FM/CFS/ME RESOURCES - Pediatric CFS/ME Development
 



 




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 PEDIATRIC CFS/ME DEVELOPMENT

Pediatric CFS/ME Development

What happens to children and adolescents who develop CFS/ME? The majority of children, particularly adolescents, have an acute onset of symptoms that marks the beginning of CFS/ME. An acute onset is characterized by the sudden appearance of symptoms within a few days to weeks, usually with a flu-like or mononucleosis-like illness in a child who had previously been healthy.

Children who experience an acute onset can clearly describe their symptoms, such as the degree of fatigue or impairment in cognitive abilities, in comparison to their pre-illness state. These children may accumulate a bewildering array of diagnoses from their pediatricians, including childhood migraine syndrome, Crohn's disease, atypical epilepsy, school phobia, attention deficit disorder, rheumatoid arthritis, chronic rheumatic fever, irritable bowel syndrome and others.


Gradual Presentation

The gradual presentation of CFS is slightly different and seems to occur more often in younger (pre-adolescent) children. It is defined by the appearance of symptoms over several months or longer, or by mild symptoms suggestive of CFS (frequent sore throats, headaches or joint pains, relative inactivity, sleeping more than other children of the same age) prior to an acute episode.

Children and adolescents with CFS/ME are occasionally extremely pale. More often, however, they look completely well. The lack of obvious signs of illness may mean that the first sign of CFS/ME will be a marked limitation in either physical or mental activity. These limitations are usually first noticed by a parent or teacher.


Outward Appearance

The outwardly normal appearance of a CFS/ME child may lead to the accusation of School Avoidance Behavior (school phobia) or the citing of a parent for Munchausen's syndrome by proxy. The severity of CFS/ME varies.

Some children are severely disabled and bedridden. Others can go to school. A few are capable of playing sports. Most children fall between the two ends of this spectrum. As a rule, CFS/ME is more disabling than other chronic illnesses. The pattern and severity of the symptoms experienced by a child may change markedly from day to day or during the day. It is important to listen to what the child has to say about the severity of his/her symptoms. Remissions and relapses are common. Relapses may be caused by over-exertion or by other infectious illnesses.


Recovery Rates

Over time, slow improvement is likely, especially in the first four years. Recovery rates are uncertain but rates of up to 40 percent have been reported. Children whose health improves to near pre-illness levels are likely to find that they need more rest than their peers.

A student who becomes chronically ill may develop the additional problem of emotional conflict. The emotional conflict by itself can impinge upon a student's education. A teacher can better assist a chronically ill student once he/she realizes that the student is exhibiting one of the four behaviors associated with the emotional conflict:

  • 1. Denial — I am not sick. I want to be like everyone else. (The student overdoes on good days, followed by severe relapses.)

  • 2. Isolation — I cannot keep up with my peers. My peers ridicule me because some days I can keep up and other days I can do nothing.

  • 3. Depression/Anxiety — I will never get well. I will never do what I want to do. I will never be who I want to be.

  • 4. Resiliency — I am who/what I am. I will do what I can. My illness has taught me special things. I will be a different person than I imagined.


Psychotherapy

Psychotherapy can be helpful in working through the phases of this emotional conflict both for the patient and the family. For psychotherapy to be successful, the therapist needs to understand and be experienced with treating patients with illnesses like CFS/ME.


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Source:

  • Dr. Kenneth Friedman and Rosemary Underhill, chronic fatigue syndrome, Recognizing and assisting students with CFS, New Jersey Chronic Fatigue Syndrome Association.
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