Pediatric Multiple Sclerosis

There has been extensive research about MS over the past 50 years. While we still do not know the cause of MS, we know that it is an inflammatory disorder of the central nervous system that occurs in people with a tendency to such a problem. We know that about 350,000 people in the United States have MS, about 1 in a thousand people. We know that it is more common further north and south of the equator, though we are still unsure why this is. Females tend to get MS about 3 times as often as males, a rate which is similar to other immune diseases. In children this ratio may be even higher, with most of the patients begin female. Girls with MS are more likely to have initially sensory symptoms (e.g. numbness and tingling) than boys. In addition, girls tend to recover more from their initial episode of MS than boys. MS is more common in Caucasians, but can occur in other populations. It is not contagious nor is it infectious. There may be a link with reduced vitamin D levels and perhaps with decreased sun exposure. In children with MS there may be an increased link with exposure to Epstein-Barr Virus. Most people with MS are diagnosed after the age of 18. Only about 3-5% of all MS patients have the symptoms of their MS begin in childhood.

We know that there is a genetic component to MS. Having a mother or father with MS increases the risk of having MS to about 3-5% lifetime, and having an identical twin with MS increases the risk to about 30%. However, many people with MS have no close family members with the disease.

There is nothing that an individual with MS either did to cause the disease to happen, or can avoid to stop the disease from following its natural course. We know that emotional stress may increase the symptoms of MS. We also know that attacks of MS are more likely after infections. There does not seem to be any association with physical trauma or surgical procedures and MS, nor do these seem to make MS worse.

Pediatric MS is similar to adult MS in the kinds of symptoms that occur. MS varies from person to person so there is no ‘standard’ set of symptoms for MS. However we know that common symptoms of MS include numbness or tingling in various parts of the body, weakness of one or more part of the body, walking difficulties, dizziness, fatigue, visual blurring, and occasionally double vision.

Patients may also have a symptom called Lhermitte’s phenomenon, in which they feel electrical tingling or shocks down their back, arms or legs when they bend their neck forwards. Sometimes people notice hesitancy when they try to urinate or may find that ‘when they have to go, they have to go’. There is no way to predict which symptoms one person might develop. The usual course of MS is to have periods of time where things are relatively stable, followed by times when, over a few days or weeks, new symptoms occur or old symptoms worsen. This relatively rapid worsening is known as an exacerbation (also known as an attack, or a relapse). In others with MS, there may be a tendency to progress in that symptoms gradually worsen over time (months to years).

Sensory Symptoms

(changes in sensation)

• Numbness
• Tingling
• Other abnormal sensations
• (“pins & needles,” pain)
• Visual disturbances
• Dizziness

Motor Symptoms

(changes in muscle function)

• Weakness
• Difficulty walking
• Tremor
• Bowel/Bladder problems
• Poor coordination
• Stiffness

Other Symptoms

• Heat sensitivity
• Fatigue
• Emotional changes
• Cognitive changes
• Sexual symptoms

MS varies from patient to patient so that each individual has their own set of symptoms, problems, and their own course. There are people who have MS so mildly that they never even know that they have it. Of course, there are also others that have it severely. It is really a spectrum that ranges from mild to severe. An international panel of experts developed a classification of MS in 1999 that most neurologists use today.

• Relapsing-remitting: Patients have attacks of symptoms/signs, with or without recovery, but between attacks have no interval worsening
• Secondary progressive: This is often after a few years of relapsing-remitting MS. The pattern changes from a relapsing pattern to progressive in between attacks, usually with fewer attacks
• Primary progressive: Gradual onset from the beginning, no attacks
• Progressive relapsing: This is a rare form, and begins with a progressive course, while later developing attacks
• Fulminant: Very severe, rapidly progressive MS. This is a rare form of MS

Most pediatric cases of multiple sclerosis are of the relapsing-remitting variety. Some children do well, with long periods of time between relapses. Some seem to have a more rapidly progressive course.

