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CHILDREN’S
HANDPRINTS
A PUBLICATION OF UCSF BENIOFF CHILDREN’S HOSPITAL OAKLAND
Are you overmedicating
your child?
Children’s Director of Pharmacy Services
explains the safest way to administer overthe-counter medications to your children.
CAN YOU EAT YOUR WAY TO OPTIMUM
HEALTH? YES! Children’s senior scientist
says there are five key minerals that are
essential to our diet.
SPRING 2015
childrenshospitaloakland.org
2401 Shadelands Dr.
Walnut Creek, CA 94598
925-979-3434
HEARING & SPEECH
CENTER
SPORTS MEDICINE
CENTER FOR
YOUNG ATHLETES
OUTPATIENT
SURGERY
SLEEP
LAB
MOTION ANALYSIS
& SPORTS
PERFORMANCE LAB
DIAGNOSTIC
IMAGING
.
1
BENICIA
T
EA
VD
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NO
IO
LEY
VAL
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RD
WALNUT
YG
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AC
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AN
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AD
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Walnut Creek
SPECIALTY CARE
CLINICS
PLEASANTON
5
UCSF Benioff Children’s Hospitals Walnut Creek
Campus is Contra Costa County’s only outpatient
medical center just for kids.
Our Walnut Creek location houses the latest
technology and services for pediatric care. All care is
provided by physicians who are members of Children’s
attending physician staff.
UCSF BENIOFF CHILDREN’S HOSPITALS
WALNUT CREEK CAMPUS
2401 Shadelands Dr.
Walnut Creek, CA 94598
(Cross street is Lennon Ln.)
www.childrenshospitaloakland.org
Table of Contents
6
13
Children and
Headaches
“I Think It’s Magic
What They Can Do!”
Learn how to diagnose, treat,
and prevent chronic headaches.
Written by Children’s Neurology
Department.
Mom credits Children’s Rehabilitation
Medicine with baby Jaxon’s
remarkable recovery after his neardrowning accident. Written by Susie
Caragol.
5
A WORD FROM D R. LUBI N,
PRE SIDE NT & CEO
10
7
ASK AN E XPE R T
Pediatric surgeon Wolfgang Stehr,
MD, addresses what to do when
your child swallows something he
shouldn’t.
12
Pediatric gastroenterologist Vivien
Nguyen, MD, advises on how to
address and avoid a visitor’s allergic
reaction to food you serve.
8
THING S TO DO
St. Baldrick’s Head Shaving
Fundraiser
Children’s Health Guild “Rock the
Casbah” Gala
Sports Medicine Career Workshop
for High School Students
9
KIDS CORNE R
Logic Puzzle #12
16
RE S E A R C H U PDAT E
Eat Your Minerals for Optimum
Health
Dr. Killilea charts out five minerals
that are essential to our diet. Written
by David Killilea, PhD.
F OO D CO R N E R
Vegetable Soup
Cherry Almond Chocolate Clusters
Written by Children’s Clinical
Nutrition department.
Q&A
Parents Can Make Medication Errors
on Their Children
Children’s Director of Pharmacy
Patrick D. Fleming, Jr., PharmD,
addresses errors parents make when
giving over-the-counter medication
to their children.
18
Tumors Associated
with Genetic Disorder
Cause Seizures for
Young Patients
Parents find their medical home at
Children’s Oakland for treating their
child’s tuberous sclerosis. Written by
Susie Caragol.
17
R E S E A R C H ST U D IE S
Calcium Absorption in Pregnancy
Diet Study
Cholesterol Research Center Diet
Study
21
CHILDREN’S HOSPITALS
UCSF Benioff Children’s Hospitals
Begin New Era of Innovation
22
G IV IN G B AC K
Miss America 2015 visits patients
at UCSF Benioff Children’s Hospital
Oakland
Become a member of our Miracle
Family Program
Foundation Launches New Website
CHILDREN’S
HANDPRINTS
Children’s HandPrints is a publication of
UCSF Benioff Children’s Hospital Oakland,
747 52nd Street, Oakland, CA 94609;
510-428-3000.
Bertram Lubin, MD
President and Chief Executive Officer
Marketing Communications Department
Cynthia Chiarappa
Vice President, Strategy
Tina Amey
Administrative Assistant
Debbie Dare
Creative Marketing Director
Kevin Kimbrough
Marketing Manager
Melinda Krigel
Media Relations Manager
Michele Repine
Internet Marketing Director
Erika Sandstrom
Senior Graphic Designer
Stephen Lowry
Communications Intern
Contributing Writers
Susie Caragol
Children’s Neurology Department
Children’s Clinical Nutrition Department
Jackie Kersh
David Killilea, PhD
Vivien Nguyen, MD
Wolfgang Stehr, MD
SATURDAY
MARCH 7
Contributing Photographer
Alain McLaughlin
2015
The medical information contained in this
newsletter should not be substituted for
advice from your child’s pediatrician.
FORT MASON CENTER
SAN FRANCISCO
If you do not wish to receive future
issues of this publication, please email to
[email protected] your name and
address as they appear on the mailing
panel.
10 A.M. TO 5 P.M.
If you’d like to write to the editor of
Children’s HandPrints, please send an
email to [email protected].
FEATURING:
Seane Corn
QUESTIONS:
A BENEFIT FOR
yogareachesout.org
www.childrenshospitaloakland.org
[email protected]
UCSF BENIOFF CHILDREN’S HOSPITAL OAKLAND BOARD OF DIRECTORS
Aida Alvarez
Barbara Bass Bakar
Jeffrey Cheung
James Feusner, MD
Mark Laret
Louis J. Lavigne, Jr.
Michael LeNoir, MD
Bertram Lubin, MD
4 C HILD RE N ’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
Edward Penhoet, PhD
Shahan Soghikian
Carrie Wheeler
Bruce Wintroub, MD
A WORD FROM
DR. LUBIN
PRESIDENT & CEO
Dear Friend and Neighbor,
On September 12, President Obama led a ceremony to
commemorate Americorps’ 20th anniversary. Among the
winners of its National Leadership Awards was Americorps Alum
Dayna Long, MD, from UCSF Benioff Children’s Hospital
Oakland. Dr. Long and 19 other alumni from across the
United States were selected because of their commitment
to a lifetime of service.
Building on her experience as an AmeriCorps member,
Dr. Long, who is a pediatrician at UCSF Benioff Oakland, works
to solve critical problems with her patients and in her community.
Dr. Long says, “I am still trying to tackle poverty and inequity in
our youth—just like I did in AmeriCorps.”
Dr. Long exemplifies the kind of person who works at Children’s.
Our affiliation with UCSF is enabling us to build a stronger
pediatric medical network for all who need our services.
We accept the responsibility to make sure our
children are as healthy as they can be.
On February 1, 2015, the UCSF Benioff
Children’s Hospital in San Francisco officially
opened its doors in Mission Bay. See page 21 for
more details on this exciting chapter for Bay Area
pediatric health care. This completed expansion
allows us to bring our nationally recognized
standard of pediatric health care to even more
children.
Children's pediatrician
Dayna Long, MD,
introduced former
President Bill Clinton at the
White House AmeriCorps
20th anniversary ceremony
Yours in health,
Bertram Lubin, MD
UCSF Benioff Children’s Hospital Oakland
President & Chief Executive Officer
San Francisco's Mission Bay campus
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 5
NEUROLOGY
Children and
Headaches
DIAGNOSING HEADACHES
Diagnosis involves a detailed history
and neurological examination from your
pediatrician. Special tests such as EEG, CT
Scan, or MRI are generally not necessary.
