How should schools handle potential seizures?

[Trudy]

Hi! My name is Trudy and my 10 year old son, Jordan, just had his first two seizures in the past six weeks. Obviously it has been quite traumatic but I won't go into that because you have probably heard it all before.

I am finding my footing as to how to handle it with others to whom we entrust his care. So far, I have provided written instructions to his school, karate instructor and babysitters regarding how to respond if Jordan has a seizure while in their care. I used the standard procedures that are published everywhere, including, "Do not call an ambulance unless seizure last longer than 3 minutes or person stops breathing." Jordan's school has advised me that they are legally required to call an ambulance. He attends a small private school specializing in children with dyslexia, so perhaps the rules are different with private schools vs. public. They do not have a nurse on staff.

For many reasons, it is preferable that Jordan not be sent to the ER unless it is truly an emergency, which, based on what I have read, is not likely.

My question: Does anyone who has dealt with this situation have any advice for me? Of course his well-being is the most important thing and I would want the school to act in his best interests, but an unnecessary trip to the ER in an ambulance is kind of traumatic for a child and not something that we would want to do if we don't have to. Does anyone have any experience with this? How have you handled it? Is it appropriate to expect the school to be able to evaluate the length of his seizure and whether he is breathing? I do understand their concerns and so it looks like we have to consent to what they have said, but still, I would love feedback from any experts out there.

Thank you very much!

Trudy

 

[RobinN]

Hi Trudy
Welcome. Sorry to hear about your son. My daughters first seizure was when she was 14. She is now 16 and I have to deal with this sort of mentality from time to time. Rebecca's school has a letter from a neurologist that says 5 mins ( some disagree with this, but I am perfectly fine with it, now that we are into our second year of seizures). I have staff at the school that deal with Rebecca each and every time she has a seizure, so she knows what is different and when the EMTs should be called. She has hit her head a few times, and of course you want that checked out. Also she had a status seizure once and that was dealt with at the ER.

Then we have the campus police officer. A female, whom I am friendly with. She states very sternly that if she is around when this happens she will always call. She will not be liable for my daughters health. I understand and take a deep breath.

I stopped working so that I could be available to the school, since these were happening so often with Rebecca. I always get in the car and go there. I want to know that she is okay, and this takes the burden off the staff employee so that she can get back to her work. If I arrive in time and the seizure is not that bad, I can sign a release from the paramedics. If all of her vital signs are okay, and she is coming around in the typical fashion, I sign the form. We have become very friendly with the EMTs and they understand the predicament that I am in. They usually call it in to the local hospital and tell them how we are treating Rebecca, and they always release her to me.

I understand your frustration. Seems quite silly to have the IV line put in for no reason. When you say Epilepsy at the hospital, they nod and say we will let you continue to deal with this with your neurologist, and after quite a long time of waiting and waiting we are on our way.

Perhaps you can go talk with the paramedics that would be the ones to come. They will be the ones that will most likely have to deal with your son as he gets older, if the seizures continue. I do think it is very approapriate for the school to have this kind of knowledge, even my daughters best friends know how to handle a seizure. Perhaps they would be more comfortable if someone from the local Epilepsy Foundation came out to answer questions. I also saw a video on their website. I tried to buy it but had a difficult time with the shopping cart.

I think it gets easier the more times it happens... sad to say.

I hope this helped.

 

[Bernard]

Hi Trudy, welcome to the forum. :hello:

I don't know that you have much recourse in forcing a private school to follow your wishes. You might contact your local EFA chapter and see if they can talk to the school - maybe offer some educational guidance that would help them adapt their response policy.

 

[Trudy]

Hi Robin,

Thank you very much for your very informative reply. You offered lots of good advice and I will definitely explore all of these options. I feel fortunate to be able to benefit from the experience of other parents as I navigate this "new world".

Thank you!

Trudy

 

[Trudy]

Hi Bernard,

Thank you for your suggestions. I will definitely look into them. Between your advice and Robin's, I feel better-equipped to handle this situation. Thank you!

Trudy

 

[skillefer]

Actually, your doctor can fill out a protocol form which specifically states when an ambulance must be called. You might find that they take a form from a doctor more seriously then a parent letter. The protocol form has to be renewed every year. At least, that's how it works in public schools. You might want to ask the school nurse. I'm over 18, so even if the school calls an ambulance, I can refuse to go with them. I just have to sign a release of liability. If you get to the school before the paramedics leave, they'll ask you to do the same.

 

[tinasmom]

I would most definetly look into the laws regarding the calling of an ambulance. You might want to check out the wrightslaw webpage as they deal with federal laws regarding schools and disabilities. It might also be a good idea to look into seizure training for the school. You can talk to your local epilepsy foundation for help with training. It is so frustrating working with the schools, but don't give up and educate yourself on all the laws. When they know you are educated in the laws, they tend to listen to you.

 

[BuckeyeFan]

:cheers:

Welcome to another loving parent to CWE. I personally have E myself, but have been astounded by the number of parents, spouses, and siblings reaching out for assistance on this site. I am sure you will find much help from others just like Robin (Mother) and Bernard (Husband).

