National Sarcoidosis Organization

Childhood Sarcoidosis

Childhood sarcoidosis is not as uncommon as some may thing due to the fact it is commonly misdiagnose such as in adults. It is a multi systemic glaucomatous disorder of unknown causes much the same as adults get.

It presents itself in different ways as it affects different organs and depending on the age of the child it can mimic different disorders. There are two distinct forms of sarcoidosis that exist in children. Older children are more commonly diagnosed with the multi system disease similar to the adult manifestations, with lymphadenopathy and pulmonary symptoms. The younger children tend to have more skin, bone and eye involvement. For both forms of the disease oral corticosteroids tend to be the leading choice of treatment which is administered in smaller doses for shorter periods of time.

Childhood sarcoidosis can be self limiting to the child or chronic, and its characteristics vary among different populations with some evidence pointing towards African American children being of higher risk for the disease. The causes are unknown but point towards bacterial, fungus, virus as well as genetics may play some part but it has not been proven as to how anyone gets the disease.

Compared to the adult population where it has shown that 10 – 40 out of 100,000 people get the disease it is much lower in children 0.22 – 0.27 out of 100,000 children are diagnosed. In children it is diagnosed more frequently between the ages of 13 – 15 with joint pains and pulmonary involvement. Younger children before the age of 10 years is a rare diagnosis because they may be asymptomatic until they get older. Usually in very young children the common symptoms are fever, fatigue, malaise and weight loss along with other symptoms from certain organs such as lungs, eyes, skin, and lymph nodes.

Lymphatic Symptoms – This presents itself with enlarged lymph nodes which are usually firm, not tender and move freely. 40 – 70% of childhood cases show this involvement.

Eyes – The child will show signs of pain, blurry vision, sensitivity, and redness in their eyes. Approximately 29% of children show eye involvement and if left untreated may cause serious damage or even blindness.

Skin – The rash most commonly seen in children with the disease are red to yellowish brown colored rash, or flat topped red papules usually on the face. You may notice large purplish scar looking formations on the trunk of the child or even nodules that are pigmented and ulcers. Children are commonly known to have rashes from many things such as diaper rash, allergies and even other illnesses so it is hard to diagnose skin involvement with out biopsy.

Bones and Joints – Symptoms are joint pain, stiffness, and lack of movement. It can affect any joint and cause a form of arthritis similar to adults. Sarcoid arthritis can be commonly confused with juvenile rheumatoid arthritis making diagnosis hard. It is thought that bone involvement is rare in children with approximately 15% to 58% of patients that have involvement in their musculoskeletal system.

Other Organs – There are many organs much like the adult form of sarcoidosis which can be affected. It shows that childhood sarcoidosis can involve the Parotid Gland, Heart, Nervous System, Kidneys, Pancreas and Liver. There are no limitations when it comes to where this disease can and can not affect.

With it being an inflammatory disease and with it affecting children which may not be able to articulate the way they are feeling, makes both care givers, doctors and patents struggle to diagnose and treat this disease.

The prognosis of childhood onset of sarcoidosis is unclear because of the rarity of the disease but however the overall prognosis is good compared to adult onset of the disease. It has been stated that when the child reaches adulthood and has gone through treatments as a younger child they may still be symptomatic but show no worsening of symptoms. This fact was stated as to the child receiving constant and proper treatment as they grow. With this also being said it has been proven that it will depend on the severity and where the disease has involved in the child.

Childhood sarcoidosis is just as severe and debilitating as adult sarcoidosis. It mimics different disease the same way in children and it causes as much discomfort and frustration to the child as it does with adults. For a parent or care giver it can be exhausting, frustrating and worrisome. Along with the lack of knowledge and resources available it proves more research must be done to find not only answers to the questions we all have but a cure.

Support both for the child and the care giver is essential to a better understanding of the disease and help comfort one another. Open communication between the child, parents or care givers and their doctors plays a big part of treatment along with the proper medications or care needed.