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17-year old daughter had a seizure out of no-where

Tue, 01/27/2015 - 13:12

Last July my 17 year-old daughter had a seizure while on a college road-trip with her dad.  Since it was 6 hours away from home, they combined the campus tours with business meetings.  There is no family history of seizures and she has been pretty healthy all her life.  I believe the following contributed to this seizure:

  • 2 days of insufficient sleep (her primary says she needs 10 hours at her age)
  • Had been on the road for 2 days
  • Complained that the sun hurt her eyes
  • Had a headache for 2 days
  • Went to a theme park that was very crowded and hot, and went on a 3-D ride
  • Waited in a hot car for 2 hours for her dad (he thought she was waiting in the library)
  • Under stress to get to the campus tours on time, which they missed, and all the while she was trying to navigate while he drove
  • Just got her period, and she is on birth control (reclipsen)
  • Hadn't eaten anything since that morning, which consisted of hotel pancakes and artificial syrup
  • She said she was drinking water, but probably not enough

They finally sat down in a restaurant to eat around 6:00pm.  She was looking at the menu and thought that it didn't make sense, and was confused by it.  Her dad was also looking at the menu.  When he put the menu down he couldn't see her.  At first he thought she was bending down to pick up a napkin, then realized she was laying down on the floor, arms straight out and crossed and convulsing.  Of course he freaked out and he's not sure how long it lasted.  Fortunately there were 2 firefighters and a nurse who knew exactly what to do.  She came to and was ok, then an ambulance arrived to take her to ER where one of the doctors there tried to reassure dad with "everyone is entitled to 1" and that this is very common.

She received a CAT, MRI which were both clear.  Her neurologist found a spike during a sleep-deprived EEG, describing it as her brain "trying to have a seizure, but the Keppra held it back" and that "she is prone to seizures"  WHAT??? Ok, we all know that any or all of the things she experienced prior to this can trigger seizures.  And since she experienced ALL of these things, I am inclined to think and hope that this was her first and last.  Of course I can't argue with a neurologist who says he's been reading these graphs for 17 years and knows what he's talking about.  My daughter's on 500mg Keppra, 2 times a day.  She doesn't show any side-effects but she doesn't like taking it and says "mom, I feel like taking this medication all the time is not good for me and what if we find out later that it causes cancer or something?"  I tell her that the neurologist said to stay on it for a year and then she'll have another EEG test.  I'm now considering weaning her off the Keppra because she'll be going off to college in the Fall and I want her to be near me so I can monitor this for the next 6 months.  It's against what the neurologist recommends.  Sometimes I feel like doctors have been at it so long that they develop tunnel vision and are not able to think outside the box.  Their practice becomes routine, and they administer meds because they don't know what else to do.  And they admit they don't know what the cause is. I believe that everyone is wired differently, and that different circumstances can cause different seizures at different times, or not at all.  I have read that a high percentage of EEG's are mis-diagnosed.  So I am seeking another opinion because I don't want my daughter on meds her whole life if it's not absolutely necessary.

Since her road-trip, I nag her to get enough sleep, not skip meals and eat healthy, carry a water bottle, get exercise, and get her eyes off her iphone or laptop at least one hour before bed-time (per her primary doctor's recommendation).  I notice she is most energetic and happy when she's gone to bed at 8:30-9:00.  I nag her in hopes that this will stick and she will develop these life-long habits.  

That's our story.  I've enjoyed reading other stories as well.  The more details we can share about what was happening prior to a seizure is important.  Maybe this information can help someone else.  I wish you all the best in living your lives to the fullest.

Carol

 

 

Comments

I am so sorry to hear about

Submitted by thesilkclan on Fri, 2019-06-28 - 11:54
I am so sorry to hear about your son. I have to admit to being a part of this I can't believe it club. My daughter died in July and my son started having seizures in January. I thought, this is just too much. It can't be real. But it isn't too much,. I guess it's just life. I can't lose my son. I will keep him on his meds

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