Epilepsy and School **UPDATE**

[tinker girl]

Hello All!

I need your help......My 5 year old son is going to be starting school this September. This is the first of my kids to go and on top of it he has Epilepsy.
I have such a hard time with him going to my parents and inlaws houses but I can't keep under lock and key. Has any one been like this or am I just being overprotective?..............

 

[forr2grls]

Hi! Been there,done that,still doing it! My 8 yr old dd has Epilepsy.She is in 2nd grade. The whole getting prepared for K was extremely difficult emotionally for me. I know how you feel.I can promise you it does get better,but you're always waiting to get "that" call. He will need a 504 plan,which is a health plan the school will follow in the event of a seizure. Have his pedi or neuro type something up that includes:

1.The protocol for seizures-roll him on his side,how to time a seizure,etc.
2.When to give Diastat-must be very clear explanation
3.The types of seizures he has..warning signs like an aura-dd's speaking may slow,eyes fixed,complains of eyes being dizzy,pails
4.when to call 911,you.


I could go on and on. If you want to chat,need more info,please let me know.I will gladly help..


Paula

 

[BeccaGrace]

I agree with everything Paula said; I also got many items from the Epilepsy Foundation's online store (posters, pamphlets, etc.) for the teachers, aides and school nurse. The school also let me do a presentation to the teachers, aides and anyone else interested on seizure first aid and Becca's specific situation.

In addition to the first aid stuff, I found that speaking to Becca's Pre-K class about epilepsy and seizures helped to make me feel a little better in terms of preparing the kids in case she had a seizure and explaining on more of a social level that they shouldn't be afraid, that seizures aren't catching and that it shouldn't keep them from being friends with that person. I read 'Taking Seizure Disorders To School' to the class and answered the kid's questions, which were really insightful, and I think it worked to ease any anxiety they might have had about Becca having a seizure in class. I also made the kids goody bags with epilepsy awareness rubber bracelets, bubbles and a treat and included a note for the parents to advise them about what the kids learned and include a link to the EFA website.

Hope this helps--I don't think it gets any easier dropping them off each day. I always panic if my cell isn't in my pocket and there is a chance they can't contact me. It's so hard to give up that little bit of control of at least knowing you are going to be there but you are right that you can't be overprotective and shelter him from life--it's not fair to keep them from experiencing things because we're worried that only we can keep them safe. And it's the same for regularly developing kids too, I think just a little harder when you throw E into the mix Good luck with everything!

 

[tinker girl]

Thanks for the ideas! I never imagined I would be in this kind of situation. (but I guess no parent dose) I have that fear of "THE CALL" . The worst part is I am scared I'm going to freak him out about school and I dont want to do so. I have stoped talking about it when he is around,but I think I should try to make a "just in case" plan with him. What do you think????

 

[forr2grls]

I think that would be a great idea! You could tell him something like:When you start school the people there will know what to do when you have a seizure. They will call me and either I will come get you or you can talk to me on the phone. (depending on what you and the school come up with for a plan)With our dd,depends on if diastat is given or not.If it is given I go and pick her up,if not,they will let her rest in the nurses office and will call when done with post-ictal period.I get a chance to talk with her and I can tell by her voice if she needs to come home or not.

If you have any more questions,ask! we are here for you!

Paula

 

[tinker girl]

 

[SueM in MN]

I think that would be a great idea! You could tell him something like:When you start school the people there will know what to do when you have a seizure. They will call me and either I will come get you or you can talk to me on the phone. (depending on what you and the school come up with for a plan)With our dd,depends on if diastat is given or not.If it is given I go and pick her up,if not,they will let her rest in the nurses office and will call when done with post-ictal period.I get a chance to talk with her and I can tell by her voice if she needs to come home or not.

If you have any more questions,ask! we are here for you!

Paula

Once you have the plan in place, I think this is a good idea.
He will be reasured that people will know what to expect if he has a seizure and will know what to do. That will help him to be more calm about the whole thing.

