From The CFIDS Chronicle, published by the CFIDS Association of America, Inc. (800) 44-CFIDS, PO Box 220398 Charlotte, NC 28222-0398

Intended for personal use only.

Calen's Story: A Child's Journey Through CFIDS
Karen Lang West Sacramento, California The CFIDS Chronicle Winter 1994
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. Likemost people who have CFIDS, we have been through the mill looking for aknowledgeable physician. The problems I've encountered have beeneasier to bear than my son's. Because I am an adult, I have theauthority and the life experience to fight my own battles, even thoughI may lack the stamina to do so. Calen hasn't been as lucky _ he's akid. It is a reality that puts him at the mercy of the adults who makethe decisions that affect his life. This is Calen's story. It isdedicated to every kid who suffers from CFIDS and who struggles to beheard, 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 withspiking high fevers, severe myalgias and arthralgias, abdominal pain,rashes and intense headaches. During the sub-acute phase that followsand lasts for a month or two, when the fever goes down and the childseems to be doing better, the danger arises for the development ofaneurysms in the blood vessels. The real fear is of coronaryaneurysms, which can kill if they should rupture.

Up to 20 percent of Kawasaki's kids develop aneurysms in thecoronary artery. Most make it through, but some don't. As with CFIDS,the cause of Kawasaki's is still not known. The primary treatment forthe disease is large doses of intravenous gamma globulin, with aspirinto thin the blood.

Calen had most of the markers for the disease, but not all. Thedoctors decided he fit the diagnosis closely enough and treated him forthe disease. He seemed to recover after a few months, but couldn'tcompletely shake the headaches and abdominal pain. His pediatricianwas puzzled by the recurrent intense headaches and stomachaches thatcontinued to plague him several years after he'd gotten overKawasaki's. He ordered an EEG and an ultrasound of the abdomen to tryto determine what might be causing Calen's symptoms. Both came backnormal. Concerned that Calen might be suffering from school stress, hecautioned us to be on the lookout for signs of school phobia. Hewarned us that letting Calen stay home if all he had was a headache orstomachache might encourage the development of serious social andpsychological problems.

In November 1990, when he was 11, Calen came down with strepthroat. Two weeks later, he tested positive for mononucleosis. Wekept him home through Christmas and sent him back to school in earlyJanuary. He was back in bed in two days, exhausted, myalgic, feverishand sick. We followed this pattern _ back to school for one or twodays, in bed sick and exhausted for a week or two _ for several months.Epstein-Barr virus (EBV) titers, checked in May, showed that he hadchronic active EBV. The pediatrician said, "I know very little aboutthis disease. All I can really tell you is to let him rest. I don'tknow 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 daysof school. He had attended a private Christian school since preschooland the staff knew him well. We all knew there was somethingphysically wrong because the change in him was so dramatic. At onepoint, his blood was tested to see if he had leukemia. No one knewquite 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 sendingyour kids to school when they complain of headaches or stomachaches, aslong as they are not running a fever or throwing up, and the doctorcan't find anything wrong. These rules no longer held and there wereno new ones we could follow.

GETTING DIAGNOSED

In June 1991, Calen and I saw a friend in the parking lot at thebank. He asked how we were doing, and for some reason, instead ofsaying "fine," I told him about Calen's problems. When I mentionedchronic 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 morethan nine years and was part of the original cluster outbreak at LakeTahoe in 1984. Through him, we found a compassionate and knowledgeablephysician, Dan Peterson, who diagnosed and set up treatment programsfor both of us. Calen was given a formal diagnosis of CFIDS in August1991. Dr. Peterson ordered rest and a reduced school schedule forhim, with no medication except acetaminophen (Tylenol) at first. Hisexposure to various drug therapies was kept minimal so that his normalphysical growth and development would not be compromised. As autumnset in, he began catching every virus that came along. He wasmiserable and not making any progress toward recuperation.

