Treating Infantile Spasms – #EpilepsyNYC Infantile Spasms Awareness Week

Infantile spasms is a potentially devastating early-onset epilepsy that affects infants, typically between three and nine months of age. Many cases of infantile spasms occur in children who are already have brain abnormalities, such as children with tuberous sclerosis, down syndrome, or brain injuries sustained as newborns. However, in about one third of affected infants, infantile spasms occur for no known reason.

There are three first-line treatments used for infantile spasms. Most pediatric neurologists select one of these three as the initial treatment.

First, adrenocorticotropic hormone (ACTH) is a naturally occurring hormone that is made by the pituitary gland. It stimulates the body to produce steroids. There are several versions of ACTH available throughout the world — in the US, physicians can prescribe a pharmaceutical grade purified ACTH for infantile spasms. ACTH must be given by injection into the infant’s thigh twice a day for two weeks, and then gradually tapered over the next several weeks. There are significant side effects. Many babies become very irritable when taking this medication. It increases their appetite, and some gain weight during treatment. ACTH can also increase blood pressure and, on occasion, lead to an increase in the size of the heart. These side effects fade after the medication is stopped.

Second, oral prednisolone is a corticosteroid, which comes as a liquid. This is the same medicine given for children with asthma attacks; although, for infantile spasms we use a higher dose for a longer period of time (usually several weeks). It can have the same side effects as ACTH, but these are usually less severe.

Third, vigabatrin is a medication that comes as a packet of powder, which can be disolved in water. The major worrisome side effect of vigabatrin is loss of peripheral vision. This is uncommon. Usually when vigabatrin is prescribed, the infant will also need to see an ophthalmologist to monitor for this potential side effect.

Current evidence suggests that ACTH has the best overall response rate. The one exception is that for children who have infantile spasms due to tuberous sclerosis, vigabatrin seems to work better.

First-line therapy works between half and three quarters of the time. If it fails, there is not good evidence to guide us on what to try next. Many physicians will switch to a different first-line agent. For example, if a child continues to have seizures after ACTH, the physician may try vigabatrin next. Rarely, a deficiency of vitamin B6 can cause infantile spasms, and many physicians will give infants this vitamin. Other physicians may try dietary therapy. For example, there is a diet called “the ketogenic diet” that avoids carbohydrates and sugars. This diet can lead to changes in how the brain makes fuel for itself, which can, in turn, reduce seizures.

In some cases, children with infantile spasms may have a subtle area of the brain which is abnormal, which is difficult to see on MRI scans. Some physicians will order other kinds of brain scans, such as a PET scan (positron emision tomography), in order to look for these kinds of abnormalities. This is important, because some infants benefit from epilepsy surgery to remove the abnormal area of brain.

Dr. Zachary Grinspan, MD
Weill Cornell

SUDEP Awareness Day 2015

What is SUDEP?

Sudden Unexpected Death in Epilepsy (SUDEP) is said to occur when a person with epilepsy dies unexpectedly and was previously in their usual state of health. The death is not known to be related to an accident or seizure emergency such as status epilepticus. When an autopsy is done, no other of cause of death can be found. Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled.

The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP.

 

How common is SUDEP?

• Each year, more than 1 out of 1,000 people with epilepsy die from SUDEP. However, it occurs more frequently in people with epilepsy whose seizures are poorly controlled.
• One out of 150 people with poorly controlled epilepsy may die from SUDEP each year.
• SUDEP takes more lives annually in the United States than sudden infant death syndrome (SIDS).
• Most importantly, SUDEP is the leading cause of death in young people with certain types of uncontrolled epilepsy.

Who is at risk for SUDEP?

The greatest risk factor for SUDEP is frequent seizures, especially generalized tonic-clonic (grand mal) seizures. Other risk factors being looked at include:

• Epilepsy beginning at an early age
• Having epilepsy for a long time
• Not taking medications regularly or as prescribed
• Stopping or changing medications suddenly
• Young adult age (20-40 years old)
• Intellectual disability (IQ<70)

How can one reduce the risk?

