Kids with MOG

Sophia’s Story: A Caregiver’s Journey

April 15, 2022

Like birthdays and anniversaries, November 12, 2017 will forever be a date etched in my memory. My daughter, Sophia had a fever and fell asleep onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. my husband. It was so sweet that I took a picture. Little did I know this picture would represent the start of a long journey for our family, her headaches, confusion, anger, our countless trips to doctors’ offices, the Emergency Room and eventually, hospitalization. For the first seven years of her life, Sophia was a happy and healthy little girl. After her fever that November day, she started experiencing debilitating headaches and changes to her personality. She would have angry outbursts and spontaneously start crying. She was confused and forgetful. In the weeks that followed, her symptoms were dismissed by doctors as a sinus infection or migraines. My husband and I knew it was something more and fought hard to get her the care she needed. She was hospitalized at one point and given anti-migraine medicine and steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acuteThe severe and sudden onset of a disease process. attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acuteThe severe and sudden onset of a disease process. attack, but it is not recommended long-term due to the profound effects of chronic steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a child’s health. Use of oral prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) as a maintenance therapy in relapsing pediatric MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid DependencyMay occur for MOGAD patients when tapering to a lower dose of steroids causing recurrance of symptoms and may cause a relapse of new disease activity.). In hindsight, she improved each time she was onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acuteThe severe and sudden onset of a disease process. attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acuteThe severe and sudden onset of a disease process. attack, but it is not recommended long-term due to the profound effects of chronic steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a child’s health. Use of oral prednisoneA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD) it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammation. In adults, it is sometimes used in high doses for acute attacks. In some adult patients, it may be used for 1-2 months after an acute attack to avoid a rapid onset of relapse. Higher doses (>10mg/day) are not recommended for an extended period of time but lower doses (<=10mg/day) may be used in some patients longer term. In children, it may be used after treatment of an acute attack, but it is not recommended long-term due to the profound effects of chronic steroids on a child's health. Use of oral prednisone as a maintenance therapy in relapsing pediatric MOGAD patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid Dependency) as a maintenance therapy in relapsing pediatric MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease patients is discouraged due to side effects in developing children, and other therapies such as monthly immune globulin are suggested. (To understand relapsing during steroid tapering, see Steroid DependencyMay occur for MOGAD patients when tapering to a lower dose of steroids causing recurrance of symptoms and may cause a relapse of new disease activity.), but the effects were short-lived once her taper was finished. Sophia missed numerous days of school during this time. OnInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a day she was going back, she had a massive absent seizureA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness in our living room. Her entire body froze, and her eyes became fixated onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the ceiling. Somehow, I knew she was having a seizureA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness, but didn’t think to call 911. We carried her to the car and drove to the nearest hospital 10 minutes away. Watching our little girl seize in the ER while doctors frantically worked to stabilize her was terrifying. The sheets were soaked with blood from failed IVs. She seized off and onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. for what seemed like an eternity. As soon as she was stable, she was transported to a larger hospital. I realized the severity of the situation when the critical care team rode with us for the 20-minute ambulance trip. Sophia was in and out of consciousness for the next few days. An MRIA noninvasive imaging technique that uses strong magnetic fields to produce images of nearly any structure of the body. For MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , it is typically used with and without contrast to identify disease activity in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. confirmed encephalitisA disease in which inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. of brain tissue caused by an infection or an autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. response results in swelling and damage. When caused by an autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. disease, sometimes called Autoimmune EncephalitisEncephalitis caused by an immune attack on the brain (as opposed to viral encephalitis). Refer to encephalitis.., but they could not determine the cause. The head of the PICU sat us down and recommended we transfer to one of the teaching hospitals in the area. I will always be grateful to him for his candor about the complexity of her condition and his incredible empathy. We embarked onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. another ambulance ride, with the same critical care team, this time to