TYPES OF HEADACHES
HEADACHE TREATMENTS
PREVENTING HEADACHES
RECURRENT HEADACHES
AT HOME
PREVENTIVE MEDICINE
• Recurrent severe headaches affect up to
15% of children.
• A migraine headache is the most common
type of headache in children. Some
children will have a brief aura or “warning
sign” prior to the headache during which
they can experience dizziness or blurred
vision. However, most children with
migraines will get the migraine without an
aura or “warning sign.” With a migraine
headache, the child is unable to continue
normal activities. At least 70 percent of
children with migraines have a family
history of migraines.
• The migraine headache symptoms usually
include:
» Fatigue
» Loss of color
» Throbbing ache on the side or in front
of the head
» Nausea or vomiting
» Increased sensitivity to sound and light
Symptoms are usually relieved by sleep.
• Give nonprescription analgesics (pain
medicine) in sufficient amounts to
relieve the pain. Most parents fail to
give enough pain medication. Severe
headaches occur even in little children
and may require larger doses of
medicine than parents are used to
giving to treat other illnesses.
• The most effective medicines include
acetaminophen (Tylenol, Tempra) and
ibuprofen (Motrin, Aleve, Advil, Nuprin).
The neurologist or nurse practictioner
can advise you on the correct
dosage for your child. Sometimes
giving your child both ibuprofen and
acetaminophen at the same time is
necessary to treat severe headaches.
This is safe and extremely effective. It
may take some experimenting to find
the best combination for your child. The
earlier the headache pain medication is
given, the more effective it will be.
TENSION HEADACHES
AT SCHOOL
• Tension headaches are the second
most common type of headache. These
generally involve a less severe, dull,
aching pain, and the child can continue
normal activities.
• The headache may persist all day or for
several days. Many children have both
recurrent and tension headaches.
• Stress, anxiety, hunger, and depression
are a few causes of tension headaches.
• School personnel can be given special
instructions about doses of medication
to be given at school at the first sign of
a headache.
• For severe headaches, allowing the
child to fall asleep in a quiet, dark room
is generally the best solution.
6 C HILD RE N ’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
If severe headaches occur frequently such that the
child is missing school and not functioning normally,
then your pediatrician may want to try a preventative
medicine. These medications are not for pain, but are
used to decrease the frequency and severity of your
child’s headaches. These medicines must be taken
daily in order to work and may not start working for a
few weeks. These medicines should be continued for
at least a few months to see if they are helpful.
QUICK TIPS
•
•
•
•
Avoid caffeine.
Get enough sleep.
Drink plenty of water; bring a water bottle to school.
Don’t skip meals.
REDUCE STRESS
If stress is triggering headaches, it is helpful to look for
ways to reduce the stress. Relaxation techniques and/
or counseling can be helpful.
FOODS TO AVOID
In some rare cases, foods such as orange-colored
cheese, chocolate, or hot dogs may be found to cause
headaches. In other children, bright sunlight, irregular
meal schedules, or poor sleeping may also contribute
to headaches.
KEEP A DIARY
Keeping a headache diary is helpful in treating your
child. Your diary should have the following information:
when the headache occurred, possible food or other
triggers, type of pain experienced (e.g., dull, sharp),
other symptoms experienced during headache,
location of pain, how long the headache lasted, and
any medications taken.
N
ASK AN
100%
HEALTHY
EXPERT
What if my child swallows
ll
something
hi
he shouldn’t?
After a kid puts something in his mouth, there are two routes the
object can take:
Children’s Hospital Oakland Emergency
Department: 510-428-3240
1. Down the swallowing tube (esophagus) towards the stomach, or
Poison Control Center: 1-800-222-1222
2. Down the windpipe (trachea) towards the lungs.
Emergency assistance: 911
If the object is trapped
in a lung and causes
coughing and trouble
breathing:
CALL 911!
If items such as kernels, grains,
needles, popcorn, small Lego
pieces, or anything the size of
a pea are inhaled into the lung,
your child will cough and may
have trouble breathing. Call 911
or bring your child to the nearest
pediatric emergency department.
The evaluation should include an
X-ray of the chest, and sometimes
looking into the lung with a
camera to remove the object.
If the object is swallowed:
Call poison control or go to the nearest
pediatric emergency department if your child
ingests:
Keep track to see if it passes in a bowel
movement or if your child starts drooling after
swallowing:
• Chemicals (e.g., laundry soap packages)
• Toxic liquids or gels
• Batteries, especially button batteries
Small items like pieces of a toy, coins, pendants,
and rocks can get stuck in the esophagus but
will usually pass unless your child develops
symptoms like drooling, refuses food, and
doesn’t seem his normal self.
Laundry
packets
Button
Toxic gel
batteries or liquid
DA N G E R O U S !
If something is stuck in the esophagus, the child
will be drooling and may not be eating as well
or as much as before. Coins are a very common
object that gets stuck in 10 to 24-month-old
kids. Bring your child to the nearest pediatric
emergency department. The evaluation
may include an X-ray and, if necessary, an
esophagoscopy for removal.
KEEP WATCH
—Wolfgang Stehr, MD, Pediatric Surgeon
What should I do if my kid’s friend has an allergic reaction to food at my house?
If your guest has his own
emergency medicine such as
an EpiPen, then he should use
it, but if there is no emergency
medicine, call 911 right away.
REACTION TYPES
• Some severe reactions might include swelling of lips or difficulty
breathing or swallowing. This is anaphylaxis. These type of
reactions are generally rare.
• If someone has a sensitivity or mild allergic reaction, they may
experience digestive discomfort or diarrhea.
AVOIDING REACTIONS
• Before serving any food, first ask your guests what their specific
food allergies or food sensitivities might be.
• Whole foods like fruit, vegetables, and organic meats are
preferable to processed foods for a number of reasons, but they
are especially important when trying to avoid food allergies
because they are not processed with other foods.
• Avoid cross-contamination. For example, if you’re chopping nuts,
it’s not enough to just rinse a knife and then go to the next food;
you need to wash the utensil thoroughly in soap and warm water.
—Vivien Nguyen, MD, Pediatric Gastroenterologist
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 7
THINGS
TO DO
8th Annual
St. Baldrick’s Head Shaving
Fundraiser
PRE-EVENT:
FRI., MARCH 13, 2015, 4 P.M.
MAIN EVENT:
SAT., MARCH 14, 2015, 11 A.M.
UCSF Benioff Children’s Hospital Oakland
Outpatient Center
SAVE THE DATE
744 52nd St., Oakland
Sat., May 30, 2015
For more information, go to
www.stbaldricks.org/events/mypage/763/2015
Benefitting
UCSF Benioff Children’s Hospital Oakland
and George Mark Children’s House
Claremont Hotel, Berkeley
www.childrenshealthguild.org
SPORTS MEDICINE CAREER WORKSHOP
FOR HIGH SCHOOL STUDENTS
LEARN ABOUT
ATHLETIC TRAINING
FROM SPORTS MEDICINE
PROFESSIONALS
MARCH 20, 5:30-8:30 PM
& MARCH 21, 8 AM-5 PM
STRETCHING
TECHNIQUES
CAREERS IN SPORTS
MEDICINE OVERVIEW
SHOULDER
INJURIES AND
REHABILITATION
MARCH
20-21
2015
RESERVE YOUR SPOT:
510-428-3558
Cost: $99 per student
SPORTS
CONCUSSIONS
WRIST, HAND, AND
THUMB INJURIES
AND TAPING
For: High school students interested in
sports medicine
Location: Walnut Creek Campus,
2401 Shadelands Dr., Suite 110, Walnut Creek, CA
ANKLE INJURIES
AND TAPING
TECHNIQUES
LOW BACK INJURIES
AND CORE TRAINING
Perks: Box lunch on Saturday, class credit, certificate
of completion, reference materials
KNEE INJURIES
AND RICE THERAPY
SPORTS MEDICINE CENTER FOR YOUNG ATHLETES
8 C HILD RE N’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
Thank you all for your entries!
