Elijah G. - Quilt Finished in 2007

Born: September 4, 2001

Illness: Tuberous Sclerosis, Intractable Epilepsy

Elijah's Story

Written by Elijah's mom Michele in April 2007

Elijah entered this glorious world on September 4th, 2001. A week later, 9/11 happened, but it was also the beginning of a long journey for Eli. He began to have these odd shaky movements in his right leg. At first I actually thought it was my cell phone going off and vibrating on my side, but it wasn’t, it was my baby. I thought it was strange, but didn’t really pay much attention to it. I casually mentioned it at his well baby check up, and the Dr said baby’s often do weird stuff because of their immature nervous system. Good, I thought, just what I wanted to hear. I certainly didn’t want him to tell me something was seriously wrong.

At first these events were very sporadic and very short. However, as time passed they became very noticeable and lengthy. We couldn’t ignore them anymore. All along in the back of my mind, I knew what it was but I wouldn’t accept it. By the time we got in with the neurologist he was having full blown tonic-clonic (grand mal) seizures. Immediately he was admitted and ran through a battery of tests. He had his first brain MRI at the ripe old age of 4 months. He also had a lumbar puncture, EEG, about a gallon of blood to run every imaginable test. The results crushed us. They said that Elijah’s seizures are coming from the left temporal lobe and are the result of a lesion in that area. The only hope for a seizure-free future is a invasive surgery to remove the left temporal lobe, hippocampus, and amygdala. We were so not ready to even entertain that idea.

We decided to try the medicine route to help control these seizures that by this time were happening every single day, multiple times a day. When I say we tried, we tried every single drug out there, but to no avail. None of the anti-epileptic medicines completely controlled his seizures. Being on such high doses of meds, the effects on his cognitive ability were becoming more obvious.

In early 2006 we decided to venture down that scary surgery road. The first step would be more tests including a PET scan, MRI, EEG, and SPECT to determine if he was indeed a surgical candidate. The results showed that he was not. We were nervous about the possibility of a craniotomy, but when that option was taken away, I saw Elijah’s future go down the drain. It was his only hope.

The neurosurgeon recommended that we implant Elijah with a Vagus Nerve Stimulator (VNS). It is an implant in his chest similar to a heart pacemaker, except it's for the brain. The device is little bigger than a 50 cent piece. Then another incision was made in his neck to wrap a wire around the vagal nerve. The device works by sending electrical impulses to the brain in an effort to offset the abnormal discharges that spark the seizures. The device runs 24/7 automatically. The settings can be changed at a routine neurologist visit via a handheld programming wand.

I forgot to mention, Elijah’s brother Fletcher, also has the VNS. That’s why I was in such denial at the time. I absolutely couldn’t believe that this nightmare was happening all over again.

Despite everything he endures on a daily basis, with no end in sight, he is very happy. Elijah gives the best hugs and sloppy kisses. He loves PB & J sandwiches. Believe it or not, he prefers the old school cartoons versus the new age stuff. Nobody comes between Elijah and his Tom & Jerry episodes.