What is Reye’s Syndrome?

Reye’s Syndrome is a disease that is lethal to the brain and liver, but which attacks all body organs. It is a two phase illness because it always follows a previous viral infection, which includes colds, chickenpox and flu. The cause of this debilitating disease is not known, but research has proven that it’s not contagious. It can be mistaken for a variety of other illnesses, including diabetes, drug overdose, poisoning, encephalitis, meningitis, mental illness or SIDS (Sudden Infant Death Syndrome.) Reye’s Syndrome affects hundreds of children in the US each year.

When?

Reye’s Syndrome can appear at any time of the year, but for unknown reasons tends to be more prevalent in the first three months of the year. It always follows an epidemic of chickenpox or flu. Each time there is an outbreak of chickenpox or flu, there is an increase in the number of cases of Reye’s Syndrome.

Reye’s Syndrome appears just as a person is recovering from a viral infection. The liver begins to accumulate abnormal fat, as do other organs of the body. At this time, a large amount of pressure builds in the brain. This can cause death if the disease is not treated quickly and effectively. An early diagnosis is imperative to recovery and Reye’s must be caught in the early stages.

Stages

Stage One

The signs of brain dysfunction include loss of energy, listlessness, drowsiness and continuous vomiting.

Stage Two

Sufferers of Reye’s Syndrome often experience aggressive and irrational behavior, irritability, mood swings, coma, delirium or convulsions. If these symptoms appear immediately following a viral illness, Reye’s Syndrome may be the cause. All of the symptoms may not appear, nor do they appear in any specific order. Usually, Reye’s does not cause a fever. Emergency room staff that has no experience with Reye’s Syndrome often makes an improper diagnosis.

Reye’s Syndrome in Infants

The symptoms of Reye’s Syndrome in infants do not follow a pattern consistent with children and adults. Breathing may be labored and irregular or very rapid. Instead of vomiting continually, as other children do, infants often experience severe and continual diarrhea.

The Emergency Room

Emergency room staff should test for Reye’s Syndrome in infants that have severe diarrhea, respiratory problems, apneic episodes, hypoglycemia, seizures and those who are hyperventilating.

Other Patients

Vomiting, lethargy, stupor, agitation, delirium, staring, screaming convulsions and coma after a viral illness are symptoms in both adults and children. These indicate that Reye’s Syndrome may be present.

About Reye’s Syndrome

Reye’s Syndrome is a debilitating disease and can be fatal if not diagnosed and treated in the early stages. The disease usually affects children from infancy to mid-teens, but can strike at any age. Although Reye’s Syndrome normally strikes when the patient is recovering from a viral infection, it can affect those who are three to five days into a bout of viral disease.

Safety Measures

Be suspicious of Reye’s Syndrome in anyone who has had, or has, a viral illness if the person begins vomiting continually. If this happens, contact your doctor immediately. If she is not available, take the patient to the hospital. Once there, be sure that two liver tests, SGOT and SGPT, are conducted to rule out Reye’s. If the disease is diagnosed and treated in the early stages, there is a 90% chance of a full recovery.

Aspirin

Research has concluded that aspirin and medications containing aspirin can increase the chances of contacting Reye’s Syndrome if used to treat a viral illness. Never take aspirin or administer it to someone under your care, if suffering from a viral illness. Contact your physician before taking any medications for chickenpox or flu. This is particularly important for aspirin and medications that treat nausea.

The US Surgeon General, the National Reye’s Syndrome Foundation, the American Academy of Pediatrics and the Food and Drug Administration warn of the dangers of administering aspirin to children and teens. No person under the age of nineteen should ingest aspirin for any reason.

Reye’s Syndrome Facts

• Reye’s Syndrome can strike anyone, including both genders and any race. No one is immune, though it is more common in infants and children.

• Research has proven that 95% of those who contacted Reye’s Syndrome after a viral illness had ingested aspirin.

• Reye’s Syndrome almost always follows a viral illness of the upper respiratory tract. This includes colds, chickenpox, influenza, bronchitis, and ear infections.

• A fever doesn’t necessarily accompany symptoms of Reye’s Syndrome.

• Aspirin does not have to be ingested for Reye’s Syndrome to strike.

• Reye’s Syndrome can run from a few hours to days in duration.

• Sufferers of Reye’s Syndrome must be diagnosed and treated immediately to ensure the disease isn’t fatal.