Abbie’s Story

August 31, 2020

Abbie was born a healthy baby. She met all her milestones early and was leading a normal life. She had her whole life ahead of her and we had no idea what was waiting for her. In August 2012, at age 4, Abbie’s health became extremely poor. She presented with sickness, weakness, no balance, and seizuresA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness, and slept for 23 hours. After several visits to the doctor she was admitted to the hospital. The doctors didn’t know what was wrong with her. After not being able to lift her head up from the pillow she was sent for an emergency MRIA noninvasive imaging technique that uses strong magnetic fields to produce images of nearly any structure of the body. For MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , it is typically used with and without contrast to identify disease activity in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. and lumbar puncture. Abbie was diagnosed with Acute Disseminated EncephalomyelitisAn initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients. (ADEMAn initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients.)An initial and brief autoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. attack that causes widespread inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. and damage to the brain, spinal cord, and optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness., typically in children. This initial attack establishes the basis for diagnosis. The MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients. which is triggered from a viral infection that attacks the brain and spine causing inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogenA microorganism that causes, or can cause, disease., and usually results in the desctruction and removal of the pathogenA microorganism that causes, or can cause, disease. and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG)A type of protein involved in cell adhesion. Present throughout myelin sheaths. by the immune system, resulting in damage to myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths.. We thought this would be a one-off attack. Abbie suffered with 3 attacks over 4 months and was in the PICU for 4 days. She was recovering from this illness for a long while and just as things were finally onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the up for Abbie her vision started to deteriorate. In 2017, she was registered partially sighted and diagnosed with Optic Atrophy which is damage to the optic nervesThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), they may be the target of inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. or lesions, sometimes causing visual disruption or blindnessAny alterations in your ability to see normally which may include blurred vision, cloudy vision, double vision, color change, seeing spots in your vision, or loss of vision. Vision changes may occur in one or both eyes. With MOGAD, vision changes are caused by optic neuritis... The doctor said this is secondary to encephalomyelitis. I wasn’t convinced that 4 years later she would now be losing her sight so I contacted Abbie’s neurologist as I was very concerned. They did an MRIA noninvasive imaging technique that uses strong magnetic fields to produce images of nearly any structure of the body. For MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , it is typically used with and without contrast to identify disease activity in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. and blood tests which showed inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogenA microorganism that causes, or can cause, disease., and usually results in the desctruction and removal of the pathogenA microorganism that causes, or can cause, disease. and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG)A type of protein involved in cell adhesion. Present throughout myelin sheaths. by the immune system, resulting in damage to myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths. onInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the brain and optic nervesThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), they may be the target of inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. or lesions, sometimes causing visual disruption or blindnessAny alterations in your ability to see normally which may include blurred vision, cloudy vision, double vision, color change, seeing spots in your vision, or loss of vision. Vision changes may occur in one or both eyes. With MOGAD, vision changes are caused by optic neuritis.. and she was positive for MOGA type of protein involved in cell adhesion. Present throughout myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths. antibodiesA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), the body incorrectly produces an antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. that targets myelin oligodendrocyte glycoproteinA type of protein involved in cell adhesion. Present throughout myelin sheaths., a component of the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheath in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve.. What this means is that every time Abbie gets an infection of any kind, it attacks her nerves and causes brain inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogenA microorganism that causes, or can cause, disease., and usually results in the desctruction and removal of the pathogenA microorganism that causes, or can cause, disease. and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG)A type of protein involved in cell adhesion. Present throughout myelin sheaths. by the immune system, resulting in damage to myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths.. Imagine an electrical cord and the plastic that covers it. The nerves in the brain are the electrical current and the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. is damaged, these impulses slow down. sheath is the plastic covering. MOGA type of protein involved in cell adhesion. Present throughout myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down.

