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. Thomas J.A. Lehman M.D., F.A.A.P., F.A.C.R., a member of the Lupus Foundation of America Medical-Scientific Advisory Council, has provided information on diagnosis, treatments and social and emotional issues that may be faced by a family with a child, teen or young adult diagnosed or living with lupus.
Further Reading . . . |
Is lupus the same in children and adults?
At one time lupus was thought to be more severe in children than in adults, but most physicians no longer believe this. 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.
Diagnosing lupus
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.
Following doctor’s orders
Compliance with the physician’s instructions is one of the most important factors in determining the outcome for children with lupus. Paying attention to the doctors’ instructions can make a major difference -- for example, taking medications as directed, having blood or urine tests when requested, keeping scheduled doctor appointments, and following instructions about avoiding too much sun. These are aspects of your child’s care that you can control.
Children have special needs and it is important that those caring for the child, i.e., parents and medical professionals, understand these needs. It is very important that parents know the reasons for the prescribed medications, and know what problems to promptly report to the child's physicians. If you have questions, be sure you get answers. A good working relationship with the child's doctor is one of the most important factors in the successful treatment of children with lupus.
Lupus medications
Treatment for childhood lupus is dependent on the severity of the disease. The most important subject for parents of children with lupus is dealing with the side effects of these drugs. Corticosteroids (e.g. prednisone) and cytotoxic immunosuppressants can have unwanted side effects, but are important drugs for controlling the damage that lupus often causes.
Many children with lupus require dosages of corticosteroids (prednisone) that produce obvious side effects. Weight gain and a "Cushingoid" (rounded face) appearance, acne, unwanted hair growth, and stretch marks are the most obvious. These changes are easily visible and may upset you and your child. Over time corticosteroids contribute to weak bones, poor growth in height, and atherosclerosis (fatty deposits in blood vessels that can affect blood flow), among many other problems.
Physicians have come to realize that corticosteroids play an essential role in controlling lupus, but too much corticosteroid for too long is also very harmful. In every case the physician must balance the risk of side effects due to immunosuppressive medications against the side effects that are likely to occur from continued use of high dose corticosteroids. Most physicians choose to keep the dose of corticosteroids down in order to minimize their side effects. But, if the lupus is active and the dose of corticosteroids is kept low, other drugs must be used to control the disease.
Cytotoxic immunosuppressive drugs are one alternative to high doses of corticosteroids. These drugs are important to the parents of children with lupus because, when used properly, these drugs allow a dramatic reduction in the corticosteroid dosage, often to a level without obvious or severe side effects. This is a major benefit to children. However, cytotoxic drugs are not free of risks. Short-term, they carry the risk of damage to the bone marrow that can cause bleeding or make the child unable to fight off an infection. Careful monitoring is necessary to minimize these risks.
Cytotoxic drugs also may increase a child’s risk of developing certain forms of cancer at some time in the future. In addition, there is evidence that immunosuppressive drugs may interfere with a child's ability to have children in the future. These are scary problems, but fortunately they occur very rarely. Doctors must balance the risk of these future problems against the benefits of better control of the lupus and lessening the damage from corticosteroid use. Although the risks of cytotoxic drugs scare every parent, many children do extremely well with their lupus, and serious problems from these medications are very rare.
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. If there was any proof that alternative medications were really helpful for lupus, the Lupus Foundation of America would know and doctors would be quick to use them.
Behavior and responsibility
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 if you would 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.
Special steps parents should take
If your child is participating in short activities, e.g. visiting friends or going to a movie, usually no special arrangements are necessary. For longer activities where a child may be away overnight the situation can be more complicated. If they are old enough you can simply send them with their medications. In general, children over the age of 10 should know their medications and when to take them. However, you need to stress the importance of doing so and check to make sure the pills have been taken when the child comes home. If the child is under age 10, be sure there is a reliable chaperone who can take responsibility for the medication and its administration.
No matter where your child goes, it is important that they carry their doctor’s emergency phone number where someone will find it easily if the child is injured or becomes ill. Keeping a copy of their doctor’s business card in the child’s purse or wallet is an easy way to do this.. For longer trips you should also make sure the chaperone has the information. A "medic alert" bracelet should be considered for any child or teenager who is on chronic corticosteroid therapy. Some children resent wearing a bracelet, but it can be worn around the neck or even on an ankle, where it is less obvious. Unpredictable events do occur, and these "alert tags" provide crucial information that can speed appropriate treatment when a child doesn’t know or can’t give the necessary information. If your teenager resents these as an "emblem" of the disease, let them pick the style and color. Remind them that lots of adults wear such bracelets or necklaces. If necessary you may choose to compromise on a wallet card that includes their lupus diagnosis and emergency contact information.
Educating your child
The feeling of being overwhelmed can be very real for both parents and children. However, educating yourself and your child can help to alleviate many of the worries and concerns. How to approach your child depends on your child’s age. Of course no two children are the same, but these general guidelines can help.
