A QUARTERLY PUBLICATION OF THE EPILEPSY FOUNDATION WESTERN/CENTRAL PENNSYLVANIA Spring 2006

www.efwp.org

Making Choices Katey Nolan is succeeding at using diet as an epilepsy treatment option

Pennsylvania Epilepsy Research Grants Epilepsy and Bone Health Updates on Medications EPILEPSY FOUNDATION WESTERN/CENTRAL PENNSYLVANIA And They’re Off! Western PA Office: Central PA Office: 1323 Forbes Avenue 900 South Arlington Avenue Suite 102 Suite 126 Pittsburgh, PA 15219 Harrisburg, PA 17109 EFWCP Fun Run/Walks TOLL FREE: 1-800-361-5885 TOLL FREE: 1-800-336-0301 PHONE: 412-261-5880 PHONE: 717-541-0301 FAX: 412-261-5361 FAX: 717-541-1202 WEBSITE: www.efwp.org Coming to a City Near You! EMAIL: [email protected] South Central PA Office: TDD EOP/AUX AID: 1-800-855- 2880 1450 Scalp Avenue Suite 1150 Northwest PA Office: Johnstown, PA 15904 915 State Street PHONE:814-262-7494 Suite 101 Erie, PA 16501 A copy of our official registration and financial information may be obtained from the PHONE: 814-451-1135 Pennsylvania Department of State by calling toll free, within Pennsylvania, 1-800-732-0999. FAX: 814-451-1150 Registration does not imply endorsement.

Policy Board Board of Governors Louis Testoni Douglas Dick President Steve Morris Rich Ryan Sharon Aulicino Dick Barton Advisory Board Joyce Bender Barbara Johanson Louis Catalano, M.D. Bobbie Martha Tom Chakurda C. James Parks James D. Chiafullo Ronald Rohm Patricia Crumrine, M.D. James Valeriano, M.D. Eugene DeFrank George Whitmer Steve Greenberg George Harakal Professional Advisory Scott Heeter Board John Hinds David Adelson, M.D. Judge Maureen Lally-Green Jill Bischoff, CRNP Lawrence Leventon, Esq. Jane Breck, M.D. Edward Little Patricia Crumrine, M.D. Theresa MacLean Kevin Kelly, M.D., Ph.D. Denis McCarthy Carole Lane Grant Mellon William McGhee, Pharm. D. Robert Moorehead Fran Meyers, D.O. Paul Nemiroff, Ph.D., M.D., Donald Middleton, M.D. F.A.C.S. Mark Scheuer, M.D. James H. Norris, Esq. Looking for a fun way to spend Carol J. Schramke, Ph.D. June 17 18th Annual Pittsburgh Donn Patton James Valeriano, M.D. a beautiful summer morning with Tom Trimm, Esq. Pirates Fun Run/Walk Anne C.Van Cott, M.D. Karin A.Vanek your family and friends, a chance Rajiv Varma, M.D. for Epilepsy Justin Yakovac to win fabulous prizes, and an PNC Park, Pittsburgh opportunity to meet some of your Call 1-800-361-5885 for STAFF favorite local baseball and media more information Judith K. Painter Colleen K. Fulkerson Executive Director Special Events Coordinator celebrities - all while showing your August 5 4th Annual Harrisburg Peggy Beem-Jelley Lynne Gensamer support for the EFWCP? Then join Associate Director Financial and Benefits us for a Fun Run/Walk this Senators Fun Run/Walk Administrator for Epilepsy Kathi Finch summer! It’s a great chance to get Director of Gretchen Knaub City Island, Harrisburg Communications Regional Coordinator, involved with the work we do – the Central PA Call 1-800-336-0301 for Devin Baldwin money you raise funds programs Education Coordinator Susan Edmonds more information Regional Coordinator, like Camp Frog, employment and Francine Reyher Northwest PA Adult Services Coordinator school advocacy, and Project Becky Bollen August 19 4th Annual Erie SeaWolves Kate Wilson Central PA School Alert – and also contributes Fun Run/Walk for Epilepsy Children & Family Receptionist/Secretary Services Coordinator to research efforts on a national Jerry Uht Park, Erie Ricki Eggers Kristin Eden Information Management level. So come on out to one of our Call 814-451-1135 for Special Events Coordinator Coordinator three Fun Run/Walks this summer more information

Interaction is published quarterly by the Epilepsy Foundation Western/Central and join us in our fight for life Pennsylvania (EFWCP).We welcome your feedback.Questions,comments,letters to the editor, story ideas, articles, poems, photography or art submissions should be without compromise for everyone addressed to Interaction Editor, c/o EFWCP, 1323 Forbes Avenue, Suite 102, Pittsburgh, PA 15219; 1-800-361-5885, 412-261-5880, 412-261-5361 (Fax), www.efwp.org or for the hearing impaired TDD EOP/AUX AID 1-800-855-2880. affected by epilepsy.

