Once derided as “the yuppie flu”, Chronic Fatigue Syndrome (CFS) is now recognized as a serious, often disabling, chronic illness which may affect anywhere from 800,000 to 2.2 million Americans. I thought I was very progressive as a physician and a women’s health advocate because I began speaking and writing about CFS more than 10 years ago, when many physicians still believed this was one of those “it’s all in your head” diagnoses. But even I had no idea that CFS could affect children until my son Brian was diagnosed with CFS at the age of 11.5. As a doctor, I had access to consulting the top pediatric experts in the country (including Dr. Greene): as a mom or as a doctor, you know you’re in trouble when all the experts agree with a “bad news” or controversial diagnosis.
It turned out that 11.5 is the average age of CFS in children. It also turned out that making the diagnosis in Brian wasn’t controversial at all. He had a “classic” presentation: like 90% of young people with CFS, he was 100% well until the day he developed a flu-like illness. This was the same illness that his younger sister and I also developed at the same time (dad was vaccinated for the flu that year; we weren’t). Until the day he got sick, he was a top student and an accomplished 3-sport athlete. While my daughter and I got better within 7 to 10 days, Brian never recuperated. At first we thought he might have mono; then we thought he might have everything! He lost 10% of his body weight in the first 2 weeks; had no appetite or sense of thirst, severe headaches and photophobia (extremely light-sensitive), severely sore throat, severely impaired memory, “brain fog”, difficulty concentrating, difficulty reading, word blockages, short-term memory loss, difficulty getting out of bed or lifting a water bottle, numerous sleep disturbances, severe dizziness and difficulty holding his head up, impaired balance, shortness of breath and difficulty breathing; had the sense of fevers and chills without fevers; and he developed new sensitivities to foods. It turned out he had every symptom on the list except joint pain.
One of the challenges with CFS is that it is what’s called a “diagnosis of exclusion”: this means that since there’s no specific blood or radiologic test to “prove” that the diagnosis is CFS, all the other possibilities have to be ruled out first. This meant numerous blood tests, clinical exams, and even an MRI of the brain to make sure he didn’t have a brain tumor. Once all of those steps were taken, we were left with the clinical diagnosis of CFS. This comes from a list of symptoms of CFS, which is similar in adults and children, but with enough small differences that there is now a separate “Pediatric Case Definition” (see http://www.njcfsa.org/). The biggest difference is that adults must have prolonged, unexplained and persistent or relapsing exhaustion which persists for six months. In children or teens, this overwhelming fatigue has to last for 3 months.
In Brian’s case, the overwhelming symptoms lasted for more than a year. He missed the last 6 weeks of 6th grade and most of 7th grade, during which time he was predominantly home-bound and home-schooled. Now, nearly 4 years since his diagnosis, he has fallen into a relapsing and remitting pattern of CFS. He missed 8-10 weeks of school in 8th and 9th grades, but so far, in 10th grade, has perfect attendance, our new baseline measure of “wellness” in our home.
In the upcoming blog entries this week, I’ll discuss the symptoms of CFS in more detail, including a check-list to see if you or your child might have the symptoms of CFS (“Dr. Donnica’s Decisionnaire” ™); some of the challenges to diagnosing and managing CFS; the treatment of CFS, and finally, the education of children and teens with CFS. For more information about CFS, go to www.cfids.org or www.njcfsa.org.