Saturday, March 29, 2008

Boy with rare form of Epilepsy in dire need of service dog

Christopher Mull made eye contact with his father before pushing his new Tinker Toy creation aside.

The 3-year-old Salisbury resident, wearing a green polo on Wednesday, was diagnosed with Dravet Syndrome -- a rare form of epilepsy -- in December, which is currently incurable.

"Christopher's been having seizures since he was 10 weeks old," said his mother, Karen Mull, who watched her husband, Kevin, follow their son into the other room. "He used to have as many as 150 seizures a day."

In May, the Mull Family will hold a "Courageous Christopher 5K -- run/walk and stroller strut" to raise awareness about Dravet Syndrome and obtain funding to purchase a seizure response dog, through the 4 Paws For Ability organization.

Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a progressive childhood neurodevelopmental disorder characterized by severe epilepsy that does not respond well to treatment, according to the International Dravet Syndrome Epilepsy Action League. Research estimates the prevalence of this rare disorder has ranged from 1:20,000 to 1:40,000 births.

Mull's life has consisted of multiple seizures, emergency room visits, hospital stays, failed medications, respiratory failure after seizures, a month in the hospital facing near death, the ketogenic diet -- high fat, adequate protein, low carbohydrate meal plan-- and six different neurologists, said Karen, a physician's assistant for Peninsula Regional Medical Center.

"Christopher will want to play with his brothers in the other room while I'm cooking dinner in the kitchen," Karen said. "But he needs to be in there with me in case he has a seizure."

The seizure response dog will help alert Mull's parents to seizure activity, assist him with his balance, and provide emotional support when needed.

"We must raise $11,000 to pay for the cost for the training and placement of this service dog into our home," Karen said.

Seizure response dogs are allowed to go everywhere the child goes as long as an adult team member -- Mull's father, Kevin -- is trained to handle the dog.

Seizure response dogs can also provide a measure of comfort by providing a distraction during unpleasant medical procedures, such as blood tests. Seizure medications can cause behavioral and balance issues for the child.

All 4 Paws dogs are trained in behavior disruption, which allows the parents to give the dog a command to interact with the child. They also can support the child by wearing a harness they can hold onto to stabilize themselves, Karen said.

Dog owner parents have reported their child having fewer seizures since the dog entered their home, according to the 4 Paws organization. This is believed to be the result of a reduction in the child's stress level through the comfort they find in their new companions.

Other parents have reported the dog becomes stressed, wines, or barks when their child has seizures. This is not something the dog is trained to do, but a response they make on their own.
"We keep a baby monitor on at night to listen if Christopher has a seizure," Karen said. "But we worry we might not be able to hear him -- the dog will be able to pull the pillows and blankets away."
For a significant number of children with Dravet Syndrome, secondary problems include sleep disturbance, slowed physical growth, movement and orthopedic disorders. However, despite being at increased risk for accidents and infection, an individual with Dravet Syndrome has an 85 percent chance of surviving into adulthood, says the International Dravet Syndrome Epilepsy Action League.

"Christopher was diagnosed at a relatively young age," said Kevin, a Peninsula Orthopedic physician's assistant. "Some of these children and families go years and years without finding an answer -- because it is so rare."

Once the Mulls achieve their fundraising goal of $11,000, they will go to Ohio for a two-week training session with their new companion.

The new dog will be matched to suit the entire family, which includes three other children, Connor, 7, Casey, 5, and Catherine "Callie", 1, and dog, Molly.

"Christopher doesn't know he's getting the new dog," Karen said. "But he loves them -- whenever you mention 'dog' he'll stick out his tongue."

The child's behavior shows little indication his illness has affected his happiness.

"He greets every passerby with a big 'hi' and anxiously awaits their returned response," Karen said. "He runs with open arms and a huge smile to greet anyone who comes to the house and Kevin and I as we come home from work."


Post a Comment

<< Home