Special Health Care Needs - Pediatric HIV and Aids

Pediatric  HIV and AIDS

A true story

    Paige Rawl was born HIV positive. In Grade 6, she   
    disclosed her status to a close friend. This led to
    bullying that eventually caused Paige to quit school.
    After 3 years of homeschooling she returned to
    school, resumed her favorite activities and began

    to speak publicly about being a teen with HIV. She is
    now looking forward to studying molecular science at university, and is a finalist
    in a competition to become the cover girl for an issue of the teen magazine, Seventeen.

    We may never work with a child, like Paige, who has HIV, however we do need

    to  understand the tremendous impact that having the disease can have on children

    and teens with HIV/AIDS, in medical, emotional and educational terms.

Definition

     HIV (Human Immunodeficiency Virus) and AIDS (Acquired Immunodeficiency

    Syndrome) were first recorded in humans in 1981. Since then, millions of people

    across the world have been infected with the virus and, sadly, many have died. The

    virus does not discriminate between people – you can be infected in several ways

    (see below) and once you have the virus, it attacks and depletes the immune system

    to the extent that the body cannot fight off infections and some cancers.

    The virus begins as HIV and progresses to AIDS, a terminal stage of the virus. With an

    early diagnosis of HIV, the development of AIDS can be prevented with the

    right combination of drug therapy.

    With progress in HIV and AIDS research, HIV today is considered a serious 

    but manageable disease. Medication given at critical times to the baby while he or she

    is in the womb of a HIV positive mother means that a HIV diagnosis after birth is no

    longer a certainty. Even so, the existence of HIV and deaths as a result of AIDS

    will continue whilst there is stigma associated with having the disease, disclosing

    HIV status and the continuance of behavior that puts a person at risk of being infected.

Prevalence

    How many people have HIV will never be accurately known. Up to a quarter of people

    who have HIV either have not disclosed it or do not know they have the disease.

    Therefore the following statistics must be considered as estimates.

 

    The prevalence of HIV in Canada in 2012 was 0.2% of the population. How many of

    these are children and youth is unknown. Canada does not collect information on

    certain HIV/AIDS statistics, for example the percentage of infants born to HIV

    positive women receiving a virology test for HIV within 2 months of birth. In Ontario,

    there are approximately 700 new HIV infections every year. Currently, the risk

    of transmission of the virus from a HIV positive mother to her baby, in Canada, is just

    1%.

Etiology

    There are a number of ways that infants are at risk of becoming HIV positive:

    -       when maternal blood enters the circulation of the fetus;

    -       when fetal membranes rupture more than four hours before delivery;

    -       when the mother has advanced HIV;

    -       when babies are breastfed by HIV positive mothers.

    Transmission levels have reduced significantly in Canada after the development

    of AZT (an antiretroviral drug) that is given to pregnant mothers during the second

    and third trimesters, during labor and to the baby for six weeks after birth.

    In older children and youth, becoming infected is largely down to infection from

    intravenous drug use (using shared needles with a HIV positive person) and

    unprotected sex with an infected person. Blood and blood products have been

    screened for HIV presence in Canada since 1985.

 Assessment / Diagnosis

    For infants, there is a wide variation in the rate of progression in the virus and

    therefore in how the symptoms present. For approximately 20% of infants with HIV,

    they will become seriously ill in their first year of life after initially showing no symptoms.

    The virus ultimately causes their immune system to deteriorate and become unable

    to fight off any infections. Of these babies, most will die before they are four years old.

    The remaining 80% may not show symptoms until they have begun elementary or even

    high school. They suffer childhood infections more severely and more frequently,

    with infections causing seizures, fever, colds, diarrhea and dehydration. For both groups,

    blood tests would detect the presence of HIV.

   

    Following infection, initial symptoms for older youth (and adults) are mild fever,

    fatigue, muscle ache, swollen lymph nodes, nausea, etc. These symptoms will look like

    the flu and are referred to within the context of HIV as Acute Retroviral Syndrome.

