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We now take credit card donations through PayPal and GiveSmartOKC.

Checks that you send should be made out to:
The Epilepsy Association of Oklahoma.
Donations are fully tax deductible and will be used to fund our programs:

1) Emergency Seizure Medication Assistance & Discount Drug Cards
2) Education About Seizures For Schools, Communities & Work Force
3) Monthly Newsletter
4) Website With Resources & Epilepsy Facebook
5) Annual Epilepsy Camp & Health Fairs To Educate
6) Support Groups Throughout Oklahoma



GiveSmartOKC
You May Also Donate By Check,
Please Make Payable To:

Epilepsy Association of Oklahoma
11212 N. May Ave. Suite 108
Oklahoma City, OK. 73120
   

 

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Useful Links

 
 

Other Websites With Information & Resources We Found To Share With You

If you come across a website with information that you think we might want to share on this page, please contact us at us on the contact page of this website


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Medical Marijuana On Medical Marijuana and Epilepsy
Nearly 3 million people in the United States live with epilepsy, a neurological problem that includes recurring seizures. While 6 in 10 people with epilepsy may respond to medical treatment, over 1 million people live with uncontrolled seizures. Some of these people may be helped by surgery or other non-drug treatments, but for many, no answers have been found yet. People with uncontrolled epilepsy live with the continued risk of seizures, side effects of medication, injuries and other medical problems.

Click here to read more on this subject
 

Rett Syndrome

Rett syndrome is a rare, but severe brain disorder that affects girls. It's usually discovered in the first two years of life, and a child's diagnosis with Rett syndrome can feel overwhelming. Although there's no cure, early identification and treatment may help girls and families who are affected by Rett syndrome.

http://www.rettsyndrome.org

http://www.kennedykrieger.org/patient-care/diagnoses-disorders/rett-syndrome?gclid=CJ64lpntyMMCFZI0aQods6IAyw

http://www.ninds.nih.gov/disorders/rett/detail_rett.htm

http://www.webmd.com/brain/autism/rett-syndrome

 

Epilepsy Camps by State

Summer camps

http://www.epilepsy.com/get-help/services-and-support/camps/epilepsy-camps

 

Jeavons Syndrome

Jeavons Syndrome (Eyelid Myoclonia with Absences)

Eyelid myoclonia with absences (EMA), or Jeavons syndrome, is a generalized epileptic condition clinically characterized by eyelid myoclonia (EM) with or without absences, eye closure-induced electroencephalography (EEG) paroxysms, and photosensitivity; in addition, rare tonic-clonic seizures may also occur. Although first described in 1977 and widely reported by several authors within the last few years, EMA has not been yet recognized as a definite epileptic syndrome. However, when strict criteria are applied to the diagnosis, EMA appears to be a distinctive condition that could be considered a myoclonic epileptic syndrome, with myoclonia limited to the eyelids, rather than an epileptic syndrome with absences.

http://www.epilepsy.com/information/professionals/about-epilepsy-seizures/reflex-seizures-and-related-epileptic-syndromes-4


http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=139431


https://www.facebook.com/pages/Jeavons-Syndrome/260411829399

 
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Qudexy XR

http://www.upsher-smith.com

Epilepsy is a chronic neurological disorder characterized by a tendency for patients to have recurrent seizures. A seizure occurs as a result of a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the communication between brain cells. This disruption may result in severely abnormal brain function and consequent physical manifestations.


Welcome to
Qudexy™ XR Patient Co-Pay Program Card Activation

The Patient Co-Pay Program has certain eligibility requirements. The following questions should take less than three minutes to answer. This program is not available to patients whose prescriptions are paid in part or full by any state- or federally-funded programs, including but not limited to Medicare or Medicaid, Medigap, VA, DOD or TriCare, or where prohibited by law. If your insurance changes, you may no longer be eligible for this program.
https://www.activatethecard.com/7088



If you would like to receive a “FREE 30- Day Trial Offer” card or a Co-Pay Program card please contact my office 405-463-0673

 
GeneDX

GeneDX

GeneDx is a highly respected genetic testing company founded in 2000 by two scientists from the National Institutes of Health (NIH) to address the needs of patients and clinicians concerned with rare inherited disorders. GeneDx offers sequencing and deletion/duplication testing for neurological disorders including seizure disorders, mitochondrial disorders, inherited cancer and cardiac disorders, and other rare genetic disorders. GeneDx also offers whole exome sequencing, next-generation sequencing, microarray-based testing, targeted mutation testing and prenatal diagnostic services. At GeneDx, our technical services are matched by our scientific expertise and customer support. Our growing staff includes more than 100 geneticists and genetic counselors specializing in clinical genetics, molecular genetics, metabolic genetics and cytogenetics who are just a phone call or email away.
We invite you to visit our website at www.genedx.com to learn more about us and the services we offer.

www.genedx.com

For questions on Genetic Testing please contact:

Ryan R. Stites, MBA
Product Specialist - OK & AR
GeneDx
918-779-8839
rstites@genedx.com

www.genedx.com

EGI

What types of results can I expect from genetic testing?
There are 3 main types of results that may come out of EGI:
• No cause of the epilepsy is found.
• A genetic change suspected to cause epilepsy may be found.
• A genetic change known to cause epilepsy may be found.
Only genetic changes known to cause epilepsy will be reported back to your doctor. While genetic factors play a role in every epilepsy, not everyone’s epilepsy will have a clear genetic cause. Because of this, finding a cause for your epilepsy cannot be guaranteed from EGI.
http://www.cureepilepsy.org/egi/


 

American Epilepsy Society

Over the years, the AES has taken steps to implement our purposes by developing educational courses and symposia. In 1984, a special task force was appointed to see how the Society could attract basic neuroscientists. In addition, Investigators' Workshops were organized to integrate basic neurosciences into the life of our Society. In 1988, a concerted effort began to address issues on Childhood Onset Epilepsy and to shape our Society into an active, rather than a reactive mode, by identifying educational and investigative priorities.
 
