PL Newsletter 6-2007
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Page 4 parentlink A quarterly newsletter written by, for and about parents of children with epilepsy. All of these park’s websites include information on first aid and special services, but for a plan specially designed for your parentlink 1323 Forbes Avenue, Suite 102 • Pittsburgh, PA 15219 • 412-261-5880 1-800-361-5885 child, their associates are more Summer 2007 Volume 8 • Issue 2 than willing to help! DelGrosso’s Amusement Park: 814-684-3538; press 0 www.delgrossos.com/dap.html SpeakingSpeaking Out,Out, SpeakingSpeaking UpUp Dorney Park: 610-395-3724; press 0 www.dorneypark.com ach year, families from across the country join Hershey Park: forces in Washington, D.C. 1-800-Hershey; press 2 for to urge their elected officials Amusement parks general information or 0 to speak to support funding for to an associate. Eepilepsy programs, services, and EPILEPSY www.hersheypark.com research. The Kids Speak Up! program provides an opportunity for acation time is here again – the perfect time for your family to have an Idlewild and Soak Zone: children with epilepsy and their Vamusement park adventure. Many families affected by epilepsy/seizure disorder 724-238-3666; press option 5, or parents to receive advocacy training have concerns about& taking their children to amusement parks. While parents of 0 to speak to an associate. and to discuss the needs of people children with epilepsy do need to make a few more plans than they did before www.idlewild.com with epilepsy. Participants also meet their child started having seizures, the parks make it easy! Whether traveling to with key legislators and share their Disney World for the week or Kennywood for the day, rest assured that the park’s Kennywood: personal stories of life with seizures. staff are versed in how to help you and your family have a magical experience. Rider Safety Center - 412-461- This year’s Kids Speak Up! took The most important thing to do when you decide on your amusement park 0500 x 1171 place on April 22 – 25. Two destination is to call guest services. They can help you determine which, if any, www.kennywood.com families from western and central rides your child should avoid. Pennsylvania attended, and share Even with all of the planning, your child may still have a seizure while at the Disney World’s Guest Relations their experiences with epilepsy and center is also a great aid. Their park. Most amusement parks have a phone at every ride that allows the employee two very different forms of Guest Assistance Card is to call the medics. The medics should arrive within 30 seconds to 1 minute and designed for travelers who have epilepsy treatment inside this issue will assess the situation without immediately calling 911. The western and central Pennsylvania representatives at this year’s Kids Speak Up! program. Elaine Rotz conditions that may be invisible of Parentlink. Please call the EFWCP at 1-800-361-5885 if you’re planning a trip to an Zapata, Lech Zapata-Rotz, and William Zapata-Morales, with Barbara and Claire Eckert. to the casual observer and offers Telling your legislators about the amusement park this summer and have questions about how your child’s seizures special accommodations to all need for continued (and increased) might be affected. We have detailed lists of rides that may affect photosensitivity, who carry it. To obtain a card, support of epilepsy programs, Non-Profit Org. as well as websites and books that are wonderful assets as you plan your vacation. services, and research is one U.S. Postage call 407-939-6244. Paid Happy summer! critical way you and your family Pittsburgh, PA can make a positive change in the Permit No. 1390 lives of people affected by seizures. Phone calls, emails, faxes, and 1323 Forbes Avenue • Suite 102 ATTENTION PARENTS! most importantly, in-person visits Pittsburgh, PA 15219 can ensure that elected officials Recently we have had a number Our hope is to have a few small Please let us know if you are understand the impacts of epilepsy of you request information on parent group gatherings throughout western interested in participating or being a and why they should support Services delivered by the Epilepsy Foundation Western/Central Pennsylvania are supported by the Pennsylvania Department of Health through the Maternal and Child Health Services Title V Block Grant from the U.S. Department of group meetings. and central Pennsylvania so that you group leader, what area you would funding of EFWCP services. The Health and Human Services as well as