Calen's Story: A Child's Journey Through CFIDS

By Karen Lang

Originally published in The CFIDS Chronicle, Winter 1994

"I want to be back in school, with my friends. I want to be a normal kid again." - Calen, 13

My son, Calen, and I have chronic fatigue and immune dysfunction syndrome (CFIDS), a mysterious disease involving derangement of the immune system whose cause and cure are still under investigation. Like most people who have CFIDS, we have been through the mill looking for a knowledgeable physician. The problems I've encountered have been easier to bear than my son's. Because I am an adult, I have the authority and the life experience to fight my own battles, even though I may lack the stamina to do so. Calen hasn't been as lucky - he's a kid. It is a reality that puts him at the mercy of the adults who make the decisions that affect his life. This is Calen's story. It is dedicated to every kid who suffers from CFIDS and who struggles to be heard, listened to and helped.

Coming Down With It
Calen is now 14. When he was seven, he came down with what the specialists thought was Kawasaki's disease - a frightening, little-understood viral-like episode that lasts for several weeks with spiking high fevers, severe myalgias and arthralgias, abdominal pain, rashes and intense headaches. During the sub-acute phase that follows and lasts for a month or two, when the fever goes down and the child seems to be doing better, the danger arises for the development of aneurysms in the blood vessels. The real fear is of coronary aneurysms, which can kill if they should rupture. Up to 20 percent of Kawasaki's kids develop aneurysms in the coronary artery. Most make it through, but some don't.

As with CFIDS, the cause of Kawasaki's is still not known. The primary treatment for the disease is large doses of intravenous gamma globulin, with aspirin to thin the blood. Calen had most of the markers for the disease, but not all. The doctors decided he fit the diagnosis closely enough and treated him for the disease. He seemed to recover after a few months, but couldn't completely shake the headaches and abdominal pain.

His pediatrician was puzzled by the recurrent intense headaches and stomachaches that continued to plague him several years after he'd gotten over Kawasaki's. He ordered an EEG and an ultrasound of the abdomen to try to determine what might be causing Calen's symptoms. Both came back normal. Concerned that Calen might be suffering from school stress, he cautioned us to be on the lookout for signs of school phobia. He warned us that letting Calen stay home if all he had was a headache or stomachache might encourage the development of serious social and psychological problems.

In November 1990, when he was 11, Calen came down with strep throat. Two weeks later, he tested positive for mononucleosis. We kept him home through Christmas and sent him back to school in early January. He was back in bed in two days, exhausted, myalgic, feverish and sick. We followed this pattern - back to school for one or two days, in bed sick and exhausted for a week or two - for several months. Epstein-Barr virus (EBV) titers, checked in May, showed that he had chronic active EBV. The pediatrician said, "I know very little about this disease. All I can really tell you is to let him rest. I don't know how long he'll be this way. Let's look at him again before school starts in September."

Between November 1990 and June 1991, Calen missed all but about 10 days of school. He had attended a private Christian school since preschool and the staff knew him well. We all knew there was something physically wrong because the change in him was so dramatic. At one point, his blood was tested to see if he had leukemia. No one knew quite what the problem was, and none of us knew how to handle it.

There are unwritten rules we parents go by, like the one about sending your kids to school when they complain of headaches or stomachaches, as long as they are not running a fever or throwing up, and the doctor can't find anything wrong. These rules no longer held and there were no new ones we could follow.

Getting Diagnosed
In June 1991, Calen and I saw a friend in the parking lot at the bank. He asked how we were doing, and for some reason, instead of saying "fine," I told him about Calen's problems. When I mentioned chronic EBV, he said "If someone is saying he has chronic Epstein-Barr, I know what his problem is. And, I know who he should see." It turned out that our friend had been sick with CFIDS for more than nine years and was part of the original cluster outbreak at Lake Tahoe in 1984. Through him, we found a compassionate and knowledgeable physician, Dan Peterson, who diagnosed and set up treatment programs for both of us.

Calen was given a formal diagnosis of CFIDS in August 1991. Dr. Peterson ordered rest and a reduced school schedule for him, with no medication except acetaminophen (Tylenol) at first. His exposure to various drug therapies was kept minimal so that his normal physical growth and development would not be compromised.

As autumn set in, he began catching every virus that came along. He was miserable and not making any progress toward recuperation. Dr. Peterson told him about a boy in Southern California who had received a 10-week course of intramuscular (IM) gamma globulin injections of 5 cc weekly and was able to return to school and sports. He asked Calen if he'd like to see if it would work for him. They talked about the discomfort involved in weekly injections and about the benefits of feeling better if it worked. Calen agreed to try it and together they worked out the treatment plan. About three weeks into therapy, Calen began to show a little of the sparkle he had lost. He continued to improve after he finished the course of treatment. He was not completely well, but he was feeling and looking better than he had during the previous 12 months.

