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Edith_h2525
New Member


Date Joined Dec 2005
Total Posts : 15
   Posted 1/19/2006 11:44 AM (GMT -7)   
Well, Joe, my 19 yr old son, (dx in nov.) had 2 Grand Mal seizures Tuesday.
1 at school and the other after I picked him up and got him home.
The neuro has given up already. Says he should be responding better to meds. 2250mg keppra and 200mgs topomax daily.
We are now being referred to an Epileptologist.
Has anyone had better luck with an Epileptologist vs. a neuro?
Thanks,
Edith

Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 1/19/2006 3:06 PM (GMT -7)   
Sorry to hear the seizure news. I'm looking for more control for my daughter. She had a "hard" four minute seizure at school today. I've heard great things about the EPIs. We don't even have one in town. I'm so ready for her to respond to medicine. My freind says he should be checking levels to see how fast she metabolises the meds. Is that normal? She never had a blood level donr. Just CBCs in the ER. HMMM! I'm not meaning to take over yur thread. Prayers go out to you. Keep us informed. I'm still learning myself.
 
Beth B. in Tn

Edith_h2525
New Member


Date Joined Dec 2005
Total Posts : 15
   Posted 1/19/2006 3:17 PM (GMT -7)   
The Epi they are sending us to is about 80 miles away. At this point it could be 180 and we would still go. I hope you and your daughter have better luck. The 2nd sz Joe had was real hard, gave him a splitting headache and sick to his stomach. Was down the whole next day.

Edith in Tx

Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 1/19/2006 3:21 PM (GMT -7)   
sad  So, sorry , I do know how watching this is too. Way to hard. Hope Joe's better soon. Please let us know how the appointment goes.

Edith_h2525
New Member


Date Joined Dec 2005
Total Posts : 15
   Posted 1/19/2006 3:24 PM (GMT -7)   
Thanks Beth,
I cant tell you how much I have learned reading these posts. Its nice to know we arnt alone in all this. I alraedy thought I knew alot from Mom have G. M., but I found out I didnt know anything!!!!

Beth B. in TN
Regular Member


Date Joined Oct 2005
Total Posts : 83
   Posted 1/19/2006 5:55 PM (GMT -7)   
WOW! so you've been around the block so to speak. It is so different from this point of view though. I remember when my brother woke up paralyzed when he was 12. It turns out he had a tumor around his spine. Anyway, my mom sounded angry. She was like "get up, get up now". Move your legs. Stop this." I now realize she was petrefied. Anything, some kind of bad joke, would have been better than the reality that was unfolding before her. It's not easy holding myself together sometimes for her...but I would do anything for her. Keep on, Keeping on, Edith. Beth

Edith_h2525
New Member


Date Joined Dec 2005
Total Posts : 15
   Posted 1/20/2006 7:09 AM (GMT -7)   
Little bit I guess. Mom has Grand Mal, sister had childhood petit mal and neice had childhood absence seizures.
I think that is why this has thrown me for such a loop. I always assumed if any of my boys would get it it would be as kids. Joe is my youngest and he is 19. Been perfectly healthy for his entire life!
My mom is feeling guilty, I keep telling her it is no different than my sister having blonde hair and me hving brown. Just kind of a toss of the dice. Dosent help her or Joe tho!!!!

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/20/2006 11:19 PM (GMT -7)   

Hi!  :-)   If his insurance will cover him seeing and epileptologist he should go.  A Neurologist is good, but and epi is just so much more educated on epilepsy.  I hope that he is feeling better after 2 grand mals.  That is tough.  Mine knocked me out physically for almost 2 weeks.  Good luck with everything and take care, Tracy  


 
 

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