Hello all,
I frequent many online forums. They are the best source of information on the net and I have been fortunate to have built trust and friendships through online forums.
I am joining coping with epilepsy because of my daughter. She is 2 years old and has recently been diagnosed with epilepsy.
The main reason for joining is because my wife and I are torn between providing medication (keppa was recommended) or letting this story play out a bit longer to see... Also looking for advice and guidance from others who are in the same position as my family.
A back story,
My daughters name is Tei. She had her first unprovoked seizure at the young age of 8 months. Lasted 3 and a half minutes. After a trip to sick kids hospital they referred us to a pediatric Neurologist for followup. EEG tests came up with increased electrical activity on the left side of her brain. MRI tests came back revealing multiple cavernomas in her brain which may or may not be related to her seizure episode. Genetics testing came up clean. This was back in November 2017.
Fast forward to February 2019. We were on an airplane back from a Mexico trip just Tei and I. About a hour from landing she experienced her second seizure episode lasting about the same duration as the first. She did catch some type of stomach bug while vacationing and was definitely dehydrated from the vomiting and puking the days before. At this time our neurologist suggested medications but we chose not to take them.
June 2019, my daughter has 3 seizure episodes in one day. All between 2-3 minutes. First one at daycare, second one after we brought her home, and one at the hospital. More EEG tests were performed but nothing stood out. Neurologists recommendation did not change regarding how to proceed. Just medication.
Some important but possibly unrelated things:
As a child I had one unprovoked seizure at the age of 1. No other episodes (32yrs). A recent MRI of my brain revealed a single cavernoma near my right temple. My mother also had cases of childhood epilepsy until she was 3 years old and then none since. She will be getting an MRI done as well as recommended by our neurologist. Just to see for information purposes.
I have been hearing from people that some kids outgrow the seizures. Also knowing that both my mom and I have had seizures at a young age and no longer have them makes me want to believe that Tei will also out grow them. We think we have an idea of her triggers and we have decided to do whatever it takes to accommodate, but since she can't put into words yet what she is feeling, AND because she is not the same person as my mother or me, we are torn.
Both my wife and I are against meds in any form. But we want to do what's best for our daughter.
Your thoughts, ideas, suggestions, directions are greatly appreciated. Thank you for taking the time to read my story.
Regards,
Shane
I frequent many online forums. They are the best source of information on the net and I have been fortunate to have built trust and friendships through online forums.
I am joining coping with epilepsy because of my daughter. She is 2 years old and has recently been diagnosed with epilepsy.
The main reason for joining is because my wife and I are torn between providing medication (keppa was recommended) or letting this story play out a bit longer to see... Also looking for advice and guidance from others who are in the same position as my family.
A back story,
My daughters name is Tei. She had her first unprovoked seizure at the young age of 8 months. Lasted 3 and a half minutes. After a trip to sick kids hospital they referred us to a pediatric Neurologist for followup. EEG tests came up with increased electrical activity on the left side of her brain. MRI tests came back revealing multiple cavernomas in her brain which may or may not be related to her seizure episode. Genetics testing came up clean. This was back in November 2017.
Fast forward to February 2019. We were on an airplane back from a Mexico trip just Tei and I. About a hour from landing she experienced her second seizure episode lasting about the same duration as the first. She did catch some type of stomach bug while vacationing and was definitely dehydrated from the vomiting and puking the days before. At this time our neurologist suggested medications but we chose not to take them.
June 2019, my daughter has 3 seizure episodes in one day. All between 2-3 minutes. First one at daycare, second one after we brought her home, and one at the hospital. More EEG tests were performed but nothing stood out. Neurologists recommendation did not change regarding how to proceed. Just medication.
Some important but possibly unrelated things:
As a child I had one unprovoked seizure at the age of 1. No other episodes (32yrs). A recent MRI of my brain revealed a single cavernoma near my right temple. My mother also had cases of childhood epilepsy until she was 3 years old and then none since. She will be getting an MRI done as well as recommended by our neurologist. Just to see for information purposes.
I have been hearing from people that some kids outgrow the seizures. Also knowing that both my mom and I have had seizures at a young age and no longer have them makes me want to believe that Tei will also out grow them. We think we have an idea of her triggers and we have decided to do whatever it takes to accommodate, but since she can't put into words yet what she is feeling, AND because she is not the same person as my mother or me, we are torn.
Both my wife and I are against meds in any form. But we want to do what's best for our daughter.
Your thoughts, ideas, suggestions, directions are greatly appreciated. Thank you for taking the time to read my story.
Regards,
Shane