Seizure Clusters: Unmet Needs & Emerging Formulations [Webinar]

This webinar is presented by the Epilepsy Foundation of Metropolitan New York and sponsored by a non-commercial, unrestricted grant from Aquestive Therapeutics, Inc. [November 23, 2020]

Preventing Breakthrough Seizures: You Can Do More Than You Think [Webinar]

A Disease-State Focused Webinar Presented by the Epilepsy Foundation of Metropolitan New York and Eisai Inc. [November 17, 2020]

I Can Spell Electroencephalogram (EEG)

Recently, my neurologist ordered an EEG test for my epilepsy.  EEG stands for electroencephalogram. An EEG records the electrical activity in your brain and it helps doctors detect abnormal electrical activity of the brain.  Most types of EEG tests are considered relatively painless.  However, like any medical test, from scheduling to prepping for the test, an EEG can always include some inconveniences and annoyances.  Anyone who has ever had to remove EEG glue from their hair, understands why I call an EEG  “relatively” painless.

I had my first EEG test shortly after I was originally diagnosed with epilepsy when I was six years old. When my parents told me I had to undergo a new test related to my epilepsy, my first question was: “Are there any needles involved?”  Luckily, my parents reassured me I would not be receiving a shot, getting an I.V. drip, or giving any blood.  Plus, since my doctor prescribed me a sleep deprived EEG, the test prep required me to stay up late, preferably all night.  Also, I got to miss a day of school, which was pretty cool! The next morning, my mother took me to my neurologist’s EEG lab.  I was placed on a hospital bed and the technician glued electrodes to my head.  After an hour of the technician asking me to breathe deeply and blink my eyes, they let me fall asleep. After I woke up, my electrodes were being removed from my head, and I returned home to go to bed.  After several sleep deprived EEGs, I realized my mom also had to stay awake all night with me and miss work the next day. While I got to fall asleep for four hours during my EEG, my mom remained awake speaking with the technician or doctor. Now, as an adult, I understand how much an epilepsy diagnosis affects the entire family, from diagnosis to treatment.

In my twenties, I underwent a medication change because I began having a lot of seizures, again. My neurologist prescribed me several 72 hour ambulatory EEGs.  For three days, I had a head full of glued-on electrodes. The electrodes were connected to wires, and the wires were connected to a small box recording the results.  I could go anywhere, as long as I was still connected to my EEG box and electrodes.  At work, I hid my electrode-covered head with a stylish beanie or scarf, allowing me to feel “normal.”  Unfortunately, by the end of the first 48 hours, my head was itching like crazy.  There was no beanie or scarf to alleviate my itchy head without removing the electrodes; but if these were to fall off, the EEG may have to be repeated!  Finally, after the 72 hours, I would return to my neurologist’s office to have the electrodes removed.

After any EEG, the inevitable issue of how to remove EEG glue arises. During this period of my life, I was not connected with the Epilepsy Foundation of Metropolitan New York, so I did not know the Epilepsy Foundation’s magic trick for removing EEG glue:

·       Add 5 to 7 crushed aspirin to half a cup of hot water to dissolve. Then, add 2 good size squirts of shampoo, 4 tablespoons witch hazel or seabreeze, and mix well together. Massage the mixture through wet hair and let it sit for about 15 to 20 minutes. Finally, begin to comb through your hair after an allotted time has passed. Rinse and use shampoo and conditioner as usual.

I have never had to undergo a video-telemetry EEG test, which requires a patient to spend days in a hospital wearing an ambulatory EEG box, while being recorded by a video camera.  Additionally, during a video-telemetry EEG test, epilepsy medications may be reduced or withdrawn, to increase the chances that you will have a seizure that can be recorded. So, while there are rarely needles involved, I would not dare to categorize all EEGs as “painless.”

My recent standard EEG lasted for one hour and took place at my doctor’s office.  It was the easiest EEG I had ever experienced.  But, like epilepsy, even the types of EEG tests can vary. Like any medical procedure, it is important to stay informed and well prepared for an EEG test. The information an EEG test provides is essential for doctors treating epilepsy.  Thankfully, this past EEG was totally painless because I finally knew how to remove EEG glue from my hair!

 

Infantile Spasms Awareness Week

Infantile Spasms (IS), also known as West Syndrome, is a rare form of age-specific epilepsy that usually presents itself in children within the first year of life. Early diagnosis and treatment of Infantile Spasms is of the utmost importance, and in many cases can ensure a more positive prognosis and a better quality of life, and significantly increases the chances of achieving reaching normal child development milestones.

Watch the videos below and check out our blog to hear a firsthand account of what it’s like to have a child with Infantile Spasms and to learn more about how Infantile Spasms (IS) are diagnosed, what signs to look for and what treatments are available.

In honor of Infantile Spasms Awareness Week, please share the videos below with friends and family in order to help us raise awareness about this rare form of epilepsy, and about the importance of early diagnosis and treatment.