 
About Epilepsy
Living with seizures and epilepsy is a challenge for so many. While one person may have seizures, the experiences of living with epilepsy can affect the whole family.
The American Epilepsy Society (AES) website is the ‘home’ of professionals involved in the care of people with seizures and epilepsy.  Here you will find information about the Society, programs available for members, as well as educational programs and news available to all professionals with an interest in epilepsy.
For people with epilepsy and their families and loved ones, feel free to look around and learn more about epilepsy.

Contact Us
Executive Office
135 South LaSalle Street
Suite 2850
Chicago, IL 60603
Tel: 312-883-3800


 
 
 

CEREBRAL PALSY AND EPILEPSY

Around half of all children withcerebral palsy also have epilepsy. Both cerebral palsy and epilepsy are neurological disorders that often coincide with one another.
 
 
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What we do…..

OKBTF is a nonprofit advocacy organization that provides outpatient behavioral health services for Oklahoma families who have a family member, child or adult, who have been diagnosed with a brain tumor.  We are dedicated to meeting the needs of Oklahoma families, caregivers and patients affected by primary brain or central nervous system tumors. We work to provide for needs through programs that address families emotional, physical, and spiritual needs.

Whatever your needs, whether financial, physical, mental or spiritual, we will work with you to fight the battle. Here you will find many of the services we offer in support of families just like yours, who are confused, hurting and just wanting straight answers. Feel free to browse around, get to know us, see what we are doing to help and send us your comments or questions… We are here for you.

ASK ABOUT OUR ACCESS 2 HOPE

4024 N. Lincoln Blvd., Suite 220 

Oklahoma City, OK 73105 Office: (405) 843-4673

http://okbtf.org/

 

 
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Danny Did Foundation
Example is not the main thing influencing those around you, it is the only thing.

To achieve our goals, the DDF engages physicians and researchers in the fields of neurology and epileptology; we collaborate with medical technology companies; we consult with epilepsy organizations, and we interact with all those affected by Danny’s story. We ask doctors to talk about SUDEP, and we offer ourselves as an outlet to which doctors can steer patients. We create informational pieces about safety in epilepsy in general and SUDEP in particular. We pursue the latest seizure detection and seizure prediction technologies, and once identified as viable and worthwhile instruments, we work to get these products approved by the United States Food and Drug Administration and then covered by insurance companies. We view these devices as complimentary to medicinal, surgical, and dietary measures that are used to treat seizures, and –with SUDEP accounting from an estimated 20 percent of seizure-related deaths– we believe that there is no such thing as too much prevention.
 
Seizures can sometimes be fatal from a range of causes; more people die as a result of seizures than from fires and sudden infant death syndrome (SIDS) combined. Thousands of deaths occur annually from SUDEP, status epilepticus (prolonged seizures), and other seizure-related causes such as drowning and other accidents.
 
Contact:
800-278-6101
 

Please go and enjoy your life. Danny did.


 
 

IF YOU THINK YOU HAVE A DISORDER, PLEASE CHECK OUT THE YOU TUBE VIDEOS



http://www.psychiatristinsydney.com.au


Are you or a loved one struggling with difficult emotional or psychological issues? These conditions are common but can cause great distress and disability. Depression can lead to a person losing interest in life, anxiety can cause a person to isolate themselves and both conditions limit a person from achieving their full potential. Yet if identified and treated appropriately these conditions can be completely overcome.

 
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Cyberonics

Cyberonics, Inc., (NASDAQ: CYBX) is a medical technology company with core expertise in neuromodulation. The company developed and markets the Vagus Nerve Stimulation (VNS) Therapy system, which is FDA-approved for the treatment of refractory epilepsy and treatment-resistant depression. The VNS Therapy system uses a surgically implanted medical device that delivers pulsed electrical signals to the vagus nerve. Cyberonics markets the VNS Therapy system in selected markets worldwide.


http://www.cyberonics.com

 
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Medicare Assistance Program

If you need help understanding your MEDICARE:


http://www.ok.gov/oid/Consumers/Information_for_Seniors


1-800-763-2828

WWW.MAP.OID.OK.GOV

 
Nami National Alliance on Mental Illness

Psychiatric Disorders Associated With Epilepsy

 

The International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) define epilepsy as a disorder of the brain characterized by an enduring predisposition to generate epileptic seizures and by the biologic, cognitive, psychological, and social consequences of this condition. This association may reflect the anatomical and neurobiological source of both epileptic seizures and the behavioral manifestations.


http://emedicine.medscape.com/article/1186336-overview

Go to Epilepsy and Seizures for an overview of this topic. Additionally, go to Psychogenic Nonepileptic Seizures for complete information on this topic

Treatments & Services


http://www.nami.org/template.cfm?section=About_Treatments_and_Supports

 
Seizure Disorders in the Elderly

Pioneering New Medicines in Neurology
and Psychiatry

With more than 20 years of experience, we are a specialty pharmaceutical company focused on developing and commercializing products for the treatment of central nervous system (CNS) disorders.