Dr. Peterson told him about a boy in Southern California who hadreceived a 10-week course of intramuscular (IM) gamma globulininjections 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. Theytalked about the discomfort involved in weekly injections and about thebenefits of feeling better if it worked. Calen agreed to try it andtogether they worked out the treatment plan. About three weeks intotherapy, Calen began to show a little of the sparkle he had lost. Hecontinued to improve after he finished the course of treatment. He wasnot completely well, but he was feeling and looking better than he hadduring the previous 12 months. In the fall of 1992, we noticed asimilar pattern of viral vulnerability beginning again. He went backon 5 cc of IM gamma globulin weekly from October through the followingJune, 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 theschool district for the spring of 1992 in order to give Calen moreopportunity to rest and recuperate. It meant pulling him out of theprivate school and enrolling him (on paper, at least) in the publicschool district. We were told by the district that he would not beable to have any contact at all with his private school. He couldn'tvisit his old classroom and classmates, nor could he work with thereading specialist at his old school site. Any contact with hisprivate school, we were told, would render him ineligible for the homeschooling program.

Having this avenue of social contact cut off was very difficultfor Calen. We live on a farm 20 miles out of town and there are nokids around for him to socialize with. As he felt increasingly cut offfrom the world around him, he became more and more withdrawn. Hedidn't want to go anywhere _ to town, out to eat, even to watch theSacramento Kings basketball games. Noises bothered him, strange placesbothered him, crowds bothered him. One day, his dad and older brothertalked him into going to Grandma's house with them. On the way home,they stopped at a fast food restaurant for lunch. Calen flatly refusedto leave the pickup truck. He ignored their attempts to get him out ofthe truck and waited by himself in the parking lot until they finishedtheir lunch inside.

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

A couple of weeks after baseball season started, the school nursecame to the house for a visit. She asked if Calen was playingbaseball. I told her he was and explained why. The district'sposition was that if he felt well enough to play baseball, then surelyhe was well enough to return to school. The nurse told me that thedistrict did not feel it was necessary to serve Calen anymore. "Ohboy," I thought, "this is where push meets shove." I leaned over thetable toward her and said, "The decision to serve, or not to serveCalen's needs is not mine, nor yours, nor the district's to make. Itis his doctor's decision.

If his doctor determines that Calen needs home schooling, then myhusband and I are prepared to take any measures necessary, includinglegal action, to ensure that our son's academic needs will be met."

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

With Dr. Peterson's recommendations, we set up a program ofpart-time school and part-time home instruction provided by thedistrict in order to meet Calen's academic and social needs for theschool year 1992-93. He attended school from 12:30 to 3:00 pm dailywhen he could, and worked with a home teacher three mornings a week.Things were by no means normal. He still missed over half of theschool 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. Hisstrength and stamina had improved and he had been symptom-free forseveral months _ no headaches or stomachaches, fevers, sore throats orparalyzing fatigue. He was anxious to get back to his friends and anormal school experience.

Dr. Peterson gave him the green light to return to his adolescentworld, but with a few words of caution for us all _ "He needs to beallowed to do, but not to overdo." As parents, we were faced with adelicate task: to encourage him to do what he could while watching tosee that he didn't overextend to the point of failure. He needed to beable to think like a healthy kid again, trying to do whatever seemedgood and reasonable, not like a chronically ill kid, whose limitsrestricted his freedom to grow. Too much worry on our part wouldinterfere with his critical task of building self-esteem and finding acomfortable place among his peers.

We knew he'd have some formidable obstacles to overcome. Havinglost the better part of three years of learning, he would be trying tocatch up while simultaneously trying to stay up with the demands ofschool. He also had to deal with the cognitive dysfunction thataccompanies CFIDS _ problems with memory, concentration, processingskills, word and thought retrieval and basic math calculations that canlinger long after the physical signs of the disease have passed.

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

... And Falling Back: Home Schooling and the School District, 1993

By October, it was clear that he could not handle a normal schoolschedule. He had already missed 22 of the first 30 days withheadaches, stomachaches and a virus he caught the second week ofschool. We reapplied to the school district for home instruction.Once again, we took him out of his private school and enrolled him inthe public school system. Our request, which included Dr. Peterson'sorder for home instruction and his letter explaining Calen's medicaldisability, was denied.

