As a pediatric speech-language pathologist at a medical university, I had seen my share of sick children. But Johnny was different. The first time I saw him he was 4 months old and had already been diagnosed with AIDS. He was the sickest child I had ever seen. I never thought he would live until his next clinic visit.
I was wrong. Johnny is 5 now and is living successfully with AIDS. He is one of approximately 5,000 children in the United States who are infected with HIV. Since the first case of pediatric HIV was diagnosed in the Bronx, NY, in 1987, about 10,000 children have been infected with the virus that compromises the immune system and makes one susceptible to a multiplicity of dangerous, life-threatening infections. The incidence of pediatric HIV is highest in states where there are high percentages of poor African American and Latino women. The mothers who are HIV-positive pass the virus on to their children during pregnancy or during the birth process. Approximately 65% of children with HIV are African American, 17% are Hispanic, 16% are white, and 2% are Asian-Pacific Islanders (CDC; see references). In the United States, pediatric HIV is a disease of poverty.
Progression and Symptoms
Pediatric HIV is somewhat different from the HIV most commonly identified with adults. In children, HIV symptoms manifest much earlier. Some children with HIV will develop serious signs and symptoms within the first 12–24 months of life. These children are referred to as "rapid progressors." They progress very rapidly to AIDS-defining conditions and have a rapid loss of CD4 cells. These cells play important roles in the immune system. They help orchestrate the body’s response to certain microorganisms such as viruses.
Johnny was a rapid progressor. A larger group of children will present a more intermediate progression of symptoms and disease, and they are likely to manifest evidence of severe immunosuppression by 7–8 years of age. Their loss of CD4 cells is more gradual than that of rapid progressors. These children are referred to as "slower progressors."
A small group of children remain healthy with only minimal or no symptoms of HIV disease and a normal to only minimally decreased CD4 cell count through 9–10 years of age. Pediatric HIV is neurotrophic—meaning that the virus is most likely initially to affect the central (rather than peripheral) nervous system. As the virus proliferates, children can manifest central nervous system disorders such as pyramidal tract signs, encephalopathy, language compromise, and cognitive deficits. Upper-respiratory infections are also common.
Children in our clinic often have chronic sinusitis and otitis media, and, of course, the otitis media has implications for poor language development. Children who are HIV-positive can have any of the communication disorders that other children suffer. The most common issues are poor language development and loss of language milestones as the child’s medical condition worsens. In some children, the virus causes oral lesions that seriously compromise the ability to suck, chew, and swallow, and make any type of oral movement painful. Children with HIV/AIDS can also have phonological disorders, voice disorders, central auditory processing deficits, and learning disorders. About 25% of children with HIV/AIDS will be diagnosed with mental retardation or learning disorders and will require special education services.
The child with HIV/AIDS has a triple burden of poverty, illness, and being parented by a mother or parents who are themselves chronically ill. There is the issue of family disruption due to the death of parents. And there is the burden of secrecy that often surrounds the child’s HIV status and the fact that there is still discrimination directed toward adults and children who are HIV-positive. Not only are there communication and learning issues, but there are also psychosocial issues that can compound the challenges of identification, diagnosis, and treatment of children with HIV/AIDS.
The most exciting news for children with HIV/AIDS has been the medications that have been shown to have a dramatic effect on slowing the progression of the virus and controlling HIV/AIDS symptoms. Our Medical University of South Carolina Outpatient AIDS Clinic participated in a national drug study that assessed the effects of antiretroviral medications on pediatric HIV. That study found that retroviral medications can slow the virus’s progression in children just as it does in adults.
Perhaps an even more dramatic breakthrough for pediatric HIV has been the use of AZT with pregnant women to prevent the in utero infection of infants. In our clinic, we have seen the incidence of HIV-positive births drop from 25% to about 7%. And now, thanks to the aggressive use of the antiretroviral drugs, we have adolescent patients who have lived with HIV for 16 years. Their life expectancy increases each year. There is also a difference in terms of communication outcomes when children receive proper medications. As their health status improves, so do their communication skills. Treatment is still necessary, but the children learn and progress more rapidly and also are more likely to be able to maintain the gains they make.
There has been extensive research on pediatric HIV. Most of the research in the medical literature references the clinical manifestations of HIV infection. There has also been research on the effects of HIV infection on language development and the communication disorders that can result from HIV exposure and infection. Most of the research points to the fact that HIV infection compromises the acquisition and development of communication milestones. If symptoms develop once communication milestones have been achieved, they may be lost due to the encephalopathy that often accompanies pediatric HIV infection.