In 2013 we launched Oxtellar XR® and Trokendi XR®, two novel neurology products for the treatment of epilepsy. We are also developing several product candidates in neurology and psychiatry to address unmet medical needs and opportunities in epilepsy, attention-deficit hyperactivity disorder (ADHD) and its coexisting disorders, and depression.

We are developing differentiated products by leveraging our proprietary and in-licensed technologies. We use such technologies to discover and develop novel uses for known drug compounds and to enhance their therapeutic benefits. Our focus on known drug compounds with established mechanisms of action reduces the risks, costs, and time typically associated with pharmaceutical product development.

MEDICATION ASSISTANCE PROGRAM FOR TOPAMAX XR & TRILEPTEL XR FOR  $15 A MONTH-

http://www.trokendixr.com/patient/

http://www.oxtellarxr.com/patient/


Trokendi XR™ (topiramate) extended-release capsules are available in your area. For more information.
Call Supernus Support toll free at 1-866-398-0833.

Patient Savings and Support Program

Supernus offers prescription savings and support tools for patients taking Trokendi XR. The Supernus Pharmacy Savings Card may help eligible patients lower their out-of-pocket costs. In fact, insured and cash-paying patients can use the card for prescription costs over $15, with a maximum savings of $150/prescription (a yearly savings of up to $1800).*

YOU MAY ALSO CONTACT THE EPILEPSY ASSOCIATION’S OFFICE FOR ASSISTANCE  405-463-0673



 
NES The Truth about Psychogenic NonEpileptic Seizures “NES”

People with nonepileptic seizures (NES) have periods of seizure-like activity. NES are characterized by a loss of or change in physical function without a central nervous system problem. The loss or change causes periods of physical activity or inactivity that resemble epileptic seizures. A person can have both nonepileptic and epileptic seizures.

http://www.webmd.com/epilepsy/tc/nonepileptic-seizures-nes-topic-overview

http://www.epilepsysociety.org.uk/non-epileptic-seizures#.U9kWiM10zcs

http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures

http://www.hopkinsmedicine.org/news/media/releases/symptoms_that_mimic_epilepsy_linked_to_stress_poor_coping_skills
 


Sunovion develops pharmaceutical products that improve the lives of millions of patients. Sunovion science at present specializes in two distinct therapeutic areas—respiratory conditions and disorders of the central nervous system.

We are committed to making a difference in the lives of patients—and growing our business—by concentrating our efforts in these two important therapeutic areas. Our efforts have brought to market nine drugs approved by the U.S. Food and Drug Administration (FDA): Aptiom® (eslicarbazepine acetate) tablets, Latuda® (lurasidone HCl) tablets, Lunesta® (eszopiclone) tablets, Xopenex® (levalbuterol HCl) Inhalation Solution, Xopenex HFA® (levalbuterol tartrate) Inhalation Aerosol, Brovana® (arformoterol tartrate) Inhalation Solution, Omnaris® (ciclesonide) Nasal Spray, Alvesco® (ciclesonide) Inhalation Aerosol, and Zetonna® (ciclesonide) Nasal Aerosol. At the same time, we have developed a strong pharmaceutical pipeline that strengthens our presence in these two treatment categories.

Our efforts have brough to the market nine drugs approved by the U.S. Food and Drug Administration (FDA): APTIOM, LATUDA, LUNESTA, XOPENEX, XOPENEX HFA, BROVANA, OMNARIS, ALVESCO and ZETONNA. At the same time, we have developed a strong pharmacetical pipeline that strendthens our presence in these two treatment categories.

We are developing products with our own internal development programs and collaborating with outside partners on various corporate development and licensing arrangements.

Between our current treatments and the products in our pipeline, Sunovion targets, on the one hand, central nervous system disorders such as bipolar depression, schizophrenia, depression, epilepsy, neuropathic pain, and insomnia, and on the other, respiratory conditions such as asthma, allergic rhinitis, and chronic obstructive pulmonary disease (COPD).

http://www.sunovion.com

APTIOM

For A $10 Discount Card For Co-Pay Visit The Website or Contact My Office 405-463-0673

Savings Link

(Click Image Above To Open Flyer)


 
REN

LINK TO WEBSITE


 
PMSF
What is Phelan-McDermid Syndrome?

PMS PART OF RARE DISEASE CONSORTIUM

The Phelan-McDermid Syndrome Foundation is delighted to announce PMS is one of the diseases included in the new “Developmental Synaptopathies Consortium” through the Rare Disease Clinical Research Network (RDCRN). This consortium includes PMS and two related disorders – Tuberous Sclerosis Complex and autism-associated PTEN mutations.

What does it mean for us? We will have Seaver Autism Center (NYC), NIH (Bethesda, Md.), Rush Memorial (Chicago) and Boston Children’s working together to collect clinical data from our children. Each site will follow a common protocol and will share participant data with each other – both of which are especially important in accelerating rare disease research.


http://22q13.org/j15/

http://www.ncbi.nlm.nih.gov/books/NBK1198/

http://www.epilepsy.com//ren 
 
F.I.R.E.S.

