Child with VNS??

[mrsfascinating]

Our DD7 has had refractory epilepsy since she was 3. The neurologist is really pushing for us to have the VNS. We even met with a cybertronics rep ,but they aren't going to say anything bad about it. So if anyone has a child with it good or bad I would like your input.

 

[I Love Pluto]

I'm not sure what a VNS is. If this is the device that is activated with a magnet - then I can comment.

I had a student with this device. He had uncontrollable epilepsy before this device. With the magnetic device, he improved tremendously. He did have an aide who stayed with him throughout the school day so that she could activate the magnet when needed.

I hope this info helps your daughter.

 

[swimlib]

I too worked with 2 students that had VNS. Each staff was trained on how to use it and it decreases the intensity and length of the seizures. The VNS worked really well for both students, and with higher functioning children, they carry it with them and canuse the magnet to actually stop seizures as they started.

if you want a unbiased info site, go to epilepsyfoundation.org and look at teh different treatments for seizures. They have a wealth of knowledge on that website.

 

[Snoopymom]

I too worked with 2 students that had VNS. Each staff was trained on how to use it and it decreases the intensity and length of the seizures. The VNS worked really well for both students, and with higher functioning children, they carry it with them and canuse the magnet to actually stop seizures as they started.

if you want a unbiased info site, go to epilepsyfoundation.org and look at teh different treatments for seizures. They have a wealth of knowledge on that website.

I agree, the parents helping parents board on the epi foundation site has been so amazing and helful to me.

http://www.epilepsyfoundation.org/

.

 

[Mike Bartenhagen]

I have looked into the VNS several times for my son, he has Lennox Gastaut Syndrome and 100 seizures a day has been common for many years, but I just can't find a lot of doctors that seem to be really positive about the device. Our primary neuro says despite the numbers Cybertronics has he hasn't seen as good of results as they report. Have you considered the Keto or Atkins?

Mike