The Joy of Play: Children Living with Sarcoidosis
What happens, then, when play is met with pain, discomfort, fear, or disability? How do we as parents, caregivers, and healthcare providers keep that desire to explore and master the environment alive?
Fortunately, sarcoidosis is rare in children, and 80-85% of them has a favorable outcome, with the symptoms resolving in 2-3 years. Children four years and younger usually present with a triad of symptoms, which include uveitis, rash, and eye inflammation. Unfortunately, uveitis is the third leading cause of blindness, with 5-10% of all cases occurring in children less than sixteen. Symptoms such as blurred vision eye pain or discharge, itching, burning and sensitivity to light needs further investigation. Early, aggressive treatment of eye problems is recommended by some pediatric ophthalmologists.
Sarcoidosis in children four years and older often presents like it does in adults, with fatigue and weight loss being two of the most common symptoms. Adolescents 9-15 years are most at risk. Of children who contract the disease, fifty percent will have sarcoidosis of the lungs. Sarcoid arthropathy, which is sarcoidosis of the joints, often imitates JRA (juvenile rheumatoid arthritis). Enlargement of the liver and spleen is seen in 40% of children with sarcoidosis.
When a diagnosis of sarcoidosis is made, parents usually have to face the issue of guilt. What did I do wrong? What could I have done to prevent this? On a daily basis, the question of whether or not one is doing a good job comes up repeatedly. How do I let my child be who he or she is, and still keep her/him safe, comfortable, okay?
Education is not a parental cure-all for dealing with a child with sarcoidosis, but it is great preparation. Knowing the symptoms, the expected course of the disease, recommended treatments and precautions, not only provides tools for helping the child manage the condition, but also arms the parents for decision making. Establishing a clear line of communication and partnership with health care providers assures that the child is receiving the best treatment.
No one wants to see a child experience the pain that may accompany any of the symptoms of sarcoidosis. Pain management is a serious issue for all concerned. The American Pain Society has issued a position statement on pediatric pain. While NSAIDS (non-steroidal anti-inflammatory drugs) and corticosteroids are often the treatment of choice for many symptoms, dosage amounts and schedules must be carefully determined and monitored, to minimize any side
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