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Issues with People Running Summer Programs

Thu, 06/08/2017 - 02:44
Hi everyone! I'll just jump right into it. I am 17 and have had 2 documented grand mal seizures, which started at the age of 15. However, I have had other types of seizures since I was about 10. I wasn't on medication until I had the first grand mal at 15 because I didn't know I had epilepsy, but that's another story. Anyways, I was on Keppra for two years, and was taken off in March of this year. In the past week, I have been put on Zonisamide because of a recent grand mal. Between the time I was taken off of Keppra and put on Zonisamide, I applied for a trip to Australia, and I am going. They asked about medications, but I wasn't on any at the time so I didn't say anything. I informed the people running the program about the Zonisamide, and now they are mad at me and my family for not saying anything before even though I did not have a medication to put down at the time. They were rather hostile. They want to have a big meeting with me and my family now even though we have assured them that everything is under control, and my doctor agrees that everything is fine (we told him about the trip). I have had similar experiences in past summer programs. One time, the lady running a ballet intensive wanted me to report to a chaperone every time I ahd an aura/petit mal/we-don't-know-what-to-call-them. This is nearly impossible because sometimes I have 15/day and they blur together. Could anyone explain to me why people like this are always so bent out of shape about epilepsy? Is it a legal thing? A stigma? Should I just not say anything from here on out? Thank you!

Comments

Well stigma could be a part.

Submitted by just_joe on Thu, 2017-06-08 - 17:15
Well stigma could be a part. But if you use common sense you would see that THEY are responsible for you and your well being when you are there at camp or other activity away from home. If you were to have a seizure they would need to know more. Doctors to call and medications need to be available. Going to a retreat is about the same. Hey just going across town to sleep over the weekend with a friend the parents need the information. So give it to them and please give them the 24/7 help line to call if they have questions about Epilepsy

Thanks Joe.Some other

Submitted by epihelp on Fri, 2017-06-09 - 16:00
Thanks Joe.Some other thoughts... usually people respond negatively because they don't know enough and may be scared. Fear is common when you don't know what to expect. Try to take a deep breath and take charge.. Tell the you have doctor's permission and you can give them a form with information about your seizures and how they are treated. Use this seizure response plan  to make this easier. http://www.epilepsy.com/get-help/managing-your-epilepsy/seizure-response-plans-101http://www.epilepsy.com/sites/core/files/atoms/files/myseizureplan.pdfIt's your responsibility to bring your own medicine, take a list of medicine with you and tell them what you do or do not want done if you have a seizure. If they don't understand, they are likely to send you to an emergency room which is crazy, but often happens. Also think about what you can do when traveling to lessen the chance you could have a breakthrough seizure. Here is a section that may help. http://www.epilepsy.com/get-help/managing-your-epilepsy/adapting-plans-travelMost importantly have a great trip! A little preplanning will hopefully make this go smoother and let you enjoy the experience! And all this preplanning will help other people learn a iittle bit more about epilepsy and make it easier for someone else next time... 

Thank you infomation.Very

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