F.I R.E.S.


Febrile infection-related epilepsy syndrome (FIRES) is a severe brain disorder that develops in children after a fever. This condition results in sudden seizures and leads to declines in memory and intellectual ability. FIRES can also cause psychiatric disorders or problems with motor skills. The cause of FIRES is unknown, but may be related to infection, genetic susceptibility, an autoimmune disorder, or a problem with metabolism. Treatment involves antiepileptic medications to manage seizures, but they do not usually work well.

http://rarediseases.info.nih.gov/gard/11005/febrile-infection-related-epilepsy-syndrome/resources/1

http://www.ncbi.nlm.nih.gov/pubmed/22911482

http://www.fireschildren.org/

http://digitaljournal.com/pr/2160465
 
UCB
UCB MAKER OF VIMPAT

Our purpose

Everything we do starts with one simple question: “How can we create more value for people living with severe diseases?".
Meeting patients’ unmet needs

Just because our medicines treat thousands of people around the world doesn’t mean our job is done. For us, it’s vital that we listen to the constantly evolving needs of patients and their families. Working with physicians and healthcare professionals, we are engaging more with patients to better understand their clinical, economic, social and personal needs. What matters most is how they feel in their everyday life as they progress on their healthcare journey. Because we’re not just treating a disease. We’re caring for individual people. Patients inspire us to bring them value through more cutting-edge science, more innovative drugs, and more practical solutions – so that they, and their careers, can get on with their lives.

http://www.ucb.com

http://www.ucb.com/patients/links/epilepsy


UCBCares™ 1-844-599-CARE (2273)

http://www.cimzia.com

FOR A DISCOUNT CARD ON VIMPAT PLEASE CONTACT OUR OFFICE 405-463-0673 OR
CONTACT UCB DIRECT 1-866-395-8366


http://www.ucb.com/patients/programmes


BRIVIACT MEDICATION UCB

 https://www.briviact.com/



 

College Transition Connection (CTC)




http://collegetransitionconnection.org


The College Transition Connection (CTC) works with select colleges and universities in South Carolina to design, create and fund transition and post-secondary opportunities for young adults with intellectual disabilities.

For those with intellectual disabilities, what happens after high school?
For too many of our young people, there are few viable and meaningful opportunities for continuing education. Students and their parents need more options, and CTC was created to help.
For many this is a personal quest. But the problem is bigger than anyone’s personal challenges.
    • 92% of adults with intellectual disabilities are not employed.
    • Research shows that students with intellectual disabilities who have some type of post-secondary experience are much more likely to obtain competitive employment, require fewer supports and earn higher wages.
    • post-secondary programs have had a positive impact on student rates of employment and wages, social networks and self-determination skills.
    • 87% of students in one state post-secondary program were reported to be employed or in training positions, and 100% of students reported to be involved in integrated community activities.
    • One study shows that 97% of employers surveyed who had hired someone with a disability in the past indicated they would hire an individual with a disability again in the future.
    • In 2005, 1,558 students with intellectual disabilities left the South Carolina school system.
     • In 28 states—but not in SC—there are 110 post-secondary programs for individuals with intellectual disabilities.
For a list of sources and attributions, contact CTC.
Clearly, we need a solution. That's why CTC is here.

https://www.facebook.com/collegetransitionconnection
http://www.medscape.org/viewarticle/493672
 
Seizure Disorders in the Elderly Please Read The Following Articles
Treating Seizure Disorders In The Elderly

U.S. Pharmacist Website

Causes of Seizures in the elderly
http://www.uspharmacist.com/content/c/10161/?t=alzheimer's_and_dementia,neurology

American Family Physician Website
Treatment of seizures and epilepsy in the elderly patient:
http://www.aafp.org/afp/2003/0115/p325.html

Medscape Website
Seizures and Epilepsy in the Older Adult
http://www.medscape.org/viewarticle/493672

 
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AOK_Awareness Autism Center of Tulsa
Autism Center of Tulsa


AOK was created to identify individuals with autism in a positive light because individuals with autism are AOK.

Learn More by selecting the image or link below.

http://www.autismtulsa.org
 
Easter Seals Oklahoma Easter Seals Oklahoma provides services to children and adults with disabilities and other special needs, and support to their families.

Easter Seals Oklahoma
701 N.E. 13th Street
Oklahoma City, OK 73104
Visit our Website
http://www.eastersealsoklahoma.org
Phone: (405)239-2525
CEO: Paula Porter
 
OKFD Enhancing Possibilities For People With Disabilities

Oklahoma Foundation For The Disabled

http://www.okfd.org
 
Angelman Syndrome  Angel man

Angelman syndrome is a genetic disorder that causes developmental disabilities and neurological problems, such as difficulty speaking, balancing and walking and, in some cases, seizures. Frequent smiles and outbursts of laughter are common for people with Angelman syndrome, and many have happy, excitable personalities.

Angelman syndrome usually isn't detected until parents begin to notice developmental delays when a baby is about 6 to 12 months old. Seizures often begin when a child is between 2 and 3 years old.

