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For decades,
multiple sclerosis was considered an adult disease that didn’t show
up until a person—usually a woman—was somewhere between 20 and
40 years old. Now it turns out that five percent of the 400,000 Americans
who get diagnosed with this disabling neurological condition are children.
MS attacks the central nervous system, including the brain, spinal cord
and optic nerves, and can cause a range of symptoms, including fatigue,
tingling sensations, difficulty walking and vision and memory problems.
Usually, these episodes come and go, but worsen over time. In children,
MS can have profound effects on cognitive development, performance in
school and relationships with friends and family.
Recently, ABILITY Magazine editor-in-chief Chet Cooper visited the West
Coast’s only pediatric MS center, housed at the University of California,
San Francisco, to talk with founder Dr. Emmanuelle Waubant.
Chet Cooper: How did you come to establish the pediatric MS clinic?
Emmanuelle Waubant: I’m an adult neurologist by training, and my
research has been mainly in that and in immunology. I also study the link
between them. MS is the main disease shared by both, so that’s how
I got interested in it. I’ve been involved in pediatric MS for more
than 10 years.
Since MS is not common in children, in the past, parents were lucky when
their child got an accurate diagnosis right away. When they did not, they
just saw one pediatrician after another. At the time, there were drugs
that were approved for adults with MS, but not yet for children. Naturally
we had to operate in that gray area for a long time, and when we told
parents that we wanted to use certain adult drugs to prevent the disease
from worsening in their children, they worried. That was when I started
to connect with other pediatric neurologists throughout the country who
were treating children with MS. We pooled our data on the safety of giving
interferon to children. We actually published the first article on the
subject.
Once I convinced parents that the drug was safe for adults and that a
scaled-down dosage should be equally safe in children, then health insurance
companies still denied children access to the medication. So that again
pushed me to join forces with other physicians treating pediatric MS.
Since then there’s been lots of change. We now have approved treatments
for children.
CC: After you got the medications approved, what was your next challenge?
EW: That’s when it became pressing to identify the disease in children
as early as possible. In the past five years, there’s been a greater
effort to promote awareness of pediatric MS. Different groups have written
papers about their experiences, as well as about the safety of various
medications typically marketed to adults. Then, a couple of years ago,
we got a grant to start a pediatric clinic for MS patients that would
be staffed by a team of pediatric neurologists, as well as doctors with
MS expertise.
We were lucky, because we were one of the only centers to be sponsored
by the national MS Society, and we’re the only one on the West Coast.
Eight of us work together part time. In the past year we’ve seen
65 to 70 patients. During a visit, patients are seen by a pediatric neurologist,
an MS expert, a pediatric social worker and a pediatric nurse/psychologist.
We get all these specialists together in the same exam room for the first
visit, and then the family and the child split up and go with whomever
they need to see. So the evaluation is very thorough. We take into account
not only the symptoms of the child and his or her need to be diagnosed
or treated, but also the family dynamic and potential problems the child
faces in school. It’s very rewarding because we’re able to spend
time with the family. We’re able to provide them with the important
information they need to care for the child.
CC: How broad a range would you say you have?
EW: We are a regional pediatric MS center that sees all the patients on
this side of the Rockies. The next closest facility is the Mayo Clinic
in Rochester, MN. All the others are east of that. We try to be highly
visible and increase awareness about pediatric MS, what it has in common
with adult MS as well as how it is different.
CC: How is it the same and how is it different?
EW: What’s common between adult and pediatric MS is that most of
the symptoms are going to be similar, such as loss of balance, double
vision, decreased vision, weakness and numbness in different parts of
the body. What’s different is that sometimes, if the symptoms are
mild and the child is young, the awareness of what’s normal and abnormal
is different. If a child is six and has mild decreasing vision in one
eye, he or she is not always going to complain about it. If they have
severe loss of vision in one eye, then a teacher may be the one to notice
that something is wrong and call the parents. Sometimes that’s how
the problem is identified.
