Chronic Fatigue Syndrome – A Mother’s Perspective

My daughter, Kristy, now age 15, was diagnosed with chronic fatigue syndrome (CFS) a little over two years ago. She had been suffering from CFS even longer, we just didn't have a name for it.

Her illness started with a recurring, unrelenting cough that kept her out of school for weeks at a time. Then came the nasty migraines. Kristy had actively participated in sports, especially soccer and volleyball, until her health took a turn for the worse the summer of her freshman year at high school. She came home from practices so fatigued, her head pounding incessantly. She just slept and slept.

Kristy suffered through the summer, including our family trip to Disney World. She was a real trooper though, insisting on trying to keep up in spite of exhaustion and flu-like symptoms. We limited our activities to allow her time to rest, but her symptoms persisted. We returned home from Florida the day before school started -- her freshman year of high school! She was excited, but nervous. She was ready to reunite with her old friends as well as make lots of new ones. Her freshman experience lasted three days. The cough returned, this time with a vengeance.

And so began dozens of trips to her pediatrician, even more to "specialists,” trips to the emergency room and a hospital stay after Kristy developed pneumonia. She even went through two narcolepsy studies. Still, they couldn’t find the root of her symptoms and told us she was a normal child. Let me tell you, nothing was normal in our home.

All this finally led to a diagnosis of chronic fatigue syndrome. I used to call it the "left-over disease" since she was tested for everything else and CFS was the one illness left. Dr. Chia, a CFS specialist, recommended she be tested for Echovirus AB Type 7. In his opinion, if the titers for this virus were high, that would a strong indication of CFS.

Although we had never heard of CFS, we were relieved to have an answer.  We went online and learned that Kristy's symptoms -- sore throat, muscle pain, intense headaches, unrefreshing sleep, short-term memory loss, severe inability to concentrate, chronic cough, dizziness, nausea, tingling sensations -- were characteristic of the illness.

What triggered her episode in September of 2003? Where did she pick up this virus? We may never know. No else in the family has shown any symptoms, nor have any of Kristy’s friends become ill.

A few thoughts….

The Downside: It took the doctors five months to diagnosis CFS. Some said it was "all in her head." How dare they! My daughter was a happy, normal teenager, who excelled in school, had plenty of friends, played sports, was involved in all sorts of extra-curricular activities and was looking forward to high school. She had no reason to “pretend” to be ill and stay home. I didn’t take her back to those doctors. I strongly believe, above all, you have to know your child, and you have to believe your child.

Kristy has socialized with the same set of children since kindergarten. We believed some would be life-long friends, but we were sadly mistaken. Early on, they stayed away because they thought her illness was contagious. Then they stopped calling. Kristy was heartbroken, lonely and isolated. A few friends came by the house occasionally, but those visits were few and far between.

Frustration: Frustration has become our “f” word. “F” for frustration with doctors, frustration because there is no cure, frustration not knowing how to help our daughter, frustration not knowing what the future holds.

CFS has changed our family. Kristy's dad had a difficult time understanding her symptoms; her irregular sleep patterns, her inability to leave the house and participate in life, her nodding off at the dinner table. He's finally gained some understanding and more patience, but it has taken some time. Our life has also become a balancing act. We have one child with an abundance of energy, typical of a 12-year-old boy, and another child who can barely get out of bed most days. I planned to go back to work full time; now my full time job is taking care of Kristy. It takes a great deal of flexibility, patience and compassion to deal with the unpredictability of this disease.

The Upside: We are fortunate that our pediatrician, Dr. Elaine Gutierrez, didn't give up on Kristy. Dr. Gutierrez found Dr. John K.S. Chia, a specialist in Torrance, and together they help us manage Kristy's symptoms.

My parents and sister have been very supportive and helpful. Even when they don’t understand what we’re going through, they are willing to lend a hand (or an ear). And they are no longer surprised when it is noon and Kristy is still in bed. What they can’t understand, however, is why the medical community isn’t doing more to find a cure.

Today Kristy spends a lot of time on the computer and we are delighted that she has made new online friends who are supportive and understanding. Although they are not physically close, they are caring and compassionate, filling a void Kristy desperately needed. Luckily, these friends are all in different time zones, so no matter what time she’s up, there’s always someone to chat with.

I believe the things that have helped Kristy deal with CFS are her up-beat attitude and her sense of humor. In spite of CFS, Kristy is still the same funny, caring, loving little girl I had before the illness wrecked havoc in our lives, especially hers.

In researching CFS, we found many web sites. Some of the information was contradictory and confusing, some didn’t address the unique problems of teenagers with CFS. We were thankful to find one site with credible information that was useful to adults, teenagers and caregivers -- www.cfids.org -- the website of the CFIDS Association of America. There we found reliable information on CFS and areas dedicated to the special needs of young people with CFS. We became members and decided we wanted to do more to help.

Our endeavor, Girlie Girls Design Studio -- http://www.girliegirlsdesignstudio.com/ -- has brought mother and daughter together in a new way. We both get to be creative, designing jewelry and a website. Our goal is to set funds aside for Kristy’s college tuition as well as a family trip to Europe. At the same time, we also want to try and help other CFS kids.

We have designed a number of CFS awareness bracelets, with a portion of our profits directly going to benefit the good work of the CFIDS Association of America. Help us help the Association educate doctors, lawmakers and the general public about this devastating illness. Even if you don't purchase one of our bracelets, please visit their website and become a member.

In good health,

Barbara Romero