2 Interaction A Note of EFWCP Welcomes New Staff Member

The EFWCP is very pleased to Welcome announce the addition from the Executive Director of a new staff member in its Pittsburgh office. Kristin Eden joined the EFWCP Dear Friends, as special events coordinator in April 2006. She is a recent graduate of I hope this issue of Interaction finds you and your family enjoying the warmer Robert Morris University with a degree weather, longer days, and beautiful blossoms of spring. After a long and cold in Business Management. Kristin is a winter, the growth all around us is a welcome change. native of Youngstown, Ohio, and moved to Pittsburgh in 2001 to attend Here at the EFWCP, we are getting into the spirit of the season by planting school. She was previously employed and nurturing seeds of our own. Work is well underway for all three of our by Kaufmann’s and was also a Camp upcoming Fun Run/Walks for Epilepsy, and I hope that you and your family, Frog counselor in 2003. Kristin will be friends, neighbors and co-workers will join us for what promises to be a great working on all of the EFWCP’s morning of fun, fitness and a little friendly competition. By participating in upcoming special events, including the Run/Walk nearest you, you too can plant seeds – seeds of support that will this summer’s Harrisburg Senators grow and strengthen the cause of epilepsy awareness. We need your help so Fun Run/Walk for Epilepsy. that we can continue to provide programs and services for the thousands of our friends across the state who turn to the EFWCP every year for assistance. inside this issue Money raised for each EFWCP event also supports research into epilepsy treatments, causes and cures. We all look forward to a day when patients have 4 Making Choices treatment options that forever eliminate seizures and medication side effects; Katey Nolan is committed to when doctors know definitively what causes each person’s seizures; and making her modified Atkins diet ultimately, when epilepsy can be cured. The seeds of hope for the future are work as a way to treat her epilepsy. being planted today, and your contributions to the EFWCP help move us toward 6 Kids Speak Up! these visions of a brighter tomorrow. For more information on current research Four young people from funding in the state of Pennsylvania, please see the article on page 7 of this Pennsylvania visited Washington, issue. D.C. to tell their legislators why supporting epilepsy funding is I look forward to seeing you at a Run/Walk this summer. I know that together, important the seeds we plant today will grow into something truly amazing – life without compromise for everyone affected by epilepsy. Batter Up! A local wiffleball tournament raises Best wishes, funds and awareness 7 Pennsylvania Epilepsy Research Grants Awarded

Judith K. Painter 8 Bone Health in Epilepsy Patients JudyExecutive Director Painter Lyrica Information about a new EFWCP staff in the Pittsburgh office showed their medication to treat epilepsy Steelers pride on Fridays during the run to this year’s Super Bowl. Staff wore their favorite 9 Important Safety Information Steelers garb, including jerseys of the about the Diastat AcuDial Foundation’s favorite player, Alan Faneca (#66). The “Faneca Fans” signs made by the staff were Calendar of Events proudly displayed at pep rallies in downtown Pittsburgh during the playoffs and at the post- 10 A Fabulous Fat Tuesday! Super Bowl victory parade. Staff and their signs made it onto local TV news coverage, raising The EFWCP’s 11th Annual Mardi awareness of Faneca and our united fight Gras Gala supports local services against epilepsy. Congratulations, Alan, and all of and Hurricane Katrina survivors the Super Bowl XL Champion Steelers!

