10% – 20% of cases of systemic lupus erythematosus (SLE) begin before age 20 and sometimes can start as early as age 5. Early symptoms are nearly identical to those experienced by adults with SLE, or drug-induced lupus (DIL). However childhood-onset lupus, also known as juvenile-onset lupus erythematosus (JSLE), often has more severe symptoms. The 5,000 – 1,000 children and teens fighting the disease are more likely to suffer from lasting kidney, brain, and damage to other organs and to have life-long consequences.
What are the symptoms of childhood lupus?
Childhood lupus is very similar to SLE and has many of the same symptoms, including:
- weight gain
- oral ulcers
- gastrointestinal symptoms including stomach pain
- cutaneous lupus
- lupus nephritis
In addition to these traditional indications of lupus, children are more prone to brain and nervous system-related symptoms than adults. These symptoms can include:
- loss of vision
- higher risks of depression and anxiety
- hemiplegia (on one side) or diplegia (equally on both sides)
- Sides of the body are paralyzed, stiff, or numb
- Caused by lupus attacking the child’s growing bloodstream and restricting blood flow to the brain
- similar to cerebral palsy or a stroke
Fortunately, children with lupus do not typically suffer from intellectual disabilities, though they may require some level of special accommodations.
As with other forms of lupus, girls with a family history of lupus and people who are of African, Latin American, Asian, or Native American/First Nations descent are more likely to develop childhood lupus. While it is much less common for boys to develop childhood lupus, they experience more severe symptoms and a higher risk of organ damage.
What causes childhood lupus?
As with SLE, the causes of childhood lupus are not fully understood. It may come from problems with how the body produces and regulates certain immune system cells called cytokines.
Most researchers think that stress, hormone changes, pollutants, infections, and other outside factors may lead to childhood lupus. There is also a genetic component, and a family history of lupus does increase the risks.
Drug-induced lupus is also a possibility for children.
Why is childhood lupus more severe?
Researchers are not sure why childhood lupus presents with more severe symptomatology. It may be more aggressive with a younger immune system or have a larger effect on the small and still-developing organs of children. It may also react to changing hormones as these children go through puberty.
Childhood lupus may also appear more severe because it is typically caught only when the disease has progressed and caused notable damage. Because lupus is so rare in children, doctors will often attribute the symptoms to something more likely, including stress, puberty, sports-related injury, dehydration, poor nutrition or eating habits, or depression and anxiety. They will also typically treat these symptoms first. It is only when there is serious organ damage, especially kidney involvement, that doctors will look towards lupus as a possibility and perform the appropriate blood and urine tests.
Another factor in the damage that childhood lupus causes are the medications itself. Because the child’s lupus symptoms will often be very severe, they will generally be prescribed high doses of medications such as corticosteroids to bring their lupus back down. These high doses work well to bring lupus under control, but they come with serious side effects, can interfere with growth & development, and can leave lasting damage.
Though alternative treatments are in development, the current medication regimen will help stave off the kidney damage and vasculitis, which are what cause the most problems for children with lupus.
Treating childhood lupus
Medications for childhood lupus are the same as those for SLE, such as immunosuppressants. Initially, children with lupus are given higher doses to bring their lupus down. After their symptoms have subsided, they may be tapered back to a lower dose appropriate for their age and size.
Childhood lupus is often treated with corticosteroids. However, new treatments have also become available recently, including IV Benlysta and IV CYTX therapy. These are not in wide use but show promise for treating young Lupus Warriors.
Regular exercise and vitamin D supplements help children build strong bones and can help make up for lack of sun exposure related to photosensitivity.
It is important for children with lupus to have a sturdy support network of doctors, psychiatrists, and education professionals to help them deal with the challenges of lupus. This helps them both grow up resilient and be able to handle their disease. Transitioning them from childhood care to adult care is also vital. Their lupus treatment team will be able to help.
Outcomes of childhood lupus
Depending on the level of kidney damage, children with lupus may need dialysis for the rest of their lives. Other organ involvement can lead to a lot of hospital visits as well. Though they have the highest morbidity and mortality of all the forms of lupus, new advances in medicine mean that children with lupus can thrive and grow up to be happy, productive adults.
Sleep is very important for growth, learning, and healing, making it vital for children with lupus to get enough sleep. Find some strategies to do so here.
Here are a few tips from experienced Lupus Warriors that may be helpful for children with lupus and their parents.
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