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Author Topic: 11 year old daughter  (Read 7497 times)
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gcollins
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« on: February 21, 2008, 02:38:44 PM »

My daughter who is 11 had the VNS surgery in August.  The surgery went fine and she came home the same day.  She slept for the first day and was really sore the second and third day.  Then she felt fine after that.  Children seem to heal really fast.  She was allergic to the iodyne and the bandages and got a huge upper body rash.  So far the VNS has not helped with my daughters seizures.  She has complex partial seizures which sometimes become generalized.  The scar on her neck looked really bad at first but now has smoothed out and is hardley noticeable.  I put scar ease on it everyday.

Ginger
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Birdbomb
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« Reply #1 on: February 21, 2008, 03:04:40 PM »

:Welcome:    

Welcome Ginger!

Thank you for posting about your daughter.  I am sorry the VNS hasn't helped.  Is it still avtivated?  Are you planning on turning it off?
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"If you are going through hell, keep going." (Sir Winston Churchill, 1874-1965)
VNS implanted Sept 02, turned off Dec 04, Generator ex-planted Nov 07
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Bernard
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« Reply #2 on: February 21, 2008, 03:51:15 PM »

Hi Ginger, welcome to the forum.

I would think that if she hasn't had any adverse reactions, that there is still a possibility that the VNS may provide some benefits in time.  The initial studies showed that many people didn't achieve peak benefits until after a year or more.
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labrat
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« Reply #3 on: February 22, 2008, 08:55:21 AM »

August isn't long enough to see if it is going to work. That's only been 6 months.

I got mine for TRD, but it took 15 months to achieve remission.

If she isn't having major problems with it, give it time.
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gel61820
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« Reply #4 on: February 22, 2008, 03:06:02 PM »

Hi Ginger,

Just wanted to chime in with the rest to give it time.  I was activated in August of last year and to date have had no results, positive or negative.  I am still hopeful that one day I will notice a change, but in the meantime as long as there are no negative side affects, I will wait patiently.

What settings is the stimulator at currently?  I am at 1.00 frequency with pulse width of 130, on for 30 seconds and off for 5 minutes.  I have elected not to do any further adjustments at this time since I even at this low pulse width I have problems with voice vibrations and hoarseness.  

Keep in touch and let us know how your daughter is doing.  And welcome to the forum!

 :im_033:
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"Do not go where the path may lead, go instead where there is no path and leave a trail." Ralph Waldo Emerson

VNS implanted July 2007 for Epilepsy.  Activated August 2007.  No success, so VNS was turned off in August 2008 and COMPLETELY removed (including coils) on Nov 25, 2008.
Fay
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« Reply #5 on: February 23, 2008, 05:10:13 AM »

I agree with everyone else about giving it time to work. It took us about 8 to 10 months before we started seeing the seizures going away with Scott. Even then though it wasn't an overnight thing by any means. It was a slow process over a few more months after that before we saw a huge difference in the seizure control.
Scott has Lennox Gastaut Syndrome which is one of the worst types of epilespy and one of the hardest to control so it might not take this long to see a difference in your daughters seizures. I hope the VNS helps her and I hope that you'll keep us posted. Hugs, Fay
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Bonnie
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« Reply #6 on: March 02, 2008, 06:19:37 AM »



Dear Ginger, :Welcome:
How is your daughter doing now?  I agree with the rest of the writers.  It is too soon to tell about the VNS and it helping reduce the seizures.  You need to give it more time.  I had my VNS put in last Oct. 2007 for depression.  I am still waiting.  My doctor said I would notice some change this spring.  

I know it's hard to wait, when it's your're child that your looking at, wanting her to get relief.  I have a hard time waiting for myself.  I hope your daughter gets some relief soon.  

Sincerely,
Bonnie
 
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Dispatch
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« Reply #7 on: June 10, 2008, 06:25:35 AM »

HI Ginger :D

I hope you have been able to see some positive results with your daughter.  VNS does take time to work although we all wished it was a complete cure immediately.  Take good care and please keep in touch with us.

Dispatch B)  
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VNS for TRD implant November, 2006.  Complete device removal including coils April, 2008.

"I reckon it's again my turn to win some or learn some..." Jason Mraz

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