www.efwp.org 3 COVER STORY

Scaling new heights, Katey conquered the rock wall at having success treating children with this year’s EFWCP Teen intractable (uncontrolled) epilepsy with Getaway. the ketogenic diet - 1/3 stop having seizures and 1/3 have fewer and less intense seizures. So, many teenagers and adults want to try the diet as well,” he said. “However, we have long known that it is exceptionally difficult for teens and adults to follow the ketogenic diet. In my thinking, the Atkins diet is kind of a ‘ketogenic diet lite.’ The Atkins diet can put you into ketosis (one theory as to what makes the ketogenic diet work), but unlike the ketogenic diet, you are not on three calorically even and precise fats-to- carbohydrate and protein meals per day. All of this hopefully increases the chances that adults can and will stay on the diet.” Katey’s diet is fairly restrictive. She can eat meat, cheese, and some vegetables, along with cream, pork rinds, some nuts and seeds, eggs, and some lunch meats. Some foods and drinks sweetened with Splenda are OK, as is 12 ounces of aspartame- and caffeine-free pop a day. Mayonnaise and butter are OK but ketchup must be lo-carb and only in small amounts. While the diet is working for Katey, it isn’t very kid-friendly. “I can’t eat anything with more than a few carbohydrates,” she said. “I can only have 10 carbs a day, so I can’t have pastas, potatoes, pizza, desserts, or most fruits. I can’t drink milk. Most of the foods a kid likes aren’t allowed on the diet.” Neelam Ketyal, clinical dietician at Children’s Hospital of Pittsburgh, offered Making Choices more insight into the diet’s requirements. “Patients trying the diet will be switched Using diet to control seizures takes to sugar-free medications and will need to supplement their diet with multivitamins and minerals. Blood work will need to be commitment from entire family done every 3 months, with additional testing taken as a baseline at the start of n 2006, more treatment choices for I now have only 1 or 2 a week,” said Katey. epilepsy exist than ever before. Many Dr. Inna Vaisleib, assistant professor of people find at least some improvement neurology at the University of Pittsburgh Iin their seizure control with medications; School of Medicine, Department of for others, brain surgery or the Vagus Pediatrics, Division of Child Neurology, Nerve Stimulator (VNS) may be an works with patients and their families as option. And for some young people, diet they explore their treatment options. She has been the key to gaining control of said, “A patient may want to discuss diet as their seizures and eliminating side effects a treatment option with their physician if from high doses of medication. medication trials have been ineffective, or Katey Nolan, 14, is using diet to help if the patient is sensitive to medications control her seizures. Under her and their side effects.” physician’s care and direction, she has Bruce Molyneaux, MSW, LCSW, a been eating a modified form of the Atkins clinical social worker attached exclusively diet since January 14 of this year and has to the Division of Child Neurology at already noticed a significant improvement Children’s Hospital of Pittsburgh, works in her seizure control. “I was having 2 to 3 with families who are using diet to help Katey met Senator Rick Santorum at this year’s seizures a day, and since starting the diet, gain seizure control. “Epileptologists are Kids Speak Up! program.

4 Interaction the diet and after being on it for 1 month. We ask that the family buy the Atkins diet book as a reference source and weigh the child weekly. We will also need to monitor the ketones the child’s body is producing. If they are not making ketones, the diet will not work.” The drawbacks to the diet haven’t outweighed the benefits for the Nolans. In addition to seeing the number of seizures drop since starting the diet, Katey has experienced other benefits, too. “I used to have migraines every day, and now I get them only after a seizure,” she said. “I feel more like playing and doing things than I have for a long time. I’m not tired all the time. I feel like I have more space because my family is not watching me as closely as they used to, which I hated.” Katey’s parents Joseph and Sue have noticed a change, too. “Her appearance has improved dramatically - she looks like a different child,” Sue said. “She now has a sparkle in her eyes and animation in her face. She is more alert, has more energy and is accomplishing her studies in half the time, and with more comprehension.” Katey has never let her epilepsy slow her down, even before starting the diet. She has been actively involved with the EFWCP for several years now, attending Camp Frog, Teen Getaway, the Family Fall Event and other events held throughout the year. Her most recent adventure was as a participant in Kids Speak Up!, held Katey at home with her brother Michael, 12, and their dog Tanga. March 25-28 in Washington, D.C. You can read more about Katey’s trip on page 6. The Nolans have approached the diet diet,” said Sue. “We have had to learn a In the end, the diet may not be right as they have approached her epilepsy – as new way of viewing food.” for everyone. And, a physician absolutely a supportive family. “We are now all on If families are considering the diet as must be involved in both the planning and the diet to some degree. Family meals do a treatment option, Joseph said, “I would implementation process, and should closely not include anything that is not on the tell them they must involve their child in monitor the diet’s progress. If patients do the decision. It is really the child’s try the diet, they should be prepared for decision to make. If they are not some major lifestyle changes. The worst part committed to 100% compliance with the of the diet for Katey? “Watching other diet, it will not succeed. The child has to people eat cake and ice cream.” For those have the willpower to turn down the treats who try the diet, though, there may be great their friends are eating.” rewards. For the Nolans, the best part of the Dr. Inna Vaisleib cautions, “Diets are diet has been Katey’s improved seizure not silver bullets when it comes to epilepsy control and improvement in all facets of her treatment. They have side effects and life. Sue said, “It is a thrill to see Katey patients need to be monitored. Patients enjoying life again.” And Katey would agree. absolutely need to work with a physician – “I hate the diet, but I hate seizures worse,” do not try a diet on your own!” Bruce she said. She would recommend the diet to Molyneaux adds, “The diet is an adjunct other young people who are facing seizures therapy, meaning that the child will still that haven’t responded well to medications. be on anti-seizure medication when “I would tell them to try the diet because it starting the diet. And, if you’re really has worked for me. It has made my life interested in the diet, talk with your better,” Katey said, adding, “It is not hard to neurologist about whether or not it is a learn what you can and cannot eat. With a Katey built her own scarecrow at the 2005 EFWCP good plan for you and your type of little willpower and toleration, they can do Fall Family Event. seizures.” the diet.” www.efwp.org 5 Kids Speak Up! FOUR YOUNG PEOPLE FROM PENNSYLVANIA VISIT CAPITOL HILL AND MAKE THEIR VOICES HEARD

