Seizure Detection Using Wearable Devices: Current & Emerging Technologies [Webinar]

This webinar is presented by the Epilepsy Foundation of Metropolitan New York and sponsored by a non-commercial, unrestricted grant from LivaNova, Inc. [October 7, 2021]

Distinguished EFMNY PAB Member Patricia McGoldrick to Receive 2021 ACNN Award for NP Excellence

The Epilepsy Foundation of Metropolitan New York is proud to recognize its Professional Advisory Board Member, Patricia McGoldrick, NP MPA MSN, who is the recipient of the 2021 Association of Child Neurology Nurses (ACNN) Award for NP Excellence, to be presented in conjunction with the Child Neurology Society meeting at the end of this month. Patricia enjoys decades of notable professional achievement in Child Neurology. She is most deserving of this notable award.

Patricia McGoldrick, NP MPA MSN

Additionally, Toni Kavanagh, BSN, MSHA, MBA, CNRN is receiving the 2021 ACNN Claire Chee Award for Excellence in Child Neurology Nursing.

Toni Kavanagh, BSN, MSHA, MBA, CNRN

Patricia and Steven M. Wolf, MD received The Hero Award as the Distinguished Service Honorees at the 2018 EFMNY Annual Into the Light Dinner Gala. Toni will be receiving The Emma Rose Award for providing direct service to persons with epilepsy at the upcoming 2021 EFMNY Annual Into the Light Dinner Gala.

Please join the EFMNY Executive Director Elinor LaTouche, MPA, and the Directors and Professional Staff in saluting these two fine professionals.

For more information, please contact Chilton Harper, MPA at charper@efmny.org or 917-856-5717.

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.

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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.EFMNY-Blog-Epilepsy-NYC-ADeBourcy-IMG_7259

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.”

EFMNY-Blog-Epilepsy-NYC-ADeBourcy-IMG_7253My 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.

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