I learned of the denial when I called the secretary a week or solater to ask why no one had phoned or written to start home schooling.She said Calen was ineligible because he had used the home instructionprogram the year before. Home instruction, she explained, is intendedonly for short-term use. I asked her what program was available forthe kids who are chronically ill, where neither death nor a return togood 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 Iasked the secretary to give him a message. "Listen carefully," I said,"for this is important. Tell the assistant superintendent that Calenis entitled to an education and that the district is mandated byfederal law to provide it. I know the federal law. It is Public Law94-142, the Education of All Handicapped Children Act of 1975. Thesection that applies to Calen is 504, 'Otherwise Health Impaired.' Ihave a copy of it before me. My husband and I are prepared to takelegal action, if necessary, to ensure that Calen's academic needs aremet." I spoke slowly, as if I were giving critical instructions to oneof my kids.

The assistant superintendent returned my call that afternoon. Tomy amazement, he held to the argument that Calen had used the programthe year before and that it was not intended for an indefinite periodof time. "So what program do you have for him?" I asked. Herecommended that we apply for a transfer to another district in thecounty that had a program he was sure would meet Calen's needs. Wefilled out the necessary paperwork and the interdistrict transferprocess 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 programthat would fit his needs. Even if they did have an appropriateprogram, the second district was not sure it wanted to spend its moneyon our district's educational problems.

I called the legal and special education departments at theCalifornia State Department of Education to find out what Calen'srights were. I was told that he was entitled to receive educationalservices at home if his medical problems prevent him from functioningnormally in a regular academic environment. I was also told that ifthe district drags its feet in responding to our request for theirservices, I should ask for a due process hearing, to be conducted byindependent legal counsel, at the district's expense.

Empowered with this information, I called the assistantsuperintendent again and told him that the other district did not haveanything better to offer Calen than our district did. In addition,they were not willing to take on the responsibility of providingservices for Calen when our district could offer him the same homeschooling program. I took a breath, exhaled slowly, and said, "Youshould be advised that I have been in touch with the legal departmentat the state Department of Education and I know what Calen's rightsare.

He is protected by PL 94-142, Section 504. I have the law, thesection and the interpretation in my hands." There was a short pauseand 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 hadas a result of CFIDS did, indeed, make him eligible for Section 504services. He agreed to restart the program Calen used the previousyear 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 anddevelopmental 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 thedisease or love someone who does. Goals and dreams change, as do theways in which we see others and ourselves. Activities must becarefully planned, tentatively and always subject to change. Friendsand families find themselves assuming more responsibilities inrelationships and in the home, and sooner or later children in thefamily learn that life is not always fair. We adjust, ill and wellalike, by making changes, by finding new or different ways of doingthings.

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

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

He is learning to recognize and respect his physical limits, eventhough it is painfully difficult for him as an adolescent to doanything 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 shouldrun the distance, so he ran and spent the next two weeks at home inbed. It was a valuable experience, for it taught him that he isultimately responsible for deciding what he can and cannot do. He isgetting better at telling teachers and friends when he needs to stop ortake a break, and is finding that he can do many of the things hisfriends can do, as long as he remembers where to draw the line.

KINDS 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 theillness, his academic future is at risk, even if he makes it past thephysical disease of CFIDS.

CFIDS kids have great difficulty finishing school. Many settlefor a General Education Diploma (GED) instead of achieving a highschool diploma. Others completely drop out before graduating becausethe cognitive, social and physical energy requirements of high schooland adolescence are too much. What a waste, not only for the kids andtheir families, but for society, which will lose their productivity ifsomething is not done to help them. This disease is hell for anyone,but it is particularly devastating for kids who must develop the socialand psychological skills during adolescence that will serve themthrough their adult lives. If the disease catches them before theyhave the chance to learn these skills, it may interfere with theirability to develop them at all.