ore than 40 young people Hi, I’m Corey Hoover. from across the country, I wanted to say thank you for the great time I had in Washington D. C. I got to Malong with their families, meet some great new friends and see a new area. I got to see the Capitol and attended the annual Kids Speak Up! meet our local legislative representatives. I got to see the cool memorials and the program March 28 – 30 in Washington beautiful cherry blossoms. It was really cool meeting Mighty Mike of the Harlem D.C. The program rallies young Wizards and Chanda of the U.S. Womens Hockey team!!! That was awesome!!! ambassadors with epilepsy between the My mom and I really appreciate what the foundation did and continues to do ages of 7 and 16 to personally petition for us. I hope us kids got through to our reps and they will continue to help us. congressional leaders for aid in Thanks again for everything! We hope to meet up again. Corey and his mom assuring better access to care, Corey Hoover of Nanty Glo, PA improved public education, and Lee Jacobs research towards a cure for epilepsy. Participants also got to meet Chanda Hi, I’m Nicole Esposito. Gunn, goalie for the U.S. women’s I had fun in Washington D.C. My favorite things about the trip were hockey team at this year’s Winter the monuments, meeting Chanda from the Olympics and helping to Olympics, and Mike Simmel of the spread the word about epilepsy to the Congressmen. I also learned more Harlem Wizards basketball team. Both about epilepsy on this trip. I had a lot of fun spending time and athletes shared stories of how they deal bonding with my sister Jacqueline. It was a great experience, and I hope with their epilepsy. Here, in their own that I can come back to Washington D.C. soon. words, are the highlights of the trip Nicole Esposito of Lititz, PA Nicole (left) and Jacqueline from the four young people from Hi, I’m Jacqueline Esposito. with Rep. Joseph Pitts Pennsylvania who attended Kids Speak Up. I enjoyed Washington because I met new people. I liked the tour of the capitol and the memorials and the monuments. I liked when I won a Mighty Mike T-shirt. I enjoyed the dinner and the food. I liked meeting Chanda Gunn and Mighty Mike Simmel. I enjoyed meeting Representative Joe Pitts and Senator Santorum. This is how I enjoyed D.C. Jacqueline Esposito of Lititz, PA

Hi, I’m Katey Nolan. Going to Washington D.C. for Kids Speak Up was a lot of fun. I got to meet and make friends with other kids with epilepsy. I met lots of interesting people, including Mike Simmel and Chanda Gunn, athletes with epilepsy. I enjoyed the tour to the monuments and the other convention activities. But my favorite part of the trip was our meeting with Senator Santorum. We actually got to meet with the Senator and he spoke to the kids and not just the adults. He made me feel welcome. Joseph, Katey, Michael and Susan Nolan Katey Nolan of Bellevue, PA Batter Up! Wiffleball tournament raises funds for EFWCP

The weekend of March 25 – 26 was a cold one, but warm hearts in Ernest, PA joined forces to have some fun and raise some funds for the EFWCP. Staff of the Rose Inn Restaurant organized the first annual Julie McCormick Wiffleball Tournament to benefit the work of the EFWCP. The tournament honors the memory of Julie McCormick, a young woman with epilepsy who passed away in January as a result of injuries sustained in a car accident. Twelve teams participated, each paying a $60 registration fee. Local The first place team celebrates their victory. Joe Frye of businesses donated items that were given away as door prizes, 50/50 tickets the Rose Inn (far left) and Pauline and Don McCormick (far right) presented the trophy to the team members. were sold, and other gifts were raffled off. The winning team won shirts and mugs, and many people are making plans to have a team next year. Because of the generosity of friends and neighbors in Ernest and surrounding communities, over $1900 was raised for the EFWCP. Thank you to the Rose Inn Restaurant and to all of the participants for your generosity!

