Pediatric CFS: Sick Children Are Going Undiagnosed

Chronic Fatigue Syndrome is a devastating, debilitating illness that is typically found in adult women. There are men who develop Chronic Fatigue Syndrome, but it is a small percentage. The gender ratio among pediatric CFS is the same, though. Chronic Fatigue Syndrome is a complicated disorder that has baffled doctors for years. The most debilitating symptom of CFS is the profound fatigue that does not improve regardless of how much bed rest the patient gets.

One area of Chronic Fatigue Syndrome we do not hear a lot about is how CFS affects children and adolescents who have it. I was diagnosed with Chronic Fatigue Syndrome at the age of 21, which is very young. But could you imagine having an illness like CFS throughout your elementary, junior high and high school years? These are the years where life is supposed to be fun, active and carefree.

Symptoms of Chronic Fatigue Syndrome include debilitating fatigue, cognitive difficulties, widespread pain, post-exertional malaise, sore throat, IBS and sleep disorders. In adults with CFS, these symptoms usually all occur at the same time at the onset of the illness. Children are often misdiagnosed because their symptoms will migrate. Due to the cognitive difficulties seen in this illness (short-term memory problems, lack of concentration), CFS children can be misdiagnosed and told they have attention deficit disorder (ADD).

Children with CFS can appear normal and appear as though their activity levels are normal but upon closer evaluation, the parent will find that their child has to rest more after a sporting event, dance or other physical activity. I believe I had a milder case of CFS as a child that exasperated when I was older. My mother used to always say that I had to rest more then my siblings and I can clearly remember always being fatigued and in pain. My pain was attributed to growing pains.

Chronic Fatigue Syndrome in children usually occurs between the ages of 10 and 17. Children as young as five years of age have been diagnosed. According to the article Why Children With CFS Are Often Overlooked, "Children and adolescents with CFIDS (especially those with a gradual onset) may be seen as unintelligent, lazy, shy or socially awkward, uncooperative, unmotivated, and so forth. As their illness progresses, teachers and parents may believe that they are simply moody, maladjusted, misbehaving, or slow-learning adolescents, because it is more difficult to recognize the neurological/cognitive problems that they've adapted to." The parents of these children often misunderstand their sick child as well. For young children with CFS, they may not even comprehend that they are sick because they have no knowledge of what normal and healthy feels like.

CFS is often misdiagnosed in children because the symptoms are not consistent. The child will experience varying symptoms at different times of the week or month. When the parents take their children to the doctor each time, the complete set of symptoms experienced over time are often not pieced together.

Another reason why CFS is going undiagnosed in children is because the criterion developed by the CDC is for CFS in adults. For children with CFS, two types of onset patterns have been noted. In children ages 5 - 12, a gradual onset of symptoms is usually seen. In children 13 and older, it is more common to see an acute onset of symptoms.

If you suspect your child has Chronic Fatigue Syndrome, he or she should be seen by a CFS specialist. General practitioners are typically not knowledgeable in dealing with Chronic Fatigue Syndrome and if they are, they have probably dealt more with adults than children.

Most importantly, listen to your child and take their symptoms seriously. If your child complains a lot about being fatigued, do not just assume that they are lazy or unmotivated. If your child complains a lot about body pain, do not just attribute it to growing pains. Regardless of age, we all need validation when we are truly ill.