Kids with MS
Posted: Fri Dec 29, 2006 7:34 am
Two articles about kids with MS. As grim as this is, the positive is that it might be easier to identify triggers for the disease in children. The programme for the UK MS Society's research conference in June 2007 is attached and includes a presentation by Associate Professor Brenda Banwell from Toronto on "Environmental and Immunological aspects of paediatric MS - a window into the earliest events in MS pathogenesis".
http://www.mssociety.org.uk/document.rm?id=2009
Ian
For kids, MS itself just half the battle 29 December 2006
Correctly diagnosing disease can be tricky; sometimes, so is talking about it.
Tiffany Jones stood before her classmates at Hillcrest High School, trembling. It was time to present her anatomy class project--and reveal a secret she'd closely guarded.
Eyes downcast, Jones described a high school senior with multiple sclerosis, a degenerative illness of the nervous system. "Numbness, tingling, poor balance, muscle weakness, bladder [problems] and forgetfulness" are among the girl's symptoms, she explained.
The 18-year-old "tries to stay positive because she has a lot of support from her family, friends and her church," Jones continued, her voice cracking. "[But] it makes her feel less of a person at times because she is living with a disease that she can't do anything about. Her name is--Tiffany Jones."
Jones paused, trying to keep her composure, as her classmates stared, some with their mouths open.
"There have been many nights that I sit up and cry just thinking about how I will live the rest of my life with this disease. I often wonder if I will be able to do the things I want in life," she continued, as the paper in her hand fluttered. "Will people think of me as a different person when they find out I have a disease or will they think of me as just being Tiffany?"
Until recently, multiple sclerosis was considered an adult illness. The medical community largely overlooked children with MS symptoms--a type of neglect unfortunately common for chronically ill children, especially those with relatively uncommon nervous system disorders, medical experts say.
But now, youngsters with MS are getting more attention as researchers search for the origins of this incurable illness, which strips nerves of their protective myelin coating and interferes with the brain's functioning, leading to the kind of problems Jones described to her classmates.
Diagnosis usually after puberty
As many as 10,000 U.S. children and teenagers--some as young as 5--have MS; another 10,000 to 15,000 have symptoms but can't be diagnosed with certainty, according to the National Multiple Sclerosis Society.
The youngest known patient with MS was 18 months old, but more commonly the disease surfaces after puberty when teenagers' bodies are changing and flooded by hormones.
Resources are scarce for these patients. With few exceptions, support groups are designed for adult MS patients. There are no medical guidelines for treating MS in children. None of the drugs used for adult MS patients has been tested extensively in school-age youngsters or teens. And it's still common for paediatricians and family doctors to assume children can't get the disease, making misdiagnoses routine.
"Neurologists know about this disease, but they're reluctant to treat children and adolescents because there are so many issues--dealing with school, with development, with behavioral issues, with the family," said Dr. Lauren Krupp, a neurologist who directs the National Pediatric MS Center at Stony Brook University Hospital in New York.
"And paediatricians know how to treat kids, but they don't understand MS or know anything about the medications."
Adding to the confusion, MS in youngsters is quite different than the disease in adults--so much so that researchers aren't certain if it's the same illness or a closely related variant.
For instance, in adults MS overwhelmingly afflicts white people, but at younger ages far more African-Americans, Asians and Hispanics are affected, according to Dr. John Richert, executive vice president of research and clinical programs at the National MS Society.
The disease also appears to progress more slowly in children, and "when we look at imaging studies of the brain, they look different in children with MS than adults," said Dr. Nancy Kuntz, a paediatric MS specialist at the Mayo Clinic in Rochester, Minn.
That may be because young people's brains are still developing, suggested Dr. Tanuja Chitnis, director of a paediatric MS center at Boston's Massachusetts General Hospital, noting that young people with MS appear to have more problems with processing language and visual/spatial perception.
Perhaps most puzzling is the relationship between MS and a separate condition known as acute disseminated encephalomyelitis, which afflicts children more often than it does adults. ADEM, as it's known, is an abnormal immune system response to a viral illness that typically lasts a few days or weeks but sometimes can recur.
