Treatment & Care
While there’s no cure for the vast majority of autoimmune diseases, doctors aim to do far better than just manage your child’s symptoms. Yes, they will work to immediately relieve things like soreness and stiffness, and restore important substances to your child’s body that the disease may be taking away (like insulin, in type 1 diabetes). But the big goals are to quench the inflammation of the autoimmune reaction—to keep it from doing further damage—and to “reset” the immune system so that it will work normally on its own.
Autoimmune illnesses don’t tend to be “wait and see” conditions, where doctors might start with a mild medication and ramp up to stronger therapies only if that doesn’t work. Instead, doctors often favor aggressive upfront treatment with an array of drugs (some of which have significant side effects, which your doctor will discuss with you in detail). Therapies commonly prescribed for autoimmune disease include:
nonsteroidal anti-inflammatory drugs (NSAIDs), which help ease symptoms like pain, swelling and stiffness. Among the most common NSAIDs are ibuprofen and naproxen, given in therapeutic doses (that is, higher than the over-the-counter versions).
disease-modifying anti-rheumatic drugs (DMARDs),which slow down—or even halt—the progress of a disease (that’s why they’re called “disease-modifying”). The workhorse of this group ismethotrexate; other DMARDs include sulfasalazine (brand name Azulfidine) and leflunomide (Arava).
biologics, which are a relatively new class of DMARDs made of synthetic proteins. The major category within biologics is tumor necrosis factor (TNF) blockers, which counteract high levels of inflammatory proteins. Etanercept (Enbrel), infliximab (Remicade) and adalimumab (Humira) are the most widely used. Another promising group is interleukin-1 (IL-1) blockers like anakinra (Kineret).
corticosteroids, which are extremely powerful drugs that suppress the immune system and fight inflammation. Doctors sometimes prescribe corticosteroids in tablet form or by IV for short-term use, but tend to avoid high doses over the long term because of serious side effects. Prednisone—which has a number of brand names—is the most common of the corticosteroids.
- IVIg (intravenous immunoglobulin), which is a blood product made up of antibodies that is delivered by IV, and can help get the immune system back on track without suppressing its normal function.
Depending on your child’s autoimmune disease, she may need other kinds of medical treatment, such as:
- plasmapheresis, a process that removes plasma—the part of the blood that carries antibodies—from a patient’s blood. Because it removes good antibodies along with the bad, however, it leaves the immune system less able to fight off sickness and infection. That’s why doctors typically recommend plasmapheresis only for the most serious autoimmune diseases.
- surgery, to deal with certain complications of autoimmune disease: joint damage in juvenile idiopathic arthritis, for example, or bowel obstruction in Crohn’s disease
Though essential, medication is just one part of your child’s treatment program. Most kids with autoimmune diseases 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 these 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.
Coping and support
We understand that you may have a lot of questions when your child is diagnosed with an autoimmune disease. 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:
Parent-to-parent connections: Want to talk with someone whose child has faced the same disease? A number of Children’s parents volunteer for special training to help the families of newly diagnosed kids. Alternatively, your child’s doctor may be able to put you in touch with a mom or dad of another patient who can share their experiences with you.
Social work: Our Rheumatology Department includes social workers—in both inpatient and outpatient settings—who have assisted many other families whose children have an autoimmune disease. Your social worker can offer counseling and problem-solving advice on issues such as coping with your child’s diagnosis; dealing with financial difficulties; and finding temporary housing near the hospital if your family is traveling to Boston from another area.
- Behavioral Medicine Clinic: This program has an experienced team of pediatric psychologists, psychiatrists and other mental health professionals to help children and families deal with the extra stress that autoimmune disease can bring. Offering evaluations, short-term therapy and family counseling, the clinic staff can teach you ways to prevent or better deal with the emotional and behavioral problems associated with chronic illness.
In addition, there are many groups that help connect and educate people across the country who are coping with autoimmune diseases. Your doctor may be able to recommend which ones are best for your child’s specific illness, but in general, three of the most high-profile groups are:
- The American Autoimmune Related Diseases Association, which is a leading advocate for autoimmune research and awareness. Among other things, it spotlights research news on its website as well as in its quarterly newsletter, InFocus.
- The Arthritis Foundation, which offers resources for all kinds of childhood arthritis, as well as for a number of closely related autoimmune diseases, like lupus, scleroderma and fibromyalgia.
- The Lupus Foundation of America, which is dedicated to improving the health and well-being of anyone affected by this major autoimmune disease. Among the highlights of its website are links to programs that help pay for medications, message boards for patients and families and a list of local support groups.