Lily's Everyday
She is in a special class called a cross categorical class which is in the public school here in Virginia it is a separate class for special students like her. She is technically a 5th grader this year but her cognition is unknown. We don't know what she knows and there is little communication on her part. She is non-verbal and has poor use of her hands so sign language is out. We have recently introduced a cards system which consists of using photo cards and eye gaze for communication. She seems to do well with this. In her eyes it looks like she understands more than she is able to communicate. Which is very frustrating, more so I am sure for her.
Reducing Some Seizure Meds
We have recently been able to get Lily off some of the anticonvulsant medicine that has some terrible side effects. As a result of doing this Lily has become much more aware of everything and everybody. I am hoping this will continue to get better with each passing day! 11/08/07
VNS
(Vegas Nerve Stimulator)
What is this? Will it help? We hope so!!
Vagus nerve stimulation (VNS) is a type of treatment in which short bursts of electrical energy are directed into the brain via the vagus nerve, a large nerve in the neck. The energy comes from a battery, about the size of a silver dollar, which is surgically implanted under the skin, usually on the chest. Leads are threaded under the skin and attached to the vagus nerve in the same procedure. The physician programs the device to deliver small electrical stimulation bursts every few minutes. This is a relatively new type of treatment. It may be tried when other treatment is not effective. Just how it works to prevent seizures is being studied.
This paragraph was taken from the epilepsy foundations web page to read more follow this link..... http://www.epilepsyfoundation.org/answerplace/Medical/treatment/vns/
This April Lily will have her final evaluation and surgery for this devise will be scheduled. Her seizure's are very drug resistant and she has anywhere from 0-3 daily. She is on two anticonvulsants that do not control most of the seizures she is having. We hope getting this will greatly decrease the number of seizures she has and in turn we can reduce the amount of anticonvulsants she is on.
May 2007
Lily had her surgery and everything went fine. It was a minor surgery, I was more nervous than she was. We left the hospital about 2 hours after the device was implanted. She slept for a couple of days and had a little bit of pain. Two weeks later we had the device turned on, something we thought would happen the day of her surgery. We went back for 6 continuous weeks there after for amperage increases. We had to increase the amperage slowly otherwise it tends to make the throat sore. So by the time camp rolled around the device was up to the level the Neurologist planned to leave it at for the next 3 months. The VNS is like a drug and may need increasing or decreasing depending on the seizure activity. For the first few weeks after her surgery Lily didn't have any seizures. She has had some since but we are very please with decision to use this device. I think in the long run it will greatly decrease the # of seizures Lily has every day! Carie