Im new here and to epilepsy.

[SBollenbach]

I have a five year old who had her first seizure on 6/24/10. she was 6 hours away at my moms house. Im not to sure how to start this but i would like some advice how do i explain to my daughter what happened to her and what will most likley happen again?

 

[epileric]

Welcome SB

Sorry to hear about your daughter. I was born with epilepsy & it really wasn't a big deal to me as a kid. First of all what kind of seizures does she have? are they convulsive?

I used to "laugh" during a seizure so my parents used to refer to them as "laughing spells". That alone made me think they weren't that bad. I thought that everyone had them (or something similar) & eventually I learned otherwise.

I don't really know what to say but I know that my parents never made a big deal of it so I never felt there was anything wrong with me, even if I was different (maybe I should say "unique"). I do think you are lucky that she does have a grand-ma that has the same thing. I believe that knowing that will definitely keep her from feeling alone like I know a lot of people with epilepsy do.

Meanwhile make yourself at home on this site. You might find the "nursery" here very interesting as it's mostly parents of children with epilepsy & I'm sure others have gone through what you're going through now.

 

[Endless]

Welcome, SBollenbach,

It must have been so scary having your baby that far away, and her have a seizure. If she couldn't be with you, I'm glad she was with your mom.

I think children's books are a great resource. And you can share the experience of reading it together. Here are some children's books on epilepsy that are recommended by www.epilepsy.com:

Children's books on epilepsy

I thought this one might be good, if it is about your daughter's type of epilepsy:
[ame="http://www.amazon.com/Mommy-Funny-Childs-Experience-Epilepsy/dp/1932279539/ref=pd_sim_b_2"]Mommy, I Feel Funny! A Child's Experience with Epilepsy: Danielle M. Rocheford, Chris Herrick: 9781932279535: Amazon.com: Books@@AMEPARAM@@http://ecx.images-amazon.com/images/I/61A9ak5uvtL.@@AMEPARAM@@61A9ak5uvtL[/ame]

Do you have an appointment for your daughter to see a neurologist? Please let us know how she is doing.

 

[SBollenbach]

thankyou for your replys i will be sure to take a look at those with her....
i was for lack of a better word frantic.. she was in a little town miles from a "good" hospital though i must say the short time she was at this little hospital the gave her awesome care. she was life flighted to a childrens hospital a hour from my house but only after i made the 6 hour drive to where she was and missed her plane by 10 min. then made a 8 hour trip to the childrens hospital. she had every test eeg's mri's blood work after blood work. she had her seizure on a thursday we left the hospital on the next monday. she had her seizure for almost a hour straight.. all the meds they gave her to stop made her stop breathing on her own. she is fine now but her follow up eeg showed abnormalitys. they dont want to medicate her untill she has another one.. i do have a med to stop it shal it last long enough.. they still have no name or reason as to why she had it. i have never actually seen a seizure and my reasearch online has only made my fears worse. my moms epilepsy is very controlled her last grand mal was at 13 so ive seen little still stares shes had but never to the extent my daughter had.

 

[huskymom]

Hi and Welcome!! :hello:

What better person to have there, other than you, than your mom who knew what was going on. I hope only the best for you and your daughter!