Lupus and Children
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, children with lupus are leading healthier lives and living longer than at any time in history.
What is Lupus?
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body such as the kidneys, lungs, or heart). Although many different parts of the body can be affected, sometimes only one or two organs or organ systems will be involved. Lupus is the same disease in children as it is in adults.
Health Care Providers
Children with lupus are usually treated by a pediatric rheumatologist (a specialist in diseases of the musculoskeletal system in children and adolescents), or an immunologist (a specialist in diseases of the immune system) who is familiar and comfortable with the special needs of children. If you need help finding a doctor in your area, call the LFA toll-free at (800) 558-0121.
Lupus is a systemic disease, which means it can cause complications in many parts of the body. There may be times that your child needs to see a kidney specialist, a heart specialist, or other health care professionals. The team approach is the most successful way to manage lupus. In order to keep all of the care coordinated, it is advisable that one of these doctors—usually the rheumatologist—takes the “lead” for your child’s care.
There are many symptoms of lupus, some invisible and some very visible. These symptoms can be of great concern to your child, especially those that cause a change in appearance, such as hair loss, a bloated look in the face and neck, skin rashes or lesions (sores), weight gain, and easy bruising. These effects may be caused by lupus or by the medications used to treat the disease. Some of these will diminish or go away entirely when lupus symptoms are controlled by the medication, and also as the dosages of medications are lowered and discontinued. When present, though, these visible symptoms of lupus can be very upsetting to your child.
Symptoms that are invisible—muscle aches, joint pain, severe fatigue, chest pain, memory loss, and difficulty processing information—can also be difficult to deal with. There may be times when people ask you or your child questions about why such a healthy-looking young person walks with a cane or does not participate in a school activity or needs a home tutor. Be patient as you help your child learn to cope both with these effects of the disease, and other people’s reactions and attitudes.
Flares and Triggers
Lupus is also a disease of flares, when the symptoms worsen and the child feels sick, and remission or “quiescence” (kwy-es-ents), when the symptoms improve and the child feels better. Knowing which factors lead to disease flares is an important part of managing lupus. Some common triggers are:
- excessive exposure to ultraviolet rays—from the sun or from artificial light
- a viral or bacterial infection
It is important that all members of the child’s health care team know about new symptoms. These may indicate a worsening of disease, or a new complication.
As much as possible, encourage your child to let you know about any changes in how she or he feels, physically and mentally. If your child does not feel comfortable communicating to you in person about these symptoms, encourage the keeping of a handwritten or computer diary of symptoms and feelings. Or, ask your child’s favorite nurse or physician’s assistant to make the request.
In addition, keeping your own journal can help you remember questions you want to ask the doctor, instructions or information you are given, medication side effects you observe, or anything else concerning your child’s health and care. These notes can be very helpful as you and your family learn about lupus and how to adjust and adapt, both now and in the future.
Many medications are used to treat the symptoms of lupus; however, most are used off-label, meaning that doctors have found the medication helpful for people with an illness or condition other than the one for which is was approved by the Food and Drug Administration (FDA). For more information on treatments for lupus, please refer to the LFA Patient Education Series booklet, Treating Lupus.
The medications currently approved for treating adults with lupus are: aspirin; antimalarials, such as Plaquenil®; corticosteroids, such as prednisone; and Benlysta® (belimumab), approved in 2011.
Because lupus is different for each person, it can take some time before your child’s doctors find the right combination of medicines to keep lupus under control.
As children with lupus grow older, it is useful for them to be aware of medication side effects. Some of these may cause changes in the outward appearance, and sometimes there can be health complications. Some children may find it difficult to discuss side effects with parents. Other children may feel embarrassed by all of the attention they are receiving. You can suggest that your child talk to the nurse at the doctor’s office, or another member of health care team.
It is very important for people with lupus to avoid infections and illnesses. This is because the medications that treat lupus reduce the normal activity of the immune system. Also, lupus itself increases the risk for infections to occur. Remind your child to wash his or her hands frequently, and to try to avoid classmates and friends who are sick.
Children with lupus should not receive any vaccine that contains “live” virus. This is because even a small amount of a virus can cause lupus to become active.
For the most current vaccination recommendations for children with immune system complications such as lupus, go to the Vaccines section of the Centers for Disease Control and Prevention Web site at www.cdc.gov/vaccines, or call toll-free 800-CDC-INFO (800-232-4636).
Diet and Nutritional Health
There is no specific diet for a person with lupus. To improve heart disease risk, reduce inflammation, and lower blood pressure—all of which are very important for people with lupus, including children—try to make sure your child follows the recommended guidelines for healthy eating.
- Eat plenty of fresh fruits and vegetables, whole grains, and moderate amounts of freshly cooked meats and poultry.
- Eat baked or broiled fatty fish once or twice a week.
- Avoid or limit foods containing saturated fat, hydrogenated or partially hydrogenated fats, or trans fats.
- Limit daily sodium intake, especially from processed and “fast” foods. (When eating out request low-sodium preparations.)
- Drink plenty of water (if there is no fluid restriction).
- Avoid or limit sugary foods and drinks.
Lupus, as well as many of the medications used to treat lupus, can cause loss of bone minerals, such as calcium. When these minerals are not at correct levels, bones may not be able to grow normally, and may not have normal bone strength. This means that children with lupus are at increased risk for delayed skeletal growth, short stature, and fractures later in life. Talk to your child’s doctors about these treatment strategies:
- regular bone density screenings using the DXA (known as DEXA)
- a calcium and vitamin D supplement
- daily weight-bearing and aerobic exercise
One of the most commonly prescribed medications for lupus is the antimalarial drug, hydroxychloroquine (Plaquenil®). Antimalarials can affect the retina, so a complete eye examination by an ophthalmologist should be done prior to the child starting this type of medication, and once or twice a year thereafter. Any problems with vision should be immediately brought to the ophthalmologist’s attention. Also, the dosage should be based upon the child’s ideal body weight for his or her height.
