For Parents of Children Living with Lupus
Caring for a child with lupus is a great challenge for any family. After the diagnosis of lupus 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 must not only educate themselves, but they also need to educate their child with lupus and their other children plus their child’s teachers, and family friends.
Further Reading . . .
Is lupus the same in children and adults?
Lupus in children is the same disease as lupus in adults; however, children diagnosed with lupus often have been ill for a longer period before the diagnosis is made. Because they often have been ill longer before their lupus was recognized children with lupus are more likely to have significant internal organ involvement when the diagnosis is made. As a result children with lupus often are required to begin aggressive therapy soon after diagnosis.
The first step for every family is to be sure the diagnosis is correct. Lupus is a highly variable disease. Some children have obvious lupus symptoms with fever, rash, and kidney involvement. Others may only complain of not feeling well, or of being tired or achy. Some children look fine, but have blood in their urine or other unseen problems that lead their physicians to make the diagnosis of lupus. Although a positive ANA is generally required to make the diagnosis, there are many children with positive ANAs who do not have lupus. Most physicians rely on the American College of Rheumatology (ACR) criteria for the diagnosis of definite lupus. It is important to be aware of these. However, some physicians assume anyone who does not fulfill four of the criteria could not have lupus. Especially in children, it is important to remember that more problems may develop over time. If you have questions about your child’s diagnosis you can contact your local chapter of the Lupus Foundation of America (LFA) for a list of experienced doctors in your area.
Once the diagnosis is established parents are immediately concerned about what will happen to their child. While lupus can be a severe and life-threatening disease, many children with lupus will do very well. The prognosis of lupus in childhood depends on the severity of the internal organ involvement. Children with significant kidney or other internal organ disease require aggressive treatment. Children with mild rash and arthritis may be easily controlled. However, lupus is unpredictable and no one will be able to predict with certainty the long-term outcome for a specific child.
When your child has been diagnosed with lupus, you will want to learn about the disease, its treatments, and what to expect in the future, as well as coping strategies that will help your child and your family. Lupus is a chronic disease, meaning life-long. You can help your child most by understanding lupus and how it affects children both physically and emotionally.
Improvements in diagnosis, a greater understanding of how medications can work together to control symptoms, and increased knowledge of the effects of the disease have allowed better management of lupus over time. Today, teenagers with lupus are leading healthier lives and living longer than at any time in history.