KIDS
CORNER
C
Children’s Hospital’s
Whiz Kids
Jesse from
Antioch; Bardia
and Derek from
Dublin; Adelina
from Fremont;
Aishwarya, Avani,
Juliette, Kalpita,
and Katrina from
San Ramon.
PUZZLE #11:
If you have 6
people in a room and each person
shakes hands with every person
exactly once, how many total
handshakes happen?
ANSWER: 15 total handshakes
PUZZLE #12
Problem:
Move only 2 toothpicks
to create 7 squares.
CONSENT TO
PHOTOGRAPH, PUBLISH,
USE, AND/OR SHARE
INFORMATION
Draw out your solution:
I hereby give my consent to UCSF Benioff Children’s Hospital Oakland
and its organizations, including its fundraising foundation, (“Children’s”),
to do any or all of the following with respect to me/my child:
Child’s name________________________________________________
I agree that pictures may be used in and/or shared with Children’s
publication HandPrints.
The information to be released or used includes pictures or
recordings of me/my child.
Submit your answer, and if it’s correct, you’ll win a prize.
Send in a photo of you holding the solution, and you might
be in the next issue!
Send your answer by March 31, 2015, to:
CHILDREN’S HOSPITAL OAKLAND
COMMUNICATIONS DEPT.
747 52ND ST., OAKLAND, CA 94609
Fill out the consent
form only if you are
sending in your photo!
I understand:
• Pictures/Information published online before the expiration date may
remain online after the expiration date but will not be used in a new
way without my consent.
• I may cancel this consent up until a reasonable time before the
picture/information is used, but I must do so in writing and submit to:
UCSF Benioff Children’s Hospital Oakland, Marketing Communications,
747 52nd Street, Oakland, CA 94609.
• My cancellation will be effective when received by Children’s, except
where use or sharing has already occurred in accordance with this
consent.
• I will not receive any financial compensation for agreeing to this
consent.
• I have a right to receive a copy of this consent.
Please make a copy of this form for your records.
This consent expires 3 years from today. Date ____________________
NAME ___________________________________________AGE ______
Parent/Guardian signature ____________________________________
Parent/Guardian printed name ________________________________
ADDRESS __________________________________________________
Relationship to child _________________________________________
Phone ____________________________________________________
CITY ______________________________________________________
Email _____________________________________________________
Address ___________________________________________________
STATE ________________________ZIP __________________________
City_____________________________State_______Zip ___________
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 9
RESEARCH
UPDATE
Eat Your Minerals for Optimum Health
Children’s scientist David Killilea, PhD, has charted out minerals, a class of natural chemicals, that are essential
parts of our diet and contribute to our long-term health. The most common minerals that are deficient in our diets
are potassium, calcium, magnesium, iron, and zinc.
POTASSIUM
WHAT IT IS
WHY YOU NEED IT
WHERE TO FIND IT
Potassium is the most
abundant mineral inside our
cells, with critical functions
in energy production, muscle
contraction, nerve firing, and
all organ functions.
Deficiency in potassium can cause
fatigue, weakness, muscle spasms,
heart arrhythmias, and metabolic
disturbances. Chronic deficiency of
potassium may increase the risks of
some aging-related diseases, such as
stroke and hypertension.
Potassium is found in abundance in
fruits, vegetables, nuts, and seeds. It
is estimated that adults need about
4700 mg/day, but that over 90% of
the U.S. population fails to regularly
take in this much potassium.
WHAT IT IS
WHY YOU NEED IT
WHERE TO FIND IT
Calcium is well known to be
essential for strong teeth and
bones, but calcium also serves
important regulatory roles for
many metabolic processes.
Deficiency of calcium can cause bone
loss and metabolic disturbance and
may aggravate aging-related diseases
such as hypertension and cancer.
In women, calcium deficiency has
been linked to preeclampsia and
premenstrual syndrome.
Calcium is found in dairy products,
beans, nuts, seeds, and vegetables in
the kale family. It is estimated that
adults need about 1000 mg/day, but
that over 75% of the U.S. population
fails to regularly take in this much
calcium.
WHAT IT IS
WHY YOU NEED IT
WHERE TO FIND IT
Magnesium is needed
broadly throughout the
body, including for energy
production, cellular signaling,
enzyme activities, and all
organ functions.
A mild deficiency of magnesium
is hard to diagnose because of the
diverse negative effects, but they can
include muscle spasms, headaches,
nausea, and personality changes such
as apathy or aggression. Chronic
magnesium deficiency is also
associated with aging-related diseases,
including diabetes, heart disease, and
hypertension.
Magnesium is concentrated most
in green vegetables, whole grains,
nuts, and seeds, while fruits and
mineral water are other common
sources. It is estimated that adults
need about 320-420 mg/day, but
that over 80% of the U.S. population
fails to regularly take in this much
magnesium.
CALCIUM
MAGNESIUM
Besides getting the recommended amounts of specific
minerals, nutritionists are also concerned about the relative
ratios of certain minerals in our food.
The ratios are important because some minerals work in
concert—or in opposition to—other minerals in the diet.
1 0 C HILD RE N’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
EXAMPLES
RATIOS!
RATIOS!
RATIOS!
Potassium and sodium are regulated as a pair
in our body. Increasing levels of sodium can
negatively affect the levels of potassium in the
body. With the high concentration of sodium
common in Western diets, this can magnify the
negative effects of low potassium intakes.
RESEARCH
UPDATE
Turn to the next page to find
recipes that include these minerals!
IRON
WHAT IT IS
WHY YOU NEED IT
WHERE TO FIND IT
Iron is well known to be
essential for blood transport
of oxygen, but iron also
serves important roles in
energy production and
immune function.
Deficiency of iron can cause anemia,
weakness, poor wound healing, restless leg
syndrome, and increased sensitivity to illness.
While most men consume enough iron to
meet body needs, menstruating women often
struggle to maintain a positive iron balance.
Iron is concentrated in red
meat, while seafood, nuts, seeds,
and some vegetables are also
plentiful in iron as well. It is
estimated that adult women
need about 18 mg/day, but that
over 80% of U.S. women fail to
regularly take in this much iron.
WHAT IT IS
WHY YOU NEED IT
WHERE TO FIND IT
Zinc is also needed broadly
throughout the body,
including for enzyme
activities, immunity, and all
organ functions.
A mild deficiency of zinc is hard to diagnose
because of the diverse negative effects, but
they can include skin rashes, vision problems,
impaired taste and smell, and poor immunity.
Chronic zinc deficiency is also associated with
aging-related diseases, including diabetes and
cancer.
Zinc is prevalent in seafood, red
d
meat, whole grains, nuts, and
seeds, while some vegetables
have moderate amounts of
zinc. It is estimated that adults
need about 8-11 mg/day, but
that over 25% of the U.S.
population fails to regularly takee
in this much zinc.
ZINC
The modern “Western diet” often fails to provide many of
these minerals at high enough levels, or in the correct balance
with other minerals. Try eating more foods that contain these
five minerals!
David Killilea, PhD, Children's Scientist,
Nutrition & Metabolism Center
Therefore...
