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Vagus nerve stimulator
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rwcma23 posted:
My 10 year old son is a candidate for the vagus nerve stimulator and I am looking for other families who have children who have had it. It sounds like a good thing for him but am worried about side effects. Through the Internet I have found many adults who have had it and either it worked or didn't work for them. I am wondering what other parents of children who have had vns have dealt with. If anyone can help me I would greatly appreciate it.
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dancer86442 responded:
Hello rwcma,


No children here w/ VNS. But, I do now where you can meet others'. Try Facebook. I am a member of Several Groups. Some of the parents I have talked to, whose child has the VNS, say their child is doing fine. VNS is working for their child. It only takes a day, maybe 2, for the soreness from the operation to go away. Worst side effect: Change in voice.


I posted a message on one of my FB groups & will let you know where to look for info. So, check back in later this evening.


Another suggestion. Check Amazon.com for Epilepsy books that discuss VNS. There Mite be one aimed at children that discusses VNS.


I would really appreciate it, since you are a First, (that I can recall) if you will visit us b4/after the VNS & let us know how your child is doing. That way, if others' have the Same question, your Journey will be a Source of Info for them.


Lots of Hugs & Love to you & your Child. I really Hope the VNS is the solution for both of you.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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rwcma23 replied to dancer86442's response:
Candi,
Can I have the name of some epilepsy groups on Facebook. I didn't think to look there for help. Thank you for the suggestions. I appreciate them very much. Still deciding if he should get it or not. I will post after the surgery if he gets it.
 
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hawiian_girl11 replied to rwcma23's response:
HI h hve the VNS but I am 40. I could not have surgery. 3 lesions and they were too close to vital funtions.

I got the VNS on Sept 20 of 07. It was replace on August 25 of 10; I have not had it replaved yet.

What they do is make an inscion in your neack where it does not show and that will gain them access to the Vagus Nerve.

But first the will implant the Device in the left chest. There is a lead that they will run up the inside of the neck clase to the skin and will wind 2 elecrodes and an anchor around the nerve so it can receive the volts of electicitry.

After they hook up the nerve they connect it to the device and turn it on so it is jut running. not turned for therpy yet.

THe device is then anchored to the mucle wall by severa stoches that are very strong to hold it in place.

They tell you not to bend over for a week so the insion does not have any roblems.

Your left upper arm will hut as well. As for pain when he wakes up from the surgery he wil be in CONSIDERABLE anount of it.

Depending on his docort he may be kept over night. mine ws in and outl; I was stoked on HIGH doeses of Vicodin for several weeks.

What the VNS does is sends even slectricccal bursts of electricity every so many minuts for so many secnds. IT goes up thru the brain stem to the bas of the brain and into the barinl.

IT keeps the neurns from finifn out of order and and

it is usually set fpr 5 mnutes OFF and 30 seconds ON. However I could not stand the stmutaion of 30 seconds so he lowered it to 20 seconds. So I was at every 5 minutes OFF and 20 seconds ON.

4 months ago I was having a little bit of trouble with it so everythings was reset and now I am at 1.8 minutes OFF and 21 seconds ON.

I have a 2,50 amp with a magnet swipe of 2.75 amps.

I can swipe away auaras and szs before they get to me. I have to pay attention to my auars though; Mine are butterflies in my stomach. as soon as I feel that I swipe and it goes away and that stop and the sz never reaches me.

I am on 800 mgs of Lamictal 200 mgs of Topamax and 3 mgs of Klonopin for sz drugs.

What does he take.

MOst of the time they doen't usually implant kid under 12 years unless theyfeel it is is necessary.

if you have any more questions I will try to answer them.

I do not have a facebook account due to being hacked into, so I got out before more could happen.

I live in Hawaii and live in W. Honolulu near the Waaikiki area so it gets really busy during the summer with al the tourist on the beach.

Bettter go for now,

NAncy
 
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dancer86442 replied to rwcma23's response:
VNS-Vagus nerve stimulation therapy is on FB. I am an admin on: National Seizure Disorders Foundation Community. Friend Jeanne Phelps & I will add you. A member of this group gave me the FB page for you. I belong to several groups, but, my opinion, NSDF is one of the better sites for support & Info. Hugs Hope to see ya soon on FB


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 responded:
candi, apparently she did not catch my post abut that VNS. I have a child with one and I have one. I can answer her questions asw ell.


nancy
 
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hawiian_girl11 responded:
Aloha,

I have a VNS and so does my daughter. I have Complex Partial szs and she has Tonic/Clonic szs. While she can not swipe herself I have to do it for her it helps to shorten her sz or stop it while she is in it. She gets relief even when in the regular cycle.

I can swipe myself and cut off szs before they even hit. When I feele them coming on I just run the high powered magnet over the device and it will either stop it or shioten it if I don't do it in enough time.

The normal cycle is 5 minutes OFF and 30 seconds ON. However , mine is set to 1.8 minutes OFF and 21 seconds ON.

it was reset months ago now. They wanted better therapy.

Gretchen has not had her VNS adjusted in 2 yrs and is doing really well with it. For a while she had to have it adjusted almost everytime we went to her neurologist.

The normal s/e are shortness of breath, hoarseness of voice and that is a big one. some coughing. I have had mine for 6,5 years maybe a little longer and I still cough on occasion, insomnia, indigestion and pain.

Usually they don't implant under the age of 12 unless the epilepsy is intractable or stubborn to controable, or the doctor deems it is necessary.

I have the implant because I was not a candidate for surgery because the 3 lesions were too close to vital functions of the brain and would cause a lot of damage had they done it.

I started respsnding to it in 2 months and it took just over a year for her to start responding to it. But that is US and not hom. everyone is different.

I hope he gets it and gets some relief and has great luck with it.

It is well worth it in the end.

Good luck and best wishes

Nancy


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