Rylie’s Story

August 3, 2020

Rylie is an incredible 13 year-old girl. In her short life, she has endured more than most adults ever will. Despite the rough road she walks, she is kind, loving, and generous. She never complains about her illness, and takes the multiple needle pokes, tests and medications like a champ. She has shown amazing resilience, never giving up, despite the many struggles she has. She is always smiling, positive, and upbeat. She goes to school when she is sick, and maintains a strong academic footing, despite missing 60+days of school in the past year. This speaks to her character and drive. She is a walking, talking example of a miracle. She’s defied the doctor’s predictions at every turn. She is alive! She can walk, talk, has great cognitive function; all things that doctors said would be impossible just a few years ago Rylie’s early life started off almost like a dream! She could walk at 7 months old, speak in complete sentences by 1 year, and was incredibly bright. She met all of her milestones well before scheduled, and was very advanced for her age. Just before Halloween in 2009, Rylie was diagnosed with H1N1 flu. She was 2 years, 8 months old. She continued to get sicker and sicker and was finally admitted to the hospital, on November 2, 2009. OnInflammation of the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. that may be classified as unilateralRefers to disease or attack on a single side. (affecting one eye) or bilateralRefers to disease or attack on two sides. (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. November 4, 2009, Rylie became neurologically altered. She began having seizuresA sudden, temporary disturbance in brain activity that causes changes in behavior, movement, sensation, or consciousness and eventually quit breathing. During this time, the nerves in her brain and spinal cord were attacked by her immune system, and her brain became swollen to the point where she had a stroke, began seizing, then had to be intubated because she could not breath on her own, and was completely unresponsive. She was in a coma, and during this time the doctors gave her no chance of survival. She was diagnosed with Acute Disseminated EncephalomyelitisAn initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients. (ADEMAn initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients.)An initial and brief autoimmune attack that causes widespread inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths. and damage to the brain, spinal cord, and optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness., typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM)An initial and brief autoimmune attack that causes widespread inflammation and damage to the brain, spinal cord, and optic nerve, typically in children. This initial attack establishes the basis for diagnosis. The MOG antibody is detectable in a percentage of Acute Disseminated Encephalomyelitis (ADEM) patients. patients.. Despite her chances, thanks to many prayers and effective medicine, Rylie did survive. When she did finally come out of the coma, she was unable to sit up, crawl, walk, talk, or eat. She has been through extensive therapies (OT, PT, and speech) for several years, to help her regain her baseline skills. Since then, every time she gets exposed to a viral illness, she begins to decline. Typically, it starts off with speech, motor, and processing regression. She is unable to recall words like shoes, house, cup, etc. She doesn’t remember how to do simple things like open doors or zip her clothes. She falls down, runs into doors and walls, her legs will literally quit working and will often free-fall. She also begins to become extremely impulsive, agitated, and eventually aggressive. Until November of 2019, Rylie was being treated under the diagnosis of AutoimmuneA disease in which the immune system incorrectly targets and attacks an individual's own healthy cells. EncephalitisEncephalitis caused by an immune attack onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the brain (as opposed to viral encephalitisA disease in which inflammation of brain tissue caused by an infection or an autoimmune response results in swelling and damage. When caused by an autoimmune disease, sometimes called Autoimmune Encephalitis.). Refer to encephalitisA disease in which inflammation of brain tissue caused by an infection or an autoimmune response results in swelling and damage. When caused by an autoimmune disease, sometimes called Autoimmune Encephalitis... Rylie had been to the Mayo Clinic twice, Boston Children’s Hospital, and to a world-renowned Neurologist in Dallas. Unfortunately, none of these physicians had ever had a case like Rylie’s. Just recently, doctors were able to confirmed her diagnosis as MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. DiseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody DiseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , MOG Associated AntibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. Disease, MOG positive disease /Autoimmune Encephalomyelitis. This is a new test, only available in the U.S. for about the past two years. What this means is that every time she is exposed to a virus, her white blood cells attach to and attack the nerves in her brain and spinal cord instead of the virus. Basically, her immune system malfunctions, causing antibodiesA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. oligodendrocyte glycoproten antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. disease (MOGADOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease ), the body incorrectly produces an antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. that targets myelin oligodendrocyte glycoproteinA type of protein involved in cell adhesion. Present throughout myelin sheaths., a component of the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheath in the central nervous systemNerve tissue that resides in and composes the brain, spinal cord, and optic nerve. to attack the nerves and causes inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogenA microorganism that causes, or can cause, disease., and usually results in the desctruction and removal of the pathogenA microorganism that causes, or can cause, disease. and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease , inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG)A type of protein involved in cell adhesion. Present throughout myelin sheaths. by the immune system, resulting in damage to myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheaths. in her brain, in particular. Her neuropsychologist describes it like this: imagine an electrical cord and the plastic that covers it. The nerves in the brain are the electrical current and the myelin sheath is the plastic covering. MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. antibodiesA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. attack the myelinAn insulating layer, or sheath that forms around nerves, including those in the brain and spinal cord. It is made up of protein and fatty substances. This myelin sheath allows electrical impulses to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down. sheath, which lets the electrical signals out without any sense of direction. In order to suppress her over-active immune system, she is currently onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. a daily treatment of 2 types of oral chemotherapy. She also gets monthly, 3-day infusions of high dose IVA way of giving a drug or other substance through a needle or tube inserted into a vein. steroidsA type of medication typically given intraveneously or orally. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD)Often referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease it is used as an immunosuppressant and anti-inflammatory to reduce disease activity and inflammationA process of the immune system that involves chemicals released by immune cells (i.e. white blood cells) inducing localized heat, swelling, redness, and pain to an area that occurs when tissue becomes damaged or infected from a pathogen, and usually results in the desctruction and removal of the pathogen and/or healing to the tissue. In the case of myelin oligodendrocyte glycoprotein antibody disease (MOGAD), inflammation is the result of the incorrect targeting of the myelin oligodendrocyte glycoprotein (MOG) by the immune system, resulting in damage to myelin sheaths.. In adults, it is sometimes used in high doses for acuteThe severe and sudden onset of a disease process. attacks. In some adult patients, it may be used for 1-2 months after an acuteThe severe and sudden onset of a disease process. attack to avoid a rapid onset of relapseWhen you present to your doctor or hospital with new or worsening central nervous system symptoms. Generally, if your symptoms gradually worsen over 24-48 hours, there is heightened concern of a relapse. (Also referred to as a flare by the myelin oligodendrocyte glycoproten antibody disease (MOGAD) community).. Higher doses