Multiple sclerosis is often difficult to diagnose. This is because there is no single test or finding on the examination that makes the diagnosis, and because the disorder varies from person to person. In most cases there is a history of neurological symptoms that come and go over years. The neurological examination may show changes that suggest problems with the spinal cord or brain. The MRI may show areas of abnormality that suggest MS, thought the MRI in itself does not ‘make the diagnosis’. Spinal fluid testing may show that the immune system is active in and around the brain and spinal cord, supporting the diagnosis. Evoked potentials may assist in diagnosis. All of these need to be put together by the physician to determine if MS is the actual diagnosis. Even when all the tests are done, some people cannot be diagnosed for years after the beginning of symptoms. An international panel of MS experts recently revised the ways that MS is diagnosed, providing a framework for clinicians to use in making the diagnosis. These new diagnostic criteria (The McDonald criteria) allow the diagnosis of MS if MRI scanning shows new lesions forming over time, making even earlier diagnosis possible. Even with these advances, there are some people where the diagnosis may be uncertain for years, due to the complexity and variation of MS.

In the pediatric age group, diagnosis is even more complex than for adults. This is because there are a large number of disorders that occur in childhood that may mimic MS. For example, acute disseminated encephalomyelitis (ADEM) is more common in childhood and may be confused with MS. Treatment for this disorder is different from MS in that ADEM is usually a one time illness, and does not require treatment after the initial acute episode. There are a variety of rare diseases, some genetic, some infectious, some due to other illnesses, that need to be distinguished from MS. Expert evaluation of the clinical history and physician examination, MRI appearance, cerebrospinal fluid, and other diagnostic testing is key to discriminating these other disorders from MS.

Factors which seem to predict a second attack of MS in children include optic neuritis, age greater than 10 years, or an MRI suggestive of MS with multiple well-defined periventricular or subcortical lesions.

At the Mellen Center, patients may meet with one or more members of the care team, depending on individual needs. On the first visit, patients typically meet with a neurologist, who is primarily responsible for managing the patient’s medical care. At future visits, patients will also meet with a clinical nurse specialist or physician assistant, who will discuss any concerns about MS and offer suggestions for special problems related to the disease, including spasticity, pain, bowel, bladder or skin problems. The clinical nurse specialist or physician assistant works closely with the neurologist to carry out the individual’s care plan.

After a thorough medical history and complete physical evaluation, the Mellen Center team develops an individualized care plan to meet the patient’s specific needs. In addition to elements recommended by each member of the Mellen Center team, a care plan also may include specific components requested by the patient, family members or a family doctor.

Follow up visits are scheduled with one of the clinical nurse specialists or physician assistants who will evaluate your current medical status and discuss treatment plans and options with you and one of the Mellen Center physicians. Additional appointments may be scheduled with a physical or occupational therapist, a psychologist, or a social worker, if necessary.

Team members meet regularly to discuss the individual’s progress and fine-tune care plans as needed. Team meetings are an effective means to monitor the flare-ups and remissions that are characteristic of MS. Team members help patients and their families prepare for these changes.

Symptom Management

Spasticity

Spasticity is an increased muscle tension and tightness. It may interfere with useful movements. It is often present when people have had MS for a few years, and tends to be more prominent in the legs than in the rest of the body. Phasic spasms are rapid movements of limbs that occur suddenly, such as sudden flexing of a leg. Tonic spasms are a tightening of limbs in place. Spasticity may be painful and it may interfere with function (walking, transferring, sitting). In general we treat spasticity when it gets in the way of function. While patients with spasticity may be weak, the two are not the same and strength may be preserved in someone with spasticity. There are a variety of treatment for spasticity which may be of great benefit to patients.

