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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

There is no family history of

Submitted by Anonymous on Wed, 2015-01-28 - 17:56
There is no family history of seizures and she has been pretty healthy all her life. Anybody at any age can have epilepsy.Wishful thinking isn't going to help her or you.If the neurologist saw seizure activity in the EEG then you are ahead of many peoples since many EEG's come back normal.As for the neurologist and the medication he is right and does know what he is talking about. Keppra is becomming the go to medication for seizure control. I have been using it and it not onlu reduced the number of seizures I was having it also shortened the time in the seizures and time to get back to normal. Weaning her off meds would not be the best thing in the world for her or you.. I hate taking meds but I would rather take them then have stronger and more frequent seizures. Or go into status epilepticus.. I stopped taking my medications because I had gone a period of time without any seizures and I hated taking them. I would up in status epilepticus. Having one convulsive seizure after another isn't fun on a mother who is trying to help her son. 40 convulsions an hour aint nice and back then there was no 911. So I wnet from 10 pm one night till about 6am before ever getting to the hospital. SO I do know what can happen if someone stops taking meds. I was fine for about 3 weeks.Oh and yu want to let her stop because she doesn't like taking meds  Ask yorself a question. Would you tell her to take medications if she had a heart ailment and the heart doctor prescribed meds to help control her heart beat??  All a seizure is is an electrical impulse going off wrong in the brain. Which causes a chain reaction. Srizure medications keep those impulses from going off wrong. I take medication for my Afib (heart ailment) That medications keeps my BPM at levels needed to keep it from beating too slow or too fast. As for her not wanting to take meds fine I do understand that. As for her not having epilepsy and taking them all her life. You do need to read more. There are people who do not have epilepsy any more. Some still take meds but there are others who do not. My cousin is one of the tatter. She had epilepsy when she was a teen and into her early 20's. She out grew her epilepsy.Kind of like the neurologist said another EEG in about a year and depending of what they find who knows. I am no doctor. I just follow my doctors orders. If she is to  take keppra 2 times a day be sure she takes them 12 hours apart. If she doesn't she could have a breakthru seizure.I take mine at 8 morning and evening. If I forget my evening meds and take them at 10pm then the three hour delay could be enough to cause a breakthru seizure if my levels are low.  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. All the information I post from comes from my dealing and living with epilepsy for 50+ years. Today it is a lot easier to control then it was back when I was diagnosed in the 1960's. Back then people with epilepsy were still being put in homes away from the public. In the 1970's there were still some states that wouldn't let people with epilepsy get a marriage license. There are still people that think that way. Try looking up famous people with epilepsy. You might be amazed at some of their names. I hope she gets teh assistance she needs and gets seizure freeJoe

your dead right the docs are

Submitted by Anonymous on Tue, 2015-02-03 - 13:42
your dead right the docs are always cluching at staws because they no so little .trust me if she gets good nights sleep every night she will never have another. gauge it , the sleep ,the more you deprive yourself of sleep the bigger the seizure . 

your dead right the docs are

Submitted by Anonymous on Tue, 2015-02-03 - 13:56
your dead right the docs are always cluching at staws because they no so little .trust me if she gets good nights sleep every night she will never have another. gauge it , the sleep ,the more you deprive yourself of sleep the bigger the seizure . 

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