The best way to prevent SUDEP is to have as few seizures as possible. Get the best seizure control possible. This may involve actions such as:

• Taking medication regularly and at the right dose.
• Visiting your health care team regularly, especially if seizures are not controlled.
• If medicines do not work, consider other therapies such as epilepsy surgery, vagus nerve stimulation, or dietary therapy.
• Take good care of yourself or your loved one. Eat well, get enough rest and regular exercise, avoid drinking too much alcohol or using recreational drugs, and minimize stress when possible.
• Be aware of and avoid any potential seizure triggers whenever possible. Keep a record of things that occurred before a seizure (such as illness, tiredness, stress, missing medications, and where and when the seizure occurred).
• Talk to your doctor about having your heart checked (cardiac evaluation) to rule out any heart problems. This is particularly important for people with uncontrolled epilepsy who don’t have a cause for their epilepsy found on an MRI or other type of imaging study.
• Be seizure safe.  Make sure family and co-workers know what to do for seizure first-aid, take extra precautions around water, including swimming and bathing.

Speaking with your doctor about SUDEP?

If your doctor has not spoken to you about the health risks associated with epilepsy, you should ask him or her about SUDEP. Questions to ask may include:

• What risks do I or my family member have for SUDEP?
• What can we do to lessen the risk of SUDEP?

Source: EFA – SUDEP

Studio E for Teens NYC – Art Therapy

The Epilepsy Foundation of Metropolitan New York is excited to announce the first ever Epilepsy NYC Studio E Art Therapy for Teens!

Made possible through the generous support of Lundbeck, Studio E offers a unique way for people with epilepsy to socialize with others and open up honestly about daily challenges in a trusting, creative environment. Art therapy promotes self-expression and builds confidence. Recent studies have shown that Studio E improves quality of life and
self-esteem.

After the great success of the Annual Studio E Program hosted by EFMNY and supported by well-received public exhibitions, Art Therapist Melissa Diaz joins us once again to provide an 8-session group program, in the same open studio model, but now tailored specifically for teenagers with epilepsy.

 

WHO: Teens ages 15-19

WHEN: Tuesdays after school beginning in late October 2015
(8 sessions)

WHERE: Mount Sinai Beth Israel’s PACC at Union Square

 

 

To enroll or learn more please contact Katie Lorenzo at klorenzo@efmny.org or call us at 212-677- 8550.

The program is offered at no cost to participants. You must be 15-19 years old. Seating is limited and a phone interview with the art therapist is required.

My Epilepsy Story

I recall the day I had my first seizure very well. I was walking into the room where a school-wide mass was taking place when suddenly, as the music began, I became very anxious. Everything seemed to be in slow motion – even the music slowed down and I started to shake. I did everything I could to continue standing but the pain was too great. I slowly dropped to the floor. At one point, I thought I was dying (I thought this was the end). I woke up to the comforting smiles of my middle school’s vice-principal and nurse. My body was physically drained. They told me I had a seizure.

What was a seizure? For someone who had no bad medical history, why me? The shock of the diagnosis of Epilepsy was a bit overwhelming in and of itself, but then I had to learn all about it. All of it seemed so surreal. Over the next two years I went through countless seizure-drug combinations, some of which drastically changed my mood. At one point, brain surgery was discussed.

I was already struggling with anxiety but the diagnosis only made things worse. I constantly would wonder “When would my next seizure happen?” I was terrified. Seizures didn’t just affect me physically, they affected me emotionally and socially. During Middle School, I was nervous when I wasn’t around an adult. Also, I felt other students didn’t really understand me, some were even scared to have me around. There was always a sense of guilt and that I just caused ‘extra work’ for everyone; often I just wanted to disappear.

In the 9th grade I starting to become very socially withdrawn and didn’t feel accepted. I began to spend more time composing and engineering music, whether it be in the hospital, my room or a local studio. I caught a break and started working with major songwriters and recording artists, while continuing school. Throughout high school, I only had a few people I could confide in. There aren’t a lot of people who will understand those daily struggles. Most never saw the tears or the endless nights in the hospital.

