Pages: [1]   Go Down
Print
Author Topic: Daughter  (Read 4765 times)
0 Members and 1 Guest are viewing this topic.
lllasj5
Newbie
*

Karma: +0/-0
Offline Offline

Posts: 1


« on: October 08, 2007, 12:03:14 AM »

: newbie : Hello, My 17yr.old is now on a waiting list to get VNS put in. She's had seizures since she started menstrating at about 12. Maybe 6 different meds. nothing has worked. She is convinced that this is her cure all. She wants to go away to college next year, but we won't let her unless her seizures are under control. Lisa
Logged
Bernard
Excelsior!
Global Moderators
Hero Member
*****

Karma: +14/-0
Offline Offline

Posts: 1438



WWW
« Reply #1 on: October 08, 2007, 12:16:05 AM »

Hi Lisa, welcome to the forum.

Are her seizures always occurring around her periods?  Has she been diagnosed with catamenial epilepsy?  If so, has she tried progesterone treatment?

There are some alternatives to AEDs which might be worth exploring while you wait for the VNS.  Check out the chart in my signature.  I highly recommend looking into EEG Neurofeedback and the seizure control diets.
Logged

What do you know about neurofeedback?
Check out this chart of alternative epilepsy treatments.
Fay
Moderators
Hero Member
*****

Karma: +2/-0
Offline Offline

Posts: 1294



WWW
« Reply #2 on: October 08, 2007, 03:48:50 PM »

Hello and welcome to the group.
Having the VNS implanted is a lot more complicated than simply having it implanted and if it doesn't work having it removed. The VNS has a LONG list of side effects and they DO happen. Some side effects are very common too.
I'd have your daughter read all 4 of the manuals paying special attention to all the side effects. Each one of the manuals has different side effects listed so it's extremely important to read all 4 of them. I'd also have her read everything here on the board including reading all the links too.
My now 18 year old son had a VNS implanted in 2000 and he has several life threatening medical problems his VNS (and vagus nerve damage) caused. They will affect him for the rest of his life even though his VNS was removed.
I'd also remind her that the VNS is not a miracle. It does not replace the meds but rather works WITH the meds. Plus it can take months before you know if it even helps the seizures. And the only way to know if it will help or cause problems is to have it implanted. Having the VNS implanted should only be done if there is nothing else to try. I agree with Bernard about trying Neurofeedback or one of the diets (Ketogenic diet, modified Atkins diet or the LGIT diet) before having the VNS implanted. The diets really do help adults too. John Hopkins is doing both the modified atkins and the ketogenic diet with adults now and they have done research that proves these diets help adults as much as the ketogenic diet helps kids. Scott, my 18 year old son, is on the ketogenic diet and has been completely seizure medication free since August 3, 2005. His seizures are 99% gone. He very rarely has a seizure now- thank God. His Neuro and dietician feels that once we can get the GI problems taken care of (thanks to the VNS) that we can get the seizures completely gone again. He went exactly 2 years and 13 days without any seizures at all which is a miracle considering he had hundreds of seizures a day, went into nonstop seizures all the time and was confined to a wheelchair. He hasn't sat in his wheelchair since Jan. 20, 2005!
I wish her the best of luck and hope you'll keep us posted. If you have ANY questions, please feel free to ask. You have bunches of friends here that will help any way we can. Hugs, Fay
Logged
Petunia
Moderators
Hero Member
*****

Karma: +1/-0
Offline Offline

Posts: 840


WWW
« Reply #3 on: October 09, 2007, 07:17:15 AM »

Hello, welcome
I'm a 40 year old women who has a history like your daughters. My seizures started when 12, and still continue now. I have gone through every med. out there, had surgery and done the VNS.  I really don't have anything more to say about the VNS.. Fay said it all, read, read, read all the manuals. I like your daughter thought the VNS was going to be my miracle, it wasn't. It made things worse and I now have some nerve damage on the left side of my face and into my neck.  (thanks to the VNS) Now, don't get us wrong, there are people out there that have had great luck with the VNS but it should be done as a last resort.  It will not be a quick fix.
Now, for my next question.  How many seizures is she having and what kind does she have?
Logged

Complex Partical seizures since age 12. Right lobectomy in 1992, VNS Feb. 2003, removed Feb. 2004. I'll just keep trying.
Pages: [1]   Go Up
Print
Jump to: