15 year old daughter, Tonic Clonic

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Hello, all.

While driving home from out of state Sunday, my 15.5 year old daughter had a Grand Mal/Tonic Clonic. It was horrifying, we were going 70mph on a major interstate, with NO clue what city we were in. Difficult to tell 911 where you are, when you aren't familiar with the area. I wound up banging on a strangers door for an address.

Anyway, the sunlight was flashing through the trees pretty bad, I'd commented 10 minutes previously how annoying it was to my husband. My daughter, in the back seat, was attempting to go to sleep--and had headphones in. Suddenly, I heard her scream twice, "Stop it!", and bang on the window. I turned around, assuming she was having a nightmare--but realized quickly she wasn't. Took me a second or two to recognize it as a seizure, which I immediately grabbed my phone to call 911 (first seizure ever, and I was terrified). When I turned back around, she was bleeding from her mouth (bit her tongue) and convulsing all over...neck twisted funny and arms/legs/shoulders/hands contorted looking.

Long story short, paramedics showed up and transported her to hospital. The seizure lasted around 3-4 minutes, she was unconscious and unresponsive another 5-10 minutes, then major major headache and fatigue for 24 hours after. ER docs ran a CAT scan, bloodwork, and urine--all normal. Sent us on our way, with instructions to see a neurologist at home.

We have a Nuerologist appt this Friday afternoon.

My questions, if you don't mind:

Can someone have a Grand Mal/Tonic Clonic and NOT have epilepsy? Is it possible it was a fluke and won't ever happen again?

My daughter is convinced she's fine, and won't ever have another seizure. I'm the opposite, and terrified.

Her driving permit hasn't been suspended yet, but I'm NOT allowing her to drive until her Neurologist says it's safe. For all I know, he will notify the state and suspend her license for a time period, which is FINE with me.

Thanks in advance!
 
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Also, what should we expect at the first Neurologist appt?

When the EEG is scheduled, is it normally outpatient? Or do they prefer to do it over a period of time inpatient?
 

Cardones

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Hi

Sorry to hear about your and your daughter's experience.

It is very possible to have a single seizure and not have epilepsy. In fact the majority of people who do have a single event never have another one. I have been told that the risk of a recurrence after a first is around 30-40%, with 80% or recurrences happening w/in 2 years (and most of them happen in the first 6 months). Risk factors for recurrences are an abnormal EEG, neurological abnormalities, history of head injury or birth problems, family history of epilepsy etc. Without these risk factors recurrence rates are around 20%. The risk dminishes as time goes on.

I had a single seizure when I was about your daughter's age and it was caused by photosenstivity. I have no guarantee I will never have another (one of the annoying things about seizures) but have been assured by many doctors my chance of having another are very low. It has been 18 years since the first one and I have been fine so far - so yes it is very possible to have one and never have another. I know two other people who have had the same - one 25 years ago and one 2 years ago so it does happen. Single unprovoked seizures are surprisingly common.

She will have her driving licence suspended for a short while but it's a small inconvenience during the shortish risk period to avoid the obvious dangers of what would happen if a recurrence happened while she was driving.

If she does have a recurrence, she is most likely to go on meds and be fine. Please try not to worry too much until you have seen the neuro and she has been tested - if the tests are normal the odds are in her favour that she will be fine and never have another one. Do keep us updated on what the doctor says though.
 

Cardones

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Re the EEG I can't really remember as it was a while ago now. It was an outpatient I think.

The neuro will likely ask lots of questions about her history and then her recollection of before the actual seizure. If there is nothing in her history or test results that raises a flag, most doctors don't treat with meds and take a wait and see approach - if a second occurs then epilepsy is usually diagnosed and you go on meds. Epilepsy by definition means recurrent unprovoked seizures so a single siezure is not epilepsy.
 

Nakamova

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Hi i8thegreenbean, welcome to CWE!

I know this must be a terribly scary time for you. I hope you and your daughter get some answers soon. There is a very real possibility that your daughter's seizure is a one-off. About 2% of adults have a seizure at some time during their life. Two thirds of these people never have another one. Each individual has a seizure "threshold", and for most people that threshold is never crossed. Photosensitivity is one of the more common triggers for single episode, so let's hope that's a sign that your daughter's experience will also be a one-time thing.