People with Angelman syndrome tend to live a normal life span, but they may become less excitable with age. Other signs and symptoms remain. Treatment for Angelman syndrome focuses on managing the child's medical and developmental problems.

http://www.angelman.org

http://www.mayoclinic.org/diseases-conditions/angelman-syndrome/basics/symptoms/con-20033404

http://www.childrenshospital.org/health-topics/conditions/angelman-syndrom
 
We Connect Now  International League Against Epilepsy

Goals and Mission

ILAE's mission is to ensure that health professionals, patients and their care providers, governments, and the public world-wide have the educational and research resources that are essential in understanding, diagnosing and treating persons with epilepsy.

http://ilae.org
 
We Connect Now  We Connect Now

We Connect is dedicated to uniting college students with disabilities in access to higher education and employment issues.
http://weconnectnow.wordpress.com

Facebook Link:
https://www.facebook.com/pages/We-Connect-Now-National/136925609714725
 
TEFRA TEFRA:

TEFRA Children Overview
Care for children with disabilities

TEFRA (Tax Equity and Fiscal Responsibility Act of 1982) gives states the option to make Medicaid (SoonerCare in Oklahoma) benefits available to children with physical or mental disabilities who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent's income or resources. This option allows children who are eligible for institutional services to be cared for in their homes.
http://okhca.org/individuals.aspx?id=172&menu=42&parts=7653_1874_7655

Oklahoma Health Care Authority

SoonerCare Helpline
Oklahoma City Area
TDD/TTY.
TEFRA Web site:
(800) 987-7767 Toll Free.
(405) 522-7171
(405) 522-7179
http://www.okhca.org/TEFRA
 
TARC

The Developmental Disabilities Advocacy Network is a place where you can find information about disabilities; learn about available programs and services; and connect with others like yourself.

Volunteer guardian and advocate program that matches volunteers one on one with people who have developmental disabilities. The volunteers provide friendship and assistance with decision making

http://www.ddadvocacy.net/ddadvocacy/default.asp

Address: 3800 N. Classen, C30
Oklahoma City, OK 73118
Contact: Brenda Garrett
Phone: 405-557-1878
Website: TARC
Email: bgarrett@ddadvocacy.net

 
Child Seizure HOW TO HANDLE A CHILDS' SEIZURE
First incident requires emergency medical care, expert says
HealthDay News
(By -- Robert Preidt) -- Seeing a child suffer a seizure can terrify a parent. As part of Epilepsy Awareness Month in November, an expert offered some advice on how to deal with such a situation.

All first seizures in children require a medical evaluation, said Dr. Adam Hartman, a pediatric neurologist and epilepsy expert at Johns HopkinsChildren's Center in Baltimore.
"If this is the first time your child is having a seizure, seek emergency medical care," he said in a Johns Hopkins news release.
Children with known epilepsy who have a breakthrough seizure -- one that occurs despite treatment -- do not typically require urgent medical attention unless:
     • The seizure lasts more than five minutes.
     • The seizure looks different from previous seizures.
     • Several seizures occur in a cluster.
     • The child remains unconscious for a few minutes following the seizure.
     • The child struggles for air and is not getting enough oxygen, signaled by bluish lips or complexion.
The symptoms listed above may mean that the child is going into status epilepticus, a persistent, severe and life-threatening seizure that always requires emergency treatment, Hartman said.

During a seizure, don't put anything in the child's mouth and don't try to hold the child down. Clear the surrounding area and have the child lie on one side, rather than flat on their back, Hartman said. You can put a small pillow under the child's head.
After the seizure ends, allow the child to rest and check for injuries. Do not give the child anything to eat or drink until fully alert. Note the length of the seizure and the date and time it occurred.

Keep a seizure diary and inform the child's neurologist or primary-care pediatrician about all seizures. Pay attention to what might have triggered the seizure. Sleep deprivation, high fever, illness, and emotional or physical stress increase seizure risk among children with epilepsy.

"Children respond individually to stressors, so it's important to notice the factors that precipitate a seizure in your child and avoid them when and if possible," Hartman said. Epilepsy, an umbrella term that encompasses more than 40 seizure disorders, affects nearly 3 million people in the United States. More than 320,000 of them are children under 15, according to the Epilepsy Foundation. About 45,000 children in the United States develop epilepsy each year.

More information:
The Epilepsy Foundation has more about epilepsy.
SOURCE: Johns Hopkins Medicine, news release, Nov. 1, 2013
 
Eisai Inc
EPILEPSY/SEIZURES 24/7 HELPLINE:
How Can You Contact Us?
You can speak with trained information specialists at any time by calling:
Our Toll-Free Helpline: 1-800-332-1000
(en Español 1-866-748-8008)
Calls are answered 24 hours a day, 7 days a week.
https://www.epilepsy.com/get-help/epilepsy-seizures-247-helpline



ABOUT EPILEPSY: THE BASICS
https://www.epilepsy.com/learn/about-epilepsy-basics

PAGE SUMMARY
• Epilepsy is a condition of the brain causing seizures.
• A seizure is a disruption of the electrical communication between neurons
• Someone is said to have epilepsy if they experience two or more unprovoked seizures separated by at least 24 hours


TYPES OF SEIZURES:
https://www.epilepsy.com/learn/types-seizures


TYPES OF EPILEPSY SYNDROMES:
https://www.epilepsy.com/learn/types-epilepsy-syndromes


TRIGGERS OF SEIZURES:
https://www.epilepsy.com/learn/triggers-seizure

 
Eisai Inc


UNITED STATES

We give first thought to patients and their families, and to increase the benefits health care provides.