Prognosis in Infantile Spasms – #EpilepsyNYC Infantile Spasms Awareness Week

Summary:

– The overall intellectual and neurodevelopmental outcome in children with infantile spasms is generally poor
– The long-term prognosis is directly related to the underlying cause of the seizures
– Better developmental outcomes are noted in patients without an identified cause (cryptogenic/idiopathic)
– Although the spasms tend to resolve by early to mid childhood, a majority of the children develop other types of seizures and epilepsies.
– There is a better outcome noted in those patients treated earlier in the course of their seizures, and in those that have an early and sustained response to treatment.

Infantile Spasms

The long-term prognosis of patients with infantile spasms has been studied extensively over the years. Many studies have examined the outcome of infantile spasms including neurodevelopmental and intellectual disabilities, prognostic significance of the EEG, and the development of chronic epilepsy.
The consensus of all of these studies is that the overall outcome, with regards to chronic epilepsy and neurodevelopmental disability is generally poor in patients with infantile spasms.

Chronic Epilepsy

Epileptic spasms usually resolve, latest by mid-childhood, in the majority of patients. Infrequently, spasms may persist in adulthood. Even if the spasms resolve, it has been found that 50-70% of the patients will develop other seizure types. Approximately 50% of the patients with a history of infantile spasms go on to develop chronic intractable epilepsy. There is a strong relationship seen between a history of infantile spasms (IS) and development of Lennox- Gastaut syndrome, with 18-50% of IS patients developing Lennox-Gastaut syndrome.

EEG

While features of hypsarrhythmia define the EEG of patients with infantile spasms, evidence of this abnormality on the first EEG was seen not to influence the response to treatment. However, if the hypsarrhythmia persisted despite treatment, or was atypical and/or asymmetrical, this was seen to adversely influence the long-term outcome.

Neurodevelopmental disability

The most important factor in predicting the cognitive and developmental outcome of patients is etiology.

Mental retardation occurs in about 70 % of patients with infantile spasms, usually involving severe to profound retardation and often associated with other psychiatric problems. Other neurological deficits, such as cerebral palsy, may be seen in about 30-50% of patients.
Most children with infantile spasms experience slowing, plateauing, or regression of their developmental progress.

Studies have consistently shown that infants with symptomatic infantile spasms are at much higher risk (86-90%) of developing mental retardation, autism and other behavioral and cognitive disabilities, compared to infants with idiopathic infantile spasms. Symptomatic infantile spasms, in particular, are associated with autism spectrum disorders (ASD) in up to 35% of cases.
10-20% of patients with normal development prior to the start of their spasms will have normal mental function or only be mildly impaired long-term. 28-50% of patients with idiopathic infantile spasms will go on to have normal or borderline cognitive development.

Mortality

The premature death rate for infantile spasm ranges from 5-31%. Most of the deaths (61%) occurred at or before age 3 years, while only 10% occurred after age 20 years.

In most cases, the mortality is seen to be a result of the underlying neurological cause of the infantile spasms.

Factors for a favorable outcome in Infantile Spasms

• Cryptogenic or idiopathic cause
• Age of onset of spasms > 4 months
• No atypical or partial seizures
• Typical EEG abnormalities – hypsarrhythmia
• Early onset of treatment
• Early and good response to treatment

SUDEP Awareness – A Family’s Story

My brother, Jimmy, was diagnosed with epilepsy at 6 months old.  He was never able to get his seizures under control, and the longest he ever went seizure free was for 6 months after he had frontal lobe epilepsy surgery in 2011. However, 6 months after the surgery, his seizures returned and progressed to the point that his disease was just as bad as it was prior to the surgery. His neurologists were just getting him cleared for another brain surgery when he passed away from SUDEP or sudden unexpected death in epilepsy.

More information needs to be made available about SUDEP for people with epilepsy and their families, and throughout the medical community. The first time anyone in our family ever heard about SUDEP was the day after Jimmy died, not once had we heard of it before then. Since my brother’s death I have talked to others with epilepsy and none of them had heard of SUDEP prior to Jimmy’s passing. In order to make informed decisions about our health, we must have all the facts.

My family and our many wonderful friends just recently participated in the 4th Annual Into The Light Walk for Epilepsy in NYC, in honor of Jimmy, to celebrate his life, and to help improve the lives of others living with epilepsy in our community. We are making efforts to tackle SUDEP and Keeping The FAITH For JIMMY. Raising SUDEP Awareness helps spread much needed information, promotes the importance of comprehensive health education and can help prevent another family from being surprised and deeply affected by something unknown, like we were. Please join us on this mission.

After my brother died, my family and I recalled that not once in his life did Jimmy ever question why he had epilepsy. He accepted the disease and it did not ever deter him from living his life. Many times this made us crazy because we were scared for his safety, but he wanted to live freely and enjoy his life. Epilepsy never defined Jimmy, he always lived life to the fullest, and for this we are happy and grateful. My brother was a diehard Mets fan and I think we are on this big run because of him. We love you forever Jimmy.

Please make sure you let your family and friends know that you love them, every chance you get.

Sincerely,
Kenny Hellmann

Help spread SUDEP Awareness! For more information, please visit:

• EpilepsyNYC – What is SUDEP?
• EFA – SUDEP Institute
• SUDEP Action – UK

 

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