A child's emotional development, like physical growth, progresses in predictable ways. Understanding the needs of your child at each stage will help you keep the lines of communication open while your family deals with the diagnosis of lupus.
Preschool. Preschool children are very literal—events are directly related to their behavior. If they become ill, they may think: “I’m sick because I was being bad” or “I’ll be really good and I’ll get better.” Children in this age group don’t need a lot of information about their disease. However, you do not need to hide facts from them. Their questions are simple, so respond with simple answers. For example, when your child asks, “Why do we go to the doctor so much?” you could say, “Because the doctor wants to try to make you feel better.”
Some important points to make are:
- No one knows what causes lupus, and having lupus is not your fault.
- Lupus doesn’t happen because you did something wrong, or misbehaved.
Elementary School. Children in this age group think both concretely and abstractly. Although they are beginning to realize that having lupus is not their fault, it doesn’t relieve their stress. They may show strong emotions in reaction to change, such as anger and/or a preoccupation with and fear of death. They also still expect their parents to “fix everything.” It is helpful to ask about their concerns, allow them to ask questions, and make sure they understand what you have told them.
Some important points to make when talking to your child about lupus are:
- Lupus is not contagious: you can’t “catch” lupus from someone or “give” lupus to anyone.
- Lupus might make you feel very tired, sore, and/or achy. The doctor will give you medicines, and it’s important to follow the instructions about how and when to take the medicines so you can feel better as soon as possible.
- Some things will change, like being able to spend a lot of time in the sun, or participating in some activities.
- Be extra careful to wash your hands and stay away from anyone who is sick, so your body doesn’t have to fight off extra germs.
Middle School. At this age children are capable of making rational decisions and judgments. You can begin to explain the more complicated physical effects of lupus. You can include your child in the process of scheduling upcoming doctors’ appointments and in decisions about treatment. When you think your child is ready, you can ask the doctors to begin to speak to your child directly, rather than channeling information through you. These strategies will help your child so he or she does not feel powerless against lupus.
Some important points to make to your child are:
- It’s okay to ask questions about lupus or the medications, or even about personal issues.
- Focus on all of the things you are good at that your disease does not affect.
- Don’t give up on your goals and dreams!
Family and Friends
Lupus affects the entire family. Educating the whole family about lupus and the particular needs of your child can help make everyone feel more at ease. You may also find it useful to educate your neighbors and friends. Lupus support groups can be a good way for your family to meet other families living with lupus, learn more about the disease, and explore coping strategies. Getting the whole family involved in local LFA chapter activities can help your child feel like they are doing something constructive about their disease.
You may spend a lot of time with your child with lupus, due to doctor appointments, treatment needs, sick days, etc., but be sure that your other children, your spouse, and all caregivers—including yourself!—are not neglected. Remember that each family member needs their own space, their own activities, and the opportunity to express their feelings. Regular family meetings are an ideal way to bring problems out into the open and to come up with solutions that work for all of you.
Children, like mirrors, reflect adult stress and behavior. Although you will be understandably anxious about the lupus diagnosis, try to maintain good spirits and a healthy attitude. Your child will be depending upon you for this as much as for all the other supports you provide. The very best thing you can do, whenever possible, is to create a normal life for your child with lupus.
School and Extracurricular Activities
Your child’s teachers and leaders of organized activities should be made aware of the effects of lupus. The most common issues that may need to be addressed include:
- changes in concentration or memory
- missed assignments due to absences for care or illness
- reduced ability to take part in physical education classes
- the need to limit sun exposure
- extreme fatigue
- altered appearance from medication side effects and/or disease symptoms
- infections, particularly if the child does not respond well to vaccinations
Be your child’s advocate at school by helping teachers and staff understand the complications of lupus, and what is needed for your child to keep up with school assignments. An excellent resource to share with your child’s teachers and classmates is Loopy Lupus Helps Tell Scott’s Story About a Disease Called Lupus. This children’s picture book was written by a third-grade class and their teacher, and is available through the LFA’s online lupus shop at shoplupus.org.
- Taking medication as prescribed is an important factor for children with lupus. Be vigilant about when and how your child is taking medications.
- Keep doctor appointments and complete requested laboratory tests in a timely manner.
- Children with lupus should carry a card with their lupus diagnosis, list of current medications, and emergency contact information for their primary doctor and both parents.
- Especially when taking corticosteroids, a child with lupus should wear some sort of medical ID. These are available in a variety of styles, and some insurance companies offer discounts on purchases.
- Encourage the use of sun-protective clothing and hats and correct use of effective sunscreens.
- Help your child learn to balance activities with rest, keep up with schoolwork, and cope with stress.
The LFA Patient Education Series which can be found in the “Learn about Lupus” section of the LFA website has information has on a variety of topics that can explain lupus. More information and resources on every aspect of lupus can be found at lupus.org. Also, the archive section of the Lupus Now® magazine Web site, at lupusnow.org, has articles about lupus in children.
The long-term outcome of your child with lupus depends a great deal on which internal organs are affected and the success of treatment in preventing tissue damage. But equally important are a positive attitude and good coping skills. The more children can be helped to develop these skills, the more successful they will be at living well with lupus.
October 2011 - 15 Questions with Dr. Norman Ilowite
Back to School with Lupus
September 2010 - 15 Questions with Dr. Peter Chira
Child’s Play: Active attitudes for young people with lupus
Spring 2008 issue of Lupus Now
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