Vns

[justme]

Ok just a question...with the vns how can tell if when it needs to be replaced. Also, when using the magnet how do you know for sure if you set the thing off?

[Busymommie]

I think that depends on the model. Riely just got her in Feb 06, we were told that when Dr. Parrott checks it it will advise him that the battery is nearing time for replacement.

If your child is verbal you should/might be able to hear it in the voice, Rileys gets all wiggly when the stimulator is on. I think that is true for most people. Even if yoru child is non verbal you can hear it in the cry, or other sounds.

[Epilepsymamma]

they get tingly.

[justme]

ok but during a seizure you do not know if they are getting all tingly or not you are just kind of feeling for the device swiping all like heck hoping not to have to pull out the diastat?

[Busymommie]

I have wondered a time or ten if I am swiping it the right way, I just swipe and hope for the best. There have been times quite often that I swipe it a second time if I don't see any results.

If all else fails I go for the diastat as much as I hate it.

[Missyat]

Hello there,

My son's VNS has a special "trigger" inside it that when the doc ''reads'' it, the device can tell them how much of the battery is left for the triggering of the device on.

There is also a EOS (End of Service) unfortunately my son's never went "off"

The ways to tell if the VNS is not working properly is

1. increase in seizures.

2. swiping does not seem to help when it has helped in the past.

3. hearing the VNS go on in the voice of child is sporatic.

4. pain. There should NEVER be pain, if there is something is very wrong and get to the neuro NOW.

We had 1, 2, 3 but not 4. My son's VNS lasted 3 years, and last Nov. he had his second on implanted and it only took 1/2 an hour and he was done. The neurosurgeon even checked on the wires to be sure they were still doing their jobs and did not need replacing.

[Rocking4Epilepsy]

I suggest you swing by the www.vnsmessageboard.com
We have over 600 members and tons of great info that will help you.

Hugs

[justme]

I was wondering where the support went to for the VNS...you know cyber deleted theirs a while back

[Busymommie]

I didn't even know they had one... :confused:

There is another group on yahoo for kisd with a VNS. I have the link saved on my work computer, there is at least one other mom here who is a member. I don't post there much. We are fortunate enough to have met a couple of local families who have children with a VNS.

How old is your child?
What type of seizures?

[justme]

my child is now 20..she got it at 18...her seizures vary from everything. she has mixed seizures and very hard to control...on 4 different meds as we speak along with the VNS...I will say we have seen improvement with the VNS as diastat would not even touch them before the VNS...its just once a seizure hits it is like the VNS does nothing.

the list
Myos
Parital
Complex Patial (RTLE)
Tonics
Tonic/clonic
The only one she doesn't have is Abscence

[Rocking4Epilepsy]

When they shut there site down this lady was nice enough to pick up the peices and has a wonderful forum.

Stop by visit

www.vnsmessageboard.com