Lupus is a systemic auto-immune disease which typically develops in females in the reproductive age group. However, males, children and the elderly may also be affected.

Clinically, there is considerable similarity between adult and childhood forms of the disease, with few  subtle differences. For instance, discoid lupus affects approximately 15% of all lupus patients, but is rare in children. Some children with kidney disease may require more aggressive treatment with immunosuppressive drugs, which lower the body's immune system responses.

Caring for a child with lupus is one of the greatest challenges a family can face. After the diagnosis is made, the first step for every parent is to learn as much as possible about the disease and the special needs of a child with lupus. Parents need to educate the child with lupus and their other children plus their child's teachers, and family friends. Due to fear and frustration, parents may turn to non-conventional treatments, such as herbal “remedies” or “miracle cures.” However, these alternative methods of treatment have not been properly studied for their effects on the human body. They must be subjected to rigorous research studies before they are used, so children are not put in jeopardy. Everyone caring for lupus is committed to finding better alternatives to current therapies.

Treatment for childhood lupus is dependent on the severity of the disease in each case and the tolerance of the child in a particular medication. The most important subject for parents of children with lupus is dealing with the side effects of the drugs. Corticosteroids (e.g. prednisone) and cytotoxic immunosuppressants can have unwanted side effects especially to child’s growth. Children with lupus should not receive immunizations with live viruses, including chickenpox, MMR (measles, mumps, rubella), and oral polio vaccines. Consult your child's physician regarding all vaccines. 

It is important to remember that most children hate being sick. Often this hatred will be expressed as hatred of the pills, hatred of the blood tests, hatred of the doctor's visits, and hatred of advice from parents. Frequently this can be dealt with by reasoned discussion and making sure the child knows why they have to do unpleasant things. At some point in this age group they need to understand that doing the wrong thing could make them very sick. Few children in the pre-teen and early teenage group realize their actions may have permanent consequences—that if they do the wrong thing they can't simply “be forgiven and start over.” If you can't work it out with your child, discuss the situation with the child's doctor. Some children may require psychological intervention. Improperly dealt with, a child or young adult's resentment about having lupus may result in risky behavior that can be disastrous.

One of the most difficult problems for every parent is how to let their children “grow up” without letting them take unnecessary risks. This is even harder for parents of children with lupus. The key concept must be, “as normal as possible.” For every decision you face with your child (school trip permissions, friends, a sleepover, etc.), ask yourself, would you let them go if they didn't have lupus? The only big exception is exposure to excessive sunlight, which may make lupus worse. A child with lupus may not be able to go to the beach for the day, or sit out in the sun by the pool. If you are unsure, ask your physician.

Lupus support groups are a good way to help both the parents and the child meet others who have lupus, as well as their families, learn more about the disease, and explore ways to cope.

REFERENCES:

·          Lehman TJ: “Childhood Lupus”. Lupus Foundation of America. 4-1-2005
<http://www.lupus.org/education/brochures/child06.html>

·          Dowshen S: “Life with Lupus”. KidsHealth for kids. 07/2004
<http://kidshealth.org/kid/health_problems/bone/life_with_lupus.html>

·          Brescia AC, Dowshen S, Athreya BH: “Living with Lupus”. KidsHealth for parents. 07/2004
<http://www.kidshealth.org/parent/medical/arthritis/lupus.html>