Tickets are $50.00 each, and we are only selling 650. Each will be entered separately in the drawing and has a separate and equal chance to win. The drawing will be held November 15, 2013. To enter online visit www.firstgiving.com/efmk/car-raffle, call our office at 314-781-4949, or email katie@stl-epil.org. Visit the Lou Fusz website to see all that they have to offer.

The Epilepsy Foundation of Missouri & Kansas is not responsible for any taxes or fees associated with the taking possession of the vehicle. You must be at least 18 years of age to win. In the event that fewer that 450 tickets are sold, the winner will receive half of the money raised by ticket sales in lieu of a new vehicle. A waiver must be signed to win, and you do not need to be present to win.

The post Would you like a chance to win a car while supporting people with epilepsy? appeared first on Epilepsy Foundation of Missouri & Kansas.

Emily Ramza, James Townsend and Susan Ramza at the Capitol.

I enjoyed getting to know the other teens and hearing their stories – how epilepsy has affected 46 other lives and families. The conference started Sunday night with a dinner for only the kids. The parents and program representatives from the local affiliates got together to hear from neurologists on what work is being done for new and better treatment options.

Monday was a full day of learning about the issues and preparing for our meetings with Congress. We learned how to approach the people we would be talking to in Congress. We listened to speakers, spent more time talking with each other and getting to know each other, and practiced our presentations. Monday night there was a break from the hard work for a fun and exciting networking party for the teens.

Tuesday was the big day – time to go to Capitol Hill. My parents Brian and Susan, my younger brother Jack, and James Townsend from the Epilepsy Foundation of Missouri & Kansas all joined me to meet with staff in the offices of Kansas Rep.Kevin Yoder, Sen. Pat Roberts, and Sen. Jerry Moran.

During these three meetings, I told them what it is like living with epilepsy and the impact on not only me but on my whole family. I explained how the side effects of the medications have effected my focus and concentration and made school harder, how I have lost babysitting jobs, I can’t get my driver’s license, and that I am more nervous playing sports now since hyperventilation is one of my triggers. We discussed public service programs, research, and legislation being proposed to assist people with epilepsy.

Kids Speak Up was an amazing experience that I will always remember. Not only did it allow me to have a voice and explain to people what I live with everyday, but it helped me meet other teens who know exactly what I am going through. Epilepsy is a challenging disorder. At the end of the day, no one other than you really knows what you go through, and even though your family is there for you and is affected by it as well, they can’t totally understand how you feel. I was able to meet 46 other people who understand what I go through. I was able to give people with epilepsy a voice through this program, and I hope this is only one step to being able to help others. Maybe one day, through my voice, there may even be a cure because of the time I spent in DC.

My mom appreciated being able to talk with other parents who understand how frustrating it can be to fight for your children’s rights at school and how frightening it can be to give your children the freedom she needs.

None of us knew each other at the beginning of the three days, but by the end we were friends and exchanging cell phone numbers and emails. We all realized we have to keep fighting to make a difference. I hope to return next year to Kids Speak Up.

Emily is a junior at Pembroke Hill School in Kansas City, MO. Her mother Susan is a nurse.

The post Kids Speak Up 2013 by Emily and Susan Ramza appeared first on Epilepsy Foundation of Missouri & Kansas.

All parents want their children to have the highest quality of life possible. The same is true of parents who have a child living with a chronic condition such as epilepsy. Obviously, these children will attain this goal only if the symptoms of their condition are eliminated or at least minimized. However, the symptoms of comorbid conditions can have an equal or even greater impact on their quality of life. Comorbid conditions refer to conditions that co-occur more frequently than expected by chance. Unfortunately, children who live with epilepsy are at risk for having multiple comorbid conditions.

