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There are many ways you can help children and their families get the care they need.
A diagnosis of lupus can be very difficult for a parent to hear. But at Boston Children's Hospital, we view the diagnosis as a starting point: Having identified your child's condition, we're able to begin the process of treating your child. We will work with you and your child to bring the symptoms of lupus under control, head off complications and, ultimately, send your child into adulthood as healthy as possible.
Treating an unpredictable disease like lupus is like fighting a fire: Doctors can't know where it might spread, so they focus on what's actually “on fire”—the places in your child's body where lupus is active right now. If lupus is affecting your child's kidneys and central nervous system, for example, the treatment will be very different from what it might be if the disease is affecting your child's skin. This is why it's essential to let your child's doctor know when new symptoms appear, since they could mean another part of the body is under attack.
The medications used to treat lupus fall into two main categories. Nonimmunosuppressants tend to be milder drugs that fight inflammation or help ease discomfort, and have few side effects. Immunosuppressants are much more powerful drugs aimed at bringing the malfunctioning immune system under control. Some have significant side effects and—because they suppress the immune system—all increase the risk of infection.
Aside from medications, your child's doctor may also prescribe IVIg (intravenous immunoglobulin), which is a blood product made up of healthy antibodies that is delivered by IV, and can help get the immune system back on track. Much more rarely, your child may need to undergo plasmapheresis, a process that removes autoantibodies from the blood. But because it also takes away normal antibodies, it significantly weakens the immune system. That's why doctors treat only very severe lupus with plasmapheresis.
Complications of lupus require their own medications and treatment procedures, too—dialysis for serious kidney disease, for instance. Your child's doctor will discuss these with you in detail if and when any complications arise.
A final note: Medicine is essential, but it's not the sum total of your child's treatment for lupus. Many kids with lupus also require physical and occupational therapy, to increase their mobility and muscle strength and to learn ways to make day-to-day activities easier on their bodies. And because chronic illnesses like lupus can be mentally and emotionally tough to deal with, psychotherapy or counseling can be valuable in helping kids keep the positive outlook they need to beat their disease.
When your child is facing a chronic illness like lupus, it's understandable that you would want to explore all the treatment options. But despite what you may read on the Internet, or hear from friends of friends, there is no “hidden” cure for lupus. No magic herb or special diet will restore your child to perfect health.
That said, there are some things outside conventional medicine—like acupuncture or meditation—that are fairly well studied and do seem to help some people with lupus.
A few words of caution before embarking on any alternative therapies, however:
Lupus is chronic, incurable and unpredictable. But it's not unbeatable. And you can fight it by helping your child make some simple lifestyle changes at home.
By doing these things and becoming a full partner in your child's health care—keeping clinic appointments, alerting doctors to any new symptoms—you may end up feeling more in control of what can be a very daunting illness.
Coping and support
We understand that you may have a lot of questions when your child is diagnosed with lupus. How will it affect my child's life? What do we do next? We've tried to provide some answers to those questions here, but there are also a number of other resources to help you and your family in dealing with your child's unique illness, such as:
In addition, there are many groups that help connect and educate people across the country who are coping with lupus. A great one to start with is the Lupus Foundation of America, a major nonprofit devoted to supporting lupus patients and finding a cure. It has 300 chapters in 32 states, as well as an information-packed website that includes links to programs that help pay for medications, message boards for patients and families and a list of local support groups.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”