Community Forum

Seizure Protocol at school

Does anyone here have a teen who has tonic clonic seizures and therefore requires Diastat at school? If so, do you have a seizure protocol/plan of action on when and how to use it at school, and when and if to call an ambulance? If yes to this, how did you go about getting this plan set up? I have a teen whose SP & CP are becoming more TC as he goes through puberty, and I've requested that Diastat be on hand at school just in case. My son's neurologist wrote up a plan, but the school doctor is refusing to follow it...she wants 911 called for every unresponsive seizure (which could include any of his seizure types) and does not want the Diastat used. I am pushing for the 5 minute rule and the use of Diastat if necessary....she's fighting me all the way, eventhough his neurologist has written the plan! Can the school doc do this? Can she over ride my child's doctor's plan? We live in NY and he goes to a public school. Thank you in advance!


Hi Wendy
I have an8yr old son who has a sz disorder. We have Diastat just in case his sz last longer than 5 minutes. We have never had to use it, but we do keep a dose at his school. His school nurse has been very cooperative. The school requested a form signed by the neuro to be kept on file. We went over the instructions for giving the Diastat with the nurse, special ed teacher, and his last 2 classroom teachers. My son usually has sz when he is coming down with an illness, so we alert the school staff if he is acting like he is not feeling well. He had his first sz at school a couple of months ago and the staff handled it very well. I don't see how the school can over-ride the plan written by your neuro. It sounds as though the school doc may be intimidated by the thought of having to deal with something that appears very scary if your not use to seeing these situations. Good luck!

Sonya Walden
Hey Wendy!

My five year daughter was supposed to start Kindergarten this past school year and due to her seizures she would have to have Diastat on board at school. Well, if there was a school nurse there, would not have been a problem, but low and behold, we had problems! We live in TN and there are some good rules if you will but this issue has left a bad taste.
Since we do not have a nurse there at her school, the first suggestion was to move her to a different school in the county that had a nurse. Not only was this school a 30 minute drive from our home, but since it is the only elementary school in our county that has a nurse, all medically "challenged" children have been placed there. They were dealing with everything from food allergies to asthma and diabetes but no epilepsy. No.1--We refused to have to send her to a school that was that far away from home, the ambulance response time was slow and I could not get there quickly if needed. No.2--she should not be dragged from her familiar surroundings because before the seizures she was attending the elementary school's pre-K program for speech impaired and handicapped kids. Her doctor even said that it would cause problems for her. The list goes on and on and the make a long story short, her doctor wrote a plan that stated since I lived five minutes away and my mom worked--get this--beside the school that we could be first responders to her in case of a seizure and be able to administer the Diastat by the 6th minute. This was a wonderful plan but by the time that we get i approved she became so bad that she could not even tolerate the teacher coming for home bound. But the answer to your dilema could be this: our state says that if a doctor writes a plan of action for you child to attend a specific school with a specific list of actions to tend to them during a medical emergency then they have to abide by it! Good Luck!

Thank you for the input you was very helpful. I contacted our State Education Department and here is a response that the lady there gave to one of our superintendents:

Statewide School Health Services Center
43 Turner Drive
Spencerport, NY 14559

January 12, 2006

Robert Fogel, Assistant Superintendent
Newark Central School
100 East Miller Street
Newark, NY 14513

Dear Bob,

Pursuant to our telephone call this morning, I'd like to comment on the issue we discussed regarding a school physician refusing to allow a student to receive emergency medication (in school) that was ordered by the student's physician, in this instance, a Neurologist.

I'd like to summarize the facts, as I understand them. This situation involves a middle school student who sustained a Traumatic Brain Injury (TBI) several years ago, resulting in a Seizure Disorder. The school physician does not feel the student should receive rectal Diastat in school, even though the medication was ordered by the student's Neurologist, the parent is in support of the Neurologist's recommendation (in writing), and there is a Registered Nurse in the building to administer it. I also understand that the Neurologist has written an emergency protocol, which includes the protocol for administering rectal Diastat and follow-up care by EMS.

Diastat®, or rectal Diazepam (Valium®) is being used more today to stop acute seizures. It can be used to stop seizures in patients who are known to have epilepsy and perhaps prevent the need to go to an emergency room. The earlier the patient receives medication to stop an acute seizure, the easier the seizure is to stop. Diastat is widely used at epilepsy camps for children where hospital emergency rooms would otherwise be very far away.

