Cover Story: When Children Have MS
Written by Susan Wells Courtney
Reviewed by Jack Burks, MD
Contributions by Jayne Ness, MD, PhD; Daniel Kantor, MD; Maria Milazzo, MS, CPNP
Diagnosis and Research
Multiple sclerosis (MS) has long been identified as a neurological disorder affecting young adults. For many years, when young children or teens would show signs of MS, their family doctor or neurologist would explain that children “don’t get MS.” They were thought to be too young, and were assumed to have another condition that mimics MS.
Even in recent years, with the knowledge that children could develop MS, this was never an easy diagnosis to make. Many doctors continued to steer away from a diagnosis that would be difficult to confirm, was a chronic and potentially disabling condition, and until the 1990s, had no effective treatments.
Jayne Ness, MD, PhD, is the director of the Center for Pediatric-Onset Demyelinating Disease at the Children’s Hospital of Alabama University in Birmingham. Dr. Ness explains, “Ten to twenty years ago, there was reluctance amongst neurologists to diagnose children with MS and ‘label’ them with a life-long disease without a treatment. However, MS in childhood and adolescence is now being diagnosed more frequently, due in part to an increased awareness that children can get MS and there are available disease-modifying therapies. Thanks to advanced neuroimaging techniques and the publication of diagnostic criteria, the diagnosis of MS in childhood has become more straightforward, but extra caution is still needed when diagnosing pediatric MS, particularly in young children.”
Diagnosis in children is still extremely involved. A recent report listed more than 40 of the more commonly known diseases that may initially behave similarly to early MS. Many variables come into play when a neurologist is faced with the task of diagnosing MS in adults, but the task of diagnosing MS in children can be even more daunting.
A common disorder that can initially be difficult to distinguish from MS is acute disseminated encephalomyelitis (ADEM). This is found more often in children than adults, and is frequently linked to a recent vaccination or viral illness. As many as 27 percent of patients initially diagnosed with ADEM are later diagnosed with MS.
Over time, MRI data and clinical symptoms can differentiate the two disorders. A correct diagnosis, however, will allow for early treatment of a clinically isolated syndrome (CIS), which is the first MS-like episode experienced by a patient, and typically leads to a diagnosis of MS.
Neuromyelitis optica (NMO) is another condition that may be difficult to distinguish from MS, involving recurrent demyelination of the central nervous system. Found in both adults and children, NMO affects the optic nerves and spinal cord, causing symptoms that include visual loss and weakness.
Daniel Kantor, MD, is an assistant professor and director of the Comprehensive MS Center, Department of Neurology, at the University of Florida & Shands Jacksonville. According to Dr. Kantor, “There are many other conditions which may be more likely than MS in kids, so it is important not to jump to conclusions, and to seek advice from your doctor, if pediatric MS is a possibility. Parents and doctors are getting better at recognizing kids who may be having difficulties, and the availability of MRIs makes diagnosing kids with MS much easier than it used to be.”
Dr. Ness continues, “With a first-time demyelinating event in childhood, we try to carefully characterize the event. Similar to adults, CIS in childhood can include one or more symptoms, such as optic neuritis (ON), transverse myelitis (TM, resulting in weakness or numbness in half of the body, or bowel and bladder problems), or brainstem syndrome with difficulty moving the eyes, problems swallowing, facial numbness, or weakness.
“In CIS, there should be no alternation in mental status. However, children often experience their first episode of demyelination as ADEM. This often presents as persistent lethargy, irritability, or even coma, along with one or more neurologic abnormalities.
“The MRI in ADEM frequently shows large, patchy areas of abnormal white matter, while an MRI in children with CIS (who often go on to be diagnosed with MS) has multiple small scattered abnormalities in the white matter. An MRI doesn ‘t always distinguish ADEM from CIS, but a repeat MRI several months later will show improvement with ADEM, while there is no change in CIS or even worsening. If there are more MRI lesions following an episode of CIS that are consistent with McDonald diagnostic criteria, we will recommend starting disease-modifying therapy. However, in children who have ADEM as their first episode, we are much more careful about making the diagnosis of MS, as ADEM patients can experience additional episodes of demyelination that may not progress to MS.”