    If diagnosis (via a blood sample) is not made at this stage, the virus progresses to

    the stage of clinical latency.

   

    AIDS is the final stage where a person is extremely vulnerable to many infections,

    and the immune system is unable to protect the organs from attack

    and permanent damage. Life expectancy at this stage is 1 - 3 years.

Treatment / Medical intervention

   HIV is treated by a combination of antiretroviral drugs to reduce the   

   virus from rapidly reproducing itself and enabling itself to damage the body more
   efficiently. The aim of the treatment is to cause the virus to ‘sleep’, and to reduce the 

   presence of the virus to a level where it is virtually undetectable, and therefore doing 

   less damage to the immune system. 

 Developmental Consequences

Physical

Babies who are HIV positive are slower to reach milestones such as motor skills  

    (walking, crawling) .These babies will be slow to gain weight and may not follow
    growth rates expected for their age. Bone density is below normal. For youth who
    become infected in their adolescence, being prone to infections is the biggest  
    consequence.

 Cognitive

  HIV encephalopathy can cause brain damage and may be one cause of cognitive 
  deficiency seen in some children with HIV, i.e. a lower IQ. Poor short term memory and 
  inconsistent attention span has been observed in children with HIV, as well as
  hyperreflexia which causes over activity and twitching.

 Emotional and social

   Knowing that you have a disease that cannot be cured, and the requirement to take  

   medication forever, is a huge burden for an adult. For a child, understanding the stigma

   that is attached to having HIV may be beyond their ability for a long time. As they begin

   to understand the implications of their illness, and how others may view them negatively, 

   they will begin to experience emotional stress, leading to mental health concerns if they

   do not have the support and the resources available to help them through the difficult 

   times.

   Socially, children with HIV may be isolated from other non-HIV children, whether their  
   illness has been disclosed or not. This isolation may or may not be their choice. Not
   having an adequate amount of social contact may affect their self esteem and their
   mental health for years.

   Some children will also have been orphaned as a result of HIV, and will be living in
   group homes or foster care. Options for care are not always optimal and can lead to  
   certain emotional stress.

    Teens who have become infected may already be emotionally and socially vulnerable -   

   despite all the information and education available at schools and other health centers,

    youth continue to undertake risky activities and behavior. These behaviors may be cries

   for help and the additional burden of HIV may take these children to an even more fragile

   and isolated existence.

Educational implications

   Because the immune system is so compromised, children with HIV can miss a lot of  
   school. Recovery can involve long term stays in hospital, which means missing out on
   the building blocks of learning. Catching up with their peers would require a concerted  
   effort on the behalf of teachers and Educational Assistants, and involve the possibility
   of modifying curriculum expectations, depending on how long their stay in hospital.

   The effects of HIV can be addressed at school as they would if they were presentations 
   of other conditions, illnesses or syndromes. For example, curriculum would be modified
   and require a possible placement in an MID classroom because of a lower IQ. With the
   effects of hyperreflexia, accommodations may be similar to those given to a child with
   ADHD, for example sufficient time to exercise their bodies and allowances for moving
   around during class time.

   Plans should be put in place to create a safe place for the child for when seizures take  
   place, and personnel identified to help the child when seizures occur. Other very   
   important precautions involve classroom hygiene so that the risk of the child
   catching infections can be kept to a minimum. Measures would include specific
   hand washing requirements (like those required in special care baby units) and
   the immediate clean up of blood or other body fluids (e.g. vomit).

Conclusion

   As an Educational Assistant, we are unlikely to work with many, if any, students with
   HIV. However, the emotional and social complexities of life for a child with HIV, and the
   heavy toll on their bodies, mean that a great deal of sensitivity and care is required in
   understanding and supporting a child or youth with HIV. They should be treated like any
   other student with special health care needs. They also deserve even greater effort from
   those who spend time with them to help them through the minefield of the social world
   that would sometimes have it that we treat them as pariahs.

References

www.aids.gov

www.aidsmap.com

www.catie.ca

 www.niaid.nih.gov

www.seventeen.com