The comorbidities of epilepsy may arise by four distinct mechanisms.¹ In some cases, the epilepsy and the comorbid condition have the same cause. For example, a genetic abnormality is responsible for both the epilepsy and intellectual disability often seen in tuberous sclerosis. In other cases, a comorbid condition such as a stroke or a tumor has caused the epilepsy. Comorbid conditions in epilepsy also may result from the seizures or the medications used to treat the seizures. For instance, nocturnal seizures can cause daytime sleepiness by disrupting sleep, and valproate can cause weight gain. Lastly, the relationship between epilepsy and the comorbid condition may not be known.

The comorbidities that children with epilepsy may face not only have several causes, but they involve multiple organ systems.^2,3 Some of the most common ones involve the brain such as the psychiatric, cognitive, and social comorbidities.⁴ The presence of these brain comorbidities in children with epilepsy is not surprising because some conditions are known to cause both epilepsy and these brain disorders. Examples of such conditions include Fragile X syndrome, Down syndrome, and cerebral palsy. Migraine headaches are another brain comorbidity that can share an underlying cause with epilepsy. The organs affected by other epilepsy comorbidities in children include the eyes, ears, and lungs.^2,3 The comorbidities involving other organs may indirectly lead to epilepsy or they may result from the seizures or the medications used to treat the seizures.¹

The recognition of comorbidities by parents of children with epilepsy and their child’s healthcare providers is an important step in improving the lives of these children. The comorbidities of epilepsy are challenging to recognize because they are numerous and not always obviously related to epilepsy. Although this article will largely focus on a few epilepsy comorbidities involving the brain, it hopefully will raise awareness of all comorbidities, lead to their treatment when present, and the adoption of preventative strategies when possible.

Psychiatric Comorbidities
Psychiatric comorbidities are extremely common among children with epilepsy and may afflict more than 25%.^2-6 They are far more common in children with epilepsy than in children with other chronic conditions that do not affect the brain and spinal cord. The comorbidities include mood disorders such as depression, anxiety disorders, attention deficit hyperactivity disorder, and conduct disorder. They can occur regardless of epilepsy type or how well controlled the seizures are.

Depression. This comorbidity occurs in 8-33% of children with epilepsy^2-4,6 and can occur in very young children. It is especially important to recognize in adolescents because the associated risk of suicide makes it a potentially life-threatening comorbidity. The hallmarks of this common comorbidity are altered mood and a loss of pleasure that interferes with daily activities. Alterations in mood include irritability and anger. The causes of depression in children with epilepsy likely are multifactorial and consist of neurobiological and psychological factors. The neurobiological factors may include the underlying cause of the epilepsy, the seizures themselves, the abnormal electrical discharges that occur in the brain between seizures, and the drugs used to treat seizures. The psychological factors may include the stress that accompanies living with epilepsy. The psychological stress of epilepsy probably is unique because seizures are unpredictable and uncontrollable once one begins. Although the optimal treatment for depression in the setting of epilepsy is unknown, it should address both the neurobiological and psychological factors. Thus, antidepressant medications and psychotherapeutic approaches such as cognitive behavioral therapy should be mainstays of treatment.^6,7

Anxiety. This comorbidity encompasses a group of disorders including panic disorder, obsessive-compulsive disorder, generalized anxiety disorder, social phobia and separation anxiety disorder.⁵Though anxiety disorders are common among children and adolescents in general, they are even more common in those with epilepsy affecting 15-50%.^3,5 Like depression, the causes of anxiety probably are multifactorial and include psychological and neurobiological factors. The psychological factors that contribute to experiencing anxiety include the fear of a seizure, the embarrassment of having a seizure in public, and the fear of having a seizure in the absence of a parent.^5,7 Of note, fear and anxiety may be symptoms of a seizure, especially a complex partial seizure arising from the temporal lobe. Research establishing the most effective treatment for anxiety disorders in children with epilepsy is lacking, but a treatment plan including both medication and psychotherapeutic approaches is reasonable.

Depression, anxiety, and other behavioral disorders are common in children and adolescents with epilepsy and negatively affect quality of life. These comorbidities are important for parents and healthcare providers to identify because treating these disorders can improve quality of life for these children. However, the treatments are complex and require the expertise of pediatric neurologists, psychiatrists, and psychologists.