"Often, it's hard to sort through what constitutes a bout of ADEM and what is an initial episode of multiple sclerosis in a child," said Dr. Joy Derwenskus, an assistant professor of neurology at Northwestern University's Feinberg School of Medicine. The distinction is important because treatments for the two conditions differ.
Understanding the link between viruses and MS is one of the main goals of a new network of six paediatric MS centers established by the National MS Society late last year.
Improving clinical care and support services for young people is another objective of the centers, whose Midwest location is the Mayo Clinic in Rochester, Minn.
"The biggest single problem these kids have is they don't know anyone else like them," said Maria Milazzo, a paediatric nurse practitioner at the Stony Brook MS center.
Learning to adjust
Nicole Caron was so scared after being diagnosed with MS last year at 15 that she didn't tell any of her friends what was wrong--or even admit the truth of her illness to herself. A basketball and soccer player, Nicole first felt numbness in her fingers, then extreme fatigue. Within a few months, she began getting excruciating headaches, blurred vision and pain behind her left eye.
The final diagnosis came after a brain scan and a spinal tap, but relief at knowing what was wrong was quickly followed by fear and denial.
"I didn't want to believe anything was wrong," said Nicole, who lives in North Attleboro, Mass., and is being treated at Massachusetts General Hospital. "I thought if I kept it to myself it would be all right. And I knew everyone at school would gossip, and I didn't to be the center of attention."
But the more Nicole concealed her worries, the lonelier she became. "I felt like a bad person because I wasn't telling anyone the truth," she said. After a month, she began letting friends know what was going on, but none of them had ever heard of MS.
Twice a week, Nicole left school for doctors' appointments; once, a teacher commented in class on her excused absences. "I started to cry, I was so upset," said Nicole, who gives herself daily injections of the drug Copaxone to help stall the progress of MS. Several weeks later, she disclosed her illness to the teacher.
For her mother, Judy Caron, the hardest part is accepting the unpredictability of MS, with symptoms that can come and go without warning.
"As a parent, you always try to fix everything for your children, but with this disease you have absolutely no control," she said.
In south suburban Country Club Hills, Carol Jones--Tiffany's mom--repeats a similar lament: "What's so scary about MS is, you can't tell what the future holds. You just don't know day to day what tomorrow is going to be."
Coping, with help
Tiffany's symptoms first surfaced in July 2005; after multiple visits with doctors and medical tests, a definitive diagnosis came a year later. In between, this slim dancer and pompom squad member with big, dark eyes couldn't understand why her arms and legs were going numb or why she suddenly would stumble or drop a cup.
"It makes you feel so uncertain and so afraid," said the soft-spoken girl, who started thrice weekly injections of the drug Rebif in November.
For support, Tiffany and her mom turned to a group of adults with MS who meet monthly in nearby Crete.
"It's really helpful to know what other people go through," but many of the group members are in wheelchairs and "I was thinking one day that could be me," she said.
At school, Tiffany told a few close friends about her illness early this fall but kept it concealed from other classmates and her teachers. She felt conflicted. She wanted people at school to know how her life had changed, but she didn't want to tell them.
Then, an assignment for her anatomy class became an inspiration to come forward. The teacher, by coincidence, had asked her to write a report on multiple sclerosis.
Standing before her classmates, Tiffany spoke of her fear, her faith and her confusion about what it means to stand on the edge of adulthood, trying to accept a lifelong illness.
"At times, I still feel like MS is taking over my life. I'm still struggling with that," she said. But "I have to tell myself to stop wondering what will become of me. I know that no matter what, I won't give up."
Source: Chicago Tribune Copyright © 2006, Chicago Tribune
Paediatric MS 29 December 2006 - Rare and often misdiagnosed, paediatric multiple sclerosis may be on the rise.
It just doesn’t seem fair, if words like “fair” may ever be used when speaking of illnesses. Multiple sclerosis — a disease in which the body’s immune system attacks its own myelin, a fatty tissue meant to protect the central nervous system — affects twice as many females as males. Symptoms typically manifest in adults between the ages of 20 and 45.
But Bryan Yglesias was 10 when, in August 2005, he was diagnosed with MS. And he was just 5 when he first complained of having “tingly hands.”