1. Regular stretching, exercise such as swimming, tai chi, yoga: regular stretching and toning exercises are key to the effective treatment of spasticity. At the Mellen Center we encourage activity as an integral part of treatment of spasticity.
2. In general we use meds when spasticity interferes with function
3. One medication for spasticity is lioresal (Baclofen). In children this is usually started at about 2.5 mg per day and then gradually increased in divided doses to a daily dose of 20-60 milligrams per day. As the dose gets higher side effects such as fatigue, dizziness, rubbery feeling legs, and weakness all may become more frequent.
4. Another medication is tizanidine (Zanaflex). This is usually begun at about 2 milligrams at bedtime and gradually increased by 2-4 milligrams weekly to a maximum 32 milligram per day dose in divided doses. Side effects of this medication include lightheadedness, low blood pressure, and fatigue. It rarely affects liver function tests.
5. On occasion the physician may consider adding small doses of a medication such as diazepam to the above medication. Medications in this class may become addictive and have to be used with caution. They are not generally recommended in the pediatric population.
6. Another medication which can be used at times is gabapentin (Neurontin). This is usually started with a low dose and gradually titrated to a dose that is effective. Side effects include dizziness, fatigue, and weight gain.
7. Physicians usually consider an implantable Baclofen pump for patients not achieving effect on oral agents without significant side effects. The pump is an electronic device with a storage area. It is placed under the skin of the abdomen surgically. A catheter goes from the device to near the spinal cord. A small amount of medication, usually lioresal (Baclofen), is placed in the pump and a very small dose is then continuously delivered at the spinal cord level. This dose can be varied electronically. This procedure is costly, sometimes covered by insurance. Risks include the risk of surgery, risk of infections, and the discomfort of surgery and an implanted device under the skin. At the Mellen Center we have an active program of placement and monitoring of Baclofen pumps for a variety of diseases that cause spasticity.
8. Botulinum toxin (botox) may be used for patients with spasticity as well. Usually this is reserved for patients with localized problems with spasticity. For example, if one muscle group is either causing pain or altered mobility, direct injection of Botox into this muscle group may provide increased range of motion or pain relief.

Fatigue

Fatigue, a sensation of being tired all the time, is very common in MS. Most patients with MS feel tired more than they used to, despite getting sleep at night. While fatigue in MS can be due to a lack of sleep or poor sleep, it is often just one of the symptoms of MS. It may be due to activation of the immune system, like fighting off an infection. It may be due to having to work harder to re-route information in the brain because of the MS. In any case, it can be treated. Taking naps helps with afternoon fatigue. Regular exercise actually improves fatigue symptoms. Avoiding very heavy meals may help. Making sure that night time sleep is good is also useful. There are medications that have been shown to be helpful in MS related fatigue.

At the Mellen Center, when we assess patients with fatigue, we consider the following things:

1. We assess sleep, and consider disorders such as restless leg syndrome, obstructive sleep apnea, medications that interfere with sleep in our evaluation.
2. Review meds for fatiguing meds which may be common in people with MS.
3. We may consider blood tests for low thyroid or low blood count to check for medical causes of fatigue.
4. We encourage regular exercise which has been shown to reduce fatigue in people with MS.
5. Judicious naps may be helpful in relieving fatigue, particularly early afternoon fatigue.
6. We will assess patients for depression. People who are suffering from depression may have fatigue as a specific component of their depression.
7. If the above measures are not effective we will consider medications. There are a number of medicines which have been shown to have some effect in the fatigue related to MS. No one medication works in everyone.
8. We might suggest amantidine treatment for MS related fatigue. This is a medicine which has been used for years in MS fatigue with some benefit. Occasionally patients develop a vein-like rash on their legs known as livido reticularis. Dosing in children ages 6-9 years with a weight of less than 40 kilograms is 5 milligrams/kilogram/day up to a total daily dose of 150 milligrams. For children age 10 years and older and over 40 kilograms the standard adult dose of 200 milligrams appears tolerable.
9. On occasion stimulant medications may be helpful. However these must be used with caution and are a risk for addition as well as cardiac side effects.
10. Provigil is a medication which is FDA approved for a condition called narcolepsy but which has been shown to be helpful in MS related fatigue. It is relatively costly and not all insurances will cover it for this indication. It may cause headaches and increase blood pressure. Small doses of this medication (50-100 milligrams per day) have been shown to be safe in the pediatric age group (Small study only).

Pain

In the past physicians thought that MS did not cause pain. However recent studies have shown that up to one third of people with MS will have pain related to their MS at some time during their course. This pain comes in a variety of forms. Occasionally people have trigeminal neuralgia, a syndrome where they get sharp, stabbing pain in the side of the face or the jaw. It may come and go for days, weeks or even longer. Various medications may help with this. Some people develop back or neck pain, which is hard to distinguish from the pain that many other people get. In addition, patients may get burning or tingling pain in the legs, arms or their body which may stay or come and go. Pain is an important part of MS and should be treated appropriately.

At the Mellen Center, when treating pain in MS, we try to make sure that there is no focal or localized cause of the pain. Patients may have other disorders causing pain, and may have problems such as hip or shoulder joint injury related to steroid treatments in the past which might cause pain. We would consider imaging the area of pain and examining this site closely.