I also think the idea of talking to the class.
Another place that has some good books for describing different disabilities and conditions is www.eparent.com (Exception Parent).

 

[tinker girl]

I talked to the school today. We are going to take a tour of the school on Monday and he/we will be meeting with the Nurse. I thank all of you for your input and more is welcome!

 

[forr2grls]

Another issue you should bring up is transportation. Do they have a special needs bus? Will there be an aide?...Just thinking of some of the frustrations we had in the beginning.


Paula

PS
hope all goes well Monday!

 

[tinker girl]

Wow I didn't think of that. My family drives speical needs children to school. For central bucks. I can talk to the school and see fi we can set up a plan! Thanks for the idea!

 

[tinker girl]

OH my its monday......

 

[forr2grls]

How did it go??


Paula

 

[MandM-Mom]

I hope your tour of the school goes well. All the ideas are such good ideas. I have an 8month old with epilepsy and I don't even want to leave her with dh and go anywhere so I know exactly how you feel......I guess I have some time to prepare myself for the school seperation....

Giving and knowing the school, teachers, and other students have the knowledge to deal with the seizures would make me more comfortable too, great ideas!

 

[don8life]

Once you have a plan in lace you will feel a little better. My epileptic child is my last so I know the school nurse well before she started K this year.
One thing I have in my plan is to NOT call 911 if the seizure is less then 5 minutes. The school is fine with that. It also helps that Erin's K teacher's mother had epilepsy and she had to take care of her when she was little. So she won't freak out is a seizure occurs.

Erin has been in school for 2 yrs and every time my cell phone rings when I'm out and she is at school, my heart skips a beat.

Good Luck!

 

[tinker girl]

Well Liam did great! He let the door close in me face! We had a one on one with the RN that is in the school and she told me there are a few kids with the same thing as Liam. So I still have my worries but it's getting alittle better! Can I let all the worry go? I don't think so. lol!
I'll be back with an update soon! thank you all.

 

[forr2grls]

LOL!!!...Glad it went well. I'm sure it eased your mind to know the nurse has dealt with seizures before. You will always worry,but like I said before,it does get better!
By the way,what type(s) of seizures does your ds have?And what meds,if any?


Paula

 

[tinker girl]

LOL!!!...Glad it went well. I'm sure it eased your mind to know the nurse has dealt with seizures before. You will always worry,but like I said before,it does get better!
By the way,what type(s) of seizures does your ds have?And what meds,if any?


Paula

Well thats the hard part he has had this since the age of 2 and the docs still can't "label" them. It is epilepsy thats what the docs can tell me. What kind is what has them puzzled. He takes meds 2 times a day. Carbamazepine chewables 2 in the am and 3 in the pm. His liver functions just came back elevated have you ever had to deal with that?

 

[forr2grls]

Well thats the hard part he has had this since the age of 2 and the docs still can't "label" them. It is epilepsy thats what the docs can tell me. What kind is what has them puzzled. He takes meds 2 times a day. Carbamazepine chewables 2 in the am and 3 in the pm. His liver functions just came back elevated have you ever had to deal with that?

Luckily we have not had to deal with elevated levels of Carbamazepine yet.Dd has been on it for 7.5 yrs. She did have BIG trouble with Dilantin-was toxic.Not taking it anymore!! Would you mind describing what your ds' seizures look like?

Paula

 

[tinker girl]

OK!

He can tell me when there going to start.
It starts with verry fast eye blinking
next his teeth lock....back arches....legs kick....pain in his head and it ends with his body just wiped out. He has them in clusters. The average is 10 to 30 in an hour. They don't last long but there back to back. Never has he bit his tongue or vomited. He has wet his pants. Any ideas?

 

[forr2grls]

Hmm,I'm not quite sure. I have posted your description on a neuro site I frequent in an Epilepsy forum.I will let you know what I find out!!...Is he aware during these episodes?


Paula