When I graduated June 2014, my seizures were finally controlled by medication. I recently started college, focusing on graphic design, while continuing on music collaborations. I consider myself extremely blessed to have had great support from family, teachers, doctors and school nurses.

My dream is to create a career in the arts, one that will help inspire other struggling artists to persevere and push beyond the seemingly hopeless circumstances they sometimes face in life.

Growing-Up With Epilepsy and Learning to Speak Out at School and in the Workplace

Epilepsy is difficult to explain, describe and understand. People can only “see” epilepsy when someone is having a seizure. For many people with epilepsy, seizures are unpredictable and, sometimes, undetectable to others. In my case, most of my seizures have been tonic-clonic, or grand-mal, seizures. Tonic-clonic seizures are hard to miss. However, unless I’m having a violent seizure, no one would know I have epilepsy, until I open my mouth. I talk a lot about my epilepsy. Communicating with others about my epilepsy keeps me safe and helps me take control. As a person with epilepsy, I force myself to keep an open and honest dialogue with all of my medical professionals, my peers and my work colleagues.

I was five when first diagnosed with epilepsy after having absence, or petite-mal, seizures. At the time, I did not mind the epilepsy diagnosis because my seizures were not visible to me. Then, I learned I had to take monthly blood tests…with needles! I dreaded blood tests and I did not go softly or quietly into the pathology lab. It was stressful for me; every time I knew I was getting another blood test I would start crying and screaming. Finally, a lab technician took a moment to speak with me. I expressed to him my fear of needles. He offered to take my blood with a smaller needle he called a “butterfly,” and it would not hurt as much. I agreed to cooperate calmly. One conversation changed my entire attitude towards blood tests and my behavior at the lab. The recommended “butterfly” needle might have reduced the physical pain, but in hindsight, it was the technician who calmed me down by communicating with me and addressing my fears. At the age of six, I found power and control by openly communicating with all of my doctors and medical professionals.

My first tonic-clonic, or grand-mal, seizure happened when I was in junior high school. Epilepsy is a difficult thing to openly discuss, especially during those awkward adolescent years. After many in-class seizures, I realized it was difficult and scary for my peers to witness one of my seizures. So, I took responsibility, and talked openly about my epilepsy. There were some students who used my epilepsy as a way to bully and tease me. A few kids called me “seizure girl.” I endured other unpleasant instances of bullying targeted at my epilepsy. Fortunately, I did not care about the opinion of those who bullied me. They did not want to communicate; they wanted to attack.

My seizures were controlled during high school. Although my epilepsy wasn’t visible, my parents and doctors strongly encouraged me to continue to disclose my condition. I often had to explain to friends I did not go to concerts because most concerts have strobe lights, a trigger for seizures. After I turned sixteen, I knew communicating my health issues was a legal and ethical responsibility as a licensed driver.  I was becoming an adult and I needed to learn to talk about my epilepsy independently from my parents and pediatric doctors.

In my early twenties, I started having seizures, again. I was new to the New York City workforce and I knew little about how to talk about my disorder in the workplace. I never knew when to disclose my condition or who to disclose my condition to. As an adult, communicating about epilepsy, or any disability, in the workplace can be a grey area. I did not know if I should mention my epilepsy before or after I interviewed for a new job. Most companies do not encourage people to ask others their health issues, due to privacy laws. At twenty-seven, my epilepsy was uncontrollable and I needed to change my medications (AEDs). At the time, I was having seizures at work and felt devalued as an employee, even though I had a better attendance record than many of my colleagues. In fact, I had a superior criticize me via email for not drinking and socializing at an after-hours company event. I realized the people I was working with did not want to communicate openly and honestly about my epilepsy. Like the bullies in junior high, I stopped communicating with them. Instead, I communicated with my doctors and a lawyer. I filed for the Family Medical Leave Act. This provided me some short-term job protection. It also gave me a chance to stand up for myself against employers and colleagues who tried to exploit my condition as a weakness. My epilepsy is a neurological disorder, not a weakness.

