2 University Ave. Construction Alert
2 Breaking New Ground in Duchenne Muscular Dystrophy Research
3 Summer Safety Tips
4 Walk and Roll Success
SUMMER 2016
Small Changes to Improve Epilepsy
Management
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.
Heather Naylor, a pediatric
nurse practitioner, checks
Landon’s neurological signs
during a follow-up visit to
the First Seizure Clinic.
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• 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.
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.
Focus
on What’s New at Gillette
Major University Avenue Construction Will Affect
St. Paul Campus
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.
Breaking Ground in Duchenne Muscular Dystrophy Research
“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 Stephen Smith, M.D., pediatric
neurologist at Gillette Children’s
dystrophin as acting like a coiled spring or a shock absorber for muscles.
Specialty Healthcare.
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.
2
Avoid These Safety Hazards
Mark Your
Calendar
Summer 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.
Miracle Treat Day
July 28
Participating Dairy Queens
“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.”
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!
Start the Summer Right:
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.
Preparing for Your Child’s Upcoming Orthopedic
Surgery
September 17, 2016
1 to 3 p.m.
Gillette Children’s Specialty Healthcare main campus in St. Paul
200 University Avenue East
St. 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:
[email protected] or 651-312-3198.
18th Annual Ryan,
Shannon & Fish’s KS95
for Kids Radiothon
December 9, 2016
Mall of America
Bloomington, 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.
For any serious injuries, parents should immediately take their child to the
emergency room or call 911.
Parent-to-Parent Support for Families
Sometimes, 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.)
3
SUMMER 2016
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200 University Ave. E.
St. Paul, MN 55101
651-291-2848
www.gillettechildrens.org
CHANGE SERVICE
REQUESTED
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.
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.
First Ever Walk and Roll for
Gillette Families
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.
Nonprofit
Organization
U.S. Postage
P A I D
Twin Cities, MN
Permit No. 5388