6 Interaction PENNSYLVANIA EPILEPSY RESEARCH GRANTS AWARDED

The following grants have Research and Training Fellowships for hypothesis that by releasing been awarded to epilepsy Clinicians (Allotted amount = $50,000) glutamate, non-neuronal glial cells researchers in Pennsylvania for Name: Douglas C. Maus, Ph.D. contribute to the widespread Institution: University of Pennsylvania neuronal death which occurs during 2005-2006 by the Epilepsy Preceptor: Brian Litt, M.D. the latent period of epileptogenesis. Foundation. Project: Quantitative correlation of Supported by: American Epilepsy high-frequency field oscillations to Society and UCB Pharma, Inc. Epilepsy Research Foundation unit ensembles in human epilepsy New Therapy Grant Award Summary: In this project, we measure Name: Zongming Pan, Ph.D. Investigator: Brian Litt, M.D. and very fast activity from groups of cells Institution: University of Pennsylvania Marc Dichter, M.D., Ph.D. and regions of the brain in people Preceptor: Edward C. Cooper, M.D., Title: Associate Professor of with epilepsy. We will use this Ph.D. Neurology and Bioengineering information to understand how Project: Axonal KCNQ potassium Institution: University of Pennsylvania seizures are generated, how they channels - role in regulation of Title of Project: Second generation spread, and to develop new methods hyperexcitability antiepileptic devices: designing to prevent them with implantable Summary: Recently, it was discovered greater efficacy devices and more effective epilepsy that some genetic forms of epilepsy are Summary: The goal of this project is to surgery. caused by mutations that reduce the improve both the detection/prediction Supported by: American Epilepsy activity of a type of brain protein called and stimulation functions of current Society and the Grass Foundation, the KCNQ channel. The applicant and implantable antiepileptic devices in Robert S. Morison Fellowship his preceptor have discovered that order to improve their efficacy. The (2 years - $102,000) KCNQ channels may be directly project will test two promising involved in the initiation of nerve methods for seizure prediction/early Name: Mary Silvia, M.D. impulses (or action potentials). Such detection based upon support vector Institution: Children’s Hospital of impulses spread excessively when machines and genetic programming; Philadelphia seizures occur. The research proposed and test two novel brain stimulation Preceptor: Brenda E. Porter, M.D. will test the feasibility of preventing the algorithms, one based upon self- Project: A molecular and abnormal spread of action potentials organized criticality and the other on morphologic characterization of during epileptic discharge by enhancing continuous feedback, closed-loop dendrites and synapses in cortical brain KCNQ channel activity. stimulation. dysplasia Supported by: Epilepsy Foundation Amount: $75,000 for 1 year Summary: Children with severe epilepsy often are found to have an Name: Richard S. Saliba, Ph.D. Milken Family Foundation abnormal form of brain development Institution: University of Pennsylvania Translational Research Grant Award called cortical dysplasia (CD). We Preceptor: Stephen J. Moss, Ph.D. Investigator: Alison L. Barth, Ph.D. plan to study the shape and structure Project: Modification of GABA(A) Title: Assistant Professor of Biological of the neurons in CD to better receptor phosphorylation and Sciences understand how they contribute to receptor number in status epilepticus Institution: Carnegie Mellon the development of epilepsy. Summary: In this study, we will University Hopefully, new treatments for investigate the hypothesis that status Title of Project: Seizure prevention epilepsy can be found. epilepticus (SE) results from a using BK channel antagonists Supported by: Epilepsy Foundation reduction in the number of GABA(A) Summary: This proposal seeks to receptors at the surface of neurons, define BK channels as a new target thus reducing the inhibition of for intervention in the initial period Post-Doctoral Research Fellowships neuronal firing, causing excessive after seizures. The project aims to (Allotted amount = $40,000) neuronal activity. By performing these examine whether abnormal Name: Tommaso Fellin, Ph.D. studies, we will provide new insights excitability facilitated by BK channels Institution: University of Pennsylvania into the pathology of SE, which may occurs in other models of epilepsy. Preceptor: Philip G. Haydon, Ph.D. lead to the development of novel Amount: $50,000 for 1 year Project: Glial roles in epilepsy therapeutic strategies to alleviate this Summary: The role of glial cells in devastating disease. epilepsy has always been elusive. The Supported by: American Epilepsy proposed project will test the Society

www.efwp.org 7 Bone Health in Epilepsy Patients By Anne Van Cott, M.D.