A confounding factor to understanding MS in children has been the lack of consistent studies and terminology in the area of pediatric MS around the world. In response to this issue, the National Multiple Sclerosis Society (NMSS) formed the International Pediatric MS Study Group, which initially met in 2004 and 2005. The study group’s goals are to review published studies, improve diagnosis and care, along with promoting international collaborative research in pediatric MS.
The NMSS has also named six Pediatric MS Centers of Excellence. These are: the Center for Pediatric-Onset Demyelinating Disease at the Children ‘s Hospital of Alabama, University of Alabama at Birmingham; the Pediatric MS Center of the Jacobs Neurological Institute, State University of New York at Buffalo; the Mayo Clinic, Rochester, Minnesota; the National Pediatric MS Center at Stony Brook University Hospital, in Long Island, New York; the Partners Pediatric MS Center at the Massachusetts General Hospital for Children in Boston; and the University of California, San Francisco Regional Pediatric MS Center.
According to the NMSS, “The centers have committed to sharing critical resources and collecting standardized data so that each family at every center will get the same access and information. Center directors will meet in person two-to-four times annually to discuss advancements and share best practices.”
Maria Milazzo, MS, CPNP, is a nurse practitioner for the National Pediatric MS Center at the Stony Brook University Hospital & Medical Center in Long Island, New York. As one of the six Pediatric MS Centers of Excellence, Ms. Milazzo notes that many children are referred in for evaluation. “Some come in with other disorders or diseases, such as ADEM, recurrent optic neuritis (ON), or leukodystrophies. A number of kids have NMO. Knowing the right diagnosis is important, since the treatments are different for MS than for other conditions.”
She continues, “We see local children, from Long Island, New York City, and the tri-state area, as well as kids from across the country and around the world. Children from as far away as Japan, Indonesia, and Central America have come to us for evaluation. After they return to their country, we continue to consult with their local physicians and family members so they may continue with their treatment.”
Facts and Figures
Up to five percent of individuals with MS are believed to have experienced their first symptoms by the age of 15. In the United States, as many as 10,000 children and teens have MS. These figures present a number of challenges, in that little or no research is available for MS in these age groups, and most doctors have little or no experience caring for children with MS.
While estimates vary, pediatric MS and adult MS appear to have some differences. Some general findings about these differences are listed below.
A larger percentage of children with MS begin with the relapsing-remitting form of MS (RRMS), with estimates ranging from 90 to 98 percent (versus 80 percent of adults).
- Few children have primary-progressive MS (PPMS), although some very young children can have an aggressive form of MS, which may cause permanent and severe psychomotor deficits.
- Children with MS will typically have a second relapse sooner than adults, but their symptoms are more transitory and remit sooner, with symptoms lasting approximately four weeks versus six to eight.
- MS in children tends to progress more slowly, with more time to reach a certain level of disability, as measured by the Kurtzke Expanded Disability Status Scale (EDSS).
- MS in children takes several more years to convert to secondary-progressive MS (SPMS) than for adults, although given that children are diagnosed at an earlier age, the median age of conversion to SPMS is also at an earlier age than adults.
- A higher percentage of girls may develop pediatric MS than boys, with varying ratios as high as three or four to one.
- In published descriptions of pediatric MS populations worldwide, totaling more than 1,000 children with MS, the average age of onset was between eight and 14 years.
- While adult MS is primarily diagnosed in Caucasians, a higher-than-expected percentage of other ethnic populations, notably Latin Americans, appear to have an increased incidence of pediatric MS.
