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ALERT: Reye's Syndrome Information
Be Wise about Reye's--Kids and Aspirin Products DON'T MIX
FOR FREE Liturature to download and print, GO TO: www.ReyesSyndrome.Org/schools.html
A MUST READ FOR PARENTS WITH CHILDREN UNDER THE AGE OF 18What is Reye's Syndrome?
Reye's Syndrome is a disease which affects all organs of the body, but most lethally the liver and the brain. Reye's Syndrome is a two-phase illness because it is almost always associated with a previous viral infection, such as influenza, cold, or chicken pox. Scientists do know that Reye's Syndrome is not contagious and the cause is unknown. Reye's Syndrome is often misdiagnosed as encephalitis, meningitis, diabetes, drug overdose, poisoning, Sudden Infant Death Syndrome, or psychiatric illness.
Reye's Syndrome tends to appear with greatest frequency during January, February, and March when influenza is most common. Cases are reported in every month of the year. An epidemic of flu or chicken pox is commonly followed by an increase in the number of cases of Reye's Syndrome.
When Reye's Syndrome develops, it typically occurs when a person is beginning to recover from a viral illness. Abnormal accumulations of fat begin to develop in the liver and other organs of the body, along with a severe increase of pressure in the brain. Unless diagnosed and treated successfully, death is common, often within a few days. A person's life depends upon early diagnosis. Statistics indicate an excellent chance of recovery when Reye's Syndrome is diagnosed and treated in its earliest stages. The later the diagnosis and treatment, the more severely reduced are chances for successful recovery and survival.
To download any and all literature and materials related to the Reye's SyndromeAwareness Program, go to: www.ReyesSyndrome.Org/schools.htmlStages of Reye's Syndrome Stage I:
Persistent or continuous vomiting
Signs of brain dysfunction:
Listlessness
Loss of pep and energy
Drowsiness
Stage II:Personality changes:
Irritability
Aggressive behavior
Disorientation:
Confusion
Irrational behavior
Combative
Delirium, convulsions, comaReye's Syndrome should be suspected in a person if this pattern or symptoms appear during or, most commonly, after a viral illness. Not all of the symptoms have to occur, nor do they have to be displayed in this order. Fever is not usually present. Many diseases have symptoms in common. Physicians and medical staff in emergency rooms who have not had experience in treating Reye's Syndrome may misdiagnose the disease. The symptoms of Reye's Syndrome in infants do not follow a typical pattern. For example, vomiting may be replaced with diarrhea, and they may display irregular breathing.
Facts You Need to Know About Reye's Syndrome
Fact: No one is immune. Reye's affects all ages, both genders, and every race.
Fact: Reye's will generally follow a viral illness or upper respiratory infection, i.e., cold, flu, chicken pox, ear infection, etc.
Fact: Research figures show that 90 to 95 percent of Reye's Syndrome patients in the United States have taken aspirin during a preceding viral illness.
Fact: A fever need not be present.
Fact: Reye's Syndrome occurs year-round, not just during the winter months.
Fact: Reye's Syndrome runs its course within a matter of hours to just a few days.
Fact: Aspirin and salicylate-containing medications do not have to be ingested to bring on Reye's. These medications only increase a person's chance of developing the disease. (See Medication List below)
Fact: A person diagnosed with Reye's Syndrome must be hospitalized and treatment begun immediately.
Influenza Virus Remember... Reye's Syndrome usually appears after a flu-like infection, upper respiratory infection, chicken pox, or other viral illness. The early signs are:
- Continuous vomiting
- Listlessness
- Loss of energy
- Aggressiveness
- Confusion
- Irrational behavior
Medicines can mask symptoms.
Do not give your child aspirin
or anti-nausea medications.Call your doctor immediately.
Reye's Syndrome is always
a medical emergency.Abnormal Liver Tests: SGOT
and SGPT strongly suggest a
diagnosis of Reye's Syndrome.Time is important!Early diagnosis is VITAL.What is the Role of Aspirin?
Epidemiological research has shown an association between the development of Reye's Syndrome and the use of aspirin (a salicylate compound) for treating the symptoms of influenza-like illnesses, chicken pox, colds, etc. The U.S. Surgeon General, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics recommend that aspirin and combination products containing aspirin not be given to children under 19 years of age during episodes of fever-causing illnesses. Acetylsalicylate is another word for aspirin; some medicine labels may use the words acetylsalicylate, acetylsalicylic acid, salicylic acid, or salicylate instead of the word aspirin. Always ask your doctor or pharmacist before taking any medication.
