OPTIONS AFTER FAILED MEDS

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sonjarenee
New Member


Date Joined Oct 2005
Total Posts : 15
   Posted 10/22/2005 7:01 PM (GMT -7)   
mad  My 5 year old son was diagnosed with intractable epilepsy a year and a half ago. He has been on alot of different medicines and the problem is even if hes at a point when hes seizure free hes to sensitive to the medication and starts the side effects.  It has been such a rollercoaster. Does anyone have any advice?

sonjarenee
New Member


Date Joined Oct 2005
Total Posts : 15
   Posted 10/23/2005 9:32 AM (GMT -7)   
Thank you MandiAnn, and Jennifer
 My son is currently on Topomax and Felbamate.  Starting Felbamate was really scarry for me because of the side effects but so far so good I guess.  He was having tonic clonic and then also developed drop attacks. The Felbamate has gotten control of almost all of the drop attacks yeah but he still has the tonic clonic ones. The o.k news is that the seizures are always really short less than a minute but the bad news is w/o valium he'll have them back to back. He has been on Dilatin, Depakote, Keppra, Lamictal, Zorontin. His epileptologist brought him in for a three day visit to get other opinions and they deciced ketoginic diet would'nt help him and we started felbamate.  I am currently with Childrens Memorial Hospital in Chicago they have a Epilepsy Center. I'm really confident about his doctors I'm in continuous contact even between visits the first sign of a problem and she's all over it but I'm having a really hard time adjusting.  I feel like all I have is the hope that he'll grow out of it.

Post Edited (sonjarenee) : 10/24/2005 3:52:26 PM (GMT-6)


Pernicious Angel
New Member


Date Joined Oct 2005
Total Posts : 3
   Posted 10/24/2005 5:08 PM (GMT -7)   
Have you talked to a Dr. Doug Nordli from that hospital in Chicago? I've done some research on the different meds available now and he sounds like he'd be the one to consult on this. It's just too bad I live in Arkansas or I'd look him up myself.

sonjarenee
New Member


Date Joined Oct 2005
Total Posts : 15
   Posted 10/24/2005 6:20 PM (GMT -7)   
Hello Pernicious Angel
 
 
Yes I know of Doctor Nordli hes a friend of mines neurologist her son has epilepsy. Doctors Nordli works with my Doctor Sookyong Koh. I'm comfortable with my epileptologist. I'm just having a hard time adjusting.
 
Thanx sonjarenee

Pernicious Angel
New Member


Date Joined Oct 2005
Total Posts : 3
   Posted 10/25/2005 12:03 PM (GMT -7)   
Hi Sonjarenee,
Hang in there. I know it's hard and troublesome time changing meds but it does get better.
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sonjarenee
New Member


Date Joined Oct 2005
Total Posts : 15
   Posted 10/25/2005 4:19 PM (GMT -7)   
Thanx Pernicious Angel
 
Thank You soooooooo much for the encouraging words they really do help.
 
P.s I like your picture

Marcel
New Member


Date Joined Oct 2005
Total Posts : 11
   Posted 10/27/2005 12:47 PM (GMT -7)   
Hi, sonjarenee, could you give me the email of this Dr. Nordli? Thank you. Marcel

Marcel
New Member


Date Joined Oct 2005
Total Posts : 11
   Posted 10/27/2005 12:51 PM (GMT -7)   
I have problems with my ram memory, I forgot a lot of recently things I did or I told, what can I do for improve it.
 
 

sonjarenee
New Member


Date Joined Oct 2005
Total Posts : 15
   Posted 10/27/2005 4:42 PM (GMT -7)   
HI Marcel

I am not sure about your memory.
www.childrensmemorial.org is the website go to the right side and click on departments and programs, then click epilepsy. Dr. Nordli info will pop up/ but if you click physicians and staff you'll get more detailed info. The number is
1-773-880-6159
1-800-KIDSDOC
You can also ask your memory question and they'll respond within 3 days.
KIDSDOC@CHILDRENSMEMORIAL.ORG
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