- MRI findings are less understood in pediatric MS; children have fewer lesions than adults; lesions in children do not show up as well following gadolinium injection (a dye given prior to the scan).
Dr. Ness’ center is also a Pediatric MS Center of Excellence. She explains, “We see patients with acquired pediatric onset demyelinating disease ranging from infancy to 18 years of age. We may follow these patients until they are 21 years of age or out of college, unless they are ready to transition to adult care before then.”
Dr. Kantor’s center sees both children and adults. According to Dr. Kantor, “Five percent of all MS patients are under the age of 18 years. The youngest patient we have diagnosed at our center was six years old, but usually pediatric MS is teenage MS.”
Ms. Milazzo adds, “About half of the children we see have been diagnosed with MS. The youngest children we have evaluated for MS have been two four-year-olds. The one was diagnosed with MS within a few months at age five; the other was diagnosed with MS about two years later, at age six. The good news is that MS in children this young is very rare. Typically, pediatric MS affects children 12 to 13 and up; the older the children, the higher percentage of those diagnosed with MS.
“Regarding ethnic background, we may see more variation. At our center, we have a higher incidence than expected of children with MS who are Hispanic; another center reports seeing more African-Americans than expected. Kids are presenting earlier, and they are not necessarily Caucasians. These statistics are being looked at by researchers.”
Similar to adults with MS, the risk for pediatric MS is thought to be largely influenced by a combination of environmental, genetic, and viral factors. Sunlight and vitamin D may play a role in the development of pediatric MS, and antibodies to the Epstein-Barr virus (EBV) are significantly higher in children with MS versus matched controls. Researchers do not know if this suggests a causative factor, or if children with MS have an increased propensity for viral reactivation.
Correctly diagnosing MS in children is important for the early initiation of disease-modifying therapies (DMT), the identification and management of symptoms, as well as attention to disease impact that may be affecting quality of life. The fact that early initiation of DMT in adults has beneficial effects on disease activity, combined with the assumption that these drugs may work similarly in children, adds to the urgency of diagnosing MS as soon as possible in young individuals.
Since studies with pediatric MS are extremely limited, much emphasis is placed on continual monitoring of safety, side effects, and efficacy issues. Children are different from adults in a number of ways, including how their bodies and immune systems respond to medications. How children absorb medications, their distribution of fat, the amount of available tissue for subcutaneous injections, and the functioning of their liver and kidneys, are among the many challenges of treating pediatric MS.
Additionally, physicians need to be watchful for any impact that a medication may be having on overall body growth and organs that are still developing. With pediatric MS, inflammation and demyelination are occurring in areas of the brain and spinal cord at a time when the body is still furnishing the protective myelin to insulate the nerves. These are also vital years in a child ‘s academic development.
No rigorous studies have been conducted with pediatric MS and the treatment of relapses. As mentioned earlier, disease flare-ups in children with MS tend to resolve more quickly than in adults and their symptoms tend to be more transitory.
In adults, mild exacerbations may go untreated – reserving the use of steroids for more severe flare-ups in the future. When relapses need to be treated in children with MS, the short-term use of corticosteroids at established doses appears to be well tolerated. Long-term use can affect growth and cause other serious side effects. Plasma exchange and IV immunoglobulins (IVIg) are two possible alternatives to corticosteroids.
With very limited research data available on the treatment of children with MS, treating physicians must rely on the published results of small, uncontrolled, and sometimes retrospective studies; personal experience; and assumptions from treatments with adults. None of the DMTs have been approved by the Food and Drug Administration for use in children, so neurologists must prescribe these “off label” to their pediatric MS patients.
This raises the question of dose amounts in individuals who have not reached full adult size. With the differences in weight and body surface, trials have yet to be conducted to determine the ideal dosages for children. Optimum dosing means that it is not only the most effective dose, but that it is also one which can be safely tolerated. Other questions concern the long-term safety issues for the patient. Trials have not yet been conducted to see if any of the DMTs affect growth, puberty, or the immature immune system of a child.