It is possible to develop Reye's Syndrome without taking aspirin. However, the chances of developing Reye's Syndrome can be reduced by not giving aspirin to individuals for relief of discomfort or fever without first consulting a physician for each specific use. Anti-nausea medications may also contain salicylates, and may mask the symptoms of Reye's Syndrome.Teenagers and adults are especially at risk of developing Reye's Syndrome due to self-medication. Too often, teenagers are ingesting aspirin-type products without parental knowledge. Teenagers should be made aware of the different forms of pain relievers on the market and make certain they check with a parent before using any medications.
Aspirin or Salicylate-Containing Medications
Epidemiologic research has shown an association between the development of Reye's Syndrome and the use of aspirin-type products for treating the symptoms of influenza-like illnesses and chicken pox. The National Reye's Syndrome Foundation, U.S. Surgeon General, the Food and Drug Administration and Centers for Disease Control and Prevention recommend that aspirin and combination products containing aspirin not be given to children or teenagers who are suffering from one of these illnesses. This listing shows products containing aspirin or salicylate compounds. THIS IS NOT A COMPLETE LIST! Some medication labels may use the words acetylsalicylate, acetylsalicylic acid, salicylic, salicylamide, phenyl salicylates, etc., instead of the word aspirin. There is not data as to other forms of salicylate other than aspirin associated with the development of Reye's Syndrome, but until further research has answered this question, we recommend products listing these substances not be used at all in children and adolescents, because a virus may already be present before symptoms appear. Product ingredients may be reformulated periodically, so always check the label. When in doubt ask your doctor or pharmacist.
Alka-Seltzer Alka-Seltzer Original Effervescent Antacid and Pain Reliever
Alka-Seltzer Cherry Effervescent Antacid and Pain Reliever
Alka-Seltzer Extra Strength Effervescent Antacid and Pain Reliever
Alka-Seltzer Lemon Lime Effervescent Antacid and Pain Reliever
(Bayer)
Anacin Anacin Tablets
(Whitehall Robins)
Ascriptin Ascriptin Regular Strength
Ascriptin Arthritis Pain
Ascriptin Enteric
Ascriptin Maximum Strength
(Novartis)
Bayer 8-Hour Bayer Timed Release
Bayer Extra Strength Arthritis Pain Regimen Formula
Bayer Genuine Aspirin Tablets and Caplets
Bayer Extra Strength Aspirin Caplets and Tablets
Bayer Aspirin Regimen Regular Strength 325 mg. Caplets
Bayer Aspirin Regimen Adult Low Strength 81 mg. Tablets
Bayer Aspirin Regimen Children's Chewable Aspirin
(Orange or Cherry Flavored)
Bayer Aspirin Regimen 81 mg. Tablets with Calcium
Bayer Extra Strength Plus Caplets
Bayer Extra Strength PM Aspirin Plus Sleep Aid
Bayer Therapy
(Bayer)
BC BC Powder
BC Allergy Sinus Cold Powder
BC Arthritis Strength Powder
BC Sinus Cold Powder
(Block)
Bufferin Bufferin Analgesic Tablets
(Bristol-Myers)
Doan's Doan's Extra Strength Analgesic Caplets
Doan's Regular Strength Analgesic Caplets
Doan's Extra Strength PM
(Novartis)
Dristan Dristan Regular
Dristan Formula P
(Whitehall Robins)
Ecotrin Ecotrin Enteric Coated Aspirin Low Strength Tablets
Ecotrin Enteric Coated Aspirin Maximum Strength Tablets
Ecotrin Enteric Coated Aspirin Regular Strength Tablets
(SK Beecham)
Excedrin Excedrin Extra Strength Analgesic Tablets, Caplets and Geltabs
Excedrin Migraine Tablets (Bristol-Myers)
Goody's Goody's Extra Strength Headache Powder
Goody's Extra Strength Pain Relief Tablets
(Block)
Kaopectate Kaopectate New & Improved
Childrens Cherry Flavor
(Pharmacia)
Norwich Norwich Aspirin
(Chattem)
Pamprin Pamprin Maximum Cramp Relief Two Pain Relievers Caplets
(Chattem)Pepto-Bismol Pepto-Bismol Original Liquid, Original and Cherry Tablets, and Easy-to-Swallow Caplets
Pepto-Bismol Maximum Strength Liquid
(Proctor & Gamble)
Sine-Off Sine-Off Sinus Medicine
(Hogil Pharmaceutical)
St. Joseph St. Joseph Adult Chewable Aspirin Tablets
(Schering-Plough)
Vanquish Vanquish Analgesic Caplets
(Bayer)
YSP YSP Aspirin Capsules
(Carlsbad Technology)
The following topical products are listed as they also contain forms of salicylates. While these products are not ingested through the mouth, certain ingredients may be absorbed through the skin and therefore a potential risk where Reye's Syndrome is concerned. Be sure to check ingredient labels. These products are not ingested and as such, not required to carry the aspirin warning.