Individuals with epilepsy are at an density tests are quick and painless. The salmon) and vegetables (soybeans, increased risk of bone fractures. Seizures most widely recognized test is called a turnips) are alternative sources for themselves can lead to joint dislocations dual-energy x-ray absorptiometry or DXA calcium. The body gets vitamin D in two and fractures. However, a high percentage test, which measures bone density at the ways: through the skin and from the diet. of fractures in epilepsy patients are not hip and spine. Vitamin D is formed naturally by the body associated with seizure activity. Recent The seizure medications most after exposure to sunlight. Fifteen studies have found that seizure commonly associated with bone loss are minutes in the sun (without sunscreen) a medications, or anti-epileptic drugs phenytoin, phenobarbital, and primidone. few times a week is sufficient for most (AEDs), increase the risk of fractures. Both carbamazepine and valproate have people to manufacture and store all of the Individuals treated with AEDs have been also been reported to cause diminished vitamin D they need. Experts recommend found to have bone loss identified as bone mineral density. Less is known about a daily intake of between 400 and 800 osteoporosis. This is an especially the effect of newer AEDs on bone health International Units (IU) of vitamin D, important fact for women, who already since these medications are frequently which can be obtained from supplements have an increased risk of osteoporosis used in conjunction with the other or vitamin D-rich foods such as egg yolks, after menopause. medications or are being used in patients saltwater fish, liver, and fortified milk. Osteoporosis is bone loss that causes who were already treated with the older Lifestyle changes can further reduce the bones to become fragile and more likely AEDs. It is still unclear how seizure risk of bone loss. Weight bearing exercise to break. Unfortunately, there are no medications cause bone loss. It has been (like walking, stair climbing and weight symptoms to warn a person that their proposed that AEDs change how the body lifting) along with smoking cessation and bones are thinning. The first sign is breaks down vitamin D. Vitamin D is eliminating excessive alcohol ingestion usually a fracture that occurs after bones important in maintaining healthy bones. strengthen bone. have already become brittle. Fractures It is important that individuals Individuals treated for seizures with occur most often in the hip, spine, and treated for epilepsy have adequate AEDs should talk to their health care wrist. Fractures in the spine can lead to amounts of vitamin D and calcium. The providers about their bone health stooped posture, loss of height, and recommended amount of calcium varies concerns. A DXA scan is an easy way to chronic pain. Hip fractures are the most based on age. Adults require 1,000 mg detect bone loss that can potentially lead serious consequence of osteoporosis and daily; over the age of 50 years, 1,200 mg is to fractures. A healthy diet, lifestyle and can result in permanent disability. the recommended daily intake. Dairy calcium/vitamin D supplementation can Osteoporosis can be easily diagnosed by products are an excellent source of help prevent bone loss. measuring the density of bone. Bone calcium. In addition, fish (sardines, Lyrica® Reprinted from EpilepsyFoundation.org generic name: pregabalin - pre-GA-ba-lin

Lyrica® (LEER-a-ka) is approved as potential benefit justifies the potential You should take the medicine as add-on therapy in the treatment of risk to the fetus. Women who are prescribed by your physician. Stopping partial onset seizures in adults. taking this medication and who wish this medication suddenly can produce Manufactured by Pfizer, Lyrica is to become pregnant should discuss unwanted side effects and potentially available in capsules in eight dosage treatment options with their increase seizure frequency. strengths from 25mg to 300mg. Lyrica® physicians before the pregnancy A history of an allergic reaction to is given by mouth. It is given two or begins. It is not known whether this pregabalin or any of its components is three times per day with or without food. drug is passed in breast milk, but this a possible contraindication to use of The most common side effects is common with most anticonvulsants. Lyrica. include dizziness, blurred vision, Lyrica® is eliminated through the Not everyone experiences side weight gain, sleepiness, difficulty kidneys and is therefore unlikely to be effects. There may be other side concentrating, swelling of hands and affected by other medications. No effects not appearing above. For a feet, and dry mouth. interactions have been observed complete list, consult your doctor, Safety in pregnancy has not been between Lyrica® and carbamazepine, nurse, or pharmacist. More detailed established. It is known that women valproic acid, lamotrigine, phenytoin, sources of information on side effects taking antiepileptic drugs have higher phenobarbital, and topiramate. are the drug’s prescribing information incidence of birth defects than In studies, Lyrica® reduced the sheet (package insert), the Physician’s women who are not. Lyrica® should frequency of seizures by 50% or more in Desk Reference, or pharmaceutical be used during pregnancy only if the up to 51% of people who were treated. company that produces the drug.

