Spina Bifida & Seizures - Epilepsy Message Board

Bendcoles · 11-22-2000, 11:29 PM

Hi! I have an 8 yr old daughter with SB, vp shunt & seizures. She started having focal sz at the age of 1 (eyes & head to the right). They usually go into grand mals but lately have just been staring ones. She takes Carbatrol (time released Tegretol) 2x a day but still has breakthrough sz. Her neuro says thats just her! Unfortunately, he's the only neuro we have to go to unless we travel 4 hrs across a mountain pass. Anyway, I was just wondering if anyone has a child with SB & sz...I'd love to talk! Thanks!

Diane

rkern · 12-28-2000, 09:55 AM

No SB, but a total lack of developmental advances. Our daughter suffered a birth trauma that was first evidenced by seizures. I sympathize with your plight on finding a second neuro - we've had a hard time finding pediatricians who weren't afraid of Kayla and have fired two already. It's tempting for some people to say "A 4 hour drive for your daughter is a sacrifice you must make" but those people don't understand, do they? You may have some luck through a local or regional chapter of the epilepsy foundation. They could help find an epileptologist as opposed to the more general neuro. How "isolated" are you that a mountain pass separtes you from alternatives? Even after 8 years of working with your daughter there may still be resources out there that you haven't found; I suspect that your attention was probably on her other complications. That happens to us all the time and we forget about some of the opportunities we have for OT\PT or preschool, or other stuff because we get focused on the epilepsy.

Good Luck, I hope for the best for you. Never take a doc's word, always check it out on your own. He doesn't know everything and only you know your daughter.

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Failure is not an option; it is bundled with your software.

[This message has been edited by rkern (edited 12-28-2000).]

Bendcoles · 01-04-2001, 12:13 PM

Thanks for your reply. Driving so far to see another neuro isn't feasible at this time as our minivan is on its last legs. Our insurance has also changed to a PPO so we can only go to the drs on the preferred provider list or they won't pay their percentage. Also, we're so far in debt right now from medical bills we try to see as few drs as possible! Please don't misunderstand, she sees drs when needed but no other time. Anyway, she has been healthy for quite some time now & hasn't had a seizure for 2 months!

Diane

[This message has been edited by Bendcoles (edited 01-05-2001).]

bookreader871 · 02-07-2006, 03:18 PM

Quote:

Originally Posted by Bendcoles

Hi! I have an 8 yr old daughter with SB, vp shunt & seizures. She started having focal sz at the age of 1 (eyes & head to the right). They usually go into grand mals but lately have just been staring ones. She takes Carbatrol (time released Tegretol) 2x a day but still has breakthrough sz. Her neuro says thats just her! Unfortunately, he's the only neuro we have to go to unless we travel 4 hrs across a mountain pass. Anyway, I was just wondering if anyone has a child with SB & sz...I'd love to talk! Thanks!

Diane

my sister has sb, vp shunt and seisures. she handles it pretty well. she's 3 years old and learns sign langauge to help her talk better. she also can walk which doctors thought she never would. my advice is just to pray.

thanks! krystle