Lost on what to do after 1st seizure

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mountainhouse
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Date Joined Sep 2005
Total Posts : 4
   Posted 9/9/2005 7:20 PM (GMT -7)   
My 23 year old son had a first seizure last Sunday. I hope this is okay to post this here, as I'm having a hard time getting information. The seizure about lasted 2 minutes. Had no recollection of the event afterward. Went to ER and had CAT scan and blood/urine tests - all negative. No prior health issues of any kind. Was really hoping the neurologist would have some information, but he was pretty much a jerk. He ordered an EEG and MRI, and said he'd see us in 2 months. Wasn't willing to give any information even based on probabilities. We asked about driving, but he wouldn't even give conditions for that to start again. Very frustrating.

I've found quite a few resources once epilepsy is diagnosed, but not much about what to expect after 1 seizure. Any help would be much appreciated. Thanks,

frankB

Daisy9980
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   Posted 9/9/2005 10:58 PM (GMT -7)   
I was 23 when I had my first Grand Mal seizure. It is best to stay off the road for at least 6 months. I also got a second opinion, though I stayed with the first neuro. I hope your son is feeling better. Take care, Tracy
 


kayakmom
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   Posted 9/10/2005 7:56 PM (GMT -7)   
HI frank, So sorry that your son had a seizure. It can be a good thing when tests come out normal! Hoping the EEG shows if this is a one time event or something that needs treatment.

ANYOne can have one seizure in their life time at any time. 10 % of the population DOES have one seizure at some time. Developing into a seizure disorder with on going seizures is closer to 1-2 % of the population....

I wish yuo well as you figure this all out. Hoping he is doing ok. Will he see a neurologist for a full evaluation?

Ginny

Daisy9980
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   Posted 9/11/2005 8:13 AM (GMT -7)   
That is great info Ginny thanks for posting it. Tracy
 


mountainhouse
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Date Joined Sep 2005
Total Posts : 4
   Posted 9/12/2005 4:55 AM (GMT -7)   
Thanks very much for all the feedback. No, my son got no meds at the ER (Kaweah Delta Hospital, Visalia, CA). His primary care physician (Kaiser - Northern CA) said he wouldn't consider regular meds until a 2nd seizure.

My son spent last week at home just taking it easy. He's worked out the bus schedule, and we drove him home yesterday. He'll have about a 5 block walk from bus stop to work, so we sure hope all goes well.

The neurologist is probably competant, but is just very ill mannered. Example, while giving my son some simple tests, he pointed at the back of his wristwatch and said, "What's this?" My son said it was a "clip". Neurologist rolls his eyes and says, "No, it's a clasp." There's are several neurlogists in this group, so we can just ask to change. Thanks for the suggestions on 2nd opinions. I will definitely do that if the tests come back with anything but all negative.

My wife and I keep trying to think of environmental factors that might have brought this on, in the say the 24 hours prior. Any benefit to dwelling on that, or is that usually fruitless?

Thanks again for the advice and the warm welcome.

frankB

Daisy9980
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Date Joined Sep 2004
Total Posts : 775
   Posted 9/12/2005 12:16 PM (GMT -7)   
Very true the want to wait for a second seizure. In my case they proved that with an ambulatory EEG. You may want to consult a Neuro outside of that specific group. I hope your son is doing better and thank you for the update. Take care, Tracy
 


mountainhouse
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Date Joined Sep 2005
Total Posts : 4
   Posted 9/12/2005 6:20 PM (GMT -7)   
The 2nd opinion sounds like a good idea. In the meantime, does the neurologist's response generally sound okay? My son got some advice from a friend that since he's 23 (unusual age for this), both the EEG and MRI should be done IMMEDIATELY. Like, tomorrow. He's concerned. 2nd opinion should put that to rest I guess. Was going to call the local hospital (non-Kaiser) and ask for the names of board certified neurologists. Good approach? Again, thanks for answering all my questions. I REALLY appreciate it!

kayakmom
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Date Joined Jul 2003
Total Posts : 585
   Posted 9/13/2005 1:21 PM (GMT -7)   
YOu can also call an EFA affiliate or the American Epilepsy Assoc for names of board certified neurologist. They do not always comment on whether they are good or bad.