About Eisai Inc.
Eisai Inc. (pronounced ā-zī) is a U.S. pharmaceutical subsidiary of Tokyo-based Eisai Co., Ltd, a research-based human health care (hhc) company that discovers, develops and markets products throughout the world. Established in 1995, Eisai Inc. began marketing its first product in the United States in 1997 and has rapidly grown to become an integrated pharmaceutical business.

Eisai is a human health care (hhc) company seeking innovative solutions in disease prevention, treatment and care for the health and well-being of people worldwide. Our company's hhc mission symbol is derived from the letters in Florence Nightingale's signature. Following the example set by this famed healthcare pioneer, who devoted her life to caring for others yet never lost sight of the importance of listening to her patients, Eisai marshals its talents to explore new therapeutic approaches that help address two key goals: meeting the medical needs of patients and their families, and improving their quality of life.

http://us.eisai.com/wps/wcm/connect/Eisai/Home
FYCOMPA™ Savings Card Program*

FYCOMPA™ Savings Card Program*
The Savings Card Program helps your patients save in two ways

• With the FYCOMPA Monthly Savings Card, patients with prescription coverage and a copayment of more than $25 may be eligible to receive out of pocket support. Your patient will pay no more than $25 for his/her Fycompa co-pay, and Eisai will pay the remaining out-of-pocket expense up to $600 a year. Patients without prescription coverage may receive up to $60 off their FYCOMPA™ prescription up to $720 a year.
• The Savings Card is good toward the purchase of 12 FYCOMPA™ prescriptions for up to 12 uses.

http://www.eisaireimbursement.com/Fycompa/SavingsOffers.aspx
STURGE-WEBER SYNDROME
Sturge-Weber Syndrome STURGE-WEBER Syndrome

Sturge-Weber syndrome (SWS), also called encephalotrigeminal angiomatosis, is a neurocutaneous disorder with angiomas that involve the leptomeninges (leptomeningeal angiomas [LAs]) and the skin of the face, typically in the ophthalmic (V1) and maxillary (V2) distributions of the trigeminal nerve. The hallmark of SWS is a facial cutaneous venous dilation, also referred to as a nevus flammeus or port-wine stain (PWS).

Signs and symptoms
SWS is generally diagnosed clinically, based on the typical cutaneous, central nervous system (CNS), and ocular abnormalities associated with it. Neurologic signs include the following:
• Developmental delay/mental retardation
• Learning problems
• Attention deficit-hyperactivity disorder
Factors suggesting a progressive course of cortical damage in SWS include the following:
• Initial focal seizures progressing to frequent, secondarily generalized seizures
• Increasing seizure frequency and duration despite the use of antiepileptic drugs (AEDs)
• Increasing duration of a transient postictal deficit
• Increase in focal or diffuse atrophy - Determined by serial neuroimaging
• Progressive increase in calcifications
• Development of hemiparesis
• Deterioration in cognitive functioning

http://www.sturge-weber.org

http://emedicine.medscape.com/article/1177523-overview

http://sturgeweber.kennedykrieger.org/faq.jsp
 
Wings OK http://www.wingsok.org

Our mission is to enhance the lives of adults with developmental disabilities through social, vocational and residential programs guided by principles of the Bible.


Our Vision is to provide a community in Oklahoma where individuals can:
  • Reach the full potential of all God created them to be
  • Live healthy, satisfying and enjoyable lives
  • Grow socially, emotionally, and spiritually
  • Feel safe and independent
  • Develop meaningful productive job skills
  • Hold real jobs in the community
  • Experience the pride of contributing to their own support
  • Provide educational opportunities for residents to continue developing their skills and talents
 
Oklahoma Parents Center Oklahoma Parents Center
Statewide Parent Training and Information
Advocating for Children with Disabilities to Build a Better Future


http://oklahomaparentscenter.org

Advocating for Children with Disabilities to Build a Better Future!!

MISSION STATEMENT:

The Oklahoma Parents Center is dedicated to the equality of children and adults with
disabilities. Our mission is to train, inform, educate and support parents, families,
professionals and consumers in building partnerships that meet the needs of children
and youth with the full range of disabilities ages birth through twenty-six.

Contact:

Ginger Jaggars:
Information and Training Specialist
Toll Free: 877-553-4332
Phone : 405-712-2310
Email : giaggars@oklahomaparentscenter.org
 
Synergy Home Care Welcome to SYNERGY HomeCare of Edmond

Our mission is to continue to be the premier provider of home care services in the Oklahoma City metro area by continually striving to offer our clients the highest quality of life and independence attainable. Our success starts by treating each of our clients and caregivers with the dignity and respect they deserve.

SYNERGY HomeCare of Edmond believes that everyone deserves personalized care without obligation. We believe in no contracts just care. Our C.A.R.E. team is able to provide high quality, compassionate care no matter where you may call home. We will come to you, wherever you and your family are most comfortable. More than just a companion, SYNERGY HomeCare caregivers help you or your loved one enjoy daily life.