1. For pain that appears to be from joint or bone, anti-inflammatory medications, acetaminophen or tramadol may all be useful. Physical measures such as stretching and therapy are also useful.
2. For pain that appears to be from the nerves, some medications known as tricyclic antidepressants may be beneficial. Medicines such as amitryptiline and nortriptyline have been shown to be effective in such pain syndromes. Both can cause weight gain, sedation, and fatigue. At high dose both may cause cardiac arrhythmias so must be used cautiously. Similarly, medications in a class known as antiepileptic drugs are beneficial in neuropathic pain (pain beginning in nerves). Medicines such as gabapentin, carbamazepine, lamotrigine, and others have been used for such pain. Tramadol is another medication which has been shown to be useful for neuropathic pain. There is a topical patch (Lidocaine 5% patch) which has also been shown to be useful for such pain. Finally opiate analgesics may occasionally be necessary for chronic neuropathic pain, but must be used only after a full discussion of the monitoring, risks and benefits of such medication.
3. iii. For trigeminal neuralgia, medications such as carbamazepine, gabapentin, lamotrigine, lioresal and others may be useful. Occasionally more than one medication needs to be used in combination. If medicines fail, surgical approaches such as percutaneous balloon compression of the Gasserian Ganglion may be beneficial. This is a surgical procedure in which a small balloon is introduced near to the nerve which is affected in trigeminal neuralgia and blown up to partially injure the nerve.

There is limited data on pain treatment in the pediatric population with MS.

Depression

Depression has been shown to be very common in people with MS, affecting approximately 30% of patients some time during their course of MS. It interferes with activities, causes emotional distress, and may affect how the patient is able to cope with their disorder. At the Mellen Center we try to be aware of the role of depression in MS and work with our colleagues in psychiatry, psychology and neuropsychology to reduce the burden of depression in our patient population. Symptoms of depression include fatigue, sleep disruption, sadness, a sense of hopelessness, a sense of helplessness, lack of interest in usual activities, negative thoughts, and occasionally suicidal thoughts or acts.

At the Mellen Center we will ask about the presence of depression and further assess this if necessary. We will consider counseling and psychiatric assessment. If medications are necessary, some medications which may be preferable in the MS population include bupropion (Wellbutrin) ( which has a limited effect on sexual function and may not cause fatigue), venlafaxine (Effexor) (May improve fatigue), and other selective serotonin reuptake inhibitors. All such medication should be used with caution and under a careful program of monitoring. Occasionally patients with depression may require stimulation medications for a lack of interest in their activities or for a slowing of thinking and action (psychomotor slowing). All patients with depression need evaluation for the risk of suicidal activity.

Cognitive problems

Some patients with MS find that they have cognitive problems. This may range from the nuisance of not being able to remember names or ‘where you put things’ to more severe problems with organizing your day or being able to function at work or at home. This may occur independently of depression and tends to be more common after years of MS. While there are no specific treatment for this, there are a number of things that can be done to combat this.

At the Mellen center we would evaluate the cognitive problem, and consider testing such as neuropsychological measurement to fully evaluate the cognitive problem. We would review the medications that the patients is on to make sure that they are not causing some component of the cognitive problem. We will often suggest that people write things down, and try to simplify their day to day activities. It is a good idea to have one place to put things and try to be consistent when putting things away. We will assess sleep, pain, and depression, all of which may negatively affecting the ability to focus and remember things. If necessary, we may consider trials of medications such as donepezil (Aricept), or memantine (Namenda) in memory disorder related to MS. Both of these medications have been shown to improve measures of cognition in small trials in MS.

On occasion for trouble with inattention or distractibility we might consider Ritalin, Adderal, Concerta; all of these medications need to be closely monitored for safety. Occasional patients have trouble controlling their emotions. They may begin crying or laughing suddenly and inappropriately. This is a problem with the reflexes of emotion, not necessarily related to the person’s mood at the time. A low dose of a tricyclic antidepressant may be beneficial for this symptom (known as involuntary emotional expression disorder, or IEED). A recent medication (Neurodex) has been shown to be effective for this disorder but is not yet FDA approved.