At the moment, physicians may derive some useful information from the results of a few small studies for safety and tolerability with the interferons (Avonex ®, Betaseron®, and Rebif®) as well as glatiramer acetate (Copaxone®) in children with RRMS. In general, no unexpected adverse events occurred, and side effects appear to be similar to those experienced by adults.
With the interferons, liver function is of concern, particularly in children under the age of 10, and must be monitored regularly. Other side effects from the interferons include flu-like symptoms and injection-site reactions; depression has also been reported. To minimize side effects, interferons are given at smaller amounts and slowly build to a full dose.
Copaxone does not affect liver function and does not tend to cause the flu-like symptoms observed with the interferons. The most commonly reported adverse events are injection-site pain and a transient systemic reaction, also occurring in adults. Copaxone may be given at full dose from the start; dose escalation is not needed.
The authors of some of these published studies have reported a reduction in relapse rate for children taking a DMT. While this is encouraging, these observations, however, are compared to a patient ‘s baseline and not a matched placebo control. Efficacy will need to be established through future, well designed, placebo-controlled trials.
“It may seem depressing to think of kids having MS,” notes Dr. Kantor, “but I think that they have opportunities available to them which were not around just a few years ago. Although it is considered off-label, I think that kids with MS should be treated with disease-modifying therapies, just like adults.”
Dr. Ness comments, “We have not observed an adverse event in children on a DMT that differs from those experienced by adults, although children are at a higher risk for abnormalities in liver function tests. Children are typically started at a lower dose of DMT which is gradually increased over several weeks, and all but the smallest children end up on a full adult dose.
“A child’s level of maturity and lifestyle may mean that a parent or other adult is given primary responsibility for administering the medication. The timing of when the DMT is given may be adjusted so that children miss fewer days at school. For example, a parent may give a weekly injection on Friday evening, so that the child will recover from side effects by Monday morning.”
Ms. Milazzo explains, “We usually recommend treatment immediately for kids who meet the diagnostic criteria for MS. As with the treatment recommendations in adults, in the past, we would monitor children with CIS closely. Now we may recommend starting treatment, with the goal of increasing time to the occurrence of a second event. Treating right away is almost a relief for some people – not having to wait for treatment. Very rarely does a child or parent deny treatment.
“We tend to get a much better adherence to the treatments with children compared to adults. Parents care for their children and want to do the best for them; the children listen to their parents and follow their instruction.
“We give recommendations and explain options. We work closely with the families, and try to optimize treatment adherence. Kids feel that MS is not what they are; it’s just a piece. While we have very high rates of compliance, we want to know if anyone is missing doses, in which case we might change medications, change the routine, or take a vacation from medication. We work with the kids to make decisions and to make adjustments at any time.
“We haven’t found that any of the DMTs work better than another. The decisions are up to each individual, and the drugs used may change over time. The small kids may prefer the once weekly injection, while the pre-teens, from about 10 to 13, may opt for the daily injection. This is because the daily injection does not require blood monitoring for liver function, and also, because it is taken every day, it’s something they can do after brushing their teeth before they go to bed.
“Once in college, we see some of the older kids switch to a weekly injection. They can take this when home on the weekends, and they don ‘t need to store or administer any medication while on campus. I know of one mother who meets her child in the college parking lot every Saturday to give the injection. It ‘s interesting to watch how different kids adapt their schedules to the medications.
“With the interferons, we start at a low dose and titrate very slowly to a higher dose. We give Tylenol ® or Advil® before and after each dose to reduce side effects. We continue to monitor the situation monthly, and then every three-to-six months. We have tricks for dealing with injection-site reactions, and most of the kids like the auto-injectors. It’s all individualized.”
