TESTIMONY PRESENTED BEFORE

U.S. DEPT. OF HEALTH AND HUMAN SERVICES

CHRONIC FATIGUE SYNDROME COORDINATING

COMMITTEE

APRIL 29, 1998

My name is Sara Bass and I am President of The Connecticut CFIDS Association, Inc. I am standing before you today, as I did 2 years ago, to speak on the subject of pediatric CFIDS since, from all that I can tell, the Department of Health and Human Services has done next to nothing in the past 2 years to study, address or help conquer pediatric CFIDS, or to promote physician, school or public education and awareness of this problem or to even acknowledge that it exists.

Most doctors in our state, including the vast majority of pediatricians, still do not know how kids (or adults for that matter) present with this illness, or how it is diagnosed or how it is treated or that it can have a gradual or acute onset. *  Many doctors still believe CFIDS doesn’t exist or that it’s not a physical illness or that its not a serious problem or disabling.  To drive home how serious and disabling it can be and how the lack of education surrounding it has devastated one teen’s life, I want to introduce you to Stephen Paganetti, Jr.

Prior to April, 1996, Stephen, a 16 year old living with his mom, dad, and younger brother in Durham, Connecticut, seemed to have everything going for him.  Although his family was on a fixed income since his dad had hurt his back and could not work, life was still very good.  A brilliant young man, Stephen was attending the prestigious Kingswood-Oxford School on full scholarship with his dream to become a doctor.  A sophomore high honors student, he had already completed many of the credits needed for graduation, played two sports, was a technician for the school’s theatre, played the saxophone and had numerous friends with whom he spent a great deal of time.

In April, 1996, however, his life took a 360 degree turn and, since then, it has been a continuous nightmare.  In April, he developed a strange, extensive rash and other problems including fatigue, body aches, congestion, painful lymph nodes, sore throat, headaches, dizziness, joint pain and other problems, including sensitivity to light.  His pediatric practice diagnosed his problems as “some sort of viral infection” and tried various antibiotics, constantly changing prescriptions.  When nothing seemed to help, he was referred to a pediatric infectious disease (ID) specialist.  By this time, the rash was gone but his fatigue and other symptoms were worse, he had lost 15 lbs., had severe stomach pain, had diarrhea 8-10 times a day and hand tremors had started.  The ID viewed Stephen with skepticism.  Convinced that most of Stephen’s problems were psychological, the ID did a few blood tests and referred Stephen to a psychiatrist for a psychological exam.  Despite the psychiatrists report that Stephen was perfectly sound with a physical illness only, the ID told Stephen that he just had a head cold with sinusitis and the rest of his illness was psychological (he even told Stephen he could stop his hand tremors is he really wanted to, that he just didn’t want to go to school, etc.).  His doctor’s orders were, and I quote, “Get your ass back to school.  There is nothing wrong with you.  It’s all in your head.”  Stephen was discharged from the hospital and a week later, his parents in desperation, sought the help of a gastroenterologist (GE).  The GE put Stephen back in the same hospital, helped to hydrate him with IVs, did testing that found the good bacteria in his stomach had been wiped out by his previous meds and put him on a nose feeding tube 16 hr. day.  The GE said he thought Stephen might have Chronic Fatigue Syndrome (aka CFIDS) but CFS was out of his area.  Another psychological exam was ordered and again Stephen passed with flying colors.  He was discharged a week later with all but his stomach symptoms ignored.  He could barely walk or function well and couldn’t finish his sophomore year of school.  Over the summer, his symptoms got worse, including the hand tremors.  He felt awful and always exhausted.  The only social activity he attended the whole summer was his grandmother’s birthday in the neighboring town.