Neurological Comorbidities
Neurological comorbidities occur very frequently in children with epilepsy. As mentioned above, the presence of these comorbidities in the setting of epilepsy is not surprising as many disorders that predispose children to epilepsy also increase their risk for other neurological conditions. Neurological comorbidities include learning disabilities and developmental delay, which occur in 40-50% of children with epilepsy.^2,3 These comorbidities are similar to the psychiatric comorbidities in that they occur even in children with epilepsy who do not have active seizures.

Intellectual disabilities. Children with epilepsy are much more likely than those without epilepsy to have school difficulties resulting in school-based interventions such as repeating a grade and needing extra help.^3,4 These problems arise, in part, from the intellectual disabilities that accompany epilepsy. As a group, children with epilepsy have a lower intelligence quotient (IQ) than those who do not. About 25% of children with epilepsy have an intelligence quotient below 70 or 80, with a score below 70 indicating an intellectual disability. These deficits occur in a variety of epilepsy types and span several cognitive domains including language, processing speed, and executive function. Although some children with epilepsy have normal cognitive function, children with mild forms of epilepsy can have intellectual disabilities, which may be present at the time of the first seizure.^8,9 This observation indicates that other factors besides seizure medications contribute to the difficulties children with epilepsy have in learning.¹⁰

Attention deficit hyperactivity disorder and executive function. Children with epilepsy have deficits in executive function, which includes attention, working memory, and sequencing.^8,9 Attention deficit hyperactivity disorder is very common in general but is far more prevalent in children with epilepsy occurring in 20-39%.^2,3,11 The characteristics of the disorder include hyperactivity, impulsivity, and inattention in several settings. Similar to depression and anxiety disorders, neurobiological and psychological factors probably contribute to its presence in children with epilepsy. Accordingly, medications and classroom accommodations are useful in treating attentional problems.^7,10Specifically, several studies indicate that stimulant medications such as methylphenidate are safe to use in children with epilepsy.^7,11

Neurocognitive comorbidities are prevalent among children with epilepsy and have a negative impact on quality of life. Neuropsychologists can identify these comorbidities through a battery of tests, and they can formulate an effective educational plan based on the results. These strategies are important towards maximizing cognitive development especially because these comorbidities are not amenable to treatment with medication except for attentional difficulties. Though medical therapy may not be able to treat the majority of these deficits, pediatric neurologists can help by minimizing the untoward effects of seizures and seizure medications.

Social Comorbidities
Children and adolescents with epilepsy can have significant social comorbidities that impair daily life.^4,7 Over half report limited activities, and nearly half report low social competence, which refers to forming productive and mutually satisfying relationships with others.³ These social comorbidities arise in part from the poor self-concept and low self-esteem found in children and adolescents with epilepsy. Naturally, the psychiatric comorbidities of depression and anxiety have a role in these issues of self-worth, but the persistent stigma associated with epilepsy also contributes. The social comorbidities are important to address in childhood and adolescence because of their potential impact on their quality of life later as adults. Psychotherapeutic approaches may be particularly helpful in this regard.

Other Comorbidities
Children and adolescents with epilepsy are at risk for additional comorbidities. Other neurological comorbidities include migraine, sleep disorders, and cerebral palsy. Non-neurological comorbidities include osteopenia, which seizure medications may exacerbate, and asthma, which does not have a clear relationship to epilepsy.

Conclusions
In summary, children and adolescents with epilepsy are susceptible to multiple comorbidities. Many are neurobehavioral and fall into a psychiatric, neurological, or social category. These comorbidities include depression, anxiety disorders, and intellectual disabilities that share a common underlying cause with epilepsy, result directly or indirectly from the seizures, reflect the psychological stress of epilepsy, or are exacerbated by seizure medications. Regardless of the mechanism by which they arise, they have a negative impact on quality of life. Some are responsive to treatment, which may be challenging to implement and likely requires a multidisciplinary approach including pediatric neurologists, psychiatrists, psychologists, and neuropsychologists. Parents of children with epilepsy should be aware of the many epilepsy comorbidities and monitor their children for them with the help of their healthcare provider. Once the comorbidity is identified, parents can enlist the appropriate help to address the comorbidity with the goal of maintaining a high quality of life for their child.