In the fall of 1992, we noticed a similar pattern of viral vulnerability beginning again. He went back on 5 cc of IM gamma globulin weekly from October through the following June, and was able to attend school on and off on a part-time basis.

Home Schooling and the School District, 1992
Dr. Peterson recommended home schooling to be provided by the school district for the spring of 1992 in order to give Calen more opportunity to rest and recuperate. It meant pulling him out of the private school and enrolling him (on paper, at least) in the public school district. We were told by the district that he would not be able to have any contact at all with his private school. He couldn't visit his old classroom and classmates, nor could he work with the reading specialist at his old school site. Any contact with his private school, we were told, would render him ineligible for the home schooling program.

Having this avenue of social contact cut off was very difficult for Calen. We live on a farm 20 miles out of town and there are no kids around for him to socialize with. As he felt increasingly cut off from the world around him, he became more and more withdrawn. He didn't want to go anywhere - to town, out to eat, even to watch the Sacramento Kings basketball games. Noises bothered him, strange places bothered him, crowds bothered him.

One day, his dad and older brother talked him into going to Grandma's house with them. On the way home, they stopped at a fast food restaurant for lunch. Calen flatly refused to leave the pickup truck. He ignored their attempts to get him out of the truck and waited by himself in the parking lot until they finished their lunch inside.

Calen's increasing withdrawal alarmed us. We called Dr. Peterson and told him what was happening He agreed that Calen needed an activity that would give him regular social contact with kids his age. Calen settled on baseball, a physical activity that would not be too tiring, but would give him a fairly normal 12-year-old's experience. His dad was the team manager and he played when he felt able. He missed a few games and practices, and often only played one or two innings, but he finally had some opportunities for much-needed social growth and development.

A couple of weeks after baseball season started, the school nurse came to the house for a visit. She asked if Calen was playing baseball. I told her he was and explained why. The district's position was that if he felt well enough to play baseball, then surely he was well enough to return to school. The nurse told me that the district did not feel it was necessary to serve Calen anymore.

"Oh boy," I thought, "this is where push meets shove." I leaned over the table toward her and said, "The decision to serve, or not to serve Calen's needs is not mine, nor yours, nor the district's to make. It is his doctor's decision.  If his doctor determines that Calen needs home schooling, then my husband and I are prepared to take any measures necessary, including legal action, to ensure that our son's academic needs will be met."

Two days later, the district secretary called to set up a meeting for the following week. We all - parents, student, school nurse, school psychologist, reading specialist, district representative and resource teacher - discussed Calen's need for proper socialization. Once they were assured that we weren't abusing their services, that Calen would prefer school and sports to being isolated at home, we were able to establish an atmosphere of cooperation.

With Dr. Peterson's recommendations, we set up a program of part-time school and part-time home instruction provided by the district in order to meet Calen's academic and social needs for the school year 1992-93. He attended school from 12:30 to 3:00 pm daily when he could, and worked with a home teacher three mornings a week. Things were by no means normal. He still missed over half of the school year due to relapses, but he did better psychologically, socially and academically than he had the previous year.

Looking Ahead ...
As we came to the end of summer 1993, Calen was doing well. His strength and stamina had improved and he had been symptom-free for several months - no headaches or stomachaches, fevers, sore throats or paralyzing fatigue. He was anxious to get back to his friends and a normal school experience.

Dr. Peterson gave him the green light to return to his adolescent world, but with a few words of caution for us all - "He needs to be allowed to do, but not to overdo."

As parents, we were faced with a delicate task: to encourage him to do what he could while watching to see that he didn't overextend to the point of failure. He needed to be able to think like a healthy kid again, trying to do whatever seemed good and reasonable, not like a chronically ill kid, whose limits restricted his freedom to grow. Too much worry on our part would interfere with his critical task of building self-esteem and finding a comfortable place among his peers.

We knew he'd have some formidable obstacles to overcome. Having lost the better part of three years of learning, he would be trying to catch up while simultaneously trying to stay up with the demands of school. He also had to deal with the cognitive dysfunction that accompanies CFIDS - problems with memory, concentration, processing skills, word and thought retrieval and basic math calculations that can linger long after the physical signs of the disease have passed.

We were ready for these challenges as Calen started back to school in the fall.

... And Falling Back: Home Schooling and the School District, 1993
By October, it was clear that he could not handle a normal school schedule. He had already missed 22 of the first 30 days with headaches, stomachaches and a virus he caught the second week of school. We reapplied to the school district for home instruction. Once again, we took him out of his private school and enrolled him in the public school system. Our request, which included Dr. Peterson's order for home instruction and his letter explaining Calen's medical disability, was denied.