Patients in the pediatric age group not only have to deal with their MS disease course, but also with the issues of growth and maturity, schooling, and peer relationships. A careful analysis of how the child with MS is doing at home and at school is key to understanding any cognitive issues that might occur.

Tremor

Some people with MS develop tremors, often affecting the arms. They may have trouble reaching for things or handling objects, and this may affect day to day function. Sometimes this tremor is what is known as an action tremor, where the tremor is worse with holding the hands out and not as bad with use. This can be helped with medications such as beta-blockers and mysoline, and sometimes by reducing caffeine use.

Another tremor which is more difficult to treat is an intention tremor. This is a tremor that is worse when one is trying reach for objects, and the hand being used swings from side to side. This is more a problem with coordination than a tremor. As with other problems, reviewing medications is useful and may help uncover something that is worsening the tremor. Occasionally wearing light weights on the wrists (i.e. 1 pound strap on weights) may reduce the amount of tremor. There are no medications which have been reliably shown to reduce this tremor. Medication which have been used for such tremors in the past include primidone (Mysoline), clonazepam (Klonopin), topiramate (Topamax), levetiracetam (Keppra) and others. There are case reports of using a deep brain stimulator for such tremors in MS patients. For leg tremor therapy, tai chi, and occasionally therapeutic horseback riding have been used with some success.

Again, there is limited data on treatment with these agents in the pediatric MS population. Case reports have suggested that such tremors may improve spontaneously in this age group. Care must be taken to avoid overmedicating this young population, particularly since such medications as are listed above may affect learning and memory at times.

Bowel and bladder disorders

People with MS may have problems with the control of the bladder or bowel. Both of these are under the control of the nervous system and signals to and from these structures go through the spinal cord before they arrive at the brain. The most common bladder symptoms for MS include urgency, a feeling that you have to go right away, and hesitancy, when you get there you have to wait for things to happen. Some people find that they have accidents either during the day or night, and may not realize when they have to go to the bathroom. Similarly with bowel, people may have urgency, hesitancy, altered sensation, and occasional accidents.

At the Mellen Center our advanced practice clinicians (nurse practitioners and physician assistants) have develop a counseling program specifically aimed at improving bowel and bladder function. Below are some of the patient education points that are reviewed in this program:

Patient education for bladder:

• Continue to drink 1 1/2- 2 quarts of fluid a day
• Caffeine, aspartame, alcohol and cigarettes are bladder stimulants and should be avoided
• Drink fluids all at once, i.e., drink 6-8 oz. at a time. If you sip, sip, sip you will feel the urge to urinate, urinate, urinate
• Try to void about 1 ½ -2 hours after you drink
• Stop drinking fluids about 2 hours before bedtime
• Void right before bedtime

Patient education for bowel management:

• The goal is a comfortable bowel movement either every day, every other day or every 2 -3 days
• For regular bowel movements you need fluid (1 ½-2 quarts a day), fiber (20-30 grams a day) and activity
• 1/3 cup fiber one, all bran or 100% bran buds gives you half the fiber you need for the day
• Greasy foods, spicy foods, or food intolerances (lactose) may cause loose stool and may result in involuntary bowel
• Eat regularly for regular bowel habits
• If necessary, use a glycerine suppository daily
• Plan for a bowel movement each day about ½ hour after eating or drinking something warm (the activity of the bowel nervous system is increased at this time)
• Sit on the toilet about 10 minutes and try to have a BM. You may want to gently rock back and forth on the toilet. If nothing happens, leave the bathroom and try again later
• It may take 2-3 months to develop a pattern for bowel habits

Disease Modifying Agents

Since the first FDA approved medication became available in 1993, a total of 6 medications have been FDA approved for use in multiple sclerosis. Each of these medications in some way alters the course of MS. Each medication is available in injection form only. In general the medications reduce the frequency of exacerbations of MS, reduce the amount of activity seen on MRI scanning, and may slow progression of MS.