One big difference is the potential impact of MS on a child’s thinking.
That has much more complicated ramifications in kids than in adults, because
most adults are functioning at a set level. Children are on the ascendant
curve of their development. If that is affected then the consequences
are much more significant than in people who are not facing the challenge
of trying to learn for hours on a daily basis. There’s actually data
that shows if you had MS early in life, you’re more likely to face
academic problems. So if a child is diagnosed early, we can identify the
problems and address them sooner.
There are also diseases that mimic MS. Some are metabolic diseases, which
are typically genetically inherited diseases that we see mostly in younger
patients. As an adult neurologist, I’m not trained to diagnose these.
That’s why it’s very important for me to work with my pediatric
neurologist colleagues. There’s another disease called ADM, which
is an acronym for acute disseminating encephalomyelitis, which is basically
an inflammation of the brain and spinal cord that typically comes after
or during an infection. That is also more common in children than in adults,
and early on it can look like MS. But typically there’s only one
phase to that disease, as opposed to MS, which has relapses that come
and go. In these children, at least a third will actually develop MS.
CC: In treating children, do you use a smaller dosage of the same medication
that you use in adults?
EW: For children 10 or under, we often use a smaller dose to get started,
so that tolerability is better and side effects are minimized. However,
within a few months, most younger patients end up on the full dose that
we would use in adults. There is no major difference.
CC: What is your preference: To observe a new patient over a period of,
say, six months to see if there’s something going on, or to get them
on medication immediately?
EW: It all depends. For instance, if we see a child who (1) has experienced
his first episodes and we feel comfortable that it is MS and not ADM,
and (2) there are not many abnormalities on the initial brain MRI and
the child has had a mild relapse and has fully recovered, then most of
the time we are going to follow up for the first six months or year with
repeat clinical evaluation and MRI. However, if we see a child that has
had one episode and did not recover well, and shows huge amounts of abnormality
on the brain and MRI, we’re going to be more proactive. At the same
time we have to take into account whether the child and the parents are
ready for medication. If we see a child who has had several episodes with
documented changes on the MRI, and these episodes have occurred over a
relatively short period of time, it’s a no-brainer: We’ll recommend
treatment.
CC: So you see lesions both on the brain and on the spine in both adults
and children?
EW: In some instances, but we are still studying the differences and plan
to develop additional research, because there are occurrences in children
that may help us to advance our understanding and treatment of adult MS.
For example, if there is really some kind of overlap between ADM and MS,
why is it that one immune system can resist the next phase of the disease,
while another immune system cannot? So if you find the answer to that,
it’s a home run as far as developing a treatment.
We suspect that younger children’s brains may have the capacity for
self-repair. So if we can find the MRI markers in their brains and begin
to understand why they have this ability to heal themselves, then maybe
we can get lesions to repair themselves in the adult brain. In children,
around the age of puberty or younger, there’s a different sex ratio
of who develops MS than is the case in adults. So in adults, you’ve
probably heard that two-thirds of the patients are women. But in children,
up until the age of puberty, the sex ratio is 1 to 1...... continued
in ABILITY Magazine
ABILITY Magazine
Other articles in the Ron Livingston issue
include Autism—A Fathers Story; Green Up!—9 Things You Can Do;
Humor Therapy; Yo God, Down Here; Allen Rucker—Stuck at the Starting
Line; Disability Legal Rights Center; Fighting Cancer Discrimination;
Senator Letter—Hillary Rodham Clinton;
Assistive Technology—20 Years of the ATA;
Amputee Camp—Fun Without Limits;
Extremity Sports—Have Prosthetic, Will Rock!;
Wheelchair Games—At 83, They Kick Butt;
Horse Therapy—Gallop Your Way to Good Health;
Paralympics 2008—Countdown
to Beijing;
George Covington—To Lawyer or Not to Lawyer?;
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