I am still figuring out the best way to live and work openly as a person living with epilepsy. Luckily, I have connected with the Epilepsy Foundation of Metropolitan New York to learn more. The EFMNY provides tools to help facilitate communication and understanding about epilepsy. It provides New York City’s only specialized job development and vocational services program for people with epilepsy. Few people understand epilepsy and epilepsy’s far-reaching effects on a person’s life. So, as a person with epilepsy, I find it easier to tell others about my condition. People are sometimes afraid to ask questions about a disability or condition out of fear of being offensive or sounding stupid. So, I try to beat them to the punch and talk about my epilepsy first. It is important to help educate, explain and remove the stigma. I will never have complete control over my epilepsy, but I have complete control over my conversations about epilepsy.

-Alexandra DeBourcy, Mrs. Gotham City

Me and My Epilepsy – Mrs. Gotham City

My name is Alexandra DeBourcy and my epilepsy is a part of my life, my history and my future.

I was diagnosed with epilepsy at the age of five, when my parents noticed I was having “head tics.”  Shortly after starting my epilepsy medication, I stopped experiencing myoclonic tics. As a 5 year-old, I did not understand the full extent of my diagnosis, but I recognized a change in my lifestyle. At that very young age, I had to swallow non-chewable prescription medication, undergo many boring diagnostic tests and take monthly blood tests. The blood tests were the worst. Even at five, I knew my epilepsy diagnosis was changing my life.

Despite years of living seizure-free, one day during class when I was in the 7^th grade, I had my first ever grand-mal seizure. When I awoke, I was still in school, surrounded by working paramedics, as well as teachers and school administrators whose faces were filled with panic and fear. It took me a while to understand I had just had a seizure. At the time, I could only think about how my peers, who also witnessed my seizure, would judge me. Prior to returning to school, I called some of the students in class. It was easier to explain my epilepsy on a one-on-one basis. It helped. I don’t know if my phone calls helped any of my classmates, but it I do know it helped me. It gave me strength to face my schoolmates. I had more grand mal seizures in school during my adolescence, but I continued to open up and discuss my epilepsy with classmates and adults.

Luckily, I remained seizure free during high school and most of college, but my epilepsy was still a part of me. My parents and doctors reinforced the need for me to communicate my disorder to my friends, teachers and professors. No matter how long I went without a seizure, I had a different lifestyle than my peers. I was approaching the age where my actions, especially as a driver, had a greater effect on the lives of others. So, I continued to use communication, and levity, to introduce my epilepsy to other people.

After graduating from Syracuse University, I started having grand-mal seizures, again. This added additional considerations, as I was about to begin my career search. My epilepsy stabilized, and I moved to New York City. I loved New York City, and it had a public transportation system I could depend on. I was able to find work at an ad agency with an insurance plan. Since I had been denied a private insurance due to my pre-existing condition.

Unfortunately, I continued to experience seizures through out my twenties. I also experienced the Great Recession, the election of our first Black President, and falling in love with my husband. Eventually, my doctors and I decided to change medications. I had seizures at work. Some of my colleagues were empathetic; others were not. I sometimes felt stigmatized in my work environment. Due to privacy laws, it was hard for employers and colleagues to talk openly with me about my epilepsy.

Eventually, I left advertising. It was not the best career environment for my epilepsy. I decided to change careers and become a gemologist. My change in careers has allowed me to work in an environment more suitable for my epilepsy. I also work very happily with diamonds, gems and beautiful jewelry. It also has provided me with more time to devote to helping others with epilepsy.  I now have the chance to represent the Epilepsy Foundation of Metropolitan New York as Mrs. Gotham City in the upcoming Mrs. New York America pageant.

I have had to accommodate my epilepsy throughout my entire life and, many times, I have resented my epilepsy. However, the happiest times in my life occurred when I worked with my epilepsy without shame. It is embarrassing to have a seizure in school or at work. It is awkward to tell peers about a personal neurological disorder. Furthermore, it is difficult to disguise EEG electrodes for three days straight. So, as an epileptic, I know I can empower myself by starting the conversation on my epilepsy. I want to continue and expand the conversation with others living and affected by epilepsy. It is the best way I know to keep myself safe and happy. We need to discuss new treatments, gather community support and take the stigma away from epilepsy.

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