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?; ABILITY's Crossword Puzzle; Events and Conferences...subscribe

More excerpts from the Ron Livingston issue:

More excerpts from the Ron Livingston issue:

Ron Livingston — Music Within

MS — In Children

Walgreens — Hire & Hire

Behind the Scenes — Music Within

Humor Therapy — Yo God, Down Here

Allen Rucker: Stuck at the Starting Line

DRLC — Fighting Cancer Discrimination

A Father's Story — Adopting a Boy with Autism

Horse Therapy — Gallop Your Way to Good Health


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