“Nothing fits,” his mother said. “The chances of a kid younger than 16 being diagnosed are between 2 percent and 5 percent, and MS is rare in Hispanics.”
Bryan lives in Hesperia with his father, Nick; his mother, Kathy; and his brother, Justin, 15.
Nick works for Hesperia High School’s athletic department; Kathy works in food service for the Hesperia Unified School District. Justin is a sophomore at Hesperia High School.
In February 2005 Bryan was diagnosed (misdiagnosed, Kathy thinks) with Bell’s palsy, a temporary facial paralysis caused by damage to one of the two facial nerves.
Put on steroids, he gained 33 pounds in just six months, going from 107 to 140.
Before becoming sick, Bryan, an avid soccer player, had played all three midfield positions. Now it was hard for him to balance.
“He walked as if he were drunk,” Kathy said. “At first I thought it was because he’d suddenly gotten so much bigger.
“But he also felt weak and couldn’t sign his name.”
Bryan recalled “feeling heavy and tingly on my right side.”
After two spinal taps ruled out Lyme disease, West Nile virus and meningitis, three MRIs of his brain revealed lesions where myelin had been destroyed.
Bryan would be hospitalised three times at Loma Linda University Children’s Hospital: in August 2005 and again in January and February of this year.
In March, Bryan’s parents began taking him to the University of California, San Francisco’s Regional brand-new Paediatric Multiple Sclerosis Center.
There he is seen by a doctor, a nurse, two neurologists, a paediatric psychologist and a school psychologist.
The school psychologist, Mary Crittenden, assessed Bryan’s mood, memory and cognitive functions to establish a baseline for charting the progress of his disease.
“Our insurance doesn’t cover his treatment, so UCSF sees us for free,” a grateful Nick said.
Once a week, Bryan is given an injection of Avonex, a medicine designed to keep the body from attacking itself.
For fear of side effects, he started the Avonex on May 25, the last day of school.
“I get the shot at 5 p.m. and by 7 p.m. the side effects — tired, achy, chills — kick in,” Bryan said. “But they’re gone by the next morning.”
If it wasn’t covered by the family’s HMO, Bryan’s medication would cost them $1,600 a month for four injections.
Of the four forms of MS — relapsing-remitting, primary-progressive, secondary-progressive and progressive-relapsing — Bryan has relapsing-remitting. The most common form, it is characterised by flare-ups of new symptoms or exacerbation of existing symptoms, followed by periods of partial or complete recovery.
“When he has a relapse,” Nick said, “Bryan goes to physical therapy: lifting weights, doing pushups, working with a balance ball, two or three times a week for two months.”
“We let him recover but don’t let him get lazy,” said Kathy.
Nick agreed: “We can’t let the disease win.”
UCSF’s is the only paediatric MS center west of the Rocky Mountains supported by a grant from the National Multiple Sclerosis Society (NMSS). The other five campuses are in Rochester, Minn.; Buffalo, N.Y.; Stony Brook, N.Y.; Boston, Mass.; and Birmingham, Ala.
But the Yglesiases have heard that a satellite may be started at the University of California, Los Angeles — much closer to home.
“Now that we’re seeing all these kids being diagnosed,” said Cindy Langwell, field programs manager for the Inland Empire Field Office of the NMSS’ Southern California Chapter, “it’s very important that the program come down here.”
Once a month, the NMSS hosts a chat line for teenagers with multiple sclerosis.
“But I want to meet other kids with MS,” said Bryan, who admits to feeling “different.”
He’s also noticed how often his father asks if he’s doing all right.
“That is love, Bryan,” Kathy reminded him. “Love and stress.”
At Maple School, where Bryan is in the sixth grade, only his closest friends know that he is sick.
“He doesn’t want the label ‘I have a disease,’ ” his mother said. “But I think other kids should know — just in case something happens.”
Word may get out soon enough.
Last year the Yglesiases took part in NMSS’ fundraising walk. And on April 14 Bryan plans to walk again, this time with his soccer team, the Apple Valley Storm. His favourite subject is math, but Bryan hasn’t yet chosen a career. “When he was little,” Kathy said, “he wanted to be a scientist and ‘cure something.’ Now he says no. “But I say, ‘Cure MS!’”