I thought about your situation from a couple points of view. First, I can imagine sitting in a board meeting for the school and making the policy to always call an ambulance because no one on the staff is qualified to make that call between what is an emergency and what isn't. That is a tough call for them as they need to protect both the students and the school.

Second, as a volunteer EMT for 20 years, Ohio law states that a minor must be transported to the hospital once the ambulance is called, unless a parent or legal guardian shows up and signs off on a release. So that kind of throws the ball back in the schools hands to call or not to call. {though I can't say that we never took a little extra time before leaving to the hospital if we knew the parent was on the way}.

Third and most importantly is your view. Try the route of the doctor that was listed above. Also look into getting an IEP. I don't know about PA, but in Ohio I believe even the private schools are required to follow IEPs. With a medical condition on the IEP, the doctor's orders may have more weight.

Good luck and please visit often.

:cheers:

 

[korisue]

My daughter is almost 4 but she has been going to "school" this year. It is actually through the County Education Service District. I don't know if you have that where you are, but should. Even at her age we have prepared a medical protocol and all staff at that school are trained (go over protocol) on it. What has been stated in other posts here is true. By law, anyway in Oregon, an ambulance has to be called if the seizure goes over the protocol time ( 5 minutes on minors) - if we beat them there we can sign off on ambulance. The school nurse keeps a prescription of her Diastat at the school if she does have a long seizure. Her protocol is put together by her primary dr, her neurologist, school staff and my husband and i. I am to be called immediately if she starts a seizure. They are to follow seizure guidelines as far as keeping her on her side with airway open. Protocols can be simple or as complex as you the parent feel they need to be. And your public school should also have guidelines on this as they do for other illnesses and problems. My best advice is to see if your county has an Education Service District which specializes in children with medical or physical issues. They act as a go between for us and anything Jess does or enrolls in. Good luck and god bless!

 

[speber]

I can only input here that...

...getting to know the people that would have to deal with the problem when it occured was my parents only real solace. In Liberty Hill (a very small town north of Austin where I was raised) I had many seizures at school, but there were no HUGE problems because my parents were close to the principal and my teachers. I remember coming home in the back of the principal's station wagon once following a seize!
Times have changed and people are more 'on their guard' it seems sadly...but for me, I will always try my best to get to know people who may have to deal with my epilepsy so both them and I can feel a little more at ease.
:twocents:

 

[haird18]

There is a program from Texas Concil for Developmental Disabilities which has plenty of info. Also I grew up having seizures in the school system. And it is not easy for him at all! The program you want to is called IDEA and just become advocate for him. Just remeber talk to his teachers and parents of the school kids to continue be positive advocate!

 

[RobinN]

...getting to know the people that would have to deal with the problem when it occured was my parents only real solace. In Liberty Hill (a very small town north of Austin where I was raised) I had many seizures at school, but there were no HUGE problems because my parents were close to the principal and my teachers. I remember coming home in the back of the principal's station wagon once following a seize!
Times have changed and people are more 'on their guard' it seems sadly...but for me, I will always try my best to get to know people who may have to deal with my epilepsy so both them and I can feel a little more at ease.
:twocents:

I agree times have changed Speber, but I don't think the best humans have. I think you have said it well. This is what gives me solace too. I have a wonderful woman, that treats Rebecca's seizures exactly as I would. When she calls the ambulance I know it is the right choice to make. Of course I am minutes from the school, but I am blessed that she is the first one (other than teachers and students who are usually overcome) to HELP Rebecca.

This is a reminder to do something special for this person. I always thank her after each episode, but I want to do something a bit more. Actually, what I like to do is send notes to the Principal when I catch someone being at their best. Thanks for reminding me.

 

[hawke86]

I think schools should have teachers and the rest of the faculty properly trained. They need to be properly in what to do in case of a emergency.

 

[tinasmom]

Hawke -

You are exactly correct. That is why I am pushing so hard for our school district to have everyone trained. We have to take it upon ourselves to push for this education.

 

[Trudy]

thank you

Wow - so many helpful replies since I posted my question 5 months ago. I have since followed much of your advice - contacted my local chapter of the Epilepsy Foundation and they just conducted a presentation at the school a few days ago for the faculty. I feel better knowing that they are more comfortable with how to respond. Also, the fact that my son has been seizure-free since his last seizure in March (and starting on Lamictal) makes me feel much more secure that it is only a remote possibility now. Thank you to all for sharing. It is a wonderful thing to have so many voices of experience to guide newbies like me through this journey.
Trudy

 

[RobinN]

I am glad to hear that your son has been doing well. I hope it was just an unusual episode at the time.

 

[brain]

:hello: Trudy

Welcome to CWE and glad to know things are
working out now. And I agree, Schools - both
Public and Private; everyone should be trained
to handle seizures, and including emergencies
as well. It's a wonderful thing you were able
to get a hold of your local EF Chapter and they
were able to get moving!

Kudos to them!

:clap:

 

[Bernard]

That's a double dose of good news and *always* welcome here! :mrt: