Teen/Young Adult Handbook A publication of the GBS/CIDP Foundation International Thank you to the following people who helped author this booklet: Kevin Rothberg, Penn State University intern, Summer 2007. Josh Baer, former GBS patient and e-mail teen contact. Dr. John Sladky, Emory University, who validated the medical information. A teen/young adult e-mail contact is available: Arielle Challander 413 Shawn Drive Traverse City, MI 49684 213-946-7256 E-mail: [email protected] Arielle had GBS in 2006 at age 13. She is willing to share experiences that others might not understand. To have a teenager GBS’er pen pal, write, call or e-mail to Arielle. We thank “Team Charlotte,” an activity of our Charlotte, North Carolina chapter for partially funding this project. DEALING WITH GBS AND CIDP So you’ve just found out that you have Guillain-Barré Syndrome (GBS) or Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Most likely you have never even heard of these conditions before and don’t know what to expect. Don’t worry, that is the purpose of this book - to teach you things you need to know about GBS and CIDP. You need to remember that you are not alone when you face these disorders. Even though GBS or CIDP have become a part of your life it does not have to be the center of it. This book has been written to help you work with your doctors, nurses, therapists and parents to learn how to manage GBS and CIDP, gain control, and become an independent person at an important point in your life. Managing a Disorder Three things are necessary to manage this neurological disorder: They are: Knowledge - of how your disease affects your body Skills - to take care of yourself and to talk to your doctor about your disorder Plans - about dealing with your own feelings and how to cope with your condition The goal of this book is to help you master these skills. What is GBS? Guillain-Barré (Ghee-yan Bah-ray) Syndrome is a disorder of the nerves outside of the brain and spinal cord. Some of the characteristics of GBS include the quick onset of weakness and, often paralysis of the legs, arms, breathing muscles and face. GBS is the most common cause of quickly acquired paralysis in the United States today. GBS usually begins with weakness and/or abnormal sensations in the legs and arms. GBS may also affect muscles in your chest, face and eyes. At some point you will probably have to be in the hospital. Sometimes the muscles that you use to breathe get weaker, and a machine is used to help you breath. GBS can affect people in different ways. Some people hardly have any symptoms, while others can become very ill. 4 Most people recover, but it may take time. Sometimes months of hospital care is required, and it is hard to tell what type of recovery people might make. The majority of patients return to a normal lifestyle within around six months. What Causes GBS? The cause of GBS is not well understood. Most cases come after a sore throat, cold or diarrhea. Some believe that the body’s immune defense system of antibodies and white blood cells are triggered by the infection into damaging the nerves. This would lead to weakness and the abnormal sensation. These are believed to be possible causes of GBS. How is GBS Diagnosed? Most of the time the symptoms that you have, along with going to the doctor, are enough to show that you have GBS. That quick onset of weakness and those abnormal sensations are common. To really be sure and confirm if you have GBS, the doctor will administer a lumbar puncture. This is when the doctor inserts a needle into your lower back and takes a sample of the fluid that surrounds your spinal cord. This test may help to determine whether you have GBS. A doctor might also test your muscles and nerves to see if they are working the right way. Both of these tests will give the doctors a clear idea if you have GBS. How is GBS Treated? At first, GBS might be unpredictable. Because of this, most newly diagnosed patients go to the hospital. The goal is to make recovery as fast as possible. Most patients after a hospital stay are candidates for a rehabilitation program. This will help you learn how to use your muscles as your nerves get back to working correctly. Treatments of GBS Hospitalization: Patients are hospitalized because symptoms come rapidly and can worsen quickly. Many patients are in Intensive Care and can be hospitalized for up to a month or longer. During a hospital stay doctors might perform a variety of tests to find out what is really going on. Some of these tests are painful, but it is important to know that every one of them is being done to help you. 5 Plasma Exchange: Plasma Exchange is when blood is removed from the body, the liquid part is separated and the blood cells are returned to the body. This procedure is used to shorten the course and eliminate the severity of GBS. IVIG: IVIg is a plasma product formed by taking antibodies from about 20,000 donors and mixing them together. These have proven effective in several immune system disorders, including GBS. IVIg therapy is when gamma globulins are administered intravenously in order to reduce the severity of an attack. These globulins are proteins naturally produced by the immune system. Physical Therapy And Occupational Therapy: Physical Therapy (PT) and Occupational Therapy (OT) are very important in patient’s recovery. Some people need more than others, but in the end PT/OT is what will help you get stronger. PT/OT and regular exercise are needed throughout the recovery period to strengthen the weakened muscles. The therapy program can be made to fit your specific needs. What is CIDP? CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) is a rare disorder of the nerves outside of the brain and spinal cord. It is characterized by weakness that may increase over time. It is caused when the covering of the nerves (called myelin) is damaged. The weakness usually occurs over two or more months. What Causes CIDP? The body’s immune system which normally protects it thinks the myelin is not supposed to be there and attacks it. What starts this process is not clear. Some patients are found to have abnormal proteins in their blood, and these may start the damage. How is CIDP Diagnosed? The patient with CIDP usually has trouble walking, which gets worse over a few months. Patients can experience tingling or other weird sensations if the myelin that surrounds the nerves that controls your senses is damaged. A physical examination will usually show the loss of reflexes, such as the knee and ankle jerk. An evaluation by a neurologist will often include an electrical test, called a nerve 6 conduction electromyography study. It may show slowing of conduction of electrical signals or blocked conduction. These findings are often seen in CIDP. A lumbar puncture is taken to analyze the spinal fluid and will typically show elevated protein which may help confirm the diagnosis. How is CIDP Treated? Treatment of CIDP is somewhat of an art. If a patient shows good improvement with an initial treatment but again shows weakness, the treatment may be repeated or another therapy may be tried. Several treatment options are available for people with CIDP. Prednisone: Similar to protective anti-inflammatory corticosteroids that are normally made by the body, prednisone may be used as an initial treatment for several reasons. It often improves strength, can be conveniently taken by mouth and is inexpensive. IVIG: High dose intravenous immune globulins (IVIG), are protective blood proteins obtained from healthy volunteers and can be readily given through an arm vein. For more information on IVIG look to the earlier section on treatment of GBS. Plasma Exchange: (PE), or plasmapheresis, is when some of the patient’s blood is removed and the blood cells are returned without the liquid plasma portion of the blood. It may work by removing harmful antibodies contained in the plasma. For more information on plasma exchange look to the earlier section on treatment of GBS. Working With Your Doctor When people go to the doctor they expect the doctor to make them better. They don’t always realize that in order to get better they have to play an active role in the recovery process. When you have GBS or CIDP you will need to work with your doctor. Your doctor will need you to do three things: • Take your medications as directed and let your doctor know about any side effects • Solve any problems that could keep you from taking your medication • Keep track of any symptoms you have and report them to your doctor 7 By following this guideline, you can both work together to create a good treatment plan. Sometimes people also do not believe that medications will make them better, or make the symptoms go away. It usually takes awhile for medications to work, so you have to give it time. Coping With GBS and CIDP The teen years are definitely a difficult time to deal with a rare disorder! At a time when it’s normal to be concerned with how you look, it can be hard to feel different. All teenagers who have an illness want to lead a “normal” life where they don’t need medicine, have any limitations, or have to take care of themselves in any special way.