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There are many ways you can help children and their families get the care they need.
You may have read that lupus is extremely difficult to diagnose, and that some patients go a long time, even years, before they know what’s wrong with them. And it’s true the symptoms of lupus can mimic many other illnesses, such as infection and cancer. But if you bring your child to a pediatric rheumatologist — the kind of doctor who knows best what this disease looks like in children — odds are that he or she can determine whether it’s lupus relatively quickly, and if treatment is needed, it can begin right away.
Since there is no single symptom or test result that points to lupus, your child’s doctor will collect a lot of information to make a diagnosis. He or she will conduct a thorough physical exam, make a list of your child’s current symptoms and talk with you about your child’s medical history and the medical history of close family members.
Your child’s doctor will also use certain lab tests to help make a diagnosis and, later, to keep tabs on how the lupus is progressing. These tests include:
Your child’s doctor may order other lab tests or imaging tests to check for signs of lupus in specific organs. A urinalysis, for example, can help show whether lupus is affecting the kidneys, while a chest x-ray may show telltale inflammation around the heart or lungs.
Sometimes a biopsy can be helpful in making a diagnosis or evaluating the health of a specific organ or tissue. Almost any part of the body can be biopsied—in which a small sliver of tissue is removed and examined under a microscope— although in lupus it tends to be the skin or the kidneys.
Since lupus symptoms vary so widely and test results don’t always tell the full story, you may wonder how doctors are able to put the puzzle pieces together to come up with a diagnosis. Much of it depends on their past experience with patients, but they also bear in mind 11 lupus criteria laid out by the American College of Rheumatology.
Typically, at least four of the following things must be present for a doctor to diagnose lupus:
It’s not unusual, though, for experienced physicians to make a diagnosis even when fewer than four criteria are present.
If your child has symptoms such as fever, fatigue, joint stiffness and skin rashes — especially a butterfly-shaped rash across her cheeks and nose — it might mean she has lupus. You should make an appointment with your child’s pediatrician, who will then make a referral to a rheumatologist if lupus is suspected.
If your child has already been diagnosed with lupus, you should call her specialist about any sudden changes in her symptoms or the appearance of new ones. And remember that infections can potentially be more serious in children with lupus: If your child develops a fever or feels increasingly unwell, let her doctor know right away.
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.”