With regards to the auto-injectors, Dr. Kantor sees a special young boy. “I have a six-year-old patient who presses the button on his own auto-injector while it is held by his parents. When I first showed the auto-injector to him, he was excited because his auto-injector was ‘cooler’ than his dad’s (who has diabetes). I encouraged him to decorate it and make it ‘his own.’ This has helped a lot in keeping him on the medication and keeping him running around.”
The symptoms experienced by children with MS often parallel those experienced by adults with MS. While no trial data is available for symptom management in pediatric MS, physicians can use treatment guidelines from other conditions that affect children and share certain symptoms. For example, spasticity in pediatric MS is treated similarly to children with severe spastic cerebral palsy.
Common symptoms experienced by children with MS include fatigue, spasticity, tremor and ataxia (loss of muscular coordination), paroxysmal symptoms (sudden recurrence of symptoms, or a spasm or seizure), bladder and bowel issues (although these symptoms are more common in adults with MS), visual changes, and cognitive impairment. With children, symptoms can be transient and resolve more quickly than in adults.
Ms. Milazzo points out, “Fatigue is a huge and life-changing symptom for the kids. They need to go to school, have friends, and have a life. It really causes difficulty and impacts their quality of life. We work on planning their school days, which might include putting ‘heavy’ classes in the morning. Examples of work-saving strategies (which must be arranged by the school) include doing fewer math problems, doing less writing, using a PC, and having a scribe take notes. Many things can be done. Medications are also available to help with fatigue.
“Cognitive problems are very common as well. School modifications can help. Being 15 and having cognitive issues is frightening. They sometimes need to transition career choices and modify their plans for college. We let the kids know that they have a good future with great potential, but they need to be realistic in their goals.”
Dr. Ness explains that symptoms can vary among age groups. “Preteens may experience cognitive problems, and as a result, academic issues can be more severe because of early-disease onset. Emotionally, they can become more dependent on parents and have difficulty transitioning to normal independence in adolescence.”
She continues, “With teens, we see visual changes, difficulty with mobility, fatigue, sleep disturbances, and muscle weakness as common physical symptoms. Seizures fortunately are rare. Cognitive symptoms can include attention difficulties, short-term memory loss, and problems with processing information. Emotionally, we see depression, general anxiety, injection anxiety, and withdrawal from others. In terms of social/economic concerns, teens with MS are more difficult to insure, they have limited career paths available, and their future can be unpredictable.”
The Impact of MS on Children and Teens
The psychosocial effects of MS can impact many aspects of a young person’s life. School, family, friends, activities, and quality of life can all be greatly affected. Healthcare professionals, parents, and teachers (among other educational specialists) can all play a role in helping a child and family adjust to the symptoms and implications of a chronic illness.
When children or teens have MS, they typically feel different and socially isolated, as though they don ‘t “fit in.” Unlike some other, better known disorders (such as asthma or juvenile diabetes), not many children are diagnosed with MS. Parents and children feel alone without others to identify with and provide support. Given that pediatric MS is a relatively rare condition, family members may feel frustrated over a lack of information available and a lack of understanding from others who are not familiar with MS.
Children with MS must cope with a number of issues, such as:
- Ongoing doctor appointments, which may include various types of therapies, in addition to periodic exams and tests
- Ongoing treatment, including injections at home (from once per week to once per day), as well as any symptom-management drugs needed, and side effects from these treatments
- Missed school as a result of not feeling well or having a relapse
- Specific symptoms, which can limit the child’s ability to participate in school and activities, affect his or her performance, and can be embarrassing or a source of teasing from peers
Many symptoms can negatively impact a child or teen’s performance and behavior at school. Cognitive and/or visual deficits can increase the difficulty of class work, taking tests, and completing other schoolwork. Gait and movement issues can limit the amount and speed of walking necessary to go from one classroom to another; these issues can also prevent a child from participating in a sport or activity that he or she previously enjoyed.
Bladder or bowel problems can require several embarrassing trips to the lavatory. Severe fatigue can prevent a child with MS from going to school full time, or socializing with friends after school. Some of these symptoms may be misinterpreted by teachers as ways to get out of doing work.