An epilepsy diagnosis usually isn't made until there have been two or more seizures. In my case, the diagnosis was made after just one seizure, because my EEG revealed abnormal brainwaves very strongly characteristic of epilepsy. Most likely your daughter's neurologist will schedule an EEG (outpatient) to help rule such a diagnosis in or out. If it seems warranted, he may also schedule an MRI to rule out any structural or vascular issues (my MRI was clean). The neuro will ask if there is any family history of seizure disorder, and will also ask if your daughter has had any head trauma, and/or unusual symptoms in the past. These could be minor or rare -- things like migraines, twitches, visual auras, etc. -- so don't be afraid to mention things even if you're not sure they are relevant. The neurologist may want to know if you and she can identify possible triggers for the seizure. A photosensitive reaction seems likely, but other contributing factors can be things like fatigue (the #1 seizure trigger), low blood sugar, hormonal fluctuations, etc.

As far as her license is concerned, the laws vary from state to state. Some require the physician to notify the DMV, in others it's the "honor system" and it's up to the patient. Most states require someone to be seizure-free for 6 months to a year before a license can be reinstated, and some require a physician's letter. Your state's DMV website should provide details. You're definitely right to keep her from driving until you know more.

I hope she is recovering from the seizure (I know it can be painful) and that things get better and clearer from here on out. Please feel free to ask more questions as they arise. It's a good idea to write down what the neurologist tells you, and make sure you know how to get in touch with him/her if something is unclear.

Best,
Nakamova
 

jemsister

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Welcome to CWE, and I really hope your daughter's appointment goes well! I don't really have anything to add--the two previous posters pretty much covered everything. I agree that you should try to think of anything that might be relevant and write it down to tell the doctor.
 

jemsister

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Oh, all my EEGs have been outpatient. The shortest was 30 minutes, and the longest was 3 hours. I had my first seizure when I was 17, and I was diagnosed within a couple of months after 3 EEGs. They also ordered an MRI, which for me came back showing some structural abnormalities in the temporal lobe.
 

LisaBee

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Hello! Welcome! My daughter is 11 and had her first Tonic Clonic while asleep in June. I also called 911, although I suspected something was going on because she was having strange episodes in her sleep that was passed off by Dr's as nightmares. Her EEG was outpatient and came back normal. She had another T/C a week later in her sleep again. We then had CT and MRI scans- both normal. I switched Neurologists and she ordered a Sleep-deprived EEG which showed abnormal spikes. She has never had a seizure while awake (thank goodness) and we are finally on a med that seems to be helping alot. I too was terrified. Couldnt sleep or eat...try to stay calm as kids can sense our emotions and Im sure she is worried even though shes acting like she isnt. Good luck with your appointments, I hope you get some answers.
 
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Update:

EEG was 'slightly' abnormal during the sleeping portion of the test, MRI was 'clear'. She's been having some very annoying twitches, sort of like when your eyelid will twitch involuntarily? Yet all over her body. Left arm muscle, left cheek, left eye, etc. To the point that she's had to pause on applying makeup, or writing in school until the twitches stop. Her Neurologist ordered another full blood panel, including a metabolic panel--and this was clear as well.

So, we are in a holding pattern. Wait and see approach, I guess, hoping she won't ever have another seizure.

Should we get a second opinion? Considering the involuntary twitching and the slight abnormalities on her EEG? Or is it common to take a wait and see approach?

ETA: She showed no abnormalities during the strobe light portion of the test, which shocked me. I was convinced the flashing sunlight through the trees had provoked her Clonic/Tonic.
 
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Cardones

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Hey

Seek a 2nd opinion if you would like to and it would make you feel better. My view is that a 2nd opinion isn't likely to shed much more light. Sadly epilepsy is still very much a clinical diagnosis so much will depend on whether she has another in the absence of anything classic showing up on the eeg. Only your doc can explain the implications of her eeg.

It is very common practice to play a wait and see approach after a single seizure. As most people don't have a recurrence the thinking is that to treat straight away you are treating more people unnecessarily than people who actually need it and as delaying treatment makes little difference in the long run to those who do eventually neeed it, there is more sense in waiting to see if it is required.

When I had my first I was told to do nothing and wait and see. Several people I know who have had single episodes were told the same.

So my uneducated guess would be another doc would probably take the same approach unless your daughter was adamant she wanted to go on meds.

