Small changes can improve the wellness of people who have epilepsy according to the neurology team at Gillette Children’s Specialty Healthcare.

People who have epilepsy can modify some of their behaviors in order to gain better management over the disorder. The neurology team recommends four areas of focus:

• Sleep Well: Children who sleep poorly are more likely to have issues with obesity, learning and epilepsy control. A regular bedtime routine and freedom from electronic devices (tablets/cell phones) at bedtime can help. If falling asleep is an issue, melatonin may be an option. Melatonin is naturally made by the body and taking it can help with regulation of circadian rhythms. It’s wise to check with your own doctor before taking any supplements or medication.

• Minimize Stress/Maximize Coping Skills: Research shows there’s a connection between acute stress and seizures. Coping mechanisms develop over time in children, and coping with a chronic medical issue like epilepsy may require coaching from a counselor.

• Be Informed About Medications: Different medications can have varying side effects that can impact mood, learning and epilepsy symptoms. Seizure medications have many side effects that can be unpleasant. Medications used to manage other health concerns (stimulants and certain antibiotics) can affect epilepsy and seizure medication success.

• Plan Ahead/Protect Wellness: Planning ahead helps improve overall wellness if an emergency might occur. Medical bracelets for children and adults can be helpful to quickly provide important medical information.

Epilepsy is the fourth most common neurological disorder and there are 3 million people in the U.S who have it, according to the Epilepsy Foundation. This chronic condition is characterized by recurring and unprovoked seizures. A seizure is an abnormal electrical discharge in brain cells that causes a change in normal activity, behavior or movement.

Gillette neurologists say it’s important for a child’s neurology team to focus on treating the whole child—not just the seizures. Families and neurologists should work as a team to provide the most effective management and care for children who have epilepsy.

2 University Ave. Construction Alert2 Breaking New Ground in Duchenne Muscular Dystrophy Research3 Summer Safety Tips4 Walk and Roll Success

Heather Naylor, a pediatric nurse practitioner, checks Landon’s neurological signs during a follow-up visit to the First Seizure Clinic.

See Us Online!Visit our website at gillettechildrens.org

SUMMER 2016A NEWSLETTER FOR

GILLETTE PATIENTS AND FAMILIES

Small Changes to Improve Epilepsy Management

The Epilepsy Foundation of Minnesota is hosting a first-ever camp for youth who have seizures. It’s being held at Camp Butwin in Eagan, Minnesota. Youth (ages 9-17) can attend camp on July 28 from 9:30 a.m. to 4:30 p.m. Special medical care, on-site nursing and handicap access makes this camp accessible. Campers can enjoy crafts, horseback riding, sports, rock climbing and team building.

Apply at efmn.org or call 800-779-0777.

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on What’s New at GilletteFocusFocus

Summer in Minnesota means mosquitos and road construction. So it shouldn’t come as much of a surprise to see detours and orange cones near the St. Paul campus of Gillette Children’s Specialty Healthcare.

The City of St. Paul’s Department of Public Works is reconstructing University Avenue between Robert Street and Twelfth Street this summer. The project includes new curb and pavement, lantern-style lighting, ADA compliant pedestrian ramps and the addition of a pedestrian/bicycle path. The city estimates the construction will end in the fall of 2016.

The van/cab/pedestrian drop off at 200 University Avenue will be temporarily closed as the construction crews work on the south side of University Avenue. During this phase of road construction, vans and cabs dropping off patients should use the Regions Hospital west entrance along Jackson Street.

Please allow extra time to travel to Gillette or consider making an appointment at one of our other clinic sites. You can check the City of St. Paul website regularly for road construction updates. For a list of Gillette clinics, visit gillettechildrens.org/locations.

“Now is a very exciting time! Promising new research is underway for the treatment of muscular dystrophy,” says Stephen Smith, M.D., pediatric neurologist at Gillette Children’s Specialty Healthcare.

Smith is encouraged by research being done by three teams working on a “gene editing” technique that’s seen as a major step toward a possible treatment for Duchenne muscular dystrophy.

The new gene therapy technique is known as Crispr-Cas9 and has the potential to allow researchers to cure a genetic disease by inserting the correct gene into damaged cells. The research teams worked independently and each loaded the DNA-cutting system onto a virus. The virus was put into the infected muscle cells of a mouse and it essentially took out the defective part of DNA in a gene.

“This is really high-powered genetic manipulation,” Smith says. “You have this virus and you can, in a sense, program it to go into the DNA and literally snip out the piece that’s not correct.”

Duchenne muscular dystrophy is caused by a mutation in the gene responsible for producing dystrophin, an essential protein involved in muscle function. Some in the medical field characterize dystrophin as acting like a coiled spring or a shock absorber for muscles.

Duchenne muscular dystrophy is inherited on the X chromosome and the gene is carried by women, but usually doesn’t cause problems in girls or women. It’s a progressive muscle-wasting disease that affects about 15,000 Americans, usually boys.

Research teams from Harvard, the University of Texas Southwestern Medical Center, and Duke University recently published studies in medical journals detailing their gene editing success in mice.

Smith says all of the new research should be encouraging to patients who have muscular dystrophy and their families. “The Muscular Dystrophy Association and Jerry Lewis—when he would run the telethon—instilled this concept of ‘We will find a cure.’ We need to find a way to cure the disease and make it go away. Crispr-Cas9 may be the cure,” Smith says.

For more information about Smith and Neurology at Gillette, please go to gillettechildrens.org/DMD.

Major University Avenue Construction Will Affect St. Paul Campus

Breaking Ground in Duchenne Muscular Dystrophy Research

Stephen Smith, M.D., pediatric neurologist at Gillette Children’s Specialty Healthcare.