Our services include (but are not limited to):
• Companionship
• Personal Care (showering, bathing)
• Light housekeeping
• Meal preparation
• Medication reminders
• Escort for appointments, shopping and errands
• Hourly, daily, overnight, weekends, respite and live-in care available!

Our caregivers are the "heart" of our C.A.R.E. team. Their skills are matched with the needs of our clients through our extensive screening process. All C.A.R.E. team members are:
• Trusted and Experienced
• Finger Print & National Criminal background checked
• Driving Record checked
• References checked
• Bonded and Insured

SYNERGY HomeCare services are available for adults of all ages. You will never have to choose between work and family again. With SYNERGY HomeCare you can rest assured knowing that your loved one will be genuinely cared for while you are away. We offer specialized care programs for cancer recovery, Alzheimer's care, Parkinson's care, Orthopedic and other surgery recovery, and care for new moms. We can provide you with help during hospital stays and assisted living transitions. When downsizing we can even help you move and get settled into the new environment.

http://www.synergyhomecare.com/edmond

Address: 13720 N Bryant Ave, Edmond, OK 73013
Phone:(405) 254-3046
 
Autism Center of Pittsburg
Dr. C. Morning
Autism and Early Intervention: What Works & How Well?

http://www.autismcenterofpittsburgh.com/autism-early-intervention-works-well
 
Your Partner In Epilepsy Participate. Educate. Inspire.

Become a partner in epilepsy

Participate in valuable epilepsy programs and events. Educate yourself and others about epilepsy. Inspire people to join the conversation, speak up and engage with the community.

http://www.yourpartnerinepilepsy.com

We have ONFI discount cards in our office, call if you need one!
405-463-0673

http://onfi.com

http://onfi.com/save_on_onfi


To connect with other families throughout the year, please join our online community at:

www.LGSTogether.com or on Facebook.com/LGSTogether
 
 
Doose Syndrome Website  Doose Syndrome Epilepsy Alliance

Myoclonic-Astatic Epilepsy (MAE), or Doose Syndrome, is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures (idiopathic) and the seizures originate from all over the brain (generalized) as opposed to coming from one focal area. Onset of MAE occurs commonly in the first five yeas of life, with the mean age being three. Statistics show that it usually affects children who have previously developed normally, and boys are twice as likely as girls to develop MAE. In some cases, other family members (immediate or extended) may also have seizures. Read More Here

 
Tuberous S Alliance  Tuberous Sclerosis Alliance

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.

Tuberous Sclerosis Alliance Website
Tuberosis Sclerosis on the Mayo Website

National Institute of Neurological Disorders Website
Tuberous Sclerosis Fact Sheet
Treatment With AFINITOR


 
Tinker Take Off  Tinker Take Off Campaign

Bringing awareness of how prevalent epilepsy is in the State of Oklahoma is one thing that we do at the Epilepsy Association of Oklahoma. Recently we have placed an awareness add in the "Tinker Take Off" Combined Federal Campaign magazine published by the Tinker Take Off staff bringing awareness to epilepsy, Epilepsy Association of Oklahoma and services that we can help with. Please click on the icon at the left or the link below to find our add. Thank you.

http://journalrecord.com/tinkertakeoff
 
Epilepsy Research UK Research in the United Kingdom

Epilepsy Research UK supports and promotes basic and clinical scientific research into the causes, treatments and prevention of epilepsy. We are the only national charity in the UK that is exclusively dedicated to funding independent research into this condition. Epilepsy Research UK was formed following the merger of the Epilepsy Research Foundation and the Fund for Epilepsy, in April 2007

http://www.epilepsyresearch.org.uk/news
 
Neuroscience For Kids Neuroscience for Kids

http://faculty.washington.edu/chudler/neurok.html
"Neuroscience for Kids"
This website is maintained by Eric H. Chudler, Ph.D. and was supported by a Science Education Partnership Award (R25 RR12312) from the National Center for Research Resources (NCRR). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of NCRR or NIH.
 
Epilepsy Talk Website Epilepsy Talk

http://epilepsytalk.com
Epilepsy Talk is a website that has a forum discussing many issues living with epilepsy including new treatment medications, scientific discoveries and break-throughs.
 
Dravet Syndrome Fondation http://www.dravetfoundation.org Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, the DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.
 
Lennox-Gastaut Syndrome http://www.lgsfoundation.org
Lennox-Gastaut syndrome (LGS) is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by a triad of signs including multiple seizure types, moderate to severe cognitive impairment, and an abnormal EEG with slow spike- wave complexes. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.
 
Seizure Cluster Connect Seizure clusters are frightening, frustrating, and unpredictable
No two people living with seizures or seizure clusters will experience them in the same way. Although seizure clusters are described as seizures that happen one after the other over a short period of time, there is not a single definition among people who experience them. In the United States, 152,000 people are estimated to be affected by seizure clusters. That's why a new way to connect people living with seizure clusters has been developed—introducing the Seizure Clusters Connect Community.

https://www.facebook.com/SeizureClustersConnect?EmailGUID=204BAF9D-F1A4-4285-9FCE-440D0BF1C7FD&EMCID=SSC-Intro&foundation_name=Epilepsy+Association+of+Oklahoma

Best regards,
David M. Stefanoni
Early State Commercialization & Advocacy - Upsher-Smith Laboratories, Inc.
 
