Pediatric Multiple Sclerosis

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Pediatric Multiple Sclerosis

  1. 1. Pediatric Multiple Sclerosis What are the symptoms of multiple sclerosi? Pediatric multiple sclerosis (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 (or an attack, or a relapse). In other people with MS, there may be a tendency to progress in which symptoms gradually worsen over time (months to years). Sensory symptoms Motor symptoms Other symptoms (changes in sensation) (changes in motor function) numbness weakness heat sensitivity tingling difficulty walking fatigue other abnormal tremor emotional changes sensations (“pins bowel/bladder problems cognitive changes and needles,” pain) poor coordination visual disturbances stiffness dizziness 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
  2. 2. Primary progressive: Gradual onset from We know that there is a genetic component to the beginning, no attacks. This seems to MS. Having a mother or father with MS occur in the older adult age group. increases the risk of having MS to about 3% to 5% lifetime, and having an identical twin with Progressive relapsing: This is a rare form, MS increases the risk to about 30%. However, and begins with a progressive course, many people with MS have no close family while later developing attacks. members with the disease. Fulminant: Very severe, rapidly progressive There is nothing that an individual with MS MS. This is a rare form of MS. either did to cause the disease to happen or can do to stop the disease from following its Most pediatric cases of multiple sclerosis are natural course. We know that emotional of the relapsing-remitting variety. Some stress may increase the symptoms of MS. We children do well, with long periods of time also know that attacks of MS are more likely between relapses. Some seem to have a more after infections. There does not seem to be rapidly progressive course. any association with physical trauma or surgical procedures and MS, nor do these What causes or risk factors are associated seem to make MS worse. with multiple sclerosis? There has been extensive research on MS over How is MS diagnosed? What tests are used? the past 50 years. While we still do not know Multiple sclerosis is often difficult to the cause of MS, we do know that it is an diagnose. This is because there is no single inflammatory disorder of the central nervous test or finding on the examination that makes system that occurs in people with a tendency the diagnosis and because the disorder varies to such a problem. We know that about from person to person. In most cases there is 350,000 people in the United States have MS, a history of neurological symptoms that come about one in a thousand people. We know and go over years. The neurological that it is more common further north and examination may show changes that suggest south of the equator, though we are still problems with the spinal cord or brain. The unsure why this is. MRI may show areas of abnormality that suggest MS, though the MRI in itself does not Females tend to get MS about 3 times as often 'make the diagnosis.' Spinal fluid testing may as males, a rate which is similar to other show that the immune system is active in and immune diseases. In children, this ratio may around the brain and spinal cord, supporting be even higher, with most of the patients the diagnosis. Evoked potentials may assist in being female. Girls with MS are more likely to diagnosis. All of these need to be put together have initially sensory symptoms (e.g., by the physician to determine if MS is the numbness and tingling) than boys. In actual diagnosis. addition, girls tend to recover more from their initial episode of MS than boys do. Even when all the tests are done, some people cannot be diagnosed for years after the MS is more common in Caucasians, but can beginning of symptoms. An international occur in other populations. It is not panel of MS experts recently revised the ways contagious nor is it infectious. There may be that MS is diagnosed, providing a framework a link with reduced vitamin D levels and for clinicians to use in making the diagnosis. perhaps with decreased sun exposure. In These new diagnostic criteria (The McDonald children with MS, there may be an increased criteria) allow the diagnosis of MS if MRI link with exposure to Epstein-Barr virus. Most scanning shows new lesions forming over people with MS are diagnosed after the age of time, making even earlier diagnosis possible. 18. Only about 3% to 5% of all MS patients Even with these advances, there are some have symptoms beginning in childhood. people where the diagnosis may be uncertain
  3. 3. for years, due to the complexity and variation the patient's specific needs. In addition to of MS. elements recommended by each member of the Mellen Center team, a care plan also may In the pediatric age group, diagnosis is even include specific components requested by the more complex than for adults. This is because patient, family members or a family doctor. there are a large number of disorders that occur in childhood that may mimic MS. For Follow-up visits are scheduled with one of the example, acute disseminated clinical nurse specialists or physician encephalomyelitis (ADEM) is more common in assistants who will evaluate the current childhood and may be confused with MS. medical status and discuss treatment plans Treatment for this disorder is different from and options with the patietn and one of the MS in that ADEM is usually a one-time illness, Mellen Center physicians. Additional and does not require treatment after the initial appointments may be scheduled with a acute episode. physical or occupational therapist, a psychologist, or a social worker, if necessary. There are a variety of rare diseases, some genetic, some infectious, some due to other Team members meet regularly to discuss the illnesses, that need to be distinguished from individual's progress and fine-tune care plans MS. Expert evaluation of the clinical history as needed. Team meetings are an effective and physician examination, MRI appearance, means to monitor the flare-ups and cerebrospinal fluid, and other diagnostic remissions that are characteristic of MS. Team testing is key to differentiating these other members help patients and their families disorders from MS. prepare for these changes. Factors which seem