Start the Summer Right:Avoid These Safety HazardsSummer safety for children goes beyond sunscreen and bug spray. Some simple tips and vigilance from parents can keep outdoor activities safe—and kids out of the emergency room.

“Summer is the busiest time of year for our trauma center,” says Michael McGonigal, M.D., director of Trauma Services at Regions Hospital. “The good news is that the vast majority of these injuries are preventable.”

Regions Hospital and Gillette Children’s Specialty Healthcare collaborate to provide Minnesota’s first Level I Pediatric Trauma Center. McGonigal says the following activities regularly land children in the hospital, and he offers tips to prevent injuries:

• Water safety: Piloting a boat isn’t like driving a car. There aren’t lanes and you can’t assume people are looking out for you. Keep your eyes peeled for other boaters, jet skis, swimmers and people dragging tubers. Never consume alcohol while boating or during water recreation. Among adolescents and adults, alcohol use is involved in up to 70 percent of deaths associated with water recreation, according to the Centers for Disease Control and Prevention. Most important, children should always wear life jackets.

• Burns: Don’t assume a fire pit is cool—even the morning after a campfire. Seemingly cool logs can cause third-degree burns and ignite flammables like gasoline. Never let kids or pets wander over an open fire pit—even if it appears as if embers are cool and grey. Each year, Regions Hospital Burn Center sees an average of 10 children with serious campfire burns.

• Fireworks are dangerous. Period. Even sparklers can cause burns and blindness. Mishaps with larger fireworks can end in loss of fingers, toes, limbs and even life. Nationally, more than half of firework injuries happen to children younger than 19.

• Lawnmowers and kids don’t mix. Both riding and push mowers can cause serious injuries. The dangers of a spinning blade are obvious, but kids can be seriously hurt falling off riding mowers as well. Keep young children inside while mowing. Children should be at least 12 years old before operating a push mower and at least 16 before operating a riding mower.

• Trampolines are a common cause of summertime injuries. In addition to broken bones, fractures and sprains, kids can sustain serious head and spinal trauma. If trampoline use is unavoidable, install safety netting around the trampoline and cover its frame, springs and nearby landing surfaces with shock-absorbing pads.

For any serious injuries, parents should immediately take their child to the emergency room or call 911.

Mark Your CalendarMiracle Treat DayJuly 28Participating Dairy Queens

On Miracle Treat Day, $1 or more from every Blizzard® Treat sold will be donated from participating Dairy Queen locations to your local Children’s Miracle Network Hospital. In Minnesota and western Wisconsin, the Children’s Miracle Network hospital is Gillette!

Preparing for Your Child’s Upcoming Orthopedic SurgerySeptember 17, 20161 to 3 p.m.Gillette Children’s Specialty Healthcare main campus in St. Paul200 University Avenue EastSt. Paul, MN 55101

Learn about the recovery process after a child has a single event multilevel surgery (SEMLS) by attending an upcoming class at the Gillette main campus in St. Paul. The “Preparing for Your Child’s Upcoming Orthopedic Surgery” class is interactive. Please RSVP at least one week before the class via email or phone: PreopClasses@gillettechildrens.com or 651-312-3198.

18th Annual Ryan, Shannon & Fish’s KS95 for Kids RadiothonDecember 9, 2016Mall of AmericaBloomington, MN

Join KS95 hosts Ryan, Shannon and Fish during their live broadcast at the Mall of America to help raise money for Gillette Children’s Specialty Healthcare and Children’s Cancer Research Fund.

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Parent-to-Parent Support for FamiliesSometimes, the best resources and support for parents can come from other parents who have similar life experiences. It’s often helpful to talk to people who know, firsthand, the challenges and joys of raising a child who has a disability or special health need.

With this in mind, Gillette is expanding its partnership with Family Voices, a nonprofit organization that matches parents with other parent volunteers who have received special support training.

To find out more, please go to familyvoicesofminnesota.org. You can also call 866-334-8444 (toll-free.)

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SUMMER 2016 200 University Ave. E.St. Paul, MN 55101651-291-2848www.gillettechildrens.org

Gillette Children’s Specialty Healthcare is named in honor of orthopedic surgeon Arthur Gillette, M.D., who helped found the nation’s first hospital for children who have disabilities. We are an independent, not-for-profit children’s hospital, and our organization has no affiliation with the Gillette Company or the Gillette brand of personal care products.

First Ever Walk and Roll for Gillette Families

Need to Make an Appointment?

Call your Patient Access team. If you don’t know the direct number, call 651-290-8707 or 800-719-4040 (toll free). Select your preferred language and press option 6.

More than 300 people came out on June 18 for the inaugural Friends of Gillette Walk and Roll 3K Family Fun Walk that raised more than $32,000 for Gillette Children’s Specialty Healthcare.

Eight-year-old Maddy Lavalier was the Gillette ambassador and led the energetic group of walkers and rollers for a trip around Lake Como in St. Paul, Minnesota.

Maddy’s mom, Rachelle Lavalier, says her daughter received care at Gillette even before she was born. When Lavalier was 20 weeks pregnant with Maddy, a medical exam showed that Maddy had spina bifida, organs outside the body and clubfoot. Years of medical care at Gillette have helped Maddy to become an outgoing third grader.

Walk and Roll was organized by the Friends of Gillette—a volunteer group dedicated to supporting Gillette. Since forming in 1985, the Friends of Gillette has given more than $4.5 million to Gillette through fundraising activities and individual contributions.

The Friends of Gillette organizers are pleased with the first-ever Walk and Roll and hope even more families will participate in the event next year.