Acne Cleaners Acne Creams Arthritis Pain Rubs Astringents Dandruff Shampoos Exfoliating Moisturizers Facial Scrubs Facial Masques Muscle Pain Relief Creams Sport Strength Sun Block Wart Removers Wintergreen Scented Oils Acuprin 81 Adult Low Dose Aspirin
(Richwood)
Aggrenox Capsules
(Boehringer-Ingelheim)
Butalbital Aspirin, Caffeine and Codeine Phosphate Capsules, USP
(Watson)
Carisoprodol Carisoprodol and Aspirin Tablets
(Par)
Darvon Compound-65
(Lilly)
Disalcid Capsules and Tablets
(3M)
Easprin Delayed-Release Tablets
(Lotus Biochemical)
Endodan Tablets, USP CII
(Endo Generics)Equagesic Tablets
(Wyeth-Ayerst)Fiorinal Capsules and Tablets
With Codeine Capsules
(Novartis)
Fiortal With Codeine Capsules
(Geneva)
Gelpirin Tablets
(Alra)
Halfprin Tablets
(Kramer)
Helidac Helidac Therapy
(Prometheus Labs)
Lobac Capsules and Tablets
(Seatrace)
Lortab ASA Tablets
(UCB)
Magan Tablets
(Savage)
Magsal Tablets
(U.S.)
Methocarbamol Methocarbamol and Aspirin Tablets
(Par)
Mono-Gesic Tablets
(Schwarz)
Norgesic Tablets
Forte Tablets
(3M)
Percodan Tablets
(Endo Labs)
Propoxyphene Compound 65 Capsules
(CIU) (Teva)
Robaxisal Tablets
(Robins)
Roxiprin Tablets
(Roxane)
Salflex Tablets
(Carnrick)
Salsalate Tablets
(Duramed)
Soma Compound Tablets
Compound with Codeine Tablets
(Wallace)
Synalgos-DC Capsules
(Wyeth-Ayerst)
Talwin Compound
(Sanofi-Winthrop)
Trilisate Liquid and Tablets
(Purdue Frederick)
Treatment of Reye's Syndrome
The treatment of Reye's syndrome varies. Reye's Syndrome is an acute, rapidly progressive disease. It should be treated as a medical emergency, and time is of the utmost importance. The chance of recovery is greatly increased when it is treated in its earliest stages. To date there is no cure for the disease. Successful management of the disease depends on early diagnosis. Therapy is primarily directed to protect the brain against irreversible damage by reducing the brain swelling.
People with Reye's Syndrome require the services of an intensive care unit and physicians and nurses experienced in the treatment of the disease. A person with Reye's Syndrome should be transferred to a teaching hospital or a children's hospital. If this is not possible, immediate phone consultation with a teaching hospital or children's hospital. The majority of individuals with Reye's Syndrome are children; however, cases have been reported in adults.
If Reye's Syndrome is suspected, two liver function tests should be done immediately:SGOT (SAT) SGPT(ACT) The results of these tests are commonly available within 2-3 hours. Abnormal SGOT and SGPT strongly suggest a diagnosis of Reye's Syndrome. Immediate further diagnostic testing will give a definite diagnosis.
In 1963 when Reye's Syndrome was discovered, the death rate was at 80%. In 1973, the mortality rate was estimated around 40%, and in 1983 it was lowered to 31%. In 1996, the mortality rate increased to 50%. It is believed that this increase occurred due to misdiagnosis of Reye's Syndrome.
Recovery is related to the severity of the brain swelling. Some people recover completely. Others may sustain brain damage, extending from slight to severe brain dysfunction. Those who progress rapidly through the stages and lapse into a coma have a poorer prognosis than those with a less severe disease. All people surviving Reye's Syndrome should be evaluated using quantitative psychological and neuropsychological tests.
For those survivors with disabilities, please refer to resources including Crippled Children's Services, State Developmental Disabilities Agencies, child development clinics, local school systems, and health departments. Parents also should familiarize themselves with Equal Opportunities for Individuals with Disabilities Act, Americans with Disabilities Act of 1990, Title 42, Chapter 126, Sec. 12101-12213 available through public l
After Reye's SyndromeThe 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
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.
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.
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 community services lists and phone numbers.
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.
- 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: http://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. -
Contact your local health department.
