"Outgrowing" Epilepsy

Turtle88

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Hello,
I want to share my 11 yr olds good news and thank all the people who have shared their journey, as I have spent the past 2 yrs reading this site for ideas, hope, support.
When Sarah was 5 she had her first and continuous seizure(s) putting her in staus epilepticus for approx 6-8 hrs. She was diagnosed with Epilepsy but never a specific type (generalized; complex partial is most they would commit to labeling). After years of medications and abnormal EEG's - but no break through seizures - she finally tested with 2 normal EEG's; one with medication in system and another with no medication in her system! She is considered to be part of the 70% of kids with certain types of Epilepsy to have outgrown it! We thank God for this blessing!
We had many rough spots; "pretending to take med", ideas for staying up all night and sleep deprived EEG, decision to keep on meds even though 2, than 3, than 4 yrs with no seizure activity, her anxiety attacks over thinking she's having, etc. All the while i was able to read about your journeys and find support.
One topic I couldnt find much on was kids who have outgrown Epilepsy. Probably because parents dont use the site once they've been blessed to move on. So i decided i would post an update, every 2 yrs, for those looking into the possibilty. Beacuse who knows, once you have the disposition, hormones, extreme stress, can put you back to square one. But this is about HOPE; and a thank you.
 

Cint

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Beacuse who knows, once you have the disposition, hormones, extreme stress, can put you back to square one. But this is about HOPE; and a thank you.
I do HOPE she has outgrown E. But like you said, hormones and stress can put you back to square one and once her hormones set in, who knows..............

Good luck!
 

Turtle88

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Just an Update: 6/16/14 and smooth sailing. Sarah has had no reocurrance of seizure and EEG shows no problems after almost 1 yr with out medications. Hoping she sails through hormone changes of puburity with as much good fortune.
 

masterjen

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Congratulations, and keeping my fingers crossed that Sarah continues to be seizure-free!
 

marths

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Great to hear this news I hope she remains seizure free for life.
 

Turtle88

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2.5.15
In appreciation for all of us learning and living with epilepsy, I continue to update because we are all looking to better understand epilepsy.

It's been 2 1/2 yrs Sarah has been seizure free and with normal brainwave activity. She is 10 yrs old (5'4 and womens size 9 shoes! geezzz, how do i grow them so big :) She has had fevers and little sleep, but not through puberty or massive stress. Could go either way, we have same worries we did prior, but no medications and no seizures.

Praying all our families find a healthy acceptance to the things we can not control. Godspeed! mj
 

Nakamova

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Wonderful! 2 1/2 years is a great milestone. I wish you and your family continued good health. :)
 

CathyAnn31

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Turtle88, that's awesome! I hope she stays seizure-free for the rest of her life! :)

My mom was told that I grew out of my childhood epilepsy and if it didn't return during puberty that I was cured. And it didn't. However, I began having seizures again at 39. Sorry to be a downer, just wanted to share what happened to me.
 
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Really great to hear!! That's such a good long streak, and I really hope it continues forever!
 

Turtle88

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Hi Cathy Ann31,
I so appreciate the shared info. It's better to have the understanding that the possibility always remains. I think it can help all stay strong. God is walking beside us and we all do our best to manage. Could be better, could be worse kind of a thing. Take care of yourself. There is still much to do and experience while we're here. :)
 
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