Nutritionists
recommend
foods with high
potassium and low
sodium levels.
Additionally, calcium and magnesium are regulated as a pair in our body. It is
currently unclear how these minerals affect each other, but the deficiency of
magnesium can cause calcium deficiency even with adequate dietary calcium
intake, and maybe vice-versa. Calcium intakes have increased in the last few
generations, but magnesium intakes have stayed the same or decreased, thus
changing the overall ratio of this mineral pair.
Therefore...
Nutritionists
recommend
foods with both
high calcium and
magnesium levels.
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 11
FOOD
DIABETES
Eat your minerals!
CORNER
VEGETABLE SOUP
soup!
Serves 6 to 8 as a starter or 4 as a main course.
Yields about 8 cups. Adapted from www.finecooking.com
Nutrition information (per serving): Calories (kcal): 120; Fat (g): fat 4.5; Fat Calories (kcal): 40;
Saturated Fat (g): 0.5; Protein (g): 5; Monounsaturated Fat (g): 3; Carbohydrates (g):
16; Polyunsaturated Fat (g): 1; Sodium (mg): 350; Cholesterol (mg): 0; Fiber (g): 3
2 tablespoons olive oil
3 medium carrots, cut into medium dice
1 large yellow onion, cut into medium dice
2 medium cloves garlic, minced
2 cups 1/2-inch-cubed peeled butternut squash (about half a 2-lb. squash)
calcium
potassium
1/4 teaspoon ground allspice
Pinch of cayenne pepper; more to taste
Kosher salt
1 quart low-salt chicken broth
1 14.5-oz. can no-salt-added diced tomatoes
4 sprigs fresh thyme or 1/2 teaspoon dried thyme
2 cups lightly packed, coarsely chopped kale
magnesium
zinc
1 cup canned chickpeas, cannellini beans, or kidney beans, drained
Sea salt and freshly ground black pepper
DIRECTIONS
1. Heat the oil in a large soup pot over medium-high heat.
2. Add the carrots and onion and cook, stirring occasionally, until they begin to
soften, about 6 minutes.
iron
3. Add the garlic and cook for 1 minute more. Add the squash, allspice, cayenne,
and 1 tsp. salt and stir to combine.
4. Add the broth, tomatoes with their juice, and thyme. Bring to a boil, reduce the
heat to medium, cover, and simmer for 10 minutes.
5. Add the kale and the chickpeas and cook uncovered until the squash is tender
and the kale has wilted, about 10 minutes more.
6. Discard the thyme springs before serving.
7. Season to taste with sea salt, freshly ground black pepper, and cayenne pepper.
CHERRY ALMOND CHOCOLATE CLUSTERS
Yields 12 clusters. Recipe courtesy of Ellie Krieger, Food Network
1 cup toasted almonds, coarsely chopped
1/2 cup dried cherries, coarsely chopped
6 ounces dark chocolate (at least 60%)
DIRECTIONS
1. In a medium bowl, toss together the almonds and the cherries. Line a baking sheet
with waxed paper.
2. Melt half the chocolate in the top of a double boiler over slightly simmering water,
over the lowest possible heat, stirring frequently. Make sure the water is not
touching the top pan. Remove the double boiler from the heat and stir in the rest
of the chocolate. Remove the top pan with the chocolate in it, gently wipe the
bottom of it and set it aside for a moment. Replace the simmering water in the
bottom pan with warm tap water. Put the pan of melted chocolate on top of the
warm water. This will keep the chocolate at the right temperature while you make
the clusters.
3. Stir the fruit-nut mixture into the chocolate. Spoon out heaping tablespoon-sized
clusters of the chocolate mixture onto the baking sheet about 1 inch apart. Put
them in the refrigerator to set for 15 minutes. Store and serve at
room temperature.
1 2 C HILD RE N ’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
dessert!
PEDI
REHAB
Mom Credits
Children’s
Rehabilitation
Medicine with
Baby Jaxon’s
Remarkable
Recovery After
Near-Drowning
Accident
“I Think It’s Magic
What They Can Do!”
M
ay 11, 2014, was Mother’s Day,
a day of celebration for the
Northrop family. Jessica and Mike
Northrop and their two children—daughter
Presley, who was then 3 years old, and baby
Jaxon, who was 9 months old at the time—
were having a barbecue with several other
relatives at the home of Mike’s parents, who
lived next door in Concord. In the blink of
an eye, celebration turned into panic.
“I had gone back to my house to take
a shower after swimming in the backyard
pool,” Jessica recalls. “Mike and my in-laws
were taking care of the kids. All of a sudden
I heard people yelling, and I ran back next
door in my robe. Another little boy had
gotten his fingers smashed in a metal chair,
and Mike turned to pay attention to him.
Literally seconds later, Mike turned back
around and saw Jaxon in the pool, face up.
Jaxon loves water, and we assume he just
Mai Ngo, MD, with
she says. “The autonomic nervous
crawled over to the pool and
Jaxon and mom Jessica
system controls ‘automatic’ things
tried to touch the water,
at Children’s pediatric
the body needs to do to survive,
somehow flipping over into
rehabilitation center.
Jaxon underwent
such as blood pressure, heart rate,
the pool.”
extensive physical and
and digestion of food. Jaxon also
Father Mike started
occupational therapy
had serious body stiffness and was
CPR (cardiopulmonary
after nearly drowning.
flailing his arms and legs. He had
resuscitation). Paramedics
lost the ability to roll over and sit up, and he
arrived within minutes and transported
had difficulty with feeding.”
Jaxon to a hospital in Concord. From there
Jaxon’s brain had not gotten enough
he was transferred to the intensive care unit
oxygen while he was in the pool, according
at Kaiser Permanente’s Oakland Medical
to Mai Ngo, MD, a physiatrist (physical
Center, where he spent five days. With his
medicine and rehabilitation specialist) at
medical condition somewhat stabilized,
Children’s. “He essentially suffered strokes
Jaxon was transported to the inpatient
and damage to deep brain structures,” she
Rehabilitation Medicine unit at UCSF
explains. “He was extremely agitated and
Benioff Children’s Hospital Oakland, where
had increased tightness and stiffness in his
he would spend the next three months.
muscles. This is an age when most kids are
One of the first physicians to meet Jaxon
increasing their mobility, but Jaxon wasn’t
after arriving at Children’s was pediatric
able to do anything. He simply cried,
hospitalist Nancy Showen, MD. “Initially,
arching his back and flailing. Then he’d calm
we had to deal with autonomic instability,”
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 13
PEDI
REHAB
down for a few minutes before starting all
over again. At first, it was hard just to get
him through the day.”
The Rehabilitation Medicine team tried
various medications for Jaxon, hoping to at
least allow him to sleep. That stage took two
to three weeks to improve.
“I explained to his mom that the
medications were intended to make Jaxon
more comfortable, so we could begin
working on his rehabilitation,” says Dr.
Ngo. “Then there came a day when he
began to smile at her and respond to her.
That was one of only a couple of times
when I saw her cry.”
Jessica recalls, “I’ll never forget the day
he first smiled. I was holding him on my
lap. My girlfriend kissed him on the tummy,
and he smiled. Then another day, I was
holding him on my lap again. My husband
kissed me on the cheek, and Jaxon giggled.
It was the first time we got him to laugh.
Now anytime my husband and I show
affection, he laughs and smiles.”
Jaxon began a regular regimen of
rehabilitation therapy, with 45-minute
physical and occupational therapy sessions
twice a day on Mondays, Tuesdays,
Wednesdays, and Fridays, and once a day
on Thursdays and Saturdays. He also had
speech therapy sessions three times a week,
as well as music therapy, usually twice a
week.