Mood and behavioral problems are also a part of the equation. So much can weigh on a young person ‘s mind when he or she has MS. The unpredictability of the disease along with the potential for disability is always in the back of one ‘s mind. This not only impacts the present, but also the plans one has for college and career, creating worries over insurance, healthcare, family planning, and long-term financial security. Children, as well as family members, may feel anxious and depressed about their situation and their future. Symptoms of depression can include crying spells, withdrawal from others, and even self-injury or suicide. Seeking psychological counseling, and if needed, anti-depressive or other medications, is vital to good mental and emotional health, and for some, can be life-saving.
Similar to young people with other chronic conditions, such as diabetes or epilepsy for example, adjusting to a chronic illness can be a very difficult process. The fact that a young person is diagnosed with a chronic illness is simply not fair, and the individual can feel angry and frustrated. Emotions can show in different ways, and in addition to tensions at home, some children may become uncooperative and even disruptive in class. Other examples of poor behavior can include cutting classes, incomplete assignments, and becoming physically aggressive toward other children. Some children and teens may involve themselves in risk-taking behavior, possibly running away, experimenting with drugs and alcohol, becoming sexually permissive, and even getting into trouble with the law.
To minimize and ideally avoid these types of troubling behaviors, healthcare specialists use a team approach. Professionals, such as neuropsychologists, physical and occupational therapists, social workers, and other specialists, can work together to make sure that the disease, symptoms, and side effects, as well as mental and emotional health, are all being proactively addressed. The team also involves the parents and family members, along with teachers and staff at the child ‘s school, to provide important information about MS and to put problem-solving strategies into place.
Studies show that families can cope better if members can communicate openly with one another. A positive family environment with caring support is important, as is support from friends and healthcare professionals. Family members should acknowledge the disease, but at the same time, try to keep things as normal as possible, acting in ways that demonstrates this to others.
Cognitive changes can be particularly concerning and require specialized evaluation and treatment plans. Estimates range from 30 percent to as high as 60 or 70 percent for the number of adults with MS affected by neuropsychological deficits. Common issues include problems with memory, visual-spatial functioning, processing speed, and executive functioning (problem solving, planning, etc.).
Children also experience cognitive problems, and a small study identified potential deficits in the areas of general cognition, language, visual-motor integration, as well as verbal and visual memory. Cognitive problems can occur in MS without any physical symptoms. While they can affect school performance, studies show that a child experiencing cognitive deficits can still have test grades within normal expectations for that age group, so specialized testing with a neuropsychologist or similar professional is needed to identify areas of difficulty. Listening to instruction, organizing assignments, and idea generation, are examples of problem areas that may affect schoolwork.
A number of strategies at school can help address some MS symptoms. For cognitive problems, cognitive intervention can be done with a specialist to develop areas of strength – which in turn will help improve memory and compensate for any deficits. Sitting closer to the front of the class can assist with listening and following instructions. Increased time for testing can help as well.
Fatigue and weakness issues can be helped through fewer assignments, reduced distances to walk, and fewer classes during times of greater fatigue (maybe in the afternoon). Visual evaluation and tracking strategies can help with visual problems, and some students may have a scribe to take notes. An occupational therapist is able to prescribe and fit adaptive equipment to minimize the effects of certain physical symptoms, which may affect writing, walking, etc.
Teens with MS often experience fear about the future and taking treatments. While most individuals feel an initial shock over the diagnosis, this can frequently turn into determination. The following strategies and activities may be helpful to teens who are coping with a chronic illness.
- Stay active and continue with other activities, including hobbies, sports, music, walking, and exercise.
- Stay socially active; join a group, go out with friends or on dates.
- Some find prayer and meditation helpful.
- Look for support from family and friends; share feelings; talk openly to those close to you.