Treatment

Reye’s Syndrome is a rapidly progressive disease and treatment varies. Time is of the essence when someone contacts this debilitating disease. There is no cure for Reye’s Syndrome and for it to be successfully managed, early diagnoses is imperative. Treatment is given to protect the brain against permanent damage by reducing the swelling that occurs with Reye’s.

Severe Reye’s Syndrome

Anyone suffering from a severe case of Reye’s Syndrome must seek the services of an intensive care unit and doctors and nurses that have experience in treating the disease. Children suffering from Reye’s should be admitted to a hospital that specializes in children’s disease. Others should be treated at a teaching hospital. If this isn’t possible, the local hospital should immediately consult with health care professionals at either a children’s or teaching hospital in order to ensure proper treatment.

Reye’s and Mortality

Reye’s Syndrome was discovered in 1963. At that time, the morality rate was 80%. Ten years later, it had been reduced to 40% and by 1983 it was down to 31%. In 1996 the mortality rate increased to 50%, probably because of misdiagnosis.

Recovery

Recovery from Reye’s Syndrome is related to the amount that the brain swells during the course of the illness. Some people make a full recovery while others sustain a range between slight and extremely severe brain damage. If a Reye’s sufferer progresses rapidly into the disease and lapses into a coma, the prognosis for a full recovery is poor.

Reye’s patients who survive the disease should undergo neuropsychological and psychological testing. Parents of children who are disabled by Reye’s Syndrome should become familiar with the Equal Opportunities for Individuals with Disabilities Act as well as the Disabilities Act of 1990. Both of these acts can be accessed at all public libraries.

The Reye’s Syndrome Survivor

Some Reye’s Syndrome survivors suffer from brain damage and/or disability. There are no statistics available as the numbers of patients who are affected in these ways have never been recorded. Brain damage and disability can range from very slight to extremely severe. Rehabilitation attempts differ greatly and cannot be predicted. Parents of children who suffer from Reye’s Syndrome should be aware of potential problems and serves that can assist them. Early psychological evaluation is imperative and should be followed-up in order to identify any problems. Appropriate educational assistance and a proper course of therapy should be implemented.

Problem Areas

Specific problem areas that may appear after Reye’s Syndrome includes, but may not be limited to, difficulty concentrating, trouble remembering, inattention, unable to complete certain tasks that at one time could be completed with ease, difficulty with language and/or speech and changes in activity levels. Specific problems may arise in combination with other problems or individually. These problems can cause a child’s academic marks to plummet or change their ability to concentrate and complete tasks. Difficulty with mathematics, reading, spelling and/or writing may become apparent. Children who had pre-existing problems may have more severe difficulties after suffering Reye’s.

Some children appear to have escaped the effects of Reye’s Syndrome only to have them appear later. Parents should be vigilant to changes in academic, mental or physical changes in children who have suffered from Reye’s.

Evaluation

In order for learning disabilities to be properly assessed, a team of medical professionals should become involved. Each team should consist of a neurologist, a family physician, a speech therapist, a physical therapist, the child’s pediatrician and the child’s educators. The evaluation should be requested by the child’s parents through the local school system.

Family Life After Reye’s Syndrome

The family is going to go through major adjustments when the brain damaged or other special needs child comes home from the hospital. Life will never be quite the same, though there are a variety of things you can do to make it as normal as possible.

The special needs child will need lots of attention and a great deal of patience and understanding, which will require a great deal of the family’s energy. Parents and siblings need to be aware that the child after Reye’s Syndrome will be a completely different person that the one who existed before the illness. Both the child’s personality and abilities will be different. Let’s look at some of the traits that are common in children with Reye’s Syndrome.

• Withdrawal and uncommunicative.

• Hypochondria

• Fear of doctors, nurses, hospitals and other health care professionals.

• Severe attacks of anxiety and depression.

• Constant restlessness.

• Wets and/or soils the bed.

• Experiences nightmares and other sleep disturbances.

• May want to eat constantly or refuse to eat.

• Experiences motor tics.

• Regresses to previous levels.

• May be clingy or overly dependent on parents or family members.

When you bring the Reye’s child home from the hospital, be sure not to make them the center of attention. After the child has had time to recuperate, assign them chores and responsibilities that are equal to their ability. Try to get the child into a routine. Though life will never be quite the same, it can have a level or normalcy.

