Epilepsy Foundation

My daughter (6 years old) had her first seizure a month ago. We put a seizure protocol in place at the school and sent a Diastat Acudial to school to use in emergencies. The school nurse did seizure training with the teachers and staff and a month later I thought we were all set. The school nurse called me this week and stated that she spoke with the neurologist and had the orders changed to just call 911 after 5 minutes of seizing (when the Diastat should be used-who knows how long it would take them to show up and give it to her). She said the teachers were uncomfortable with the rectal delivery of the drug and were refusing to administer it in an emergency. I was shocked!

Not only had we just had an IEP a week early where NO ONE expressed any concerns, but the nurse left us out of any part of the change of the protocol. Help! What in the heck do we do now? What is your child's seizure protocol?


PS.

My son also has seizures and is in the same school district in a different school. No problems with them.

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Hi. I am also the mother of a son who has severe seizures. He has an IEP as well and has had many seizures at school. From the 1st grade teacher, special ed teachers, nurse and principal everyone has been educated about Epilepsy and how to handle Dallas when he has a sz. The nurse is notified immediately and is to go wherever he may be in the building when having a sz. He has a full time para-aide with him at all times (he is not to be left alone) and she also may assist when needed. In his backpack I pack a full set of clothes, towel, and his Diastat medicine. The backpack goes with him everywhere he goes thoughout his day while at school, even when we are out together. For back up I gave the nurse a extra dose of Diastat to be kept in her office just in case! I am very close with our nurses there at school and keep up with them often about his changes in meds. and so forth. I wondered if you have any type of organization to help you advocate during your IEP meetings? I have had to seek one out for my son and have made very big steps in getting him everything he needs while attending school. F.A.C.T. is the organization we are using. Hopefully, they could be of some help to you? Being prepared and ahead of the sz is how you get thru each day. You are already doing that! :) It would just help if people (schools) would do their part too! Please let me know if you need any more info! I feel that I am a world of information now that we have F.A.C.T. on our side!!!!
i am actually having the same problem. i had never had a grand mal in school before & when i did they called the life squad. my parents were called after the life squad. the emts asked my principal if the diastat had been administered and he said that i didnt have any medicine at the school. i have diastats in both buildings that i am at during the day. the emt knew this because i live in a very small town and i know all the emts on a first name basis by now. she argued that i did. i had stopped seizing and wasnt in need of a diastat. when i was seizing i was left in my desk my friend moved all the desks around me but forgot to get me to the floor. that was only the second grand mal she'd ever seen. after she'd moved the desks she ran for the office. everyone else just was there. my school has one nurse with two buildings. unfortunately, my nurse wasn't told about my situation until after she'd finished with a kid who had a fever. she was extremely mad about them not telling her. my nurse has now set up a schedule for seizure training for every teacher. i am getting a 504, because they keep telling me i will lose my credits, because i miss a lot of days due to epilepsy. tho my grades are all a's or b's they want to take away my credits.my social worker told me about this and we're getting it started as soon as possible
they have to if not.the.teacher the nurse. Would they tell a parent of a child with a nut allergy we dont feel comfortable giving them their epi pen? At my dd school they give her diastat after 5 mins and call 911. Id call the superattendent or someone and complain.that is not right or ok
Some schools do have policies against administering. We have not had that problem in our district, but a nearby district has that policy. One thing I know that someone tried was to have it written into the child's IEP that they must administer the diastat and when. If it is in the IEP, it is covered by federal law, which trumps state law in this kind of a thing. School's risk losing their federal funding if they do not follow the IEP. I am not sure if it worked in the instance I heard of around here, but it is certainly worth a try.
This is great info! I will work on getting this into her IEP. Thank you!




lsquier said:
Some schools do have policies against administering. We have not had that problem in our district, but a nearby district has that policy. One thing I know that someone tried was to have it written into the child's IEP that they must administer the diastat and when. If it is in the IEP, it is covered by federal law, which trumps state law in this kind of a thing. School's risk losing their federal funding if they do not follow the IEP. I am not sure if it worked in the instance I heard of around here, but it is certainly worth a try.
this is really sad what our society has become. We cannot even help each other w/o worrying what will happen with our good intentions.
But our schools DON'T have a nurse in them. One nurse covers 6 elementary schools. As a parent I was hoping that the teacher that cares for my child all day would help her in an emergency. :(



jeffrey greenwald said:
Speaking as a teacher and somebody who has E.(even though this is secondary) This is why there are nurse's in the school. A teacher has the potential of being in trouble for breathing on a child in the school system's nowaday's. I couldn't even imagine administering a drug or placing a thermometer in a child. First and foremost a couple hour's training doesn't cut it and I can lose my job.

if you go to mattysfund.com they have a epilepsy book to teach kidsabout epilepsy. Its called my friend matty. All proceeds go to the matty fund which has scholarships for epileptics a special camp seminars and funds epilepsy research
Ella Ladue said:
It looks like the school has agreed to train the principal and secretary. The nurse is getting the order reversed since I expressed concern that she had made changes to Lili's care without my consent. I do think finding a book about epilepsy for Lili to bring to class is a wonderful idea. I'll take a look on Amazon.



Mary Kate said:
Ella I would push then for the district to train one particular person in the building who is there a majority of the time (or two) to administer the distat. If she has a seizure that person is summoned while the teacher handles the other students. I taught until our daughter began having seizures (I stay home with the kids now) and I can say as a teacher my concern would be trying to care for your daughter and keep her safe and administering medicines she needs while 18-24 other students are not being supervised or cared for, especially if they are expected to clear the room. Is she in the special ed program? If so ask to have the special ed teacher or one of her aids trained to administer distat, the school nurse could do that easily. How old is your daughter? If she is old enough ask her how she feels about the teacher talking to the other students about epilepsy, maybe you could provide the school with some of the fantastic childrens stories out there about kids with epilepsy.

Above all you are doing a wonderful job advocating for her, keep it up! Remember that just because the school nurse called to make changes DOES NOT mean you need to agree to them, you can work with her to come up with alternatives so your daughter is cared for adequately. Keep repeating that she has every right to an education in an unrestricted safe environment and right now to me it sounds like that is not happening.

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