- Consider other support systems, such as support groups, chat rooms, and pen pals; connect with other teens with MS or those with another chronic condition.
- Keep a positive attitude and a sense of humor; don’t feel sorry for yourself; remember that everyone has his or her own set of problems and issues that are different.
- Find choices to exercise free will; you can’t control having MS or taking treatments, but you can choose certain activities, such as entertainment, clothes, decorating your bedroom, etc.
- If feeling depressed or anxious, talk with a family member and get help from a healthcare professional; therapy and/or medications can greatly improve how you feel and your outlook for the future.
Dealing with the normal stresses of being a teenager, such as dating, peer pressure, self image, body shape and complexion, school, and parents, is challenging for anyone that age. Adding the stress of a chronic illness can affect one ‘s formation of identity, feeling as if he or she is flawed, sick, or doesn’t fit in with others. Teens with MS should work to move MS to the side, understanding that it is something they must deal with, but it does not define who they are. Instead, take care of the MS, but focus on other activities, including friends, family, school, and special interests, such as cars, animals, sports, and music.
Teens need to understand that some friends may not be able to handle the burden of their MS, but most will not find it to be a burden – and are happy to give their support. If symptoms become severe or if home-schooled…family, friends, and the teen with MS, need to make extra efforts to stay involved with outside social activities – to avoid feeling alone.
“We’ve found that several of our teens with MS want to do everything they can to not set themselves apart from their peers, ” notes Dr. Ness. “To remain ‘normal,’ some don’t tell others they have MS, they don’t accept school accommodations recommended by our staff (so that other teens will not see they are getting special treatment), and they may not tell their parents about symptoms they are experiencing, in order to participate in school and social activities. Teens with MS may experience isolation and ‘being the only one’ more so than adults, because the disease is very rare in people their age.”
She continues, “A multi-disciplinary team cares for the pediatric demyelinating disease patients in our center. All patients see a pediatric and adult neurologist, a physical therapist, occupational therapist, neuropsychologist, child psychiatrist, and school psychologist. Depending on the needs that these specialists find, referrals to other specialists and further outside therapy or counseling will be recommended. This could include referral to urology, neuro-ophthalmology, additional physical therapy, occupational therapy, rehabilitation, and psychiatric therapy.
“We also recommend that all of our patients complete a neuropsychological evaluation as part of the baseline testing with the neuropsychologist. All of our MS patients undergo repeat neuropsychological evaluation every two years for on-going evaluation, follow-up, and recommendations. In addition, our school psychologist will assist families with implementation of accommodations or modifications at school as necessary.”
Ms. Milazzo agrees, “I always encourage ongoing psychological care with a psychologist or social worker – some type of psychological help – for both the parents and the child. Like anyone else, things can be going well, and then you have periods of crisis, where things get unadjusted.
“We also talk about alcohol and drugs. We tell them if they already have symptoms from MS – whether a limp, balance problems, etc. – taking alcohol or drugs may make things worse. They need to make wise lifestyle decisions.”
Dr. Kantor lends more support to the need for ongoing psychological care. “We are trying to raise the awareness among pediatricians and pediatric neurologists, that pediatric MS should be given extra consideration. Life for adults with MS can be rough, but imagine being at school and being teased that you look pregnant because you gained weight on IV steroids; or missing school because of a hospitalization and being teased that you must have been taken to jail. Kids can be mean and they tease other kids who look different or have any type of difficulty. That is why it is very important to make sure that kids with MS have not only a medical and nursing support system, but psychological and social support as well.
“M*STAR is the Multiple Sclerosis Team Approach we use at our center, and it is especially important for our kids with MS to realize that they are in charge of their own care, their own destiny. We have found that our pediatric MS patients tend to mature faster than other kids because they are forced to realize the importance of taking care of their health to maximize their future.”
MS Camp and Shining Stars
Ms. Milazzo is thrilled with the success of her center’s summer camp. “I feel so lucky to be at a center where we’ve developed a camp for kids with MS.