Each medication has its own side effects and risks. All of the approved medications have information materials to guide patient education provided by the manufacturer. In addition, the National Multiple Sclerosis Society provides information on all of these medications:

• Interferon beta-1a weekly (Avonex)
• Interferon beta-1b every other day (Betaseron)
• Interferon beta-1a three days a week (Rebif)
• Copolymer (Copaxone)
• Mitoxantrone (Novantrone)
• Natalizumab (Tysabri)

In general, one of four medications is used as a first choice medication for MS: interferon-beta-1a (Either in an intramuscular once a week dosing or in a subcutaneous three times a week dosing); interferon-beta-1b (every other day subcutaneous dosing); and copolymer (daily subcutaneous dosing). In large research trials in patients with relapsing MS, each of these medications showed a similar reduction of attack frequency which was the primary measure of effect in these trials. Each differs in the frequency and route of administration, as well as in the side effect profile.

For example, the interferons in general may cause flu-like symptoms (fever, chills, muscle aches, fatigue) after each injection. This side effect may be treated with medications such as acetaminophen or ibuprofen, and in general tends to become less over time. Copolymer tends to give injection site reactions such as swelling, redness, itching, and occasionally an atrophy of the tissues under the skin at the injection site causing indentation of the skin. The interferon medications require monitoring of blood work every 3-6 months to ensure that liver function and blood counts do not change significantly. Interferon-beta-1b may rarely cause a breakdown of the skin at the injection site which requires the medication to be stopped. All of these medications have been used in thousands of patients over years and have a good safety record. Rare side effects of the interferons include immune inflammation of the liver, altered kidney function, and occasionally an increase in symptoms of depression. In general copolymer does not have major risks other than skin reactions.

None of the currently available medications for MS have been tested in large studies in the pediatric age group. However the standard agents listed above have been used in pediatric patients with similar side effects to adult patients and apparently with benefit. Small case series of each treatment have been published. While these cannot definitely document a clinical effect of the medications, they do seem to mirror the adult response to these medication in terms of side effects and reduction in relapse rate. Dosing schedules vary and the specific dose of each medication at different times in childhood is unclear.

Mitoxantrone and natalizumab are powerful medications which are usually reserved for patients with more severe MS or MS that does not respond to standard front line agents. Both have significant side effect profiles. Neither has been extensively tested in the pediatric population to date.

Other medications have been used in MS that are not FDA approved at this time. For example, sometimes medications that alter the immune system are added to one of the standard agents. Azathioprine, methotrexate, mycophenolate mofetil, and other agents have all been used either alone or in combination with standard injectable agents. These are usually used when the injectable agent alone does not seem to be effective. Again there are limited case reports of use of such agents in childhood. Choosing to do this is complex and should be done by a physician experienced in treating MS.

There are other medications which have been used from time to time in MS, usually after other standard agents have failed. IVIG is a blood product that in some studies was shown to be helpful in relapsing MS. Cyclophosphamide is a chemotherapy which has been used on and off in MS for many years and which may be used in difficult to treat MS. Rituximab is an antibody treatment that recently has been shown to have a powerful effect in multiple sclerosis, but with a risk of causing infections due to suppression of the immune system. All three of these medications are used under the guidance of a physician experienced in the care of patients with multiple sclerosis.

Plasmapheresis is a technique of cleaning antibodies out of the blood stream. It has been used in a number of neurological and immunological diseases. A recent study showed that plasmapheresis is helpful for patients with a severe attack of MS not responding to standard steroid therapy. It requires specialized equipment and is not generally used as a long term treatment.

Pediatric Multiple Sclerosis (MS) - Team

The multiple sclerosis (MS) team of caregivers for pediatric multiple sclerosis generally consists of:

• Pediatric Neurologists
• Multiple Sclerosis Neurologists
• Pediatric Neurogenetics
• Rehabilitation specialists (physiatrists)
• Advanced practice clinicians (nurse practitioners and physician assistants)
• Neuroradiologists
• Neuropsychologists
• Social workers
• Psychologists
• Occupational therapists
• Physical therapists
• Vocational rehabilitation specialists
• Registered dietitians
• Speech-language pathologists

Pediatric Neurologists

A pediatric neurologist is a medical specialist trained to evaluate problems of the nervous system as they affect infants, children and adolescents. Pediatric neurologists have an in-depth understanding of neurodevelopment and pathology of the nervous system, and as well have training in the unique challenges of children with medical illnesses. At the Mellen Center program for pediatric multiple sclerosis the pediatric neurologist’s role is to help identify patients with pediatric MS. They connect with families and patients in guiding them in terms of diagnosis, counseling, and helping develop a treatment and therapeutic plan.