There are no laws stating that a school physician or any other member of the district has to APPROVE orders written by a child's physician. Federal and State laws support administration of medications to students while at school. If a student needs to take a prescribed medication during the school day in order to attend school without jeopardizing their health or potential for learning, then medical orders need to be followed and implemented.

In my estimation, the school district is potentially opening itself up for legal action by the parents of this student if the Neurologist's orders are NOT followed. Please don't hesitate to contact me if I can be of further assistance.


Mary M. Capparelli, RN, CSNP
Executive Director
NY Statewide School Health Services Center
(585) 349-7630

cc: Rebecca Gardner, Student Support Services, State Education Department
Naomi Marsh, Student Support Services, State Education Department

I'm hoping this is all it will take to get the district to comply!
I wish you the best with your child and I hope you are able to work things out. If I can help you in any way, please email me at

WOW !! If that doesn't wake 'em up and make them do the right thing, my next step would be a lawyer! I know sometimes it's hard advocating with the schools, but it must be done. You have done a great service for your child! Way to go !!
((( hugs ))),

"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

I'll let you know the results as soon as someone from the district contacts me....I'm giving them a few days, so may be next week before I hear anything and reply here! Thanks for all the support and words of encouragment! It's not easy to tackle a large group who seems to be against you....very intimidating! Hopefully we will succeed w/o legal action! Keep your fingers crossed!


That is a awesome response from the state system. Hooray! I am glad that there is someone that is smart enough and honest to say the truth and actually want to see a child treated correctly and their medical needs met to all's responsibilities. I think I would frame that is not everyday that you get a letter from the school system wanting to act in your favor. Another victory for a deserving child.
Things are so negatively treated and handled here in Tennessee that I am thinking of starting an organization to inform and get awareness out about epilepsy in childhood and all of the different treatments and rules that need to be complied with. If there parents around here don't start becoming more proactive, we are going to see so many of our precious children lost to their disorders due to lack of gumption and action.


You might want to contact the folks that make diastat, I believe
they are working with a organization to get the nurses trained
and all schools in place to use diastat in all states.

SO you might contact them as to how to get help with this.


i have a 3min plan if my son has a 3 min sz ( has just had abance sz. ) or a full grand mal they call 911 then me they have the diastat at school . but or ems has it too .

forgot to add that the epilspsy foundation in your city will come in your school and teach the school on how to give diastsat and help train the staff in what type of sz your child has

Hello everyone,
The letter from the State Ed Dept. was not a huge victory for us.....the superintendent does not feel that State Ed has a right to tell him how to run his district, so he is not going to agree to the use of Diastat. Sooooooooooo, the Epilepsy Foundation has provided me with a lawyer, who will start out acting as just an advocate, but will take the role of my lawyer if need be. The principal, psychologist, nurse, and my son's teacher are all very frustrated and upset with the district administration. As a matter of fact, the principal apologized to me several times yesterday and said he was embarrassed to be a part of the whole thing! He also said (off the record) that it's just an ego/attitude thing going on with the superintendent. I've forwarded all kinds of info to the lawyer, so we will see what happens next. Thank you all for your kind words, suggestions, and support! I'll keep you posted on my progress!

Hi Wendy -

It is absolutely unbelievable to me that this ego-inflated superintendent is being so deplorable with your situation. I commend you for following through, and I am so sorry you are going through this. I am so glad the Epilepsy Foundation is working with you - hooray for them and their willingness to advocate for your son. If there is anything I can do to help, please let me know.

Good luck, and best wishes,

"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

I'm glad the efa is helping you with this, keep us informed as to how this goes. It shouldn't be a issue at all.


Sweet Victory..........
Finally the district has decided to comply with the neurologist's orders! They will be allowing the diastat at school! I think the threat of me getting a lawyer finally did them in! Here's to my son, Ryan!
Thank you to everyone here for words of support and encouragement! We can make a difference even if we have to fight!

CONGRATULATIONS!! Thanks for continuing the fight, in spite of the opposition. You are an excellent advocate for your son !!!
((( hugs ))),

"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

go to your school district and let them know what is going on also inform them that they are going agianst the health and disablitiy act.ask the doc if he is willing to be medically responsably for your child if not they have to aloud the meds.good luck

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