I learned of the denial when I called the secretary a week or so later to ask why no one had phoned or written to start home schooling. She said Calen was ineligible because he had used the home instruction program the year before. Home instruction, she explained, is intended only for short-term use. I asked her what program was available for the kids who are chronically ill, where neither death nor a return to good health brings about an end to their need for special services. She said she wasn't qualified to answer my questions.

The assistant superintendent of student services was not in, so I asked the secretary to give him a message. "Listen carefully," I said, "for this is important. Tell the assistant superintendent that Calen is entitled to an education and that the district is mandated by federal law to provide it. I know the federal law. It is Public Law 94-142, the Education of All Handicapped Children Act of 1975. The section that applies to Calen is 504, 'Otherwise Health Impaired.' I have a copy of it before me. My husband and I are prepared to take legal action, if necessary, to ensure that Calen's academic needs are met." I spoke slowly, as if I were giving critical instructions to one of my kids.

The assistant superintendent returned my call that afternoon. To my amazement, he held to the argument that Calen had used the program the year before and that it was not intended for an indefinite period of time. "So what program do you have for him?" I asked. He recommended that we apply for a transfer to another district in the county that had a program he was sure would meet Calen's needs. We filled out the necessary paperwork and the interdistrict transfer process began.

Two weeks later I contacted the other district for an update. Calen's name was not on anyone's list and no one knew of any program that would fit his needs. Even if they did have an appropriate program, the second district was not sure it wanted to spend its money on our district's educational problems.

I called the legal and special education departments at the California State Department of Education to find out what Calen's rights were. I was told that he was entitled to receive educational services at home if his medical problems prevent him from functioning normally in a regular academic environment. I was also told that if the district drags its feet in responding to our request for their services, I should ask for a due process hearing, to be conducted by independent legal counsel, at the district's expense.

Empowered with this information, I called the assistant superintendent again and told him that the other district did not have anything better to offer Calen than our district did. In addition, they were not willing to take on the responsibility of providing services for Calen when our district could offer him the same home schooling program. I took a breath, exhaled slowly, and said, "You should be advised that I have been in touch with the legal department at the state Department of Education and I know what Calen's rights are. He is protected by PL 94-142, Section 504. I have the law, the section and the interpretation in my hands." There was a short pause and then he answered, "Let me do some checking and get back to you."

He called me back two days later. He had contacted the U.S. Centers for Disease Control and learned that the disabilities Calen had as a result of CFIDS did, indeed, make him eligible for Section 504 services. He agreed to restart the program Calen used the previous year until we could develop something more appropriate to his needs. We set a date in early January 1994 to meet with the school nurse, psychologist and resource specialist to determine his academic and developmental needs, and to put together a program that meets them.

Coming to Terms With the Disease
CFIDS challenges everything about our lives, whether we have the disease or love someone who does. Goals and dreams change, as do the ways in which we see others and ourselves. Activities must be carefully planned, tentatively and always subject to change. Friends and families find themselves assuming more responsibilities in relationships and in the home, and sooner or later children in the family learn that life is not always fair. We adjust, ill and well alike, by making changes, by finding new or different ways of doing things.

The last few years have been a time of learning for everyone in our family - learning to accept situations that are less than perfect, learning to be flexible and open to alternatives, learning to be masters at the give-and-take of daily life.

Calen has had to let go of some activities, modify some and try some that are new. Playing basketball, for example, is out of the question, but baseball doesn't take as much energy. Instead of feeling sorry for himself because he can't play in the city basketball league with his friends during the winter, he works on his hitting, throwing and fielding skills year-round, and looks forward to the start of baseball season in the spring.

He is learning to recognize and respect his physical limits, even though it is painfully difficult for him as an adolescent to do anything that draws attention to him or sets him apart from his peers. One day, his physical education class ran three miles and was timed. He was too embarrassed to tell the teacher he didn't think he should run the distance, so he ran and spent the next two weeks at home in bed. It was a valuable experience, for it taught him that he is ultimately responsible for deciding what he can and cannot do. He is getting better at telling teachers and friends when he needs to stop or take a break, and is finding that he can do many of the things his friends can do, as long as he remembers where to draw the line.

Kids With CFIDS Need Advocates
Calen's story is not unique. Unfortunately, it isn't over yet, either. Because of the cognitive deficit he has experienced with the illness, his academic future is at risk, even if he makes it past the physical disease of CFIDS.