Now that children are living longer and more successfully with HIV infection, HIV/AIDS has become a chronic condition rather than an immediate death sentence. That opens up a whole new world of research for our professions. There are so many directions our research can take: investigations of the effects of HIV infection on literacy development, research to determine which drug combinations can most effectively combat HIV infection while preserving language and communication milestones, or efficacy studies on intervention approaches for children and adults with communication and cognitive disorders related to HIV infection.
SLPs and audiologists can have children with HIV/AIDS on their caseloads without even knowing it. Because of the disclosure laws in various states, a child’s HIV status may not be revealed even to the child’s teacher. Sometimes the term "otherwise medically involved" is used to indicate that the child has an unnamed medical condition. Consequently, professionals have to use universal precautions when working with all clients and patients. An ASHA technical report, "AIDS/HIV: Implications for Speech-Language Pathologists and Audiologists," outlines the precautions that should be followed. HIV infection is not easy to pass from one person to another, but there is no need to needlessly tempt fate. Universal precautions help ensure us of protection. No prudent SLP should stick a finger in a child’s mouth without being gloved—not only for their own protection, but for the child’s also.
Children with HIV often respond to the same intervention strategies and techniques as other children. As with any child who has a communication disorder related to an illness or a syndrome, the focus is the communication disorder and not the syndrome. Pediatric HIV may be viewed as a syndrome because there is the coexistence of medical, psychosocial, and clinical issues.
Whether I am working with a very young child on oral-motor strengthening or with an older child on pragmatic issues related to successful communication in the classroom, my focus is the communication intervention goal. But the other issues have to be addressed also. That is why a team approach is desirable with children who are HIV-positive. There are a lot of bases to be covered. There is little or no efficacy data on clinical intervention with communication disorders related to HIV infection. I approach intervention based on the type and severity of the communication disorder, the amount of time we have for intervention, the parent’s desires for the child, and the child’s health status. Sometimes children just don’t feel up to treatment so I have to use indirect intervention strategies. I also do a lot of counseling and teaching with parents so they can understand what we are trying to accomplish and how they can support the intervention process. Most parents are highly motivated to see their children achieve their academic and communication goals. They want the best for their children, especially since some of them know they may not live to see their children grow up.
With preschoolers the focus should be on helping the child develop good oral-language, phonological, and preliteracy skills. Once children get to school, we shift to helping the child develop communication skills necessary for academic success. Adolescents are very concerned about having the oral-language skills to "fit in" with their peer groups. They may feel that their HIV infection sets them apart, so it is very important that they have the verbal facility they need for good peer group interaction. Then there is also the pragmatic skill development that is required for academic success and the literacy work that is necessary for the writing and reading children have to do in high school. Sometimes augmentative communication systems are required for children who cannot develop verbal communication or have lost this ability.
Audiologists also have an important role in the care of children and adults with HIV/AIDS. The most common cause of hearing loss in people with HIV infection is otitis media. If left untreated, the infection can lead to conductive hearing loss that can seriously compromise a child’s communication development or an adult’s quality of life. In adults, sensorineural hearing impairment can result from HIV infection. Some of the most common causes of this impairment in people with HIV infection are cytomegalovirus, cryptococcosis, bacterial meningitis, toxoplasmosis, and herpes zoster. There may also be higher incidences of nasopharyngeal polyps and subcutaneous cysts in patients with HIV compared to the non-infected population. The nasopharyngeal masses can occlude the Eustachian tube, block ventilation, and contribute to the development of chronic otitis media. Mastoiditis, which can occur as a result of a compromised immune system, can also cause conductive hearing loss.
Another very important consideration is the fact that some of the drugs that are most commonly used to fight HIV infection are ototoxic. Reverse transcriptase medications (Retrovir [AZT], Hivid, and Videx) and protease inhibitors (Crixivan, Norvir, Invirase) are drugs that inhibit HIV replication, but they can all compromise hearing when used over long periods of time. People who use these drugs need to have periodic audiological evaluations to ensure that their hearing has not been compromised. If there are indications that hearing is being compromised, medications have to be changed to avoid loss of hearing. The effect of medications on hearing is one of the reasons an audiologist should be a member of the HIV/AIDS team.
Over the years our knowledge and understanding of HIV/AIDS has changed considerably. People who have the disease can still live long, productive lives. As habilitation and rehabilitation professionals, we have an important role to play in the lives of people who experience this disease. People of all ages and in all stages of the disease can benefit from the expertise and services that SLPs and audiologists have to offer them.