You can still be photosensitive and not show it in the photic test on the eeg. Some people will just have a lower sensitivity than others and some can have only a very specific trigger and be fine with strobe lights. Photosensitivity is a very personal thing in my view. I believe that many more people can be photosensitive than we realise but most never come across their very specific trigger in real life and so go their entire lives never knowing. It is only the people who have high photosensitivity who generally find out making us think it is a rarer phenomenon than it is.

Anyway, get a 2nd opinion to double check her eeg and history to ease your mind. No one on this forum is a neurologist so we can't give advice on her eeg or twitching and trying to probably makes things worse as invariably you will get someone who has those symptoms who says it sounds like epilepsy and then you panic! Talk to the doctors and trust them. Hope everything works out, your daughter will be fine.
 
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Hello! I know no one here is a neurologist, and even if they were--I would be appalled if they offered any sort of diagnosis.

I was simply trying to find reassurance that a wait and see approach IS common. Thank you very much, it seems it is, and I feel much better. It's just tough not knowing, and although her neurologist didnt seem concerned about her twitching or random leg jerks, it scares me.

Thanks for your reply, I truly appreciate it!
 

Cardones

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Sorry, wasn't suggesting you were looking for a diagnosis. Just didn't want you to get overly worried from things you find on the internet (not necessarily here where everyone is very supportive and helpful) that contradicts what doctors tell you. I myself suffered from a lot of web research based anxiety so am speaking from my experience rather than assuming that's what you were doing!

So, if your neruo isn't worried about the jerks, I wouldn't be either. In the asbsence of other symptoms they may well just be nothing. My girlfriend gets them too but she doesn't have epilepsy. Def get a 2nd opinion if it will make you and your daughter feel better or you don't feel like you had all your questions answered.

However I do have to say from my experience going through the same thing at your daughter's age, it was the worry of my parents that affected me more than the actual seizure. If your neruo is happy to wait and see now, prob best to just do that rather than worry your daughter more by seeing another neurologist. It's a balancing act though so do what you feel is right and if a confirming 2nd opinion will make everyone feel more comfortable then that's great for everyone.

Waiting and seeing generally is the standard procedure. For me, I haven't had another seizure for 18 years so if I had decided to take meds that is almost 2 decades of powerful drugs that wouldn't have been necessary, even if I had another now. People who have a second seizure have a much higher (something like 80%) chance of further recurrences which justifies starting meds.
 

pattid12

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Hi, I'm going through the same thing with my son 15. What med did your dr give her? He only had one in his sleep last Wed. Going through test this week. Yesterday had the EMG, tommorow he will be set up for the 24 hour one. Next week is MRI of brain. Good luck and God Bless
 
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She isn't on any medication yet. We are taking a wait and see approach, and so far so good. She still has involuntary twitches, or her leg will randomly kick out, but she's only had the one tonic/Clonic so far.
 

pattid12

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Hi my son had a seizure in his sleep also (15 years old) I am curious what med was your child put on?
 

LisaBee

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i8thegreenbean....have you researched JME? That form of Epilepsy can cause involuntary twitches and jerks called Myoclonus. Good luck with her tests. I know its frustrating to not have any answers.

pattid12...my daughter was put on Keppra first and it did nothing, so we switched to Trileptal. Works well for us.
 
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Hello,

If you haven't seen it, CWE is a wonderful resource with knowledgeable members who are very compassionate.
My daughter, (16) had her first T/C seizure on May 1. I hope you are on a one and done. My experience is that Keppra is an easy drug to prescribe. Based on my experience, I don't' think it is right for an adolescent. We are currently weaning my daughter off. If you are not comfortable, use your maternal and get a second opinion.

I hope you find what you are looking for on this wonderful site.

Tom
 

LisaBee

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Tom, I totally agree with you about Keppra. We weaned off that just before Christmas. I am very happy, it was an evil drug for us. How is your daughter doing?
 

LisaW

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Hey Guys
Sorry to hear about what are happening to your teens. I developed epilepsy when I was 17. Unfortunately it was not just a once off episode. However, this has helped me help others and I have done more than most people my age.
 
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She had another seizure last Friday. We now have an official epilepsy diagnosis, and she's been started on Trileptal. No driving, of course. Apparently her EEG showed a focal seizure? Her two others have been Tonic Clonic/Grand Mal.

I'll probably be spending quite a bit of time here.

She's asked for a medical bracelet? Do any of you wear them, and what exactly did you put on it? She's resolved for the meds, but terrified of having another seizure and urinating herself in public. :-/
 
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