“I could be with Jaxon at some of
his therapy sessions,” Jessica says. “The
therapists taught me how to work with
Jaxon, at first just getting him to stretch,
then later working on how to roll over and
sit up. It was like starting all over again with
his physical development.”
Physical Therapist Lucy Little
Tomlinson, DPT (doctor of physical
therapy), notes that when Jaxon arrived at
Children’s, he was not demonstrating any
notable voluntary movements.
“Physical therapy first focused on
range of motion of his hips, neck, trunk,
and legs, and on preventing significant
contractures—permanent shortening of
the muscles and joints,” she explains. “We
also taught his family ways to help calm
“The staff at Children’s was
him while promoting
phenomenal,” says mom Jessica.
better postural
alignment. As Jaxon
“They respected my opinions
began to engage
and concerns. The therapists
with his surrounding
were great in teaching me how
environment, physical
therapy progressed to
to care for him. I left there fully
promoting voluntary
confident that I could take care
movements. We
of him.”
worked on head
and trunk control
so that when he was
discharged, Jaxon
could sit up on his own for very short
periods of time. We also worked with
him on rolling and pushing himself up
on his arms when on his tummy. Physical
therapy also started Jaxon on his road to
crawling, with work on coordinating his
arms and legs and trunk.”
Occupational Therapist Patricia
Medina, OTR/L (occupational therapist
registered/licensed), worked with Jaxon
on everyday activities that are typical for
a child his age. “Jaxon’s hands were fisted,
and his arms were very tight,” she says.
“To stretch his hands out of the fisting,
we made him little hand splints, which
comprehension—was also addressed.”
he wore for two hours on and two hours off
Much of Jaxon’s progress was due to
every day and also overnight. His mother
his mom’s devotion. “Jessica is a fabulous
did a great job of stretching his arms and
woman,” observes Dr. Showen. “She was
hands and applying his splints on a daily
able to be hopeful, yet realistic in her
basis. Jaxon improved greatly by the time
expectations. And Jaxon was tremendously
he was sent home. He was reaching out for
amused by his mother. She was his favorite
items and manipulating toys. He also was
toy.”
exploring different textures of food with his
In addition to the work of physicians,
hands and tasting purees and cracker-type
therapists, and nurses, Children’s provided
foods. Overall, Jaxon was a happy baby who
the Northrop family with services to help
made your heart smile when he smiled.”
them through their long ordeal, beginning
Speech Therapist Donna Minkler,
even before he was transferred to Children’s
MA, CCC-SLP (certificate of clinical
from Kaiser in Oakland.
competence-speech language pathologist),
“We work as a team to welcome the
worked with Jaxon on oral stimulation in
families of our patients,” says Social Worker
conjunction with his occupational therapy,
Joan Barouch, LCSW. “Some of our families
getting him to take turns with her and
come from long distances and need to stay
others in vocalizing (babbling). “Because
in the hospital for extended periods of time.
Jaxon had difficulty using his hand to point
I focus on providing emotional support,
and grab, part of speech therapy also worked
as well as concrete resources within our
on developing his ability to look toward
hospital and the surrounding community to
the objects and toys that he preferred,” she
assist families during their stay.”
notes. “In this way, receptive language—his
Noting that the Northrops have a
1 4 C HILD RE N’S H ANDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
Children's comprehensive care means every patient family not
only gets the best medical care but emotional care as well.
PEDI
REHAB
(l-r) Dr. Ngo examines
Jaxon’s flexibility; Social
Worker Joan Barouch,
LCSW, provided emotional
support to the family;
Occupational Therapist
Patricia Medina, OTR/L,
and Physical Therapist
Lucy Little Tomlinson, DPT;
Speech Therapist Donna
Minkler, MA, CCC-SLP, and
Jaxon share a laugh.
I didn’t even know if Jaxon would
make it, so every little step
forward was amazing. I think it’s
magic what they can do.”
large extended family in the Concord
area, Barouch says the support the family
provided to Jessica, Mike, and sister
Presley was remarkable. “They are family
personified, and they took care of each
other,” she explains. “Both grandmothers
took turns staying at the hospital several
times a week so Jessica could spend some
time with daughter Presley. Father Mike
would go to work, then pick up Presley
and bring her to visit her brother. I have
great respect for how they responded to the
challenges they faced.”
Dr. Ngo concurs, “I take care of a lot
of patients, and every family is special, but
it was especially wonderful to work with
this family. Jessica’s strength and endurance
contributed to Jaxon’s recovery. Her
positive attitude set the tone for his cheery
personality, and her stalwart spirit and
understanding made it easier for all of us to
work together to care for Jaxon.”
Another factor that helped make the
family’s time at Children’s more comfortable
was Child Life Services, a program that
helps young patients and their siblings
understand and adapt to the hospital
experience.
“Presley visited Jaxon many times while
he was at Children’s, and we really felt it
was better for her to see him so she could
understand what was going on,” Jessica
says. “The Child Life Specialist, Jennifer
Geisse, was amazing at making Presley
comfortable, using a doll to explain all of
Jaxon’s procedures. Presley came home with
a teddy bear and practiced all the procedures
with the teddy bear.”
By August 14, Jaxon was able to return
home. Social Worker Barouch had provided
the family with contact information
for behavioral health services at Kaiser
Permanente (the family’s regular health care
provider), as well as referrals to a family
resource network and the Regional Center
of the East Bay, which has programs for
developmentally disabled children. Pediatric
Rehabilitation Case Manager Kimberly
Specht arranged for outpatient physical
therapy at California Children’s Services.
She also coordinated efforts with Kaiser
Permanente regarding Jaxon’s equipment
and supply needs and his follow-up
appointments.
“Many families
have a foot in two
worlds, with a ‘typical’
child and a child with
special needs,” says
Barouch. “When you
have a child who has
special needs, it is
good to know there are
other people who share
common experiences
and understand
what you are going
through.”
“Jaxon had progressed by leaps and
bounds when they allowed him to come
home,” Jessica says. “He was smiling all the
time. He was able to feed a bit and hold it
down, and he was actively participating in
his therapy.”
Since returning home, Jaxon has
continued to make progress.
“It is really fun to watch him grow and
develop,” says Jessica. “He reaches out for
his toys, brings his spoon to his mouth, and
gets up on his knees and tries to crawl. He’s
trying hard to say ‘hi,’ and to wave. I don’t
always recognize the day-to-day progress,
but when the therapists haven’t seen him for
a few days or a week, they’re excited about
the progress.
“The staff at Children’s was
phenomenal,” she adds. “They respected
my opinions and concerns. They would say,
‘You’re his mom; you know him best.’ The
therapists were great in teaching me how to
care for him. I left there fully confident that
I could take care of him. I didn’t even know
if Jaxon would make it, so every
little step forward was amazing. I
think it’s magic what they can do.”
Jaxon worked his own brand of
“magic” on the staff at Children’s,
too. Dr. Ngo even keeps a photo
of Jaxon on her bulletin board at
work. She notes, “He is a light-upthe-room kind of cute!”
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 15
Q&A
Parents can make medication
errors on their children
Below is a radio transcript from October 20, 2014, with Patrick D.
Fleming, Jr., PharmD, UCSF Benioff Children’s Hospital Oakland’s
Director of Pharmacy Services, on KCBS radio. He addresses errors
parents make when giving over-the-counter medication to their children.
