Fletcher G. - Quilt Finished in 2007

Born: May 9, 1995

Illness: Tuberous Sclerosis, Intractable Epilepsy

Fletcher's Story

Written by Fletcher's mom Michele in April 2007

Fletcher made a loud triumphant entrance bright and early the morning of May 9th, 1995. He was perfect; ten toes, ten fingers, and a hearty appetite. His development was on target. At the time, our biggest concern was an occasional sniffle.

Our world came to a crashing halt one dark, dreary fall day in 1998 when Fletcher was only 3 years old. He was watching his favorite cartoon and we heard this strange groan and thump. When I peeked in, he had fallen off the couch and was convulsing. I had never seen anything so horrific in my life. His color went blue, his body was violently jerking, he was incontinent, his eyes were rolling, saliva and vomit erupted from his mouth. I frantically dialed 911. Little did I realize then that this would be the beginning of many ambulance rides and hospitalizations to come.

He stayed in the hospital for several days. The doctors really couldn't give us any reason or explanation for this event. They even reassured us that it was probably a fluke and would never happen again. This was the beginning of a very long, difficult road.

For a while I believed them. I had to believe them, I needed to believe them. Until it happened again. Then it happened again. At this point we started the medicine roulette game. The anti-seizure medicines are very potent to a little body. The object of the game was to gain seizure control with minimal side effects. Easier said than done. The roller coaster of med trials included lots of trial and error, mostly error. Fletcher has a hard time tolerating these medicines. He has been through 11 different seizure drugs. They have caused him excessive nausea, vomiting, diarrhea, weight gain, weight loss, overgrown gums, unsightly hair growth, rashes, drowsiness, lethargy, mood swings, drooling, and incontinence.

As a result of all this, he has lost his self esteem and is very anxious to go out in public. He doesn't want people to make fun of him, or laugh when he drools or drops from a seizure. I think the social aspects are just as difficult to manage as the medical issues. He is in counseling to try and work through this anxiety.

At the height of Fletcher's battle with uncontrolled seizures, he was literally having 100's of seizures per day. He has three types of seizures: absence (staring), myoclonic (single, brief jerks), and the tonic-clonic (Grand Mal). He was taking 20 pills a day and it didn't even touch them. He ended up in the hospital in status epilepticus. That is a medical emergency of a non-stop continuous seizure state lasting over 30 minutes.

Today Fletcher's seizures are somewhat better controlled with the help of the Vagal Nerve Stimulator. 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. The very cool part of the whole thing is the magnet. Fletcher wears a bracelet that is actually a very strong magnet, every day, everywhere he goes. When he feels a seizure coming on or we see the seizure starting we simply swipe the magnet over his chest implant. It then sends an extra burst of stimulation to his brain and sometimes will stop the seizure cold, more often though, it will shorten the duration of the seizure. A typical tonic-clonic for Fletcher used to be 15 minutes, now it's down to less than 3 minutes. The magnet is such a huge blessing to him and us. It has given him a sense of control over these seizures. For us, it has almost eliminated the need for the most invasive medicine that he required. When he goes into a prolonged seizure, we ordinarily have to administer rectal Diastat (Valium), which is very humbling to say the least.

Although you may never actually get to meet Fletcher, I want you to know that he is the coolest, kindest, sweetest child I know. He never has complained once about anything. He has a smile that can light up the NY skyline all by himself. He is very shy and quiet, but don't let that fool you. He has very keen insight. He struggles in school between seizures, drug side effects, and anxiety. However, he tries really hard and never gives up. I have learned a lot from Fletcher.