What is Epilepsy?
There are 3 main types of seizures:
1. Generalized onset seizures: These seizures affect both sides of the brain or groups of cells on both sides of the brain at the same time.
2. Focal onset seizures: Can start in one area or group of cells in one side of the brain.
Focal Onset Aware Seizures: When a person is awake and aware during a seizure, it’s called a focal aware seizure. This used to be called a simple partial seizure.
Focal Onset Impaired Awareness: When a person is confused or their awareness is affected in some way during a focal seizure. This used to be called a complex partial seizure.
3. Unknown onset seizures: When the beginning of a seizure is not known, it’s now called an unknown onset seizure. A seizure could also be called an unknown onset if it’s not witnessed or seen by anyone, for example when seizures happen at night or in a person who lives alone.
Local Pediatric Neurologists:
Dr. Boo (Boosara Ratanawongsa), Pediatric Neurologist
Where: 431 Chestnut St, Emmaus, PA
Call: 610-398-9898
Note: Please check with the office to verify insurances that are accepted. Does not accept medical assistance..
Website: www.doctorboo.com
NEW Dr. Elizabeth T. Corbo, Pediatric Neurologist
(End of 2018, she will move practice to Coopersburg) She is affiliated with St. Luke's Hospital
Where: 306 S. New Street, Suite 303, Bethlehem
New Address: Fairmont Village Shopping Center, 7001 N Route 309, Coopersburg
Call: 484-526-5735
Dr. Joseph Melvin, Pediatric Neurologist
St Chris Specialty Pediatrics at Reading Hospital
Where: 3601 A St, Philadelphia, PA 19134
Call: (484) 531-7127
Dr. Semah Morkous
LVPG Neurology
Where: 1210 Cedar Crest Blvd, Allentown, PA 18103
Call: (610) 402-3888
Tests to Expect:
EEG: A brain wave test to look for changes in the brain's electrical patterns that are related to seizures.
A CT scan (sometimes called a CAT scan), or an MRI scan (magnetic resonance imaging), to look for abnormal areas such as a tumor or infection.
An epilepsy blood test measures the amount of the hormone prolactin in the blood. It helps determine whether a seizure was caused by epilepsy or another disorder.
Treatment Protocol:
Medication: The challenge will be to find a medication that will prevent seizures but there are serious side effects. Keeping a journal will help you and the physician make careful decisions. Some children have multiple seizures a day and this may require hospitalization, possibly surgery but these usually involve extreme cases.
Medical Marijuana CBD Oil: There are 21unique diagnoses that qualify for medical marijuana include Autism, Epilepsy and Intractable Seizures. In the state of Pennsylvania, a patient must medically qualify for one of the approved diagnoses. Then they can register with the online Medical Marijuana portal, visit with the approved physician and pay $50 fee to obtain a Medical Marijuana ID Card. Please note this card only protects you in the State of PA. Then you go to a legal dispensary and under the care of a pharmacist.
Some things to consider:
So far none of the approved physicians are pediatricians. As of 2018, there are only 15 in the state.
Cost will be out of pocket as it isn't covered by insurances.
Travel and vacations out of state can be limited as the ID only protects you in the state of PA. Traveling out of state may generate legal issues.
It is important that your medical team be aware of CBD oil. It can exacerbate the side effects of other medications and may impact medical care in an emergency situation.
For more information, contact the Pennsylvania Department of Health's Medical Marijuana Program Help Desk at (888) 733-5595.
***Lehigh Valley Autism Guide promotes education so that parents can make informed decisions about their child's care and well being but the information provided does not replace medical and legal advice regarding medical marijuana and CBD.
Support:
November is Epilepsy Awareness Month. It is represented by a purple ribbon. Here in the Lehigh Valley, the local chapter of the Epilepsy Support Group hold informational meetings for parents to learn more about their child's diagnosis.
Epilepsy Support Group
Meetings are held throughout the year. Individuals who are diagnosed with epilepsy can access information and support about their diagnosis. Please contact Ellen to be on their mailing list.
Services: Free seizure first aid training program for nurses, teachers and students. Approved ACT 48 and 58 Credits, and assist in 504 and IEP Planning.
When: 6-7:30p.m.
Where: Lehigh Valley Hospital Cedar Crest in the Kasych Family Pavilion (room 5)
Call: Ellen Baca, Lehigh Valley Coordinator for the Epilepsy Foundation of Eastern PA at 610-737-0613 or emaillv@efepa.org.
Epilepsy Detectors:
DANNY DID GRANT PROGRAM: Click on the link to see the latest devices that are used to detect seizures. The Danny Did Foundation provides financial assistance for qualified individuals who require financial support for the cost of devices for seizure detection or prevention.
Seizure Service Dog Providers:
Canine Partners for Life
Where: 334 Faggs Manor Road, Cochranville, PA 19330
Call: (610) 869‑4902
Website: http://k94life.org/seizure-alert/
4 Paws for Ability
Where: 253 Dayton Ave., Xenia, Ohio 45385
Email: karen@4pawsforability.org
Call: (937) 374-0385
Website: https://4pawsforability.org/seizure-assistance-dog/
Manners Unleashed: Etiquette Regarding Service Dogs is an article written by Laura Magnuson and published by PACER Center. http://www.pacer.org/parent/php/php-c164.pdf