To hear the interview, go to bitly.com/kid-med-errors
KCBS: According to a 2014 study,
every eight minutes a child in America
experiences a medication mistake. It’s not
the fault of the doctors or hospitals but
their parents. On average 63,000 under the
age of 6 experience an error in the proper
amount of medication they are given. About
80% of the errors are liquid medications
when their parents mismeasure each
dosage. If you’re using a coffee spoon or
teaspoon maybe that’s not so accurate?
Dr. Fleming: That’s correct. There is quite
a bit of variability in kitchen utensils so it’s
really important that you get a device that
can actually measure the medicine that you
are giving.
KCBS: You are given those with the
medicine if you ask, right?
Dr. Fleming: They do. Most of the time
pharmacies will provide those with the
medications they are dispensing. It’s
important to note that sometimes these
oral syringes will have multiple markings
on them. They have teaspoons on one part
and mLs or cc’s on the other part. So it’s
important when measuring you know what
side of that oral syringe you are measuring
from.
or
a variance from 8 to 12 percent. It may
not seem a lot but if you take that every
4 hours or 6 hours or however how often
that medication is being prescribed or
recommended, it can amount to more or
less medication than what was expected.
KCBS: And if it’s more, what happens?
Dr. Fleming: Depending on the medication,
it can be quite serious. Acetaminophen
or Tylenol in particularly young children
below 1 year of age can develop toxicities
from the overdose of Tylenol. In addition,
a lot of the combination cough-and-cold
products that they have will often have
some other Tylenol or acetaminophen in
them as well, as so unwittingly the parent
may give some cough and cold medication
to treat symptoms of congestion and give
additional Tylenol for the fever, and the
effect is that you’ve overdosed your child on
the acetaminophen.
KCBS: So are we seeing bad results? Are
kids getting sick from this?
Dr. Fleming: Yes, particularly if you are
just using an average teaspoon from
your kitchen because there can be quite
For cough/cold
Don’t
use
kitchen
spoons!
Overdose or underdose
Dr. Fleming: I think there are a fair amount
of ER visits. I don’t have that number off the
top of my head, but we do see overdoses
from Children’s Tylenol.
KCBS: Are the instructions always crystal
clear?
Dr. Fleming: No, they’re not. Plus, it’s
sometimes very difficult to read the small
printing on some of those over-the-counter
products. Sometimes medications will come
in different formulations or different tablet
strengths, so it’s often easy to confuse or
forget what strength or formulation that
patient was on when they had taken it
the previous time. Looking at the active
ingredient is also important because a lot
of these products have acetaminophen or
Tylenol in there, so it’s very important to
talk to your doctor or pharmacist when
picking up one of these products from your
grocery store or pharmacy.
KCBS: Are there a lot of ER visits for this?
For fever
+
8-12% difference in spoons
x
Every 4-6 hours
____________________________
=
Overdose of
acetaminophen
Check with your pediatrician
or pharmacist before giving
your child any over-the-counter
medicine.
1 6 C HILD RE N ’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
Use the
measuring device
supplied with the
medication
RESEARCH
Help advance
medical discoveries!
STUDIES
Are you pregnant?
You can help future pregnant women by participating
Children’s dietary study.
in C
Th Calcium Absorption in
The
Pr
Pregnancy (CAP) study is looking at
th
the effect of ethnicity on how well
th
the body takes up calcium during
lat
late pregnancy. We are doing the
stu
study to see if the current dietary
re
recommendations for calcium are
hig
high enough to prevent bone loss
du
during pregnancy.
The study will help
determine if the current
dietary recommendations
for calcium are high
enough to prevent bone
loss during pregnancy.
To be eligible, participants must be:
• Between 30 and 36 weeks pregnant
• 18 to 45 years old.
Participants will be required to:
• Come to UCSF Benioff Children’s Hospital Oakland
two mornings during your third trimester
• Take two types of calcium with your breakfast
• Answer questions about your diet and activity
• Have your blood drawn twice.
If you qualify and complete our study,
you will receive:
• A $60 Target gift card.
To see if you are eligible:
• Call Mary Henderson, 510-428-3885, ext. 4783
• Email [email protected]
Do you drink two or more cans of soda every day?
Males age 13 to 18 are invited to participate in a research study.
The Cholesterol Research
Center (CRC) is looking for
teen boys ages 13-18 for an
eight-week research study
on the effects of replacing
soda with reduced-fat milk
on cardiovascular disease
risk factors.
To be eligible, participants must:
• Be male, 13 to 18 years old
• Currently drink at least 24 oz. (2 cans) of soda or
other sugary drinks per day.
We will determine final eligibility at the clinic visit.
If you qualify and complete our study, you will
receive:
• Up to $420
• Education on healthy lifestyle practices.
To see if you are eligible:
• Go to sams.studysites.net
• Or go to CRCstudy.org
• Or call 1-866-513-1118. Refer to the “SAMS Study”
To find more research studies you can participate in, go to
bitly.com/CHORIresearchstudies
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 17
NEUROLOGY
NEUROSURGERY
Brooklyn
Ryder
Tumors Associated
with Genetic Disorder
Cause Seizures for
Young Patients
Parents Find Their Medical Home
at Children’s Oakland for Treating
Their Child’s Tuberous Sclerosis
B
rooklyn Xiong and Ryder Schalich
wouldn’t seem to have much in
common. Brooklyn is a 3-year-old
pixie of a girl who lives in San Jose. Ryder
is a strapping 18-year-old young man who
lives in the small town of Windsor, located
in Sonoma County. Their lives have been
bound together, though, by a genetic
disorder called tuberous sclerosis as well as
the care they have received at the Jack &
Julia Tuberous Sclerosis Center at UCSF
Benioff Children’s Hospital Oakland.
“With tuberous sclerosis, certain
cells cannot turn off their ‘growth
switch,’ resulting in the growth of benign
tumors,” says pediatric neurologist Rachel
Kuperman, MD, co-director of the center.
“These potato-shaped ‘tuberous’ tumors
become hard, or sclerotic, as the child ages.
While they are considered benign tumors,
meaning they are not cancerous, their
effects are not necessarily benign. In the
brain, these tumors can cause symptoms
such as developmental delay, behavioral
problems, and seizures that are often
difficult to control with medications. The
tumors also can grow on the skin and on
other vital organs such as the kidneys,
heart, lungs, and eyes.”
The Jack & Julia Tuberous Sclerosis
Center provides comprehensive care for this
complex disease that can affect multiple
parts of the body. The initiative for creating
the center more than 10 years ago came
from parents of children with tuberous
sclerosis, according to Nurse Practitioner
Carrie Krupitsky, RN, FNP, who also serves
as co-director. She sees all the patients at
the center, providing medical services as
well as support and education.
“It really helps these families that all
of the patients’ medical care for tuberous
sclerosis is coordinated here, especially
for people who travel from far away—
and we do have patients from out of
state,” Krupitsky explains. “The parents
are grateful for having a comprehensive
program that addresses all aspects of the
disorder.”
Brooklyn’s parents, Suzy Lee and
Kevin Xiong, first became aware that their
daughter might have tuberous sclerosis
just before her first birthday, when their
pediatrician noticed multiple patches of
white skin on her body. Such unpigmented
patches can be a symptom of the disorder.
“Our pediatrician sent us to a
dermatologist, who referred us to Stanford,”
Suzy says. “At Stanford, they performed a
variety of tests, including an EEG, an EKG,
and an MRI. Those tests showed she had
tubers in her heart, which were likely to
go away over time, as well as tubers in her
brain. Their genetics specialists confirmed
the diagnosis of tuberous sclerosis.”