For children younger than age 10, excessive explanations aren’t very helpful. During this period children rely on their parents to "fix everything" and have little sense of responsibility. While your child should know that they have lupus, you don’t need to spend a lot of time trying to explain it. They will need to understand that lupus is a disease, and that it’s not their fault. They need to know they didn’t get lupus from doing something wrong, that it is not something they caught from someone and that they cannot "give" lupus to anyone else.
It is important that your child understands the need to take the prescribed medicine. For older children you can begin to explain the names of the medicines and the doses. For smaller children this isn’t helpful. Sometimes well-intentioned parents go to great lengths to explain every detail to their children as if they were small adults. Under the age of 10 this information is often misunderstood and despite the best intentions it may do more harm than good.
For children 10 and older it is important to begin explaining the nature of lupus. The transition from a small child who must simply do what he or she is told, to a mature self-reliant adult, may be a difficult one under the best circumstances. Thus it is important that children with lupus be allowed to assume a progressively greater role in taking their medications and making choices about their care.
Educating others
In addition to educating yourself, your spouse, and your child, you will rapidly become aware that you have to educate the school teachers and leaders of organized activities in which your child participates. You will have to explain absences for doctor’s visits, fatigue, changed appearance, and restrictions in activities. Your doctor and the local Lupus Foundation of America office can be very helpful sources for information in this regard.
You may also wish to educate your neighbors and friends. Not everyone will be aware of what lupus is or how a person gets lupus. You can help them understand that lupus is not contagious, and that a person who has lupus is genetically predisposed to having the disease. This can be done by sharing information available through the Lupus Foundation of America, online or by writing or calling and requesting information about the disease.
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.
Is your child angry or depressed?
You must understand that your child will have days when they are upset about having lupus -- just as you are upset that they have it! They will be upset about the side effects of their medications and upset about the limitations placed on them because they have lupus. The fact that it’s no one’s fault doesn’t make it better. You must treat your child just as you would if they were angry about anything else. Occasional problems are normal. If these feelings become prolonged you may need to seek professional help. Remember: there is no single solution that will work for everyone.
It is very important that parents recognize if their child is becoming depressed. Children who become depressed about having lupus may stop taking their medication without telling their parents. This can be disastrous. Watch the medicine bottles. Are they getting empty? Are refills needed as often as expected? Even if you are the one administering the medication everyday, stop sometimes to watch and make sure the pills are being swallowed, not spit out when you turn around. You might be complying with all of the doctor’s advice while your child is not. If you discover that your child hasn’t been taking the medication, talk about it with them, and be sure to let your doctor know.
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.
Don’t be afraid to ask the doctor for help if you are having trouble getting through to your child. Not only does having lupus cause psychological problems, but lupus itself may cause problems with thinking. Sometimes a child who is refusing their medicine may need more medicine. It is important to understand the psychological problems, as well as the effects that lupus can have on cognitive (thinking) impairment. If you believe your child needs help, the child's doctor can help you find an experienced psychologist in your community.
Even children who appear to be doing well may have questions they are afraid to ask. Young people in their middle and late teenage years are beginning to think about their life as adults. Children with lupus will wonder if they are going to be able to get married, have kids, and make a living. The answer should always be that you expect them to lead productive lives. Since most children with lupus will live well into adulthood, it is important to make sure they understand the importance of doing all the things necessary to achieve their goals.
Could anyone else in my family develop lupus?
Studies have shown that close relatives of adults and children with lupus are more likely to develop lupus than are individuals randomly selected in the general population. However, the risk is still very small (about 1/50).
As many as one-third of the sisters of a child with lupus may be ANA-positive. Physicians have now had the opportunity to follow groups of sisters for many years. Roughly one in 10 have gone on to develop lupus over a 10-year period; however, this also means nine out of 10 did not. If one of your other children has symptoms which make you think they might have lupus, have them evaluated by your physician.
Remember, a positive ANA does not make the diagnosis of lupus. In the absence of symptoms sufficient to warrant treatment with prednisone, it is appropriate to just carefully follow the ANA-positive sibling and/or mother of a child with lupus. One special situation is when a relative of a child with lupus is placed on one of the drugs associated with drug-induced lupus. Often this can be done safely, but these individuals may develop lupus-like symptoms when placed on certain anti-seizure drugs and anti-tubercular drugs. They should be monitored carefully.
Family studies of children with lupus have also demonstrated an increased frequency of serologic abnormalities in the mothers of children with lupus. Because usually these are healthy mothers without evidence of disease, this was surprising. This finding strongly supports the hypothesis that lupus results from the combination of a genetic predisposition and an environmental exposure. Interestingly, serologic abnormalities in fathers were much less common, but that doesn’t mean they don’t contribute to the genetics of lupus. It only suggests that expression of those genetics as a serologic abnormality may be influenced by sex hormones.
Related Information
For Children, Teens and Young Adults
Child’s Play: Active attitudes for young people with lupus
LUPUS AT A YOUNG AGE: A child’s needs and concerns are different and the same
Teens and Lupus
December 2008 webchat transcript with Dr. Peter Chira
Pediatric Lupus
February 2007 webchat transcript with Dr. Laura Schanberg
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