8 Interaction May 20 June 17 July 22 calendar of events Teen/Young Adult 18th Annual Pirates Wildlife Safari Adventure Networking Meeting Family Fun Run/Walk Lake Tobias Wildlife Park, Halifax Palace Business Centres, Erie PNC Park, Pittsburgh July 25 May 24 June 22 Support Group 11th Annual Westmoreland Support Group, speaker, Palace Business Centres, Erie County Sports Dinner & “Anger Management” July 27 Auction Life’s Work Building, Pittsburgh Ferrante’s Lakeview, Greensburg Support Group, speaker, June 22 “Medication Update” May 30 Support Group Wellspan Neurology,York Support Group Picnic Wellspan Neurology,York August 5 Farquhar Park,York June 25 – July 1 4th Annual Senators May 30 Camp Frog Family Fun Run/Walk Support Group Camp Conrad Weiser,Wernersville Commerce Bank Park, Harrisburg Palace Business Centres, Erie June 27 August 19 June 6 Support Group 4th Annual SeaWolves SeaWolves Family Fun Run/ Palace Business Centres, Erie Family Fun Run/Walk Walk Team Captain Party July 9 – 15 Jerry Uht Park, Erie Erie Camp Frog August 24 June 13 Camp Fitch, North Springfield Support Group School Nurse Conference July 20 Wellspan Neurology,York PSEA Building, Edinboro Support Group Life’s Work Building, Pittsburgh Important Safety Information About the Diastat AcuDial By Dr. Greg Kricorian, Director, Medical Affairs,Valeant Pharmaceuticals International