While tuberous sclerosis is a genetic
disorder, it is not often inherited from a
parent. In most cases, it is caused by a new,
spontaneous gene mutation. Both Suzy and
Kevin had their blood tested, and neither
parent has the disorder or the faulty genes
that result in tuberous sclerosis.
“Initially, we had no serious concerns
because Brooklyn wasn’t showing any other
symptoms,” Suzy recalls. “When she was
about 18 months old, however, we noticed
1 8 C HILD RE N’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
Dr. Kuperman connects parents of
her patients to each other so they
can offer support and advice.
Brooklyn and Ryder’s mothers
got to know each other, first
using FaceTime, then in person.
that sometimes when she was playing, she
would suddenly stop and roll her eyes to the
left for about five seconds and then go back
to playing. She didn’t seem to be in pain,
and we thought she was just being silly. But
one day I thought, what if this is not OK?
We were lucky enough to catch one of these
episodes on video. Our pediatrician said it
was probably a seizure, and he sent us to a
neurologist in Los Gatos who confirmed it
was a type of seizure. That’s when the roller
coaster ride began.”
The neurologist prescribed a medication
that is often used to prevent seizures.
“Unfortunately, the medication caused
negative behavioral side effects,” Suzy says.
“Brooklyn became angry and hyperactive,
and she refused to sleep. It was a difficult
time for all of us. So I did my research and
found Dr. Kuperman in August 2013. She
took Brooklyn off that medication and
put her on a different one. She did well
for a couple of months, but then we had
to up the dosage. That happened four or
five times, until we couldn’t increase the
dosage anymore. So then Dr. Kuperman
added another drug, which also helped for
a while.”
By January 2014, Brooklyn was
NEUROLOGY
NEUROSURGERY
having up to five seizures a day, and the
medications were not helping.
“Brooklyn is what we call a ‘classic
honeymooner’ who does well on a new
drug for a couple of months, and then
the medication doesn’t work anymore,”
Dr. Kuperman explains. “So we decided
to perform a video EEG, videotaping her
behavior while she has electrodes taped
to the outside of her head. The electrodes
are hooked up to a machine that measures
her brain activity to try to determine the
part of the brain where her seizures were
originating.”
The test indicated that her seizures
might be coming from the right side of
the brain, but the point of origin was still
unclear. Dr. Kuperman had planned to
perform another video EEG a couple of
months later, but because of the frequent
seizures, decided to go ahead with a
bilateral implantation of electrode grids
into both sides of the brain.
Kurtis Auguste, MD, a pediatric
neurosurgeon at Children’s, performed the
implantation surgery on July 7, drilling
two holes into each side
of Brooklyn’s skull and
placing several strips
with electrode grids
“Cindy (Ryder’s mom) visited us
in the hospital while Brooklyn was
there,” Suzy explains. “It really
helped to have them share their
experiences and ease our fears.”
to monitor her seizure activity for several
days. He performed a second surgery on
July 10 to remove the grids and close up the
drill holes. Dr. Kuperman was present at
both surgeries. She also read the EEG data
and worked with Dr. Auguste to plan any
“resection” procedures to remove portions
of the brain causing the seizures.
“The data from the implants confirmed
that Brooklyn’s seizures were coming from
the right side of her brain,” Suzy says.
“They still needed to pinpoint the location
that was causing the seizures. So at the
end of August, we went back for two more
surgeries.”
The first surgery on August 25 was
to insert a larger grid of electrodes over
the right side of the brain to monitor the
activity there for several days.
“Dr. Auguste showed me pictures of her
brain that he took during surgery,” Suzy
notes. “That’s when it really hit me that my
baby was having brain surgery. Fortunately,
the data provided all the information the
doctors needed to remove the part of the
brain causing her seizures. So on August
29, they removed that
part of the brain as well
as the electrode grid.
The only symptom
we noticed after her
final surgery was a
few tremors in her left
hand, but that went
away a couple of weeks
later. We still see Carrie
for regular visits, and
she consults with Dr. Kuperman as needed.
Clinic Coordinator Marianna Villagran also
is quick to respond whenever we need to
schedule an appointment or have insurance
forms filled out. The best news is Brooklyn
hasn’t had any seizures since the surgery.”
Dr. Kuperman explains that she
has kept Brooklyn on her anti-seizure
medications, but she is hoping to start
tapering the little girl off one medication.
“Brooklyn’s prognosis is very good,”
Dr. Kuperman says. “We were able to
control her seizures at an early age. Better
seizure control allows for better cognitive
development. That’s because—as Dr.
Auguste is fond of saying—having a seizure
is like having a marching band playing in
your brain while you’re trying to read a
book.”
One of Dr. Kuperman’s efforts at
Children’s Jack & Julia Tuberous Sclerosis
Center is to connect parents of their
patients to others with similar cases to offer
support and advice. That’s how Suzy Lee
and Brooklyn got to know Cindy Schalich
and her son Ryder.
“Cindy visited us in the hospital while
Brooklyn was there,” Suzy explains. “We
had previously done FaceTime video
conferences with Cindy and Ryder. It really
helped to have them share their experiences
and ease our fears.”
Ryder’s experience was quite different
from Brooklyn’s, partly because of his age
and the improvements in medical care for
tuberous sclerosis over the years.
“Ryder was 4 months old when he
(l-r) Brooklyn after
surgery; Kurtis
Auguste, MD, and
Brooklyn; Rachel
Kuperman, MD,
Brooklyn, and mom
Suzy at Children’s
Jack & Julia Tuberous
Sclerosis Center in
Oakland.
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 19
NEUROLOGY
NEUROSURGERY
started having seizures,” Cindy
remembers. “He didn’t have any
other symptoms. We went to
our regular pediatrician, who
had seen a patient with the same
‘infantile spasm’ seizures and
suspected tuberous sclerosis.
They conducted an MRI and a
‘Woods lamp’ test, which is like
“Children’s has provided wonderful,
a black light, to see if any areas
comprehensive care for Ryder,” says
of his skin were unpigmented.
He had them, and I hadn’t really
Cindy. “We were sent all around
noticed before. I just thought
northern California until we finally
they were birthmarks. The MRI
found our home base at Children’s.”
results confirmed the diagnosis
of tuberous sclerosis.”
“We were sent all around
northern California until we
finally found our home base
front of the brain. In August 2013, the
at Children’s,” Cindy explains. “I realized
family consulted Dr. Auguste.
the center at Children’s could provide
“I adore Dr. Auguste,” Cindy admits.
comprehensive care for Ryder’s condition.
“He is not just a great surgeon, but he’s also
Our main issue was to make sure his
a great human being. He was encouraging,
seizures were controlled. Carrie was our
but honest, about the possibilities for
first contact at Children’s, and she has been
surgery. Ryder has some developmental
the coordinator of Ryder’s care, guiding us
disabilities, but Dr. Auguste carefully
through every test, procedure, and referral,
explained the surgical possibilities in a way
as well as offering invaluable support. She
Ryder could understand.”
became a lifeline for us. Plus, we could
Dr. Auguste decided to drill six
rely on Marianna, who coordinates our
holes around the skull to cover a wide
multiple appointments with ease, working
area of Ryder’s brain with the implanted
around our schedules and needs.”
electrodes. Ryder was slowly taken off
By the spring of 2013, Ryder still was
his medications—which can suppress the
having enough seizures to seriously disrupt
immune system—over several months
his life—and the family’s life, too. Cindy,
before the first procedure on Monday,
her husband Bill, and Ryder began to
November 11, 2013, to implant the grids.
consider surgery to remove growths that
“By Tuesday, Ryder had about
could be causing the seizures.