In September, 1996, the beginning of his junior year, he was determined to prove to that ID that his symptoms weren’t psychological.  He insisted to his parents that he had to return to school.  His school willing allowed Stephen to come in an hour late each day and he pushed through the first semester lugging a backpack for his books and another pack for the feeding supplement for his nose tube.  As the weeks and months passed by, he looked and felt worse and his hands and feet were starting to turn purple red and were often cold to the touch.  By January, 1997, his GE thought he might have a blood pressure disorder called neurally mediated hypotension (NMH) that has been linked to CFIDS and suggested a tilt table test for NMH.  Stephen tested classically positive, was put on NMH treatment and forced himself to go back to school.  The NMH didn’t explain all of Stephen’s symptoms and he was still determined to prove that ID wrong.

On February 23, 1997, Stephen finally collapsed at school, went into shock, his body turned blue, violent seizure like tremors started and he was rushed by ambulance to the hospital.  Since that day, 14 months ago, Stephen has been totally bedridden, unable to walk, or situp or even speak, except in a horse whisper and with great effort.  Since that day, Stephen has spent 5 months in the hospital (he was finally diagnosed with CFIDS), another 4 months in an acute care facility, endured numerous additional tests, 4 more psychological exams and ambulance rides to specialists in New York.  The additional testing has found that in addition to NMH which has been linked to CFIDS, he also has a mitochondrial disorder and low circulating blood volume and other problems linked by research to CFIDS.  A stomach feeding tube  has long since replaced the nose tube and, for the past 5 months he has been cared for at home – an invalid confined by his illness to a motorized bed.  The following overhead shows Stephen today.  His mom has to bathe and help dress him.  He has to be raised by a Hoyer lift to change his sheets.  Tremors are evident at the slightest movement and any movement brings agony and discomfort.  He is in constant, excruciating pain and methadone 4 time/day doesn’t take it away.  His care is now under a family practitioner – the only doctor Stephen’s dad could find to take his case and make house calls.  She’s not a expert in anything Stephen has but stays in touch with experts, including Dr. David Bell, who has examined Stephen, confirmed his diagnosis and taken his case to the recent international CFS medical conference in Australia.

Stephen’s family is now emotionally and financially drained because of his illness and there are constant battles with the insurance company over services long ago ordered and still delayed, including in-home counseling, other therapy and help for his in home care.  His mom and dad’s biggest worry, next to trying to help Stephen get better, is how his care will get paid for as he gets older and has to go off their insurance.  Stephen recently turned 18 and has been approved for social security disability benefits but the monthly check won’t pay for a fraction of his medical costs.  With Stephen’s Dad unable to work due to a back injury and his mom unable to work because she has to care for Steve, where will the money come from?

Stephen doesn’t understand why he is so sick.  It scary to have been diagnosed with so many things – and hurt the way he does – with no effective treatment or a cure in sight.  He also doesn’t understand why he had to take 6 psychological exams to prove that he wasn’t faking or making up his symptoms.  He no longer wants to be a doctor because of the 20-25 doctors he has seen – too many have ignored his symptoms, been disrespectful, and called him a liar for being honest and truthful with them.  He also feels forgotten.  In his words, like “a lost soul, a memory placed somewhere in the back of most people’s minds where many other things that are forgotten are placed.”  The get well cards he was smothered with when he first got sick have stopped coming and calls and visits from his friends are few.  Steve has just learned that his classmates are taking up a collection to pay for an ambulance so he can attend his school graduation in May.  They have not forgotten Stephen, but their lives are already filled with plans for the summer and college next fall.  Stephen can only wait in his bed and pray for a research breakthrough to end his nightmare.

I hope you will remember Stephen.  I don’t think a person in this room doesn’t think his total and severe disability couldn’t have been prevented by early diagnosis, compassionate care and orders to rest instead of getting his ass back to school.  There are other totally disabled kids like Stephen and there will be many more if the medical ignorance surrounding this illness is not conquered and its cause, effective treatments and a cure are not found and found soon.

Anyone wishing to remember Stephen with a card or letter is encouraged to do so to: Stephen Paganetti, Jr., P.O. Box 145, Durham, CT  06422-0145.

 

-- Sara Bass
The Connecticut CFIDS & FM Association, Inc.
P.O. Box 3010, Milford, CT 06460
1-800-952-2037