Dr. Thio is associate professor of neurology, pediatrics and neurobiology in the Washington University School of Medicine Department of Neurology; director of the Pediatric Epilepsy Center and neurologist-in-chief at St. Louis Children’s Hospital and chair of the Epilepsy Foundation of Missouri & Kansas professional advisory board.

References

1. Gaitatzis A, Sisodiya SM, Sander JW. The somatic comorbidity of epilepsy: a weighty but often unrecognized burden. Epilepsia. 2012;53(8):1282-1293.

2. Baca CB, Vickrey BG, Caplan R, et al. Psychiatric and medical comorbidity and quality of life outcomes in childhood-onset epilepsy. Pediatrics. 2011;128(6):e1532-1543.

3. Russ SA, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics. 2012;129(2):256-264.

4. Lin JJ, Mula M, Hermann BP. Uncovering the neurobehavioural comorbidities of epilepsy over the lifespan. Lancet. 2012;380(9848):1180-1192.

5. Ekinci O, Titus JB, Rodopman AA, et al. Depression and anxiety in children and adolescents with epilepsy: prevalence, risk factors, and treatment. Epilepsy Behav. 2009;14(1):8-18.

6. Hoppe C, Elger CE. Depression in epilepsy: a critical review from a clinical perspective. Nat Rev Neurol. 2011;7(8):462-472.

7. Salpekar JA, Dunn DW. Psychiatric and psychosocial consequences of pediatric epilepsy. Semin Pediatr Neurol. 2007;14(4):181-188.

8. Hermann BP, Jones JE, Sheth R, et al. Growing up with epilepsy: a two-year investigation of cognitive development in children with new onset epilepsy. Epilepsia. 2008;49(11):1847-1858.

9. Fastenau PS, Johnson CS, Perkins SM, et al. Neuropsychological status at seizure onset in children: risk factors for early cognitive deficits. Neurology. 2009;73(7):526-534.

10. Titus JB, Thio LL. The effects of antiepileptic drugs on classroom performance. Psychol Schools. 2009;46(9):885-891.

11. Depositario-Cabacar DF, Zelleke TG. Treatment of epilepsy in children with developmental disabilities. Dev Disabil Res Rev. 2010;16(3):239-247.

The post Children with Epilepsy and Comorbid Conditions by Liu Lin Thio, MD, PhD appeared first on Epilepsy Foundation of Missouri & Kansas.

Since January 4, 1985, I have counted on Kathleen to provide the up-to-date information and current statistics regarding epilepsy. Since January 4, 1985, I have counted on Kathleen to make sure our words to the public were grammatically correct and said exactly what we want them to say. Since January 4, 1985, I have counted on Kathleen to help me write grants and brainstorm ideas for improved service. Since January 4, 1985, I have counted on Kathleen to measure our program success. Since January 4, 1985, Kathleen has participated and presented at the national, state and local levels.

Now, on August 15, 2013, Kathleen will be retiring. She will be taking all her expertise, knowledge and experience with her. I am going to have to adjust. I am going to have to remember dates and names. I am going to do my own research and – oh my goodness – correct my own grammar! Can I get that professional advisory board organized? I will do my best. What about you? You better get your last question answered. If my Executive Review is flawed, send me an email correction. A new face will greet you at your next visit to a parent gathering.

I give my best to you, Kathleen. I am envious that you will have more time for grandchildren, husband and 98-year-old mother. Enjoy! Stop by with Michael’s cookies. Don’t forget our phone number. Remember my birthday is September 9.