Source: Daily Press Copyright © 2006 Daily Press
http://www.mssociety.org.uk/document.rm?id=2009
Ian
For kids, MS itself just half the battle 29 December 2006
Correctly diagnosing disease can be tricky; sometimes, so is talking about it.
Tiffany Jones stood before her classmates at Hillcrest High School, trembling. It was time to present her anatomy class project--and reveal a secret she'd closely guarded.
Eyes downcast, Jones described a high school senior with multiple sclerosis, a degenerative illness of the nervous system. "Numbness, tingling, poor balance, muscle weakness, bladder [problems] and forgetfulness" are among the girl's symptoms, she explained.
The 18-year-old "tries to stay positive because she has a lot of support from her family, friends and her church," Jones continued, her voice cracking. "[But] it makes her feel less of a person at times because she is living with a disease that she can't do anything about. Her name is--Tiffany Jones."
Jones paused, trying to keep her composure, as her classmates stared, some with their mouths open.
"There have been many nights that I sit up and cry just thinking about how I will live the rest of my life with this disease. I often wonder if I will be able to do the things I want in life," she continued, as the paper in her hand fluttered. "Will people think of me as a different person when they find out I have a disease or will they think of me as just being Tiffany?"
Until recently, multiple sclerosis was considered an adult illness. The medical community largely overlooked children with MS symptoms--a type of neglect unfortunately common for chronically ill children, especially those with relatively uncommon nervous system disorders, medical experts say.
But now, youngsters with MS are getting more attention as researchers search for the origins of this incurable illness, which strips nerves of their protective myelin coating and interferes with the brain's functioning, leading to the kind of problems Jones described to her classmates.
Diagnosis usually after puberty
As many as 10,000 U.S. children and teenagers--some as young as 5--have MS; another 10,000 to 15,000 have symptoms but can't be diagnosed with certainty, according to the National Multiple Sclerosis Society.
The youngest known patient with MS was 18 months old, but more commonly the disease surfaces after puberty when teenagers' bodies are changing and flooded by hormones.
Resources are scarce for these patients. With few exceptions, support groups are designed for adult MS patients. There are no medical guidelines for treating MS in children. None of the drugs used for adult MS patients has been tested extensively in school-age youngsters or teens. And it's still common for paediatricians and family doctors to assume children can't get the disease, making misdiagnoses routine.
"Neurologists know about this disease, but they're reluctant to treat children and adolescents because there are so many issues--dealing with school, with development, with behavioral issues, with the family," said Dr. Lauren Krupp, a neurologist who directs the National Pediatric MS Center at Stony Brook University Hospital in New York.
"And paediatricians know how to treat kids, but they don't understand MS or know anything about the medications."
Adding to the confusion, MS in youngsters is quite different than the disease in adults--so much so that researchers aren't certain if it's the same illness or a closely related variant.
For instance, in adults MS overwhelmingly afflicts white people, but at younger ages far more African-Americans, Asians and Hispanics are affected, according to Dr. John Richert, executive vice president of research and clinical programs at the National MS Society.
The disease also appears to progress more slowly in children, and "when we look at imaging studies of the brain, they look different in children with MS than adults," said Dr. Nancy Kuntz, a paediatric MS specialist at the Mayo Clinic in Rochester, Minn.
That may be because young people's brains are still developing, suggested Dr. Tanuja Chitnis, director of a paediatric MS center at Boston's Massachusetts General Hospital, noting that young people with MS appear to have more problems with processing language and visual/spatial perception.
Perhaps most puzzling is the relationship between MS and a separate condition known as acute disseminated encephalomyelitis, which afflicts children more often than it does adults. ADEM, as it's known, is an abnormal immune system response to a viral illness that typically lasts a few days or weeks but sometimes can recur.
"Often, it's hard to sort through what constitutes a bout of ADEM and what is an initial episode of multiple sclerosis in a child," said Dr. Joy Derwenskus, an assistant professor of neurology at Northwestern University's Feinberg School of Medicine. The distinction is important because treatments for the two conditions differ.