Reducing Fear and Anxiety

Depending on the child’s age, fear and anxiety can be lessened through verbalization, play and other activities. These types of interactions can also help the child gain self confidence and security by controlling the activity. Encourage the child to participate in dramatic play through the use of cars, dolls, trucks and modeling clay; anything that encourages the use of the child’s imagination. This will help the child return to as normal a life as possible and make them feel like a person instead of a patient. Be sure to listen to the child with patience and love and respond with an optimistic attitude and words.

Grieving

Just as a family grieves the death of a child, there is a grieving process when a child suffers residual effects from Reye’s Syndrome. Parents, siblings and close extended family members will mourn the part of the child that is lost forever. Feelings of guilt, disbelief, fear, sadness, frustration, fear, regret, anger, despair, loneliness, helplessness and isolation are common. These feelings and emotions are perfectly normal and have to be accepted as such. If not, additional family problems will occur and set the family unit into a state of turmoil and upheaval. This will make problems more pronounced and a vicious circle that has no end will begin.

Emotions and Feelings

Many times mothers tend to dedicate themselves wholly to the Reye’s child and neglect the other members of the family. On the other hand, sometimes family members go to the extreme and totally reject and withdraw from the Reye’s child. All emotions must be monitored closely so that feelings of guilt, jealousy and grief can be resolved. Open discussion among all family members is imperative and everyone needs to truthfully express their feelings to the others.

If your child has recently come home from hospital after being treated for Reye’s Syndrome, don’t hesitate seek professional help in order to resolve all issues of grieving. Families with special needs children have access to many resources that will help them cope both emotionally and financially.

Family Counseling

Family counseling can help all family members make adjustments that are necessary to cope with a special needs child. Short term assistance goes a long way in preventing problems over the long term. If you are in need of these resources, ask your family or your child’s pediatrician to give you a referral. You can also contact local child and family agencies.

Dealing with Reye’s Syndrome Disabilities

Though brain damage is not reversible, most often children that have experienced Reye’s Syndrome can progress and learn. Parents and family members must remember that the Reye’s Syndrome child can change and grow and they must be given the opportunity and room to progress at their own rate of speed. Family members should work together to see that all needs of the Reye’s child is met and to ensure the family continues to function in a normal fashion. Families must explore all options of treatment and when a decision is made all members need to support it. It is imperative that the family unit is balanced and harmonized as soon as possible after the Reye’s child returns home.

The social service department of the hospital where your child was admitted plays a large part in assisting your family. Social services should prepare a discharge summary in conjunction with the child’s medical team and parents. The discharge summary should give detailed recommendations for future evaluation and therapy. This should include occupational, physical and speech therapy, as well as any special education needs. A list of social service agencies should be included with each discharge summary. If the hospital doesn’t include this list, ask for a copy.

Parents should also take advantage of library services. Many communities publish directories that will point them to helpful local services. These are usually distributed to all public libraries.

The Reye’s Child’s Rights

All children between the ages of three and twenty-one years are entitled to a free public education that has been tailored to fit their needs. It is federal law that all school districts provide special education when necessary. The law includes therapy and transportation and is not limited to children who have had Reye’s Syndrome.

The services for children under three years old vary greatly from one state to another. Some states provide rehabilitation and education while others don’t. Be sure to contact your state’s Department of Education and speak to someone from the Special Education Division to find out if your infant or toddler will be offered this service and if they are eligible.

Institutional Care

A very small number of children who have suffered effects of Reye’s Syndrome require institutional care. The decision to institutionalize a severely handicapped child should be based on the needs of the child and the family, not on medical information.

Other Options

Parents of a disabled Reye’s child should research the Individuals with Disabilities Act to ensure their child receives the benefits and services to which they are entitled.

More Facts About Reye’s Syndrome

• Remember that not all children who contact Reye’s Syndrome are disabled.

• If disability does occur, it can range from very mild to extremely severe, depending on soon diagnosis is made and treatment is given.

• Only a very low percentage of children contact Reye’s Syndrome a second time.

• Help is available for Reye’s children and their families.

Reye’s Syndrome is definitely a debilitating disease that greatly affects children and their families. If you need more information on Reye’s Syndrome, contact the National Reye’s Syndrome Foundation (NRSF.)