Darla Templeton is the CEO of the Epilepsy Foundation of Missouri & Kansas

The post Executive Review by Darla Templeton appeared first on Epilepsy Foundation of Missouri & Kansas.

To vote:

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The post You can help us win a $20,000 grant appeared first on Epilepsy Foundation of Missouri & Kansas.

A few of the volunteers take a quick break to pose for the camera.

We are happy to announce a new record was set in both event attendance and money raised at the 2013 Victory Over Epilepsy Gala. Attendance increased by 50% and we raised over $32,000 for our education and advocacy programs. We are grateful to everyone who attended this event and look forward to making next year’s event bigger and better.

We are thankful for the many people who made this event possible. Fifteen wonderful volunteers solicited donations, sold raffle tickets and helped make sure the event ran smoothly. We also appreciate all of the event sponsors and donors. A full list can be found on our Partners page. A more detailed thank you is on our Special Events page.

A young volunteer tends the Havanese dog. A related puppy was in the live auction.

To see more photos from the event, please visit www.rayepondphotos.com. When you order any of the event photos, Raye Pond will generously donate 50% of the proceeds to the Epilepsy Foundation of Missouri & Kansas.

If you would like to join the 2014 V.E. Gala committee, want to be an event sponsor, or would like to contribute items for the auctions, please contact Joni Miller at 816-444-2800 or jmiller@efha.org.

The post Thank You for a Wonderful 2013 V.E. Gala appeared first on Epilepsy Foundation of Missouri & Kansas.

One in 20 children nationally is diagnosed with epilepsy. It is estimated to affect more than 200,000 people in Missouri & Kansas. Please help us win the fight for people in St. Louis with seizures by registering for the Seize the Day 5K Run/Walk – St. Louis.  

Please go to www.firstgiving.com/efmk/SeizeTheDaySTL to get started.  Thank you for helping raise awareness about epilepsy and inspiring others to support the Foundation.

The post Seize the Day 5k Run/Walk St. Louis appeared first on Epilepsy Foundation of Missouri & Kansas.

Proceeds will benefit the Epilepsy Foundation of Missouri & Kansas.

The Epilepsy Foundation needs your support to continue the fight to stop seizures, find a cure and overcome the challenges created by epilepsy.

One in 20 children nationally is diagnosed with epilepsy. It is estimated to affect more than 15,000 children and 10,000 adults in the St. Louis region. Please help us win the fight for people in St. Louis with seizures.

Register online at FirstGiving.

Must register by June 7th to guarantee t-shirt order.

On-site registration will begin at 6:30am on Saturday, June 22nd at 111 S. Geyer Road, Kirkwood, MO 63122.

5K Run and 1 mile walk will begin at 7:30am on Saturday, June 22nd.

The 5K run (3.1 miles) and 1 mile walk is through scenic neighborhood streets of Kirkwood.  The 5K run is Chronotrack chip timed by Big River Running Co.

Join us after the Run/Walk for family fun! There will be food, entertainment, a bubble bus, face painting and more!

One mile walk route:

5k run route:

The post Seize the Day 5k Run/Walk St. Louis appeared first on Epilepsy Foundation of Missouri & Kansas.

Get directions to the Capitol Plaza Hotel here.

Presentations:

Epilepsy 101: an Overview
Dr. Hammond - Epilepsy 101, an Overview.pdf

Author:	Dr. Nancy Hammond
Category:	Education
Date:	April 10, 2013

181.4 KiB
104 Downloads
Details...

Kansas Telehealth Services for Pediatric Epilepsy
Ms.Velasquez - Kansas Telehealth Services for Pediatric Epilepsy.pdf

Author:	Sarah Velasquez, MS, MAB
Category:	Education
Date:	April 10, 2013

284.8 KiB
56 Downloads
Details...

Management of Seizures in Children
Dr. Abdelmoity - Management of Seizures in Children.pdf