At the Pediatric Neurology Center Dr. Manikum Moodley has a special interest in the diagnosis, management and counseling of children with multiple sclerosis. He is dedicated to the diagnosis and care of this important group of people.

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Multiple Sclerosis Neurologists

A neurologist is a medical specialist trained to evaluate problems of the nervous system, including the symptoms of MS. Neurologists have an in-depth understanding of the central nervous system and how it is affected by multiple sclerosis. Ideally, it is helpful if the neurologist is affiliated with an MS center, research facility, or a teaching hospital. The neurologists at the Mellen Center specialize in the diagnosis and treatment of multiple sclerosis and related disorders. Neurologists:

• Diagnose MS
• Make recommendations for treatment, testing, and symptom management
• Are available to answer your medical questions, sign forms, fill prescriptions, and provide help with disability-related issues
• May initiate courses of care for MS including disease modifying therapies, treatment for attacks, symptom management, and referral to other members of the team for treatment and counseling
• At the Mellen Center Dr. Mary Rensel has a special interest in the diagnosis, treatment, and counseling of children with multiple sclerosis. She is dedicated to seeing that such patients have a coordinated plan for care that takes into account developmental, psychological and educational needs of this important group of people. Dr. Mary Rensel and Dr. Manikum Moodley work as a team with several medical and other allied medical personnel to provide optimal clinical care to all children afflicted with multiple sclerosis.

A consulting neurologist makes recommendations to your local doctor or neurologist for treatment, testing, and symptom management.

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Pediatric Neurogenetics

Children with central nervous system disorders present unique challenges to clinicians working with them. They may have symptoms that are different from adults with multiple sclerosis. They have to deal with growing up and going to school while having an ongoing, potentially difficult medical illness. There are few studies of medications in the pediatric MS population. In addition, there are other diseases of the central nervous system that may look like MS but which require different treatment plans. A pediatric neurogeneticist is a clinician who is expert in diagnosing inherited disorders of the nervous system. There are diseases in children that may affect the white matter in ways that mimic MS, but which respond differently to treatment than MS. The pediatric neurogeneticist will assist in the proper diagnosis of people with such problems as well as their care.

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Rehabilitation Specialists (Physiatrists)

At the Mellen Center rehabilitation specialists work closely with the neurologists and other team members to provide high quality rehabilitation services to people with multiple sclerosis as well as to other patients with disorders causing spasticity, balance disorders, and leg weakness. The physiatrists evaluate patients for treatment needs, develop plans of care, and monitor their progress. They are involved in treating patients using Baclofen pumps and Botox injections. They are involved in research using new rehabilitative devices to improve movement. They oversee the provision of physical therapy and occupational therapy at the Mellen Center. At the Mellen Center rehabilitation is fully integrated into the care of the patient. Occasionally children with MS will require their services as part of their overall care plan. In general this will be set up by their MS neurologist.

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Advanced Practice Clinicians

Advanced practice nurses (APNs) are clinical nurse specialists, nurse practitioners, and registered nurses with additional education (certification or master's degree) and expertise in a specialty area or clinical practice.

Physician assistants are specialists that undergo a specific training program to enable them to work with physicians in an area of clinical practice. Together, APNs and physician assistants can be considered advanced practice clinicians and are an integral part of the Mellen Center’s health care team.

Working independently and in collaboration with a doctor, advanced practice clinicians are able to provide a wide variety of services. APCs who treat people with MS provide many health services including:

• Patient and family education about MS and related problems
• Ongoing assessment and management of MS symptoms
• Counseling on general health maintenance and wellness
• Information about medicines and monitoring side effects
• Education in the management of bowel, bladder, or other personal care issues
• Guidance in determining when change might be needed in the treatment plan
• Administration and monitoring of medicines according to treatment and research protocol
• Coordination of outpatient care with home care services
• Consultation to health team members as well as outside providers
• Speaking at community programs about MS and related topics

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Neuroradiologists

At the Mellen Center we have integrated neuroradiology into the care fabric of our center. Our neuroradiologists provide us with state of the art imaging, using the latest in MRI technology to allow us the best evaluation of the brain and spinal cord. Our neuroradiologists are at the forefront of their field in terms of research and imaging technology. They are based in the Mellen Center so that there is a constant interplay between the clinicians and the radiologists at the center. Because MRI imaging is so key to the diagnosis and management of MS, we believe that having neuroradiologists on site allow us to do the best work we can to care for our patients. Particularly for the pediatric MS population, getting the best imaging helps in making a difficult diagnosis.