to predict a second attack of MS in children include optic neuritis, age How is multiple sclerosis treated? greater than 10 years, or an MRI suggestive of Disease modifying agents MS with multiple well-defined periventricular Since the first FDA-approved medication or subcortical lesions. became available in 1993, a total of six medications have been FDA approved for use in What is the Mellen Center approach to multiple sclerosis. Each of these medications in treatment? some way alters the course of MS. Each At the Mellen Center, patients may meet with medication is available in injection form only. one or more members of the care team, depending on individual needs. On the first In general, the medications reduce the visit, patients typically meet with a frequency of exacerbations of MS, reduce the neurologist, who is primarily responsible for amount of activity seen on MRI scanning, and managing the patient's medical care. At future may slow progression of MS. Each medication visits, patients will also meet with a clinical has its own side effects and risks. All of the nurse specialist or a physician assistant who approved medications have information will discuss any concerns about MS and offer materials to guide patient education provided suggestions for special problems related to the by the manufacturer. In addition, the National disease, including spasticity, pain, bowel, Multiple Sclerosis society provides bladder or skin problems. The clinical nurse information on all of these medications at the specialist or physician assistant works closely following website: with the neurologist to carry out the individual's care plan. http://www.nationalmssociety.org/site/PageServ er?pagename=HOM_LIVE_treatments#modify After a thorough medical history and complete physical evaluation, the Mellen Center team Each of the manufacturers of these develops an individualized care plan to meet medications supports a website that has more
  4. 4. detailed information about the medication: site reactions such as swelling, redness, itching, and occasionally an atrophy of the Interferon beta-1a weekly (Avonex®): tissues under the skin at the injection site http://www.avonex.com/msavProject/avonex.p causing indentation of the skin. ortal?gclid=CI2ljoi-z40CFRlBgAodjE8HQg The interferon medications require Interferon beta-1b every other day monitoring of blood work every three to six (Betaseron®): months to ensure that liver function and http://www.betaseron.com/considering/index.jsp blood counts do not change significantly. Interferon-beta-1b may rarely cause a Interferon beta-1a three days a week breakdown of the skin at the injection site (Rebif®): which requires the medication to be http://www.mslifelines.com/rebif/index.jsp stopped. All of these medications have been used in thousands of patients over years and Copolymer (Copaxone®): have a good safety record. http://www.copaxone.com/?s_kwcid=copaxone Rare side effects of the interferons include |674753832 immune inflammation of the liver, altered Mitoxantrone (Novantrone®): kidney function, and occasionally an increase in symptoms of depression. In http://www.novantrone.com/patients/index.jsp general, copolymer does not have major Natalizumab (Tysabri®): risks other than skin reactions. http://www.tysabri.com/tysbProject/tysb.porta None of the currently available medications l?utm_content=NowAvailable&gclid=COnkmv for MS have been tested in large studies in y-z40CFQeWHgodiDPT6A the pediatric age group. However, the standard agents listed above have been used In general, one of four treatments is used as in pediatric patients with similar side effects a first-choice medication for MS: interferon- to adult patients and apparently with beta-1a (either in an intramuscular once a benefit. Small case series of each treatment week dosing or in a subcutaneous three have been published. While these cannot times a week dosing); interferon-beta-1b definitely document a clinical effect of the (every other day subcutaneous dosing); and medications, they do seem to mirror the copolymer (daily subcutaneous dosing). In adult response to these medications in large research trials in patients with terms of side effects and reduction in relapsing MS, each of these medications relapse rate. Dosing schedules vary and the showed a similar reduction of attack specific dose of each medication at different frequency which was the primary measure of times in childhood is unclear. effect in these trials. Mitoxantrone and natalizumab are powerful Each differs in the frequency and route of medications which are usually reserved for administration, as well as in the side effect patients with more severe MS or MS that profile. For example, the interferons in does not respond to standard front line general may cause flu-like symptoms (fever, agents. Both have significant side effect chills, muscle aches, fatigue) after each profiles. Neither has been extensively tested injection. This side effect may be treated in the pediatric population to date. with medications such as acetaminophen or ibuprofen, and in general tends to lessen Other medications have been used in MS over time. Copolymer tends to give injection that are not FDA-approved at this time. For
  5. 5. example, sometimes medications that alter CONTACT INFORMATION the immune system are added to one of the standard agents. Azathioprine, methotrexate, Toni Housiaux RN/BSN mycophenolate mofetil, and other agents have Pediatric Neurology all been used either alone or in combination S71 with standard injectable agents. These are Office 216.444.3578 usually used when the injectable agent alone Pager 28788 does not seem to be effective. Again, there are limited case reports of use of such agents in Physical therapy childhood. Choosing to do this is complex and Karen Vitak and Carrie Proch should be done by a physician experienced in M72 treating MS. Office 216.444.6572 There are other medications which have been Occupational therapy used from time to time in MS, usually after Pamela Pierson and Bridgette Samame other standard agents have failed. IVIG is a M72 blood product that in some studies was shown 216.444.6572 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 for 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. © Copyright 1995-2009 The Cleveland Clinic Foundation. All rights reserved.

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