Lupus in Childhood
Kids and Teens Quick Links
Lupus in children generally begins around puberty. The most common first symptoms in children include prolonged fevers, rash, hair loss (alopecia), sudden weight loss, mouth sores (mucositis), arthritis (swollen joints), arthralgias (painful joints) and sudden drop in grades or interest in activities. Aside from monitoring symptoms of the disease tailoring medications for children must be done carefully. Physicians caring for children with lupus must always consider the normal growth and development of children. Both the disease and the medications may affect each. Some medications have different side effects in children than in adults and therefore it is important that your child be treated by a pediatric specialist whenever possible who will be most familiar with these considerations. After the age of 10 years, lupus affects 10 females for every male with lupus. At younger ages girls and boys are affected equally.
Working With Your Healthcare Team
SLE is a very difficult disease given the unpredictability of flares, the potential for involving any organ system in the body, the side effects of some of the medications used to treat the disease, and the stress of living with a potentially life-threatening disease. Given these difficulties, it is essential to communicate with your child’s healthcare team. A patient with SLE should have a healthcare team that works together with both the parent and the child to optimize treatment. The team may consist of your pediatric rheumatologist, his/her nurse, your pediatrician, a physical/occupational therapist, a social worker and a psychologist, as well as other specialty doctors such as a nephrologists, neurologist and cardiologist.
New symptoms, concerns regarding medications and difficulty in coping with any aspect of the disease or its treatment must be discussed with your child’s rheumatologist. Call your doctor with concerns – don’t wait until your next appointment with something that may be urgent.
It is important for both you and your child to learn to recognize symptoms of lupus flares including, fevers, rash, severe headaches, shortness of breath, chest pain, joint pain or swelling and swelling of the feet and ankles.
Emotions, Behavior and Responsibility
Understand that although your teenager is becoming independent in many ways, taking care of their health requires your supervision. Taking all doses of medication is very important in preventing flares and potentially active disease that may lead to irreversible damage. Allow your teen some independence but be involved enough to ensure that she/he is taking medication and is not ignoring symptoms of the disease. You and the rheumatologist should include your teen in discussions and decisions regarding symptoms, tests and medications. Be sure that you and your teen ask questions and understand as much as possible. There may be times that your child should speak to the doctor privately with her/his concerns. It is often helpful to keep a notebook with information and a list of non-urgent questions to ask at your next appointment. Both you and your child are an integral part of the healthcare team – be honest and be involved.
Compliance with physician instructions has been shown to be one of the most important factors in determining the outcome for children with SLE. Taking medications as directed, having blood and urine tests when requested, keeping doctors appointments, avoiding the sun, wearing sun block and learning the warning signs of a flare can help your child live better with the disease. Stressing these important facts to your child can help them avoid hospital visits and flares associated with not taking care of the disease properly.
It is important to remember that most children hate being sick. Sometimes this hatred can into hatred of the pills, tests, doctors, and advice from parents. Teens may skip their medications and feel fine for a time, but in most cases sooner or later they will end up in a severe flare and may end up sicker than when they were first diagnosed. Behavior such as this should be brought up to your child’s doctor immediately and possibly a social worker, or psychologist may need to get involved. Allowing your child to talk with others who have lupus, especially those who were also diagnosed as a child and are now adults, can help your child deal with the emotional aspects of this disease. Meeting and talking with other children their age who have lupus may also help them understand that they are not alone, and give them an outlet to vent that as a parent, and someone who does not have the disease, cannot provide.
Living With Lupus
Your child is not her/his disease, it is only a diagnosis that she/he has. Understanding as much as possible about the disease and its treatment will help to enable your child to live well with her/his disease. Allow and encourage your child to participate in usual activities. Reassure your child that you and her/his doctor will try to ensure a normal childhood.
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 ever harder for parents of a child with lupus. The key concept must be, “to keep everything as normal as possible.” Every decision you face with your child (school trips, parties with friends, dates, etc) ask yourself, would you let them go if they didn’t have lupus? This is a good way to remind yourself that although your child has this disease they still need to be a child. The only big exception is excessive sunlight, which is known in some instances to cause a lupus flare.
A child with lupus must always wear sunscreen and may have to wait until later on in the day to go swimming in the pool or hang out at that beach, in order to avoid this possible complication. Allow your child to continue in the activities that he/she enjoys if they feel they can. Learning on their own what their bodies’ limitations may be is more helpful in the long run than a parent deciding for them what they can and cannot do, due to their lupus. Sooner or later your child will be out on their own, and they will need to know about their medications, their disease and how it personally affects them.
Talking about this with them, allowing them to make decisions and to be in on the conversations with their doctors will help them get ready to handle this disease as an adult.
Everyone with lupus is different. However, much of the information for children is the same for adults. You are encouraged to read the many other brochures the Lupus Alliance offers to learn more specific disease related information such as lab tests, medications, coping and more. Caring for a child with lupus is one of the greatest challenges a family can face. After diagnosis, the first step for every family should be to learn as much as possible about the disease and the special needs of a child with lupus. Parents need to educate themselves, then their child with lupus, their other children, family, friends and teachers.
Beth Gotlieb, M.D., Division Chief, Steven and Alexandra Cohen Children's Medical Center of New York