Chronic Illness in Children: Systemic Lupus Erythematosus
Kayla A. Savoy
Southern University School of Nursing
Systemic Lupus Erythematosus is an autoimmune disease in which the immune system attacks healthy cells, tissue and organs, including the skin, kidney, heart, lungs, brain, joints and blood vessels. Symptoms of lupus vary between patients. The most common symptoms include unexplained fever, skin rash, swollen or painful joints, fatigue, and kidney problems. Lupus can be treated effectively, but there is presently no cure for the condition. People with lupus may experience periods of exacerbation of symptoms, which are termed flares, as well as periods of remission. The etiology of the abnormal response in SLE is unknown, but a genetic influence is suspected. Multiple genes from the HLA complex show association with SLE. Environmental factors such as sun, ultraviolet light exposure, stress, estrogen, pregnancy, and exposure to some chemicals and toxins are believed to contribute to the occurrence of SLE. Infections, viruses, and medications may also stimulate immune hyperactivity. SLE is the result of an abnormal immune response causing production of abnormal antibodies and formation of immune complexes. These immune complexes are deposited in tissues, causing inflammation and inciting other proinflammatory mediators that result in tissue injury and damage. Immune complex deposition in the glomerulus of the kidney causes lupus nephritis; a life-threatening complication of SLE. The onset of SLE can be insidious, with intermittent symptoms such as fever, fatigue, weight loss, and arthralgia. SLE in children tends to be more severe at onset and has a more aggressive course than adult onset disease. Neonatal lupus erythematosus occurs when maternal autoantibodies cross the placenta and cause transient lupus like symptoms in the newborn, with potential lethal complication of heart block. (Hockenberry, 1608).

For a family dealing with a child with SLE, they must first know about the nature of the disease, types of therapy, medications, diagnostic procedures, and what measures to take to be able to provide the best care for their child. Diet, exercise, and rest are the daily elements under direct patient control (Hockenberry, 1610). There is no specific SLE diet, but a balanced diet that does not exceed calorie expenditure is essential. A low-salt diet is indicated in children with dyslipidemia. A diet rich in calcium and vitamin D is essential to prevent osteoporosis. If calcium and vitamin D is not enough, supplements need to be recommended. The benefits of exercise help minimize SLE complications and side effects of corticosteroids. Unfortunately, many kids stop participation in sports after diagnosis. Children with SLE report more fatigue and have lower aerobic fitness (Hockenberry, 1610). Parents should encourage continuation of sports and recreational activities if possible, if not they should try to modify the activity or alternatives to encourage the child to view exercise as an essential part of the treatment plan (Hockenberry, 1610). Additional rest is necessary during disease exacerbations but not to the extent that it interferes with regular sleep patterns. Parents should also encourage the use of protective clothing, hats, and a sunscreen with a SPF >30. Scheduling outdoor activities in the morning and evening can reduce exposure without limiting participation in activities (Hockenberry, 1610).

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As the nurse, during a disease flare, it is important to provide emotional support for the patient and family. During a flare the patient may become very ill. Our job is to accurately record the severity of symptoms and document the response to the therapy. We should also assess fever pattern, joint inflammation, limitation of motion, location, and degree of discomfort, and fatigue. It is important to monitor the patient’s weight and intake and output; especially if corticosteroids are prescribed because of fluid retention and possible renal failure (Lewis,1538). In a patient with SLE we want to asses for neurologic function. Observe for vision problems, headaches, personality changes, seizures, and memory loss. Collect 24-hour urine samples for protein and creatinine clearance as ordered (Lewis, 1541). Nerve irritation of the extremities may cause tingling, numbness, and weakness of the hand and feet (Lewis, 1541). Patient involvement is very important for successful home management. As the nurse, helping the patient understand that even strong adherence to the treatment plan is no guarantee against flares. Various factors may increase disease activity such as fatigue, sun exposure, infection, emotional stress, drugs, and surgery. The goal is to help the patient and family eliminate or reduce exposure to these factors.
A consumer group used to help families cope with lupus is The Lupus foundation of America. LFA is a charitable organization that implement programs of research, education and advocacy. They are advancing their research on Lupus by funding studies into what causes lupus, how it progresses, and better ways to manage lupus. Their mission is to improve the quality of life for all people affected by lupus. This organizations focuses on raising awareness for the disease and educating the family and caregivers. To cope with such disease, the caregiver must know what the disease is and what it is not. Knowing the signs and symptoms, treatments, and medications help the family provide adequate care for the patient. The LFA provide diet and nutritional guidelines as well as financial support for the family dealing with a child with Lupus.
Strategies to promote optimal wellness in someone with systemic lupus erythematosus is to be compliant with all medications. Medications should not be stopped abruptly. Planning activities help the patient conserve energy. Teaching patients stress-reducing techniques will also help reduce flares. Encourage regular rest to help with fatigue. Instructing the patient to keep the skin clean and dry to avoid secondary infections. Using hot and cold therapy can help the patient with joint pain. The use of guided imagery can be used as a nonpharmacologic method to help relieve pain. The patient should also limit sun exposure. If going into the sun the patient should wear a sunscreen with a SPF ;30. A balanced diet that does not exceed calorie expenditure is essential.

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