Condition: Aggressive Form of Epilepsy
City, State: OR
Club: International Cascades Campus - Redmond Sparrow Club Service Hours: 262
Date Adopted: 4/21/2008
Kyle's Story:(12/8/08) Kyle has Myoclonic-Astatic Epilepsy (MAE). MAE is an epilepsy syndrome of early childhood that is often resistant to medication. For this reason, it can be difficult to treat. MAE is an idiopathic generalized epilepsy, meaning that there is no known cause for the seizures. It is an aggressive form of epilepsy associated with brain dysfunction. Kyle's first seizure was this past January 19th (2008) before his 3rd birthday. He was diagnosed with epilepsy at that time. He's on four different medications right now. To help keep him from having seizures Kyle also had to have a Vagus Nerve Stimulation put in on October 21, 2008 at Doernbecher's Hospital in Portland. VNS uses an implanted stimulator that sends electric impulses to the left vagus nerve in the neck via a lead wire implanted under the skin. He has to have this monitored by his doctor in Bend. A VNS implantation devices consist of a titanium-encased generator about the size of a pocket watch with a lithium battery to fuel the generator, a lead wire system with electrodes, and an anchor tether to secure leads to the vagus nerve. The battery life for the pulse generator is between 1 and 16 years, depending on the settings [ie how strong the signal being sent is]. The implantation of the VNS device goes as follows: an incision is made in the upper left chest and the generator is implanted into a little "pouch" on the left chest under the clavicle. A second incision is made in the neck, so that the surgeon can access the vagus nerve. The surgeon then wraps the leads around the left branch of the vagus nerve, and connects the electrodes to the generator. Once successfully implanted, the generator sends electric impulses to the vagus nerve at regular intervals. Story: Kyle is a fun loving little boy and these seizures affect his world too often. Sparrow cash raised for Kyle will help alleviate some of the financial stress for his mom related to the medical expenses not covered by insurance and their everyday living expenses. It will also help with travel costs when they make trips over to Portland for Kyle's doctor visits. It's tough for her as she's a single mom and raising two other children also.
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