It is not that uncommon to have a seizure at 23. Most have their first seizure prior to age 25. An imediate EEG is nice, since it may catch abnormalities from that seizure. Many people wait up to a few months for that first EEG and neuro visit, though. MRI can be perfectly normal even with epilepsy. The neuro might just have been testing how coherant he was post seizure. Sometimes it is hard to figure out what they are wanting when they ask odd questions and bed side manner is not always good for some. Hoping you can get all your questions answered. It is so hard to stand by as a parent and worry that another might hit!

Hang in there! Ginny

DBG
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Date Joined Sep 2004
Total Posts : 235
   Posted 9/15/2005 7:34 PM (GMT -7)   

Hi Frank, when I read Kaweah Delta I smiled cause I have alot of family that lives in Visalia and i've actually been to that hospital.  As far as Kaiser is concerned, don't give up.  I have Kaiser and I can't say enough good about it.  When I first got Kaiser I saw a general neuro and like your experience, I got no results.  I've had sz's since I was 1 so when i'd see my neuro it was only really to refill meds.  I'd read an article that UCLA had an Epilepsy Unit so I asked my Kaiser neuro if they'd refer me there and she said casually "Well we have an Epilepsy unit here."  I was irritated that she'd see me for almost a year and knowing that my sz's weren't controlled by meds, she still failed to relinquish my file to them.  Then finally she did and it's been the best thing that ever happened to me.  They are seriously committed to helping their patients live sz free.  My Epileptologist is Dr. Spurgeon.  There are alot of them so if you don't connect with one you can see alot of them because they aren't just located in Anaheim.  I saw a few different ones in Los Angeles when I had my brain surgery.  You'll never regret seeing one of their Epileptologists.  If I can help with phone numbers or directions let me know. 

Christine   


GraemeD
New Member


Date Joined Sep 2005
Total Posts : 4
   Posted 9/16/2005 9:51 AM (GMT -7)   
i had my first seizure on june 5th of this yr,i then went on to see the peadiatric consultant at hospital,i beleive they cant give any meds based on one seizure,lots of people have only one seizure in there life,but since then ive had a lot more seizures,i ve also had  a ECG,EEG but am stilling waiting for a MRI,results came back for EEG last week which basically said,the results of the EEg show consistancy with that of epilepsy,they want to put me on 400mg of sodium valproate for 2 weeks then 800mg of the same.So basically the diagnosis is a long process,keep at the doctors etc.It took my mum 4 months to get things moving.I will just be glad when i go to hospital next week for my meds and a proper diagnosis,type of epilepsy.

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 9/16/2005 10:10 AM (GMT -7)   
I hope the Valproate will help control your seizures Graeme. Thanks for your input, as well! Sorry that the seizures continued past that first one!

mountainhouse
New Member


Date Joined Sep 2005
Total Posts : 4
   Posted 10/1/2005 4:37 PM (GMT -7)   
Again, thanks for all the feedback. This forum has been so helpful.

We met with another Kaiser neurologist yesterday. We chose him based on resume (board cert., etc.) and referrals from Kaiser employees. What a difference!! We felt so much more at ease after leaving his office. He suspects this is a single event, so at this point is not recommending any meds. He did a full workup, explaining why he was asking questions if we look puzzled at all. BTW, MRI/EEG both came back negative, and son's had no issues since the first seizure. He advised us that if it is epilepsy, roughly 60% of the time, a 2nd seizure will come in 3 months, and 95% of the time, it will come in the first 6 months. He scheduled a followup for 12 weeks. I think we're on the right track.

Like Ginney, he mentioned the age range for juvinile onset ranging up to 25.

Christine, we're NorCal residents. It's good to know there are alternatives to Kaiser if we need it.

Again, thank you all very much. Take care,

Frank
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