Author:	Dr. Ahmed Abdelmoity
Category:	Education
Date:	April 10, 2013

1.8 MiB
64 Downloads
Details...

Psychosocial Issues with Epilepsy
Dr. Strong - Psychosocial Issues With Epilepsy.pdf

Author:	Dr. Teri Strong
Category:	Education
Date:	April 10, 2013

54.2 KiB
64 Downloads
Details...

Public Health Dimension of the Epilepsies
Dr. Thurman - Public Health Dimension of Epilepsies.pdf

Author:	Dr. David Thurman
Category:	Education
Date:	April 10, 2013

400.8 KiB
52 Downloads
Details...

Women's Issues, SUDEP, and Status Epilepticus
Dr. Hammond -Women Issues, SUDEP, and Status Epilepticus.pdf

Author:	Dr. Nancy Hammond
Category:	Education
Date:	April 10, 2013

324.2 KiB
58 Downloads
Details...

Please use the following instructions to print multiple PDF slides on a page.

1. Open the PDF file and click on file
2. Click on print and select your printer
3. Set your print range on all pages and your subset on all pages in range
4. Set your page handling on 1 copy
5. Set your page scaling on multiple pages per sheet
6. Set your page per sheet on 4 or 6 (preferably 6 per page because you will use less paper)
7. Click ok to print

Program content:

• Epilepsy treatment
• Diagnosis
• Psychosocial issues
• Co-occurring conditions
• Resources

Individual tracks for Physicians, Nurses and Community Health Advocates

Symposium outcomes:

• Identify new medications and devices used to treat seizures.
• Implement comprehensive strategies for seizure management.
• Apply quality assessment evaluations to determine seizure types.
• Apply effective medication treatment.
• Determine appropriate milestones for referral.
• Identify resources for support, intervention and education.

Agenda:

7:30 – Registration, exhibits and continental breakfast

7:50 – Welcome & Introductions – Mimi Brown, MPH, HRSA, Project Access

8:00   Key Note Address – Public Health Dimensions of the Epilepsies: The context of the 2012 Institute of Medicine Report on Epilepsy – David Thurman, MD, MPH

8:30 – Overview – Nancy Hammond, M.D.

9:15 – Break

9:30 – Concurrent Break Out Sessions for physicians, nurses, community advocates

• Adults – Nancy Hammond, M.D.
• Nurses – Mary Ann Kavalir, CFNP, MSN
• Community Advocates – Teri Strong, PhD
• Pediatrics – Ahmed Abdelmoity, M.D.

11:45 – Break

12:00 – Lunch with special topic tables

• School Nurses
• Epilepsy in Adults
• Epilepsy in Pediatrics
• SUDEP, Status Epilepticus, etc
• Nursing Issues
• Psychosocial Issues
• Employment Issues
• Area Health Education Center
• Project Access

1:00 – Women’s Issues, Sudden Unexpected Death in Epilepsy, Status Epilepticus -Nancy Hammond, M.D.

1:45 – Q & A Panel Discussion- All Presenters

2:30    Evaluation

2:50 – Wrap Up

3:00 – Adjourn

Presented by:

Sponsored by:

The post EPILEPSY – A Symposium for Physicians, Nurses & Community Health Advocates appeared first on Epilepsy Foundation of Missouri & Kansas.

Epilepsy: A Symposium for Physician, Nurses & Community Health Advocates

April 13, 2013

Capitol Plaza Hotel in Topeka, KS

Program materials, breakfast & lunch, and 6.5 continuing education credits are provided for free. Advanced registration is required by April 8. Complete and return the form below or visit http://www.efmk.org/epilepsysymposium to register online. If you are a vendor interested in having an exhibit, contact Joni Miller at 816-444-2800 or jmiller@efha.org for more information.

Epilepsy Symposium
Epilepsy Symposium.pdf

Date:

February 27, 2013

122.7 KiB
115 Downloads
Details...

The post Epilepsy Symposium appeared first on Epilepsy Foundation of Missouri & Kansas.