Valeant Pharmaceuticals North America • Bring your Diastat AcuDial with you to Information at 1-877-361-2719 or visit our has received complaints concerning small the pharmacy for exchange. website at www.diastat.com. cracks at the base of the plastic tip of some • Pharmacists should be instructed to Diastat® AcuDial™ (diazepam rectal gel) contact Rx Hope at 1-800- 511-2120 or Instructions for Inspecting Diastat applicators. Complaints of cracks at the base www.Rxhope.com for replacement AcuDial of the plastic tip have been received for both product. Please follow these 4-step instructions the 10 mg and 20 mg product twin-packs. • Keep your current Diastat AcuDial in to carefully inspect the Diastat AcuDial for Valeant has not received any complaints on your possession until a replacement is any crack. Be careful not to fully remove the 2.5 mg Diastat (diazepam rectal gel) available through the pharmacy. the cap from the syringe during inspection. delivery system. • For any potential seizure emergencies There is evidence that the product may that may arise, immediately dial 911 in Step 1: Holding syringe in one hand with leak out from these cracks when the the event of a seizure in which the large end of oval pointing up and down, plunger is depressed, possibly preventing appropriate dose of Diastat delivered place index finger in contact with cap to full dosing and potentially resulting in a cannot be verified with certainty. apply counter force when cap is opened. sub-optimal therapeutic response. There is • Patients and caregivers should also Step 2: Using the opposite hand, grasp also a risk that skin may get pinched in the inspect the product for cracks the cap firmly with your index finger, crack during product insertion and periodically (i.e., monthly), and applying pressure to the seal pin to hold it administration. Valeant is working diligently immediately return damaged syringes to in place. and quickly to resolve this situation. their pharmacy and exchange those units Step 3: Apply downward force with your which have a cracked applicator tip. In the interim: thumb to create an opening 1/4 to 3/8” to view base of syringe tip and inspect for • Patients and caregivers using this As stated in the prescribing crack. Adjust angle to give best view of product should be told of this situation. information, if a decision is made to use syringe tip. • Patients and caregivers are advised to Diastat AcuDial, patients should have an inspect the Diastat AcuDial applicator as emergency number nearby (i.e. 911 or Step 4: While maintaining pressure on the outlined here. ambulance), to be utilized if appropriate seal pin, apply an upward force to close • Any product with a cracked tip should therapeutic response is not achieved. the cap. Rotate the syringe 180 degrees be returned to the pharmacy for Should you have any additional and repeat steps 3 and 4. immediate replacement. questions, please contact Medical www.efwp.org 9 A Fabulous “Fat Tuesday!” EFWCP Mardi Gras Gala supports local services he EFWCP “let the good times roll” on Fat Tuesday, February and Hurricane Katrina survivors T28 as they celebrated Mardi Gras with more than 700 of Pittsburgh’s heartiest revelers. The GOLD SPONSOR Crossgates, Inc. 12th Annual Mardi Gras Gala saluted Cyberonics Murry Gerber, Chairman, President GlaxoSmithKline Children’s Hospital of Pittsburgh and CEO of Equitable Resources, as Divison of Child Neurology, King of the Mardi Gras. Guests KING’S COURT SPONSORS Children’s Hospital of Pittsburgh toasted Gerber and the members of Babst, Calland, Clements & Duquesne University his court - Gregory Babe from Bayer Zomnir, P.C. Easley & Rivers, Inc. MaterialScience, Kim Tillotson Bayer MaterialScience Eat’n Park Hospitality Group/ Fleming from Hefren Tillotson, Buchanan Ingersoll, P.C. Parkhurst Dining Services Morgan O’Brien from Duquesne Deloitte & Touche, LLP Eisai Light, and David Shapira from Giant Dietrich Industries Ernst & Young, LLP Eagle – for the many contributions Duquesne Light Federal Home Loan Bank they make to communities in Eckert Seamans Cherin of Pittsburgh southwestern PA, all while & Mellot Federated Investors supporting the mission of the Equitable Resources Fisher Scientific EFWCP. Because of the generosity of Equitable Resources Greater Pittsburgh Orthopedics this year’s attendees, more than Federated Investors Associates $318,000 was raised! Giant Eagle Foundation Hefren Tillotson This year’s EFWCP Creole-style Heeter Printing Highmark, Inc. party also paid tribute to New Hefren Tillotson Howard Hanna Real Estate Services Orleans, the original home of H.J. Heinz Company Jewish Healthcare Foundation Mardi Gras. To honor the spirit Tricia and Bill Kassling/Wabtec Kurt J. Lesker Company and resiliency of “The Big Easy,” Marsh USA, Inc. MARC USA local artist Kate Flaherty Mellon Financial Corporation Massaro Corporation (www.flahertyartworks.com) was PricewaterhouseCoopers McKamish, Inc. commissioned to produce an original Reed Smith, LLP Meyer, Unkovic & Scott, LLP oil painting. This image was featured Reed Smith, LLP National City Bank on the Gala invitation and program, Respironics Nova Chemical Company beautifully capturing the vibrant Sprint/Nextel Ortho-McNeil Neurologics energy of the French Quarter. The United States Steel Corporation Oxford Development painting was also auctioned off at the UPMC Pepper Hamilton event to raise additional funds for UPMC Health Plan PNC Financial Services Group epilepsy services. A portion of the UPMC North Hills Passavant Poerio, Inc. night’s proceeds, along with Voyager Jet Center Reed Smith, LLP donations received through a special Schneider Downs & Co. Inc. contribution campaign, were given to TABLE SPONSORS Sky Bank the Epilepsy Foundation affiliate in Snavely Forest Products, Inc. New Orleans. This office was Abbott Laboratories The Hillman Company devastated by Hurricane Katrina, and Accenture Thorp, Reed & Armstrong, LLP as a result of the Gala’s generous AON Corporation University of Pittsburgh guests, $10,000 has been given to the Bender Consulting Services, Inc. Valeant Pharmaceuticals Louisiana affiliate to assist in their Bender Consulting Services, Inc. West Penn Allegheny rebuilding efforts. Thank you to all of Cisco Systems Health System our wonderful Mardi Gras supporters Cohen & Grigsby, P.C. for making this one of the most successful EFWCP events ever!

10 Interaction William Benter was the winning bidder of the beautiful painting commissioned for this year’s Gala.

King Gerber addressing his subjects while last year’s King and Queen, Hoddy and Mary Anne Hanna, look on.

The Mardi Gras Gala Royal Court (left to right): Kim Tillotson Fleming, Hoddy and Mary Anne Hanna, King Murry Gerber, and Morgan O’Brien

Former Pittsburgh Steelers player Louis Lipps

Pittsburgh mayor Bob O’Connor (left) with Allegheny County Chief Executive Dan Onorato EFWCP board member George Harakal and his wife Amy and his wife Shelly www.efwp.org 11 My goal has always been to live my life with epilepsy instead of around it. -Mike

Epilepsy is what you have, not who you are. Living with epilepsy can sometimes present unexpected challenges. The EFWCP can work with you to find resources, answer questions, and create solutions so that you can live with epilepsy instead of around it.

For more information, visit www.efwp.org or call 1-800-361-5885.

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Services delivered by the Epilepsy Foundation Western/Central Pennsylvania are support- ed by the Pennsylvania Department of Health through the Maternal and Child Health Services Title V Block Grant from the U.S. Department of Health and Human Services as well as State funds. The Pennsylvania Department of Health is an equal opportunity provider of grants, contracts, services and employment.

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