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Neuropsychologists

Measuring and evaluating the cognitive and emotional state of people with MS is often an important part of MS care. At the Mellen Center we use neuropsychologists to do a detailed evaluation of cognitive function when it becomes clear that problems in this area are interfering with the patient’s life or the relationship with family. In addition, neuropsychological measurements may aid in determining problems of neurological development, adjustment to illness, and potential problems with school performance and success. Such information helps guide counseling, therapy, and sometimes medical treatment. It also helps us guide patients and families better in their care decision-making.

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Social Workers

Social workers provide personal support to people with MS and their families by offering:

• Short-term counseling and referrals for ongoing counseling
• Information about home care assistance services and assistive devices
• Recommendations of community resources, and local and national agencies that offer both information and support for people with MS and their families
• Financial resource information such as Social Security disability, supplemental security income, Medicaid, Waiver 4, and PASSPORT financial assistance programs
• Information about quality of life issues including living wills and durable power of attorney for health care

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Psychologists

Psychologists are available to help people with MS cope with the cognitive, emotional, and interpersonal aspects of the disease. They offer:

• Psychological evaluation of emotional and interpersonal problems
• Individual psychological counseling sessions to reduce emotional distress and improve stress management skills
• Group psychological counseling to develop strategies for coping with the illness and the resulting life changes
• Neuropsychological testing to determine if MS is affecting cognitive functions such as attention or memory

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Occupational Therapists

Occupational therapists analyze how MS affects the way people perform their daily tasks, help them learn new ways to do familiar activities, and prescribe proper seating as needed. Occupational therapists assist individuals in maximizing their level of functional independence. They offer:

• Individualized treatment through appropriate exercise and adaptive equipment, following an accurate assessment of each patient’s current level of functional performance
• Ongoing evaluation and appropriate treatment strategies to optimize the range of motion and muscle strength of patients’ upper extremities (arms and hands) to help them successfully complete activities of daily living such as dressing, eating, toileting, and bathing

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Physical Therapists

Physical therapists are available to assess muscle strength, flexibility, coordination, balance, endurance, walking ability, and mobility. They specialize in:

• Improving function and providing instruction on managing physical disabilities
• Recommending appropriate exercises to maintain flexibility, while preventing and reducing pain
• Providing instruction regarding the use of assistive devices, braces, or other mobility aids to maximize independence

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Vocational Rehabilitation Specialists

A satisfying work life is as important to the person with MS as to anyone. For people with MS, finding work that matches their skills, interests, and abilities can be especially challenging.

• Recognizing their skills and abilities
• Exploring new careers
• Locating jobs
• Preparing for interviews
• Developing safe work sites
• Coping with work-related issues
• Learning the many resources available for making career choices

Assessing an individual’s needs is the first step in vocational rehabilitation. Information from the assessment helps the patient and the counselor make the best use of vocational services. During the initial interview, a counselor reviews the person’s educational, work, and medical histories and assesses any factors that might affect his or her ability to work. A vocational evaluation also measures the person’s general abilities, and specific needs and interests. After the consultation, the individual might be referred to other services or community resources.

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Registered Dietitians

Registered dietitians provide nutritional counseling through diet management to promote good nutrition while preventing malnutrition. They are available to:

• Assess each patient’s nutritional needs based upon the progression of the disease
• Recommend changes in each patient’s diet to assist in the treatment of MS
• Develop individual care plans for each patient to promote a good nutritional status
• If necessary, provide calorie and protein supplements to increase daily caloric and nutrient consumption
• Adapt the consistency of foods and liquids if swallowing becomes difficult

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Speech-language Pathologists

Speech-language pathologists can help people with MS maintain as many verbal communication skills as possible. They also teach techniques that conserve energy, including non-verbal communication.

• Evaluate and treat speech disorders and communication problems
• Assess swallowing problems to provide assistance with eating and drinking
• Recommend appropriate communication technologies to provide treatment that will aid in the success of daily activities

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