By Rebecca Feldhaus
http://stream.publicbroadcasting.net/production/mp3/wkms/local-wkms-920736.mp3
Benton, KY – Seventeen lawnmowers lined the dirt track at Benton's H.H. Lovett Park last Saturday. An estimated 300 people showed up in the blazing heat and humidity to support Caleb Baker. He was born a healthy 9-pound-baby. His mother, Beth, says he was a normal, rambunctious little boy. Then, when he was a toddler, his parents began noticing that he was more stubborn than most kids his age. At three, Caleb was diagnosed with a kind of autism called Pervasive Developmental Disorder, Not Otherwise Specified. Beth explains how the family dealt with the news.
"At first, when you think you have a healthy kid, and then you realize they have autism, you grieve that child that you thought you had that was going to have all those possibilities."
So the family took the disorder in stride and did what they thought was best for Caleb. His Aunt, Ellen Harris explains their plan of action.
"With the autism, he was able to use picture-card exchange program, OT, speech, physical therapy, and those programs seemed to help quite a bit, he got to where he could talk in full sentences again, because he had lost that ability."
Caleb became a very successful preschooler. However, more trouble was ahead for the young boy. On Independence Day in 2006, Caleb had a noticeable seizure, and was flown to Kosair Children's Hospital in Louisville. Doctors there diagnosed him with Epilepsy. Over the next four years Caleb regressed mentally and physically. He lost muscular and mental abilities. He now has between 30 and 100 seizures a day. He is in specialized wheelchair to hold him up, because his muscles won't do it for him anymore. Beth, says she handles some battles better than others.
"When he lost his speech, that has probably been the most traumatic for me, as a mom. I can remember the day he said Mommy' last. So that's really hard for me."
Now Caleb needs constant attention. Beth says Caleb is very volatile. Any normal day in a matter of moments could turn into a trip to Vanderbilt Hospital.
Caleb's neurologist and associate director of the pediatric epilepsy monitoring program at Vanderbilt, Dr. Gregory Barnes, sees Caleb a minimum of once every three months. And Barnes is in constant contact with Caleb's mother via email. In his 13 years in practice, Barnes has seen maybe three or four other children with the severity of Caleb's disorder. He says, it's close to a one in 10,000 probability.
Dr. Carter Snead is the head of the division of neurology of the Hospital for Sick Kids in Toronto. He has done research to pinpoint the causation of a troubling correlation.
"Basically nobody understands why children with autism are so pre-disposed to epilepsy. Because 10-15 percent of kids with autism will have epilepsy. That's compared with less than one percent of the general population."
Caleb is unique. Because his brain developed abnormally, he was already at high risk for epilepsy. As one part of treatment, he is on a special fat heavy diet. He also had a Vegas Nerve Stimulator implanted, which cuts down on seizures, but as Barnes explains, there's no easy fix. He calls it Severe Symptomatic Generalized Epilepsy.
"In this particular sub-group of patients, it's very, very difficult to treat the seizures as we've found out for him. But that's the best diagnostic definition that you can give to what Caleb actually has."
Barnes says there is nothing Caleb's parents could have done to prevent the malformation, because autism is caused by a change in genes. In some epilepsy cases, a hemispherectomy, or removal of some of the brain is a possibility. Beth Baker explains.
"We really prayed for that, and most people don't pray for brain surgery for their kids, but this was going to be something that could really potentially help him. Turned out that both sides of his frontal lobes are completely affected. So even if they removed one side, he would be left with one side that was still diseased."
Dr. Barnes says at this point, they've reached the end of their immediate possibilities. Though new medical technology, as well as pharmaceuticals, are approved every day.
The Baker family is optimistic. They say because of their faith in God and family, and community support. The demolition derby raised about $6,000 for Caleb's skyrocketing medical bills. Specifically these proceeds go toward the PET scan that determined he was not eligible for brain surgery.