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View Full Version : Epilepsy and School **UPDATE**


tinker girl
03-20-2007, 06:36 PM
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
03-20-2007, 07:02 PM
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
03-20-2007, 07:36 PM
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
03-22-2007, 08:39 AM
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
03-22-2007, 04:03 PM
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!:grouphug:

Paula

tinker girl
03-22-2007, 05:04 PM
http://i51.photobucket.com/albums/f381/angelstar22/Thank%20you/thanks4.gif

SueM in MN
03-23-2007, 09:09 AM
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!:grouphug:

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
03-23-2007, 01:04 PM
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
03-24-2007, 12:16 PM
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
03-26-2007, 07:50 AM
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
03-26-2007, 07:51 AM
OH my its monday......:scared1:

forr2grls
03-26-2007, 05:26 PM
How did it go??


Paula

MandM-Mom
03-27-2007, 05:33 AM
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
03-27-2007, 08:16 AM
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
03-27-2007, 01:19 PM
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!:goodvibes
I'll be back with an update soon! thank you all.:thumbsup2

forr2grls
03-28-2007, 06:55 PM
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
03-29-2007, 09:51 AM
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
03-29-2007, 03:58 PM
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
03-30-2007, 09:28 AM
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?:confused3

forr2grls
03-30-2007, 02:34 PM
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

tinker girl
04-02-2007, 03:54 PM
Yes, and the bad ones he screams the whole time.

forr2grls
04-03-2007, 07:06 PM
Do you keep a seizure diary? Do the seizures happen at a certain time of day,or after/during an activity?...I've gotten a few responses.And I've also been doing some research.How long has he had these seizures?Sounds a bit like infantile spasms,yes i know,he's a bit old to have them....Has he had a VEEG?Sorry for all the questions,just trying to help you get some answers.

Paula

tinker girl
04-04-2007, 09:36 AM
Do you keep a seizure diary? Do the seizures happen at a certain time of day,or after/during an activity?...I've gotten a few responses.And I've also been doing some research.How long has he had these seizures?Sounds a bit like infantile spasms,yes i know,he's a bit old to have them....Has he had a VEEG?Sorry for all the questions,just trying to help you get some answers.

Paula


We did the diary for a bit also the diet and on and on. They are all over the place, am pm. He has had them for about three years now. He has had lots of eeg's they never find ne thing. We take him to CHOP in philly. He has stayed for weeks at a time and still nada??? NE help you can give is welcome.

4fosterkids
04-04-2007, 12:31 PM
Hi
My son is now 14 and has had epilepsy since age 3. I have found the most useful thing to be communication between you and the teacher(s) and nurse. The more prepared they are the better things will be if or when something does happen.
One thing I have learned over the years is to be sure everybody who your child may be with, is trained in seizure first aid and/or meds administration. This means the lunch lady's, the librarian, sub teachers, bus drivers etc. It may not be the case so much in Kindergarten, but as they get older and out of the Kinder gates...things change. In my opinion...every teacher would benefit from an inservice about epilepsy because there are families out there that do not want to disclose their childs condition, so people are not ready.

We also do not want 911 called unless it is a prolonged seizure or we can't be reached. Everybody is Diastat trained and VNS trained for him too.

I think it is funny we all have the same cel phone fears! Either of not getting the call or forgetting our phone somewhere. Makes you wonder how we would do it before cel phones were around!!

good luck to you!

forr2grls
04-09-2007, 10:34 AM
Well Tink,got a couple more guesses...tonic seizures, complex partial.Here is a web addy http://www.epilepsy.com/epilepsy/types_seizures.html

Paula

tinker girl
04-09-2007, 03:38 PM
Thanks for the info. I can't tell you all how much it has helped me.:grouphug:

tinker girl
04-16-2007, 09:05 AM
Well I have been up all night with ds. He took a bump to the nose and it went off from that point. Every 10 min,he is wiped out. Now what to do? He has had a double shot of meds and still nada. Any ideas??

forr2grls
04-16-2007, 06:26 PM
Oh gosh Tink.So sorry.Have you called the Dr?I can't think of anything that might help,well maybe some tylenol or motrin..may be painful and pain can be a trigger.Please keep me updated.Hugs and prayers sent your way.


Paula

onesadduck
04-17-2007, 01:18 AM
I'm sorry Tink, I have no advice for you sadly. I just wanted to say it sounds like your DS is in good hands at school. My late little sister had epilepsy among many other medical problems. She had many aides and teachers throughtout school. One time in third grade, her one-on-one aide, who had been with her for months, commented to my mom when she picked my sister up from school that my sister fell at school, and how "it was strange because she wet herself at the same time." My sister had actually broken her arm during that seizure (but due to other dissabilities, couldn't feel it luckily) and the aide never knew! Eventually they realized that whenever she "fell" her oxygen needed to be turned up, and she needed to be in a wheelchair for the rest of the day (they also had that no 911 for seizures under five minutes thing in her IEP- they never needed to call 911).

I hope they figure out what's going on with your DS, and find an effective treatment soon. Good luck,
Alisa

forr2grls
04-18-2007, 04:37 PM
Got another response from the other place i posted-here it is:

Back arching is called Opisthotonus or Opisthotonos. I suffered this in 1997, a couple of years after I had head and spinal injury. I didn't know anything about medical terminology, I thought it was from hard work and getting older, so it took the quick onset of horrific symptoms - cramps, spasms, twitching, tics (these all hurt like crazy) in 2001, before I "accidently" found a name for this condition.
I suffered lock jaw a few times as well as facial grimaces and my legs would move involuntary in a paddling motion. My head rises up and to the right - I had many symptoms, which I later found to be neurological symptoms. One doc thought I might have had Epilepsy - my test was clear.
Doctors apparently think Opistotonus is a rare condition - but research has found it is displayed in many illnesses and conditions. I was by myself when it happened to me, I didn't know what was happening - I read where it can happen to babies soon after birth - I believe it could happen to babies, children and even adults, and no-one would know.
If you put Opisthotonus Opisthotonos (both spellings) in the Search engine, it will bring up sites with symptoms and other info. It may be scary but knowledge is power.
Does the boy's doc know of him having this back arching?



Paula

minkydog
04-29-2007, 09:23 PM
Well,i'm glad your little buddy got to tour the school. It did my heart good to hear that you have already made contact with the school nurse(I'm a school nurse myself). You'd be surprised what those nurses deal with--everything from minor scrapes & loose teeth to seizures and anaphylactic reactions.:cool2:

Having a plan in place will be your ticket to freedom. My DS12 has had seizures for the last 4-6 yrs. He mostly has them at night , but he has had a few in the pool and in the tub. He has never had one in school but I still worry about him. Just recently he went on a 12hr field trip to the N. Georgia mountains with his class--and I did not chaperone.:scared: A real step of faith for me. And he had a great time!

tinker girl
05-16-2007, 09:21 AM
Hello to all! I want to start by telling all of you thanks! DS is doing well. The doc had to up his meds and a two days later he was back to being the little terror I know and love. We had his blood work re-done and all came back normal thank goodness! sorry I didn't get back to you all sooner I was with my mom for a bit I am now getting things back in order. talk soon.
--Tink!

forr2grls
05-16-2007, 07:38 PM
Thanks for the update!Been worried.Hugs!

Paula

MandM-Mom
05-16-2007, 07:45 PM
Glad everything is well!