Sunday, April 15, 2007

Vaccination linked to seizure disorder!

As a baby, Cory Wiltse got a bad vaccination that left him severely disabled.

Now 17, he has the cognitive ability of a 3 or 4 year old. There are days when he's feeling fine and others when he becomes a combative "gorilla," dad Chris Wiltse said, or all he can say is "Cork sickin'" — signaling to caregivers that a seizure is about to rip through his system.

Cory takes eight medications every six hours, and two more as needed to control the seizures that deteriorate his body and mind. His mother, Tani, wakes at 5:30 a.m. to crush the first round of pills. His father stays up until midnight to give him his last dose of the day.

Cory's younger brother, Tyler, is a 16-year-old athlete and honors student. Cory, however, needs constant supervision. His parents pray that each seizure will not be his last.

Chris and Tani Wiltse, both 43, have fought with the state for years over Cory's care. After losing their latest battle in February, the Battle Creek couple is trying to find how best to care for their son.
Cory was healthy at birth, but after his first DTP vaccination, the "very next day he's screaming with a high-pitched fever," Tani Wiltse said.

His first seizure came five days later.

His parents suspected the shot Cory got from his pediatrician in Grand Rapids, where the family lived in 1989. The doctor disagreed.

Statistically, one out of every 1 million doses of the vaccination against diphtheria, tetanus and pertussis, also known as whooping cough, will cause severe complications. They include long-term seizures, coma, permanent brain damage or death, according the U.S. Centers for Disease Control and Prevention.

Because a severe reaction is so rare, the agency reports, it is difficult to tell if the problem stemmed from the vaccine.

At least two other children who received the same batch of DTP vaccines had severe reactions, the Wiltses said.

The Washington-based National Vaccine Injury Compensation Program was created by the federal government in 1988 to help pay for the care of those who have been harmed by vaccines.
"That would take care of Cory for the rest of his life," Tani Wiltse said.

But the Wiltses didn't know about the program until after Cory's brain surgery in 1993. They spent the first four years of Cory's life traveling around the country looking for a cure for his intensifying seizures.

Although insurance covered 80 percent of their medical bills, the Wiltses said they took out a $60,000 loan to pay the rest.

At the Children's Hospital of Michigan in Detroit, a surgeon removed from 4-year-old Cory's brain a portion the size of a "peach pit," Chris Wiltse said. The procedure reduced the length of Cory's seizures from 1 hour to 5 minutes and cut the number from more than 100 per month to between 40 and 60 per month.

Laboratory analysis on the brain portion removed revealed his brain had been traumatized when Cory was 8 weeks old — the same age he got the vaccine. With that evidence, the Wiltses applied for assistance through the National Vaccine Injury Compensation Program.

But they missed the 36-month post-injury deadline.

Tani Wiltse and other family members cared for Cory at home until 1998, when he was approved for private-duty nursing paid through the Michigan Department of Community Health.

An on-call registered nurse provided medical care at home, reducing Cory's hospital and emergency room visits by 91 percent, the Wiltses said. The at-home care also allowed Cory to be discharged from the hospital sooner.

But in November, the department said Cory no longer fit the criteria for private-duty nursing through the Children's Waiver Program, which provides Medicaid to Cory even though his parents don't qualify. Their income is too high.

Chris Wiltse is a sales manager for an automotive recycling company near Lansing and Tani Wiltse works part-time as a medical referral specialist.

"If that person does not need that care, then we cannot pay for nurses that that individual person does not need," said Sheri Falvay, director of the department's Mental Health Services to Children and Families.

Private-duty nursing is the most expensive offered, she said, adding Cory was "on the cusp all along" of qualifying.

"No one is denying that Cory needs services and he can get it through an aide," Falvay said.
The state plans to replace his registered nurse with a community-living support aide after June 28.
Angila McEwen is a licensed practical nurse and pediatric care coordinator for Lakeshore Home Health Care Services Inc. Battle Creek, which provides nursing care for Cory. McEwan said she has been searching for an aide qualified to care for Cory, but has not found one yet.

Lakeshore would train an aide for Cory's complicated needs. He takes 1,035 pills a month, mostly anticonvulsants, that must be crushed and given by oral syringe. He has been diagnosed with seizure disorder, cerebral palsy, mental retardation, rickets, hypothyroidism and autism.

"He needs a lot of supervision. He has behavioral issues," McEwen said. "I think it'll be very hard to find someone who would work at that wage."

On average, a community living support aide is paid $9 per hour through Lakeshore Home Health Care Services, McEwen said. A registered nurse is paid $21 per hour.

There is no minimum medical education required to be an aide. A registered nurse has at least an associate's degree in nursing.

Summit Pointe, Calhoun County's community mental health agency, backed the Wiltses while they appealed the ruling at an administrative hearing on Feb. 1 in Battle Creek.

In Michigan in 2006, there were three requests for hearings involving private-duty nursing, Falvay said. Of those, one was withdrawn, and the department's decision was upheld in the other two.
The administrative law judge upheld the state's decision to replace Cory's nurse with an aide, and the Wiltses are unsure if it's worth the money and stress to take the matter to court.

"Once the state rules, it rules," Chris Wiltse said. "From the legal opinions that I could get, it was throwing good money against the bad."

Tani Wiltse said she would quit her job to stay home with Cory and make sure he got the care he needed.

"Cory comes first," she said. "Nothing ever comes before your children."

Such a sad story. But, Cory's parents are so loving and giving him the proper care he needs. Vaccines are so important keep from getting debilitating or deadly diseases, his situation is so rare. I know a few people who don't get their children vaccinated for this reason. But in truth, the advantages way outweigh the risks. Thank you, Mr. and Mrs. Wiltse, for being role model parents for Cory. You're both great.

Vaccine facts

Pertussis, also called whooping cough, can make eating, drinking and breathing difficult for infants for many weeks. It can lead to pneumonia, seizures, brain damage or death.

One dose of DTaP vaccine for diphtheria, tetanus and pertussis should be given five times at 2 months; 4 months; 6 months; 15 to 18 months; and 4 to 6 years.

Immunization is required for school entry in Michigan, but can be waived with signed parental permission. Children without pertussis immunization may be not be allowed to come to school if an outbreak occured.

DTaP is a safer version of the older vaccine called DTP, which is no longer used in the United States.

The pertussis vaccine in DTaP is only licensed for children younger than 7.

Reactions to the vaccine:

About 1 in 4 children will have a mild reaction, such as a fever or redness and soreness where the shot was given. It most often occurs after the fourth or fifth dose.

One in every 1,000 children will have nonstop crying for three hours or more. One in 14,000 will have seizures. One in 16,000 will have a fever more than 105 degrees.

Less than 1 in 1 million children will have serious allergic reactions, including long-term seizures, coma, lowered consciousness or permanent brain damage.

What to do for a severe reaction:

Get the person to a doctor immediately.

Tell the doctor when the vaccination was given and when the reaction occurred.
File a Vaccine Adverse Event Reporting System form with your physician, nurse or health department, or call 800-822-7967.

Ask about the National Vaccine Injury Compensation Program for children who have had serious reactions by calling 800-338-2382 or go to U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, National Immunization Program, Vaccine Information Statement, DTaP.


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