There has been tremendous outpouring of community sympathy over the tragic death Wednesday of 4-year-old Nicholas DeSisto. Because it takes time for diagnostic tests there was some confusion about the reason for this death and this may have caused some fear among parents in the community. We are writing to provide a unified message about the illness and to help clarify

and hopefully calm any remaining concerns.

Nicky did not die from meningitis as stated in the original Bangor Daily News article of Nov. 3-4. He died from a very rare disease in children – streptococcal toxic shock syndrome or STSS. While Group A Strep is a very common bacterial infection in winter, it almost always causes either no symptoms or the classic strep throat. Extremely rarely in children, it can cause STSS associated with a local skin, muscle, or bone/joint infection as in Nicholas’ case. Shock can develop very rapidly and with little warning. We do not completely understand why some individuals develop STSS. It appears to involve a combination of coinciding factors including a toxic form of strep, unique host/immune susceptibility, and a uncontrollable overreaction of the host’s immune system to the strep bacteria’s toxins leading to irreversible septic shock. Although very uncommon it is seen more often reported in infections of extremities in the elderly than in children.

While the common strep throat is contagious with close “touching” contact, cases of STSS are rare and usually occur as single cases. STSS has NOT occurred in epidemics. Close personal contacts of Nicholas have been reached by telephone by a responsive team effort of the Bureau of Health CDC Office in Maine, the University of Maine Cutler Health Center, and Bangor pediatricians.

The initial recommendation was very appropriate to preventatively treat close personal contacts with Rifampin or Cipro for presumed meningococcal blood infection-a more common and contagious cause of septic shock in children. Once the diagnosis was confirmed to be STSS this past Saturday, the direct family and preschool contacts were renotified to obtain throat cultures. Throat cultures were performed as a precaution. Throat cultures identify if there were any carriers of this bacteria among any of the close contacts. There is no treatment necessary unless the throat cultures are positive. Carriers are at little risk of developing STSS.

There are a number of key points to remember in reflecting upon this tragic situation. Parents do not need to worry about an epidemic of Streptococcal Toxic Shock Syndrome – cases are almost always sporadic and all close contacts have been evaluated.

The symptoms of a common strep throat infection include isolated, sever sore throat without a cold and cough. The diagnosis of strep throat is made by a throat culture. Only after the culture results are known should there be treatment with antibiotics.

Most sore throats that include cold and cough symptoms are caused by upper respiratory viruses that cannot and should not be treated with antibiotics. Unnecessary treatment of viral respiratory infections (runny nose, cough, mild sore throat) with antibiotics leads to bacterial resistance. Overuse of antibiotics is a very serious problem and poses a risk both for the health of our community and the health of your child.

Very rarely, Group A Strep can cause a syndrome of rapidly spreading skin infection or very painful arms and legs with fever. These are emergency signs that can lead to shock and need immediate medical attention. Unfortunately, this child had no signs of persisting fever, skin rash, or knee swelling to give a clue to his developing STSS.

Routine childhood immunizations are the most effective way to prevent serious infections in your child. They have dramatically reduced the incidence of major childhood killers including Diphtheria, Pertussis, Tetanus, Polio, Measles, Hemophilus B, and chickenpox in this country. Unfortunately there is no vaccination for Group A Strep.

Children with chickenpox are more likely to develop strep skin infections and this is a major reason to get your child immunized against chicken pox.

Parents really do know their children and these caregivers’ response to a child’s fever should include a careful routine of a.) checking for associated symptom “clues” to diagnosis such as cold/cough, vomiting/diarrhea, joint/bone pain, headache/neck pain; b.) checking the behavior “big picture” for severe lethargy/irritability, the ability to drink and retain fluids, as well as, interaction with parents, siblings, and friends, c.) checking the “physical exam” of your child for danger signs such as unusual rashes or rapid breathing.

We are fortunate to have a very good Bureau of Health and Medical Examiner Team in Augusta who helped to determine the infectious cause of Nicholas’ death and spent hours of telephone time with us communicating rapidly with close family and preschool contacts. Drs Greenwald and Askland in particular are to be commended.

Improvements to the coordination of our system of emergency communication need to occur. An emergency communication system (email, telephone tree and office fax) must rapidly link all healthcare services. The Bureau of Health, community emergency services, the University of Maine Health Center, and our widely scattered network of primary care practices in Maine need a more standardized, efficient, and effective medical response to properly manage public health emergencies. We are working right now with emergency physicians at EMMC, the Bureau of health, the University of Maine and area physicians to improve and enhance the current emergency notification system and integration of care.

We know that parents and caregivers dearly love their children and want only the best for them. Nicholas was very fortunate to have parents who deeply loved him and took delight in his very short life. Our children are a passing treasure and need to be appreciated each and every day. As parents like Jennifer and Bill, we need to take the time to share in our children’s physical, mental, emotional, and spiritual growth.

Dr. Robert Holmberg, M.D., MPH is a doctor of pediatric infectious disease at Eastern Maine Medical Center, Norumbega Pediatrics; Dr. Mark Jackson is director of Health Services at the University of Maine.