WHAT DO THESE KIDS NEED?

They need to be taken seriously by parents, doctors, teachers andothers, and not to be written off as manipulative, lazy, emotionallydisturbed or school phobic. The danger of suicide is great foryoungsters whose complaints of illness and academic breakdown have beeninvalidated and brushed off for years by the very adults who mostinfluence their lives. When told repeatedly that there is nothingphysically wrong with them, that their problems are the result oflaziness or a bad attitude and that they do not, and probably neverwill, amount to anything, sooner or later they come to believe it. Howmany adolescent suicides may actually be undiagnosed CFIDS kids whohave lost the battle to be heard, acknowledged and helped?

They need to be listened to. It is hard to ignore the advice ofeducators and pediatricians who tell us that their complaints ofmalaise and dysfunction are signs of manipulative or antisocialbehavior, 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 foradvice. But when our children have CFIDS, we must learn to listen toand accept what they tell us about what they can and cannot do.Acknowledging and validating their complaints relieves the pressurethey feel to prove that they are really sick. The energy they havewasted trying to justify how they feel can now be used for the moreimportant job of healing. They need advocates, people like you and mewho are willing to fight with them and for them to educate andenlighten the community to the physical and cognitive challenges theyface. It is their bad luck to be kids with this disease. Society doesnot listen very well to their voices, nor does it respond very well totheir 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 andaccommodated, that doctors and other health professionals learn aboutCFIDS and the methods that already exist by which it can be diagnosedand treated, and that health policy-makers make CFIDS a national healthpriority and direct funding for research into its cause, treatment andcure, we can help many kids like Calen get past their time of illnessand back to their friends, their schools and their crucial time ofgrowth 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 behelpful for parents and others who are working on the CFIDS student'sbehalf:

Approach the district with an attitude of cooperation, but withthe knowledge that your CFIDS student is entitled to special servicesunder Section 504 of PL 94-142. Don't be afraid to get tough if youneed to. Remember that the student has the benefit of the doubt ifthere are any problems. He/she is eligible for a number of differentservices. Some, the district may not know about, and some it may hopeyou won't find out about. Services include access to counseling,physical therapy, social work services, transportation (if needed) anda variety of mechanical aids such as calculators, computers and taperecorders so that disabled students can function more easily and on amore equal basis with non-disabled children at their grade level.Ignorance of what is available, lack of time and lack of money may bethe district's concerns, but your child's academic and emotional growthand development are yours. Keep in mind that you are negotiating yourchild's future.

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

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

Contact the National Information Center for Children and Youthwith Disabilities (NICHCY), P.O. Box 1492, Washington DC 20013,800/999-5599. NICHCY is an organization that provides resources forspecific questions (CFS is in its database), referrals to otherorganizations, packets and lists of publications. I received a freepacket which included a copy of the Americans with Disabilities Act of1973, with revisions since then, including PL 94-142, and anexplanation of Section 504, the part that applies to CFIDS kids. Ithas been a valuable resource.

Protection and Advocacy, Inc. is another excellent resource. Itis a non-profit federal agency that provides a variety of free legalservices for the disabled, including Section 504 children. Theorganization has regional offices _ check the business white pages inthe phone book for the telephone number or the listings under theDepartment of Health and Human Services in the Federal Governmentsection. Finally, do not forget that your state Department ofEducation has important resources and information. When I told theassistant superintendent that I had been in touch with the legal branchof the state Department of Education about Calen's rights, the changein his approach to the problem was remarkable.

Above all, believe your child. Be prepared. Be empowered by theinformation and support services that are available to you. Bediplomatic, but firm in your dealings with representatives who may beignorant or stubborn in their views. Beware of experts who warn ofbehavior problems. Be willing to share what you learn about workingthe system with others who follow.

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


About the Author: Karen Lang is the editor of the Sacramento, CA CFIDS Support Group newsletter. She participated in the May '93 meeting with federal legislators and FDA representatives (as reported in the June '93 Chronicle) and is a member of the Association's Public Policy Advisory Committee.