KidPower

Diagnosis Leads Family to Help Others Explore Treatments

By Marcia Daeges

The Chanute Tribune

Seven-year-old Kyle Hernandez runs, jumps, laughs and, on occasion, talks non-stop - all things doctors said he might never do.

Kyle was diagnosed at 10 months with mild right hemiplegic cerebral palsy and a seizure disorder. His mother, April, said he suffered a stroke in utero.

"Doctors told (my husband Victor and I) it probably happened in the seventh or eight month while I was carrying him," she said. "After he was born, we did not notice right away there was something wrong."

April said they noticed when Kyle was three-months-old, he was not using his right hand and that it was always balled into a fist.

"He wasn't grabbing toys or using his right hand at all," she said. "I knew something wasn't quite right, but I thought he would outgrow it ."

She mentioned this to doctor during Kyle's routine nine-month check-up.

After a series of tests, the doctor gave the Hernandezes his diagnosis - cerebral palsy.

April said neurologists ordered an MRI to check for brain damage, something routinely performed on stoke victims.

"The MRI results confirmed there was 15-20 percent brain damage on the left side of his brain," April said. "This resulted from the stroke, which cut off blood supply to his brain."

April said she and Victor never thought of Kyle's condition as a tragedy, but knew it would be a challenge.

"I knew things could be much worse," she said. "Kyle was already beginning to talk, so I knew he was mildly affected. We also knew there would be therapies that would aid in helping him develop in the areas he needed help with.

Kyle began physical and occupational therapy at 11 months. April said the therapy was good, but she was curious to learn more and explore other options for her son.

"I was very pleased with what we were getting at the time," she said, "but when Kyle was 15-months-old, he started having seizures, eight days after he had his routine MMR vaccination. So I became more curious to find more information on CP."

She bought a computer in order to find information on the Internet.

"While researching, I would read everything I could about CP and people who were only mildly affected," she said. "I was excited to learn about several therapies that could help Kyle progress to his highest potential. These therapies seemed to show higher success rates than the traditional ones. From talking to other parents and their success with these therapies, I knew I had to learn more."

April decided to create a Web page, with a link for others to join a support group.

"Although I had found several sites containing information and therapies for cerebral palsy, none were really relevant to our situation," she said. "So I decided to put together a Web page. I was very computer-illiterate, but I was determined to get it done."

She said that after one month the online support group had enough members for e-mails to begin coming through.

"I knew there had to be others out there in similar situations as we were," she said. "By the end of our first year, we had about 130 members and 40 pages of information."

April said it became apparent from letters of parents whose children were mildly affected that they were having a hard time getting a diagnosis and necessary services. She also knew not everyone had access to a computer to get the information. That is when she started the non-profit organization KidPower Family Support Resource.

"I wanted to reach as many people as I could, so I could share with them some of the nontraditional therapies and treatments," she said. "Myself, two other moms, one grandparent and an individual with a disability formed the non-profit 501(c)(3) organization."

The long hours and efforts have paid off. To date, the organization provides support nationwide and in Canada.

"The online support group consists of 185 members," she said. "They have access to listings of doctors, equipment recommendations, summer camps for special needs, alternative therapies and other topics."

April said some alternative treatments included on the site and in mailouts are auditory integration therapy, hyperbaric oxygen therapy, therapeutic electrical stimulation, therapeutic horseback riding and EEG biofeedback.

"These therapies and treatments have not been approved by the FDA because there has not been enough testing and scientific findings to back up the success of them," she said. "But who knows best? I think people trust others who have had the success with the treatments."

For the Hernandezes, these treatments have proven successful for Kyle and will hopefully end the use of medications.

"We have found by using the therapeutic electrical stimulation, hyperbaric oxygen treatment and horseback riding, along with his regular occupational and physical therapy, we have seen a vast improvement," she said. "We hope, by using some of these treatments, eventually Kyle will not have to use medication for his seizures."

April explained that hyperbaric oxygen therapy is 100 percent oxygen delivered under pressure in a pressurized vessel. The therapy is thought to decrease spastic muscle movements, increase trunk control, reduce seizure activity and increase processing skills.

"This therapy is supposed to restore blood flow to areas of the brain where cells have been laying dormant around the area where cells that have died," April said. "Kyle has had 75 treatments, and we have seen an increase in his gross and fine motor skills."

KidPower Family Resource incorporated in September 1999 and was granted tax exemption from the IRS in January 2000.

April said the organization plans to offer grants to help qualified families with expenses. She said the grants will help pay for equipment and therapy when insurance and Medicaid will not reimburse the family.

"The only requirements we have for these families to receive a monetary grant is their child must be mildly affected and they were denied and are not receiving SSI," she said.

April said she wants to help others who are experiencing some of the same things she and Victor did when Kyle was diagnosed.

"We are very fortunate to have family support," she said. "Without their help, we would not have been able to do all the things we have."

The KidPower Family Support Resource Inc. Web site can be found at http:/www.kid-power.org

Published Tuesday 5-23-2000 in Salina Journal
Published Saturday 5-20-2000 in The Chanute Tribune