CFIDS kids have great difficulty finishing school. Many settle for a General Education Diploma (GED) instead of achieving a high school diploma. Others completely drop out before graduating because the cognitive, social and physical energy requirements of high school and adolescence are too much. What a waste, not only for the kids and their families, but for society, which will lose their productivity if something is not done to help them.

This disease is hell for anyone, but it is particularly devastating for kids who must develop the social and psychological skills during adolescence that will serve them through their adult lives. If the disease catches them before they have the chance to learn these skills, it may interfere with their ability to develop them at all.

What do these kids need?

They need to be taken seriously by parents, doctors, teachers and others, and not to be written off as manipulative, lazy, emotionally disturbed or school phobic. The danger of suicide is great for youngsters whose complaints of illness and academic breakdown have been invalidated and brushed off for years by the very adults who most influence their lives. When told repeatedly that there is nothing physically wrong with them, that their problems are the result of laziness or a bad attitude and that they do not, and probably never will, amount to anything, sooner or later they come to believe it. How many adolescent suicides may actually be undiagnosed CFIDS kids who have lost the battle to be heard, acknowledged and helped?

They need to be listened to. It is hard to ignore the advice of educators and pediatricians who tell us that their complaints of malaise and dysfunction are signs of manipulative or antisocial behavior, and who admonish us to be tough and make them toe the line. After all, these are the experts to whom we have always turned for advice. But when our children have CFIDS, we must learn to listen to and accept what they tell us about what they can and cannot do. Acknowledging and validating their complaints relieves the pressure they feel to prove that they are really sick. The energy they have wasted trying to justify how they feel can now be used for the more important job of healing.

They need advocates, people like you and me who are willing to fight with them and for them to educate and enlighten the community to the physical and cognitive challenges they face. It is their bad luck to be kids with this disease. Society does not listen very well to their voices, nor does it respond very well to their needs. They cannot fight the battle by themselves.

By insisting that their complaints of illness be taken seriously, that their educational and medical needs be acknowledged and accommodated, that doctors and other health professionals learn about CFIDS and the methods that already exist by which it can be diagnosed and treated, and that health policy-makers make CFIDS a national health priority and direct funding for research into its cause, treatment and cure, we can help many kids like Calen get past their time of illness and back to their friends, their schools and their crucial time of growth and development.

Tips for Dealing With the School District
Working with an obstinate school district can present a challenge, but it isn't an impossible task. Here are a few points that may be helpful for parents and others who are working on the CFIDS student's behalf:

Approach the district with an attitude of cooperation, but with the knowledge that your CFIDS student is entitled to special services under Section 504 of PL 94-142.

Don't be afraid to get tough if you need to. Remember that the student has the benefit of the doubt if there are any problems. He/she is eligible for a number of different services. Some, the district may not know about, and some it may hope you won't find out about. Services include access to counseling, physical therapy, social work services, transportation (if needed) and a variety of mechanical aids such as calculators, computers and tape recorders so that disabled students can function more easily and on a more equal basis with non-disabled children at their grade level. Ignorance of what is available, lack of time and lack of money may be the district's concerns, but your child's academic and emotional growth and development are yours. Keep in mind that you are negotiating your child's future.

Don't hesitate to contact either the assistant superintendent in charge of student services or the district superintendent, if you find you are getting nowhere with their lower-level representatives.

Gather as much information as you can before dealing with the district so that you are prepared to counter arguments in the event that your child is initially ruled ineligible for district services.

Contact the National Information Center for Children and Youth with Disabilities (NICHCY), P.O. Box 1492, Washington DC 20013, 800/999-5599. NICHCY is an organization that provides resources for specific questions (CFS is in its database), referrals to other organizations, packets and lists of publications. I received a free packet which included a copy of the Americans with Disabilities Act of 1973, with revisions since then, including PL 94-142, and an explanation of Section 504, the part that applies to CFIDS kids. It has been a valuable resource.

Protection and Advocacy, Inc . is another excellent resource. It is a non-profit federal agency that provides a variety of free legal services for the disabled, including Section 504 children. The organization has regional offices - check the business white pages in the phone book for the telephone number or the listings under the Department of Health and Human Services in the Federal Government section.

Finally, do not forget that your state Department of Education has important resources and information. When I told the assistant superintendent that I had been in touch with the legal branch of the state Department of Education about Calen's rights, the change in his approach to the problem was remarkable.

Above all, believe your child. Be prepared. Be empowered by the information and support services that are available to you. Be diplomatic, but firm in your dealings with representatives who may be ignorant or stubborn in their views. Beware of experts who warn of behavior problems. Be willing to share what you learn about working the system with others who follow.

And be assured that your efforts will help to ease the journey for all our CFIDS kids and their families.