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.
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.