“Each session goes for four-to-five days, and during that time, the kids stay in the retreat center. This is like a college dorm with a dining room…more of a ‘luxury camp,’ since we’re not in tents. The kids do a lot outside – sailing, kayaking, high ropes course, going to the beach (many are from areas that do not have a beach), and many other fun things. They learn to work together as a team, building a connection, being together, doing very physical types of activities. We also do activities involving music, movement, and performing arts therapy.
“Over the years, we’ve been adding to the program. At first, we wanted the kids to enjoy themselves and not think about their illness. As it turns out, the kids want to talk about their MS, including things like lifestyle choices, deciding how to grow up, what they ‘ll be, their feelings about MS, and being different in some ways while being the same in other ways.
“It’s incredible to listen to kids about their diagnosis. Often they are relieved that it was not a brain tumor; they thought things would be much worse; there ‘s almost a sigh of relief. Of course, there is also despair over having an unpredictable, chronic illness, that not a lot of kids have, and with treatments that have not yet been proven in children. They are even given a hard time; everyone says that ‘kids don’t get MS.’ They definitely feel isolated. This is why the camp is so important. Both kids and parents meet other kids with MS and their parents; both groups realize they are not alone.
“The NMSS has a wonderful program for kids. It includes a quarterly phone program for parents, where they talk about things like school, fatigue, financial planning, and other important topics. They also have a networking program through email, for both kids and parents. This develops a virtual community of children with MS and their parents.
“At camp, some of the kids who have been writing to each other finally get to meet in person. They already know each other – which is ‘really cool.’ New kids feel welcome as they join the others. Some of the kids know everybody, and they are the ‘celebrities.’ Kids don’t want to feel different; they want to be like everyone else. Being around so many other kids who also have MS and have the same challenges is just powerful.
“During the camp’s two sessions, kids come from all over the country and Canada. We are developing a new pilot program this winter. It is for the older kids as they transition into adulthood. We will be working on the next step; kids have a different perspective of MS than an adult – different needs, school, future family plans, etc.”
Ms. Milazzo continues, “Our kids are amazing. One of the camp kids had two full scholarships offered for soccer. She does a lot of public speaking, serving as a mentor to many.
“Another girl in Boston is working to raise awareness at the high schools. In Pennsylvania, one of the children wrote a book for kids with MS, talking about symptoms and how friends can help.
“Every one of these kids is special. They are all really nice, and all really driven. They are ‘A’ students, athletic, healthy, well-rounded, doing great, and motivated.
“There are tons of people around who are ready to help; people who really care. I see an international outpouring of interest in research for pediatric MS. Things are going to continue to get better in a very short time, as we learn more about MS and develop new treatments.
“The important thing for people to realize is that kids with MS are just like everybody else. We all have individual issues – some of us wear glasses or some of us may have one leg shorter than the other – but these things are just one piece of who these kids are. When we can put everything in perspective…we’re good!”
For More Information
For details about the camp (for ages 11-18), readers may visit www.pediatricmscenter.org. Readers may contact Maria Milazzo via email at firstname.lastname@example.org or phone at (631) 444-7802. In addition to camp information, Ms. Milazzo is happy to take calls with general questions about pediatric MS, or to discuss coming in for an evaluation.
To reach Dr. Daniel Kantor, readers may call (904) 244-3961 or email email@example.com. Readers may visit the MS center ‘s website at http://ufhealthjax.org/neurology/multiple-sclerosis/.
Dr. Jayne M. Ness may also be contacted for questions or pediatric MS evaluations. Dr. Ness may be reached via email at firstname.lastname@example.org, or via phone at (205) 996-7633. Readers may visit www.uab.edu/cpodd for more information.
Readers may also speak with one of MSAA’s Helpline consultants at (800) 532-7667 for more information or for a full list of resources used for this article.