Understanding the link between viruses and MS is one of the main goals of a new network of six paediatric MS centers established by the National MS Society late last year.
Improving clinical care and support services for young people is another objective of the centers, whose Midwest location is the Mayo Clinic in Rochester, Minn.
"The biggest single problem these kids have is they don't know anyone else like them," said Maria Milazzo, a paediatric nurse practitioner at the Stony Brook MS center.
Learning to adjust
Nicole Caron was so scared after being diagnosed with MS last year at 15 that she didn't tell any of her friends what was wrong--or even admit the truth of her illness to herself. A basketball and soccer player, Nicole first felt numbness in her fingers, then extreme fatigue. Within a few months, she began getting excruciating headaches, blurred vision and pain behind her left eye.
The final diagnosis came after a brain scan and a spinal tap, but relief at knowing what was wrong was quickly followed by fear and denial.
"I didn't want to believe anything was wrong," said Nicole, who lives in North Attleboro, Mass., and is being treated at Massachusetts General Hospital. "I thought if I kept it to myself it would be all right. And I knew everyone at school would gossip, and I didn't to be the center of attention."
But the more Nicole concealed her worries, the lonelier she became. "I felt like a bad person because I wasn't telling anyone the truth," she said. After a month, she began letting friends know what was going on, but none of them had ever heard of MS.
Twice a week, Nicole left school for doctors' appointments; once, a teacher commented in class on her excused absences. "I started to cry, I was so upset," said Nicole, who gives herself daily injections of the drug Copaxone to help stall the progress of MS. Several weeks later, she disclosed her illness to the teacher.
For her mother, Judy Caron, the hardest part is accepting the unpredictability of MS, with symptoms that can come and go without warning.
"As a parent, you always try to fix everything for your children, but with this disease you have absolutely no control," she said.
In south suburban Country Club Hills, Carol Jones--Tiffany's mom--repeats a similar lament: "What's so scary about MS is, you can't tell what the future holds. You just don't know day to day what tomorrow is going to be."
Coping, with help
Tiffany's symptoms first surfaced in July 2005; after multiple visits with doctors and medical tests, a definitive diagnosis came a year later. In between, this slim dancer and pompom squad member with big, dark eyes couldn't understand why her arms and legs were going numb or why she suddenly would stumble or drop a cup.
"It makes you feel so uncertain and so afraid," said the soft-spoken girl, who started thrice weekly injections of the drug Rebif in November.
For support, Tiffany and her mom turned to a group of adults with MS who meet monthly in nearby Crete.
"It's really helpful to know what other people go through," but many of the group members are in wheelchairs and "I was thinking one day that could be me," she said.
At school, Tiffany told a few close friends about her illness early this fall but kept it concealed from other classmates and her teachers. She felt conflicted. She wanted people at school to know how her life had changed, but she didn't want to tell them.
Then, an assignment for her anatomy class became an inspiration to come forward. The teacher, by coincidence, had asked her to write a report on multiple sclerosis.
Standing before her classmates, Tiffany spoke of her fear, her faith and her confusion about what it means to stand on the edge of adulthood, trying to accept a lifelong illness.
"At times, I still feel like MS is taking over my life. I'm still struggling with that," she said. But "I have to tell myself to stop wondering what will become of me. I know that no matter what, I won't give up."
Source: Chicago Tribune Copyright © 2006, Chicago Tribune
Paediatric MS 29 December 2006 - Rare and often misdiagnosed, paediatric multiple sclerosis may be on the rise.
It just doesn’t seem fair, if words like “fair” may ever be used when speaking of illnesses. Multiple sclerosis — a disease in which the body’s immune system attacks its own myelin, a fatty tissue meant to protect the central nervous system — affects twice as many females as males. Symptoms typically manifest in adults between the ages of 20 and 45.
But Bryan Yglesias was 10 when, in August 2005, he was diagnosed with MS. And he was just 5 when he first complained of having “tingly hands.”
“Nothing fits,” his mother said. “The chances of a kid younger than 16 being diagnosed are between 2 percent and 5 percent, and MS is rare in Hispanics.”