State funds. The Pennsylvania Department of Health is an equal opportunity provider of In the past it has been are able to connect with more parents like the meeting to take place in, EFWCP has suggestions and tips grants, contracts, services and employment. challenging to put these together who are closer to you. We are also and what days and times work best. about how to talk with your because of location and time looking for a few parents to be the Please contact Kate Wilson at legislators – contact us at 1-800- conflicts; however, we would like to leaders of their area and help organize [email protected] or 1-800-361- 361-5885 or [email protected] for give it another try! meetings on a regular basis – with our 5880. Watch for more details about RETURN SERVICE REQUESTED help, of course! the groups this fall. more information and for resources to help you get started. Page 2 parentlink parentlink Page 3 EPILEPSY FOUNDATION WESTERN/CENTRAL PENNSYLVANIA Claire – Her Own Words The Ketogenic Diet – One Family’s Experiences Western PA Office: Central PA Office: 1323 Forbes Avenue 900 South Arlington Avenue Suite 102 Suite 126 I don’t remember how seizures felt. I was he months after Claire’s development. After 3 months, at least seizure-free, as we ever so slowly Pittsburgh, PA 15219 Harrisburg, PA 17109 only 4 and 5 years old. I am very lucky TOLL FREE: 1-800-361-5885 diagnosis were filled with 6 drugs, and every test imaginable, wean the diet, she has remarked “Oh, TOLL FREE: 1-800-336-0301 PHONE: 412-261-5880 because my mom and the doctor got me on a PHONE: 717-541-0301 unremitting seizures (just there was no improvement. Besides no – I’ll miss my favorite foods!” FAX: 412-261-5361 FAX: 717-541-1202 special diet and they stopped. WEBSITE: www.efwp.org about every kind), tremors, not stopping the seizures, the drugs It’s been more than 4 years since EMAIL: [email protected] I kind of remember taking yucky medicine were making her sick and she lost this all started – 4 years of close to 40 South Central PA Office: Ttwitching, and episodes of status. We TDD EOP/AUX AID: 1-800-855- that didn’t work. I remember wearing a 2880 1450 Scalp Avenue had another 2-week hospital stay, nearly 9 pounds, 20% of her body nights in the hospital, countless trips to Suite 1150 helmet and missing Pre-K and being in the medicines were added on, dosages weight. the ER and to doctor’s appointments. Northwest PA Office: Johnstown, PA 15904 hospital a lot. I didn’t like the IV’s at all. I still 915 State Street PHONE: 814-262-7494 adjusted, a helmet fitted. Claire had no I am forever thankful that I Claire has been stuck with a needle for Suite 101 have to get my blood checked a lot for the possessed the means to find more IV’s and blood draws more times than A copy of our official registration and financial quality of life. My once bright and Erie, PA 16501 information may be obtained from the diet, but I’m brave now. I have to travel a long Pennsylvania Department of State by calling sunny little girl was often reduced to information and “the” book by a Johns I could ever begin to count, been wired PHONE: 814-451-1135 toll free, within Pennsylvania, 1-800-732-0999. way to the doctor a lot for checkups. FAX: 814-451-1150 Registration does not imply endorsement. tears because she couldn’t color in the Hopkins neurologist about the for a dozen or more EEG’s (a scary, I am 8 years old and a regular kid, except lines anymore. Or she had to sit in a ketogenic diet. It was a daunting smelly, noisy process for a kid) and Policy Board Tom Trimm, Esq. for the diet, but I’m almost off it. I don’t mind Louis Testoni James Valeriano, M.D. nest of pillows, vainly trying to play a decision, but I requested we initiate valiantly downed more pills than most President Karin A.Vanek the diet at all because my mom makes me video game because it was a safe the diet. people three times her age. Sharon Aulicino Justin Yakovac very tasty foods. But it would be fun to make Christmas cookies and have popcorn activity. It was impossible to take her After more than two years on the There’s no question that the keto Dick Barton Board of Governors at the movie theater. out much without someone else there – diet, we’re not completely out of the diet is hard, especially with school-age Joyce Bender Douglas Dick My favorite part of Kids Speak Up was going inside the Capitol Building. I liked Louis Catalano, M.D. Steve Morris one hand always had to be free to woods, as Claire’s last overnight EEG kids – but any parent who’s done it Tom Chakurda Rich Ryan making a new best friend.