again.
  • YOU ARE NOT ALONE. HELP IS AVAILABLE.

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RESOURCES

  • The Rehabilitation Act of 1973, Title 29, Chapter 16, Sec. 701 United States Code
  • Individuals with Disabilities Act, Title 20, Chapter 33, Sec. 1400
  • Equal Opportunities for Individuals With Disabilities Act, Americans With Disabilities Act of 1990, Title 42, Chapter 126, Sec. 12101-12213
  • Americans with Disabilities Act Information Line, Phone 1-800-514-0301 or 1-800-514-0383 (TTY)  
    Internet: www.usdoj.gov/crt/ada  
    Provides information to businesses, states and local government officials, persons with disabilities, and others on Titles II and III of the Americans with Disabilities Act.
  • Heath Resource Center, Phone: 1-800-544-3284 or 1-800-544-3284 (TTY) 
    Provides information for people with disabilities who are seeking education or training after high school.
  • Job Accommodations Network, Phone: 1-800-526-7234, 1-800-ADA-WORK, 1-800-DIALJAN, 1-800-526-7234 (TTY)
    E-mail: jan@jan.icdi.wvu.edu or Internet: http://janweb.icdi.wvu.edu
    Provides information on accommodations for people with disabilities in work settings. Assists with information about equipment purchasing, policy modification, and compliance with the Americans with Disabilities Act.

  • Contact your local health department.

  • Contact your Special Education Division of the local school system.

  • KDWB Variety Family Center, University of Minnesota Gateway, 200 Oak Street SE, Minneapolis, Minnesota 55455-2002.  Phone: 612-626-3087, FAX:  612-626-2134, E-mail:  instihd@tc.umn.edu, web site: www.peds.umn.edu/peds-adol/kd.html 

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National Reye's Syndrome Foundation, Inc.
E-mail: nrsf@reyessyndrome.org
Toll Free: 1-800-233-7393 (U.S. only)
Telephone: 1-419-636-2679
FAX: 1-419-636-9897
Copyright 2003 National Reye's Syndrome Foundation