Bryan lives in Hesperia with his father, Nick; his mother, Kathy; and his brother, Justin, 15.
Nick works for Hesperia High School’s athletic department; Kathy works in food service for the Hesperia Unified School District. Justin is a sophomore at Hesperia High School.
In February 2005 Bryan was diagnosed (misdiagnosed, Kathy thinks) with Bell’s palsy, a temporary facial paralysis caused by damage to one of the two facial nerves.
Put on steroids, he gained 33 pounds in just six months, going from 107 to 140.
Before becoming sick, Bryan, an avid soccer player, had played all three midfield positions. Now it was hard for him to balance.
“He walked as if he were drunk,” Kathy said. “At first I thought it was because he’d suddenly gotten so much bigger.
“But he also felt weak and couldn’t sign his name.”
Bryan recalled “feeling heavy and tingly on my right side.”
After two spinal taps ruled out Lyme disease, West Nile virus and meningitis, three MRIs of his brain revealed lesions where myelin had been destroyed.
Bryan would be hospitalised three times at Loma Linda University Children’s Hospital: in August 2005 and again in January and February of this year.
In March, Bryan’s parents began taking him to the University of California, San Francisco’s Regional brand-new Paediatric Multiple Sclerosis Center.
There he is seen by a doctor, a nurse, two neurologists, a paediatric psychologist and a school psychologist.
The school psychologist, Mary Crittenden, assessed Bryan’s mood, memory and cognitive functions to establish a baseline for charting the progress of his disease.
“Our insurance doesn’t cover his treatment, so UCSF sees us for free,” a grateful Nick said.
Once a week, Bryan is given an injection of Avonex, a medicine designed to keep the body from attacking itself.
For fear of side effects, he started the Avonex on May 25, the last day of school.
“I get the shot at 5 p.m. and by 7 p.m. the side effects — tired, achy, chills — kick in,” Bryan said. “But they’re gone by the next morning.”
If it wasn’t covered by the family’s HMO, Bryan’s medication would cost them $1,600 a month for four injections.
Of the four forms of MS — relapsing-remitting, primary-progressive, secondary-progressive and progressive-relapsing — Bryan has relapsing-remitting. The most common form, it is characterised by flare-ups of new symptoms or exacerbation of existing symptoms, followed by periods of partial or complete recovery.
“When he has a relapse,” Nick said, “Bryan goes to physical therapy: lifting weights, doing pushups, working with a balance ball, two or three times a week for two months.”
“We let him recover but don’t let him get lazy,” said Kathy.
Nick agreed: “We can’t let the disease win.”
UCSF’s is the only paediatric MS center west of the Rocky Mountains supported by a grant from the National Multiple Sclerosis Society (NMSS). The other five campuses are in Rochester, Minn.; Buffalo, N.Y.; Stony Brook, N.Y.; Boston, Mass.; and Birmingham, Ala.
But the Yglesiases have heard that a satellite may be started at the University of California, Los Angeles — much closer to home.
“Now that we’re seeing all these kids being diagnosed,” said Cindy Langwell, field programs manager for the Inland Empire Field Office of the NMSS’ Southern California Chapter, “it’s very important that the program come down here.”
Once a month, the NMSS hosts a chat line for teenagers with multiple sclerosis.
“But I want to meet other kids with MS,” said Bryan, who admits to feeling “different.”
He’s also noticed how often his father asks if he’s doing all right.
“That is love, Bryan,” Kathy reminded him. “Love and stress.”
At Maple School, where Bryan is in the sixth grade, only his closest friends know that he is sick.
“He doesn’t want the label ‘I have a disease,’ ” his mother said. “But I think other kids should know — just in case something happens.”
Word may get out soon enough.
Last year the Yglesiases took part in NMSS’ fundraising walk. And on April 14 Bryan plans to walk again, this time with his soccer team, the Apple Valley Storm. His favourite subject is math, but Bryan hasn’t yet chosen a career. “When he was little,” Kathy said, “he wanted to be a scientist and ‘cure something.’ Now he says no. “But I say, ‘Cure MS!’”
Source: Daily Press Copyright © 2006 Daily Press