CDKL5CDKL5
Epilepsy caused by CDKL5 mutations.

Mutations in the cyclin-dependent kinase-like 5 gene (CDKL5) have been identified in female patients with early onset epileptic encephalopathy and severe mental retardation with a Rett-like phenotype. Subsequently CDKL5 mutations were shown to be associated with more diverse phenotypes including mild epilepsy and autism without epilepsy. Furthermore, CDKL5 mutations were found in patients with Angelman-like phenotype. The severity of epilepsy associated with CDKL5 mutations was recently shown to correlate with the type of CDKL5 mutations and epilepsy was identified to involve three distinct sequential stages. Here, we describe the phenotype of a severe form of neurodevelopmental disease in a female patient with a de novo nonsense mutation of the CDKL5 gene c.175C > T (p.R59X) affecting the catalytic domain of CDKL5 protein. Mutations in the CDKL5 gene are less common in males and can be associated with a genomic deletion as found in our male patient with a deletion of 0.3 Mb at Xp22.13 including the CDKL5 gene. We review phenotypes associated with CDKL5 mutations and examine putative relationships between the clinical epilepsy phenotype and the type of the mutation in the CDKL5 gene.
© 2010 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

Genetics Home Reference
 
Targeting Epilepsy http://www.cdc.gov/chronicdisease/resources/publications/AAG/epilepsy.htm
TARGETING EPILEPSY
Improving the lives of people with one of the most common neurological conditions
 
Epilepsy http://www.epilepsy-advice.com
I have had many experiences back and forth throughout my career. These of which have many different stories to discuss with people about epilepsy.

Unfortunately my health was changed when it was confirmed as a teenager that I had epilepsy.
Since then my knowledge about this neurological condition has been largely expanded to do talks and help people around the world.

Hopefully my website, that came along recently will help everybody to understand about epilepsy. Plus also to read about what the condition is for people to understand it is not a disability.
 
Sibling Support Project http://www.siblingsupport.org
Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, off-beat, and appealing to a wide ability range), new friends, and discussion activities.
 
NAMI of Oklahoma http://www.namioklahoma.org
The first and foremost goal of NAMI Oklahoma is to improve the quality of life for children, adults, and families who are affected by mental illness.

NAMI Oklahoma was founded on the idea of helping those in need. Ever since our organization was established, we have endeavored to provide help where the need is greatest.

Local Office Number:
405-607-6018

Helpline:
800-583-1264
 
Oklahoma Family Network http://soonersuccess.ouhsc.edu/Home.aspx
The purpose of Sooner SUCCESS is to promote a comprehensive, coordinated system of health, social and educational services for Oklahoma children and youth with special needs...in their Community.  Sooner SUCCESS addresses barriers by promoting community capacity and infrastructure spread in communities and at regional and state levels.
 
Oklahoma Family Network http://www.oklahomafamilynetwork.org
The Oklahoma Family Network (OFN) Family-to-Family Health Information Center informs and connects individuals with special health care needs and disabilities, their families and professionals to services and supports in their communities. OFN provides opportunities for individuals and families to strengthen their communities through leadership development and volunteering. The OFN Mentorship Program is the flagship program of the center.
OTHER LINKS

Dysautonomia & Chiari with Epilepsy

Dysautonomia:
http://www.medhelp.org/tags/health_page/39830/neurological-disorders/Dysautonomia-Treatments?hp_id=171
http://thedysautonomiaconnection.org/links/helpful-links/

Chiari
http://chiariwarrior.webs.com/potsdysautonomia.htm
http://www.columbianeurosurgery.org/conditions/chiari-malformation
http://www.ncbi.nlm.nih.gov/pubmed/21796429


Brain Injury Association of Oklahoma

PO Box 88
Hillsdale, OK 73743
http://www.braininjuryoklahoma.org
(405) 513-2575

NorthCare Center
4436 NW 50th Street
Oklahoma City, OK 73112
http://www.northcare.com/children.htm
Medicaid Provider
(405) 858-2800

Oasis - (Oklahoma Area wide Services Information System)
PO Box 26901
Oklahoma City, OK 73126
http://oasis.ouhsc.edu
(800) 426-2747
(405) 271-6302

Oklahoma Parents Center
Statewide Parent Training and Information
700 N. Hinckley
Holdenville, OK 74848
http://www.oklahomaparentscenter.org
FREE
(877) 553-4332
(405) 379-6015

Do 2 Learn ¬ Educational Resources for Special Needs Kids
http://www.do2learn.com

Down Syndrome Association of Central Oklahoma
http://www.dsaco.org

Family Voices - Information, Advocacy and Support
http://www.okvoices.org

Learning Disabilities Association of Oklahoma
http://www.ldao.org

Learning Disability On-line
http://www.ldonline.org

Love and Logic Parenting
http://www.loveandlogic.com

National Alliance on Mental Illness
http://www.nami.org

Speechville - Speech/Language Disorders Resource and Information
http://www.speechville.com

Stars for Kids - Articles and Information
http://www.stars4kids.com

Wrights Law - Special Education Law and Advocacy
http://www.wrightslaw.com

National Dissemination Center for Children with Disabilities
http://www.nichcy.org

National Institute of Children's Mental Health
http://www.nimh.nih.gov/health

Oklahoma Autism Network
http://www.okautism.org