30 seizures that were recorded by the
“Brain surgery is scary, even for a family
electrodes,” Cindy says. “All of the seizures
that has already gone through one brain
started in the same area of the brain. Dr.
surgery,” says Dr. Kuperman. “Ryder’s
Kuperman was ecstatic about the data,
seizures were a big hurdle, preventing
and Dr. Auguste said it was almost like the
him from becoming more independent.
tumor was shouting, ‘Here I am! Come and
That was the main impetus to investigate
get me!’ The tumor was located in the front
surgical options.”
left lobe of the brain. The second surgery
Ryder went through various procedures
to remove the electrodes and close it up was
similar to the ones performed on little
on Thursday, November 14.”
Brooklyn. The external video EEG
Because Dr. Kuperman and Dr.
produced data showing two possible
Auguste did not want Ryder to be off his
locations where the seizures could
medications for too long, the next surgery
originate—one on the right side at the back
was scheduled for December 10, as soon as
of the brain and one on the left side at the
he was healed from the earlier surgeries. In
2 0 C HILD RE N’S H ANDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
(l ) C
(l-r)
Carrie
i Krupitsky,
i k RN, FNP, examines
i
Ryder
d
during a clnic visit; Carrie, Ryder, and Cindy.
that procedure, the doctors again inserted a
sheet of electrodes over the suspicious area,
to watch it and try to provoke it to create
seizures, just to make sure they would be
removing the right area. The final surgery
to remove the tumor was performed a few
days later.
“Ryder did have a seizure after the
final surgery, but the doctors assured us
that was common because the brain had
been disturbed,” Cindy says. “Ryder came
home December 15, and had a ‘bumpin-the-road’ seizure that sent him back to
Children’s for a couple of days. Still, he
was back at school by the second week
of January, and he was able to start his
medications again. He has had zero seizures
since then. He is a new man!”
Ryder is now off one of his medications
completely, and he may be able to go off
his other medication after a couple of years.
“Our lives have changed tremendously
since Ryder’s surgery,” Cindy notes. “Now
we can leave him alone for a while, and
he has more independence. Children’s
has provided wonderful, comprehensive
care for Ryder, and we are grateful to
Dr. Kuperman, Dr. Auguste, Carrie, and
Marianna. I can’t imagine traveling down
this road without them. I hope that our
story might encourage other families who
are affected by tuberous sclerosis to explore
their options, including surgery. I only wish
we had done it earlier.”
CHILDREN’S
HOSPITALS
UCSF Benioff Children’s Hospitals Begin New Era of Innovation
Oakland Campus
San Francisco—Mission Bay Campus
San Francisco—Mission Bay Campus
After more than 10 years of planning and construction, UCSF
Medical Center at Mission Bay opened on February 1, 2015, on UC
San Francisco’s world-renowned biomedical research campus. The
new medical center comprises UCSF Benioff Children’s Hospital San
Francisco, UCSF Betty Irene Moore Women’s Hospital, and UCSF
Bakar Cancer Hospital. The new facilities include a 289-bed pediatric
hospital, with children’s emergency and outpatient services that will
integrate research and medical advancements with patient-focused,
compassionate care.
Oakland Campus
UCSF Benioff Children’s Hospital Oakland is currently undergoing
a modernization process for the Outpatient Center. The Oakland
project includes the renovation and expansion of the hospital and the
construction of a new six-story outpatient pavilion and a 334-space
parking garage, along with increased capacity at the Family House,
from 16 to 32 rooms.
Features of the new San Francisco facility:
• Spacious operating rooms are fully integrated with technology
interfaces throughout the hospital and beyond, enabling us to speed
test results and clinical insights to patients’ bedsides.
• Every room is a single-bed room, with rubber floors in patient units
to reduce toxins and eliminate the need for waxing. One-hundredpercent fresh air circulates throughout the hospital at all times.
• UCSF’s automated hospital pharmacy—believed to be the nation’s
most comprehensive—uses robotic technology and electronics to
prepare, track, and dispense bar-coded medications. At the patients’
bedsides, barcode readers scan the medication and verify the correct
dosage for improved patient safety.
• Telemedicine consults can stretch from San Francisco to regions
around the world, facilitating knowledge-sharing among the world’s
best clinical minds.
• Large multimedia walls in every patient room allow patients and
families to access entertainment, the Internet, medical records, and
patient education, as well as order housekeeping and food services
and communicate with their providers.
• An outdoor courtyard for children’s physical rehabilitation in the
Outpatient Pavilion
Features of the new Oakland facility will include:
• Consolidation of outpatient services in the north area of the campus
and inpatient services to the south area.
• U.S. Green Building Council’s LEED Silver Certification,
contributing to Oakland’s commitment to environmental
stewardship (pending).
For more information about the
Mission Bay campus, go to
http://missionbayhospitals.ucsf.edu
For more information about the
Oakland Modernization Project, go to
www.CHOnext100.org
CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 21
GIVING
BACK
Miss America 2015 visits patients at
UCSF Benioff Children’s Hospital Oakland
Help spread the
word about
UCSF Benioff
Children's Hospital
Oakland!
I
n December, Miss America Kira Kazantsev
paid a special visit to UCSF Benioff Children’s
Hospital Oakland to spread some holiday cheer.
Raised in Walnut Creek, Kira is a grateful patient,
having visited Children’s when she was 15 for a
tonsillectomy. She was crowned Miss America
in September and is also a National Goodwill
Ambassador for Children’s Miracle Network
Hospitals. Throughout her year of service as Miss
Become a member of our
Miracle Family Program
America, Kira will be visiting member hospitals
around the nation and meeting with patients and
their families.
Kira is a graduate of Hofstra University,
where she majored in political science, global
studies, and geography. Not to mention, she is
also trilingual—speaking English, Russian, and
Spanish. Kira’s goal is to obtain a Juris Doctorate
and a Master’s degree in Business Administration.
Check Out the Foundation’s New Website
give.ucsfbenioffchildrens.org
Are you a UCSF Benioff Oakland
grateful family?
Our new Miracle Family Program is a special way
for you to share your hospital experience with the
community in order to build awareness and generate
support. This program allows you to be an integral part
of unique opportunities such as visiting the events of
our corporate partners during their annual campaigns
and making public speaking appearances. If you are
interested in learning more, please contact Carly Yoshida
at 510-428-3873 or [email protected].
g
Six-year-old Khale’iya
(r) has been treated
at Children’s National
Center for Sickle Cell
Disease since she was
born. Leiya and her
big sister Haloniee (l)
have recently joined
our new Miracle
Family Program.
We are excited to unveil UCSF Benioff Children’s Hospital Foundation’s
brand new website: give.ucsfbenioffchildrens.org.
This newly designed site is dedicated to raising funds to support
children across the Bay Area, and to fueling positive changes in the
care of our youngest patients today and for future generations.
Visit the website to read our patient success stories, learn about
ways to give, get information about upcoming events, and sign up for
volunteer opportunities.
We look forward to seeing you there!
2 2 C HILD RE N ’S HA NDP R I NTS SPRING 2015 • www.childrenshospitaloakland.org
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$5 Starbucks Card as a thank you for your feedback.
1. Which sections do you read? Please check all that apply.
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CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 23
UCSF Benioff Children’s Hospital Oakland
747 52nd St.
Oakland, CA 94609-1809
San Ramon Specialty Care
UCSF
Benioff
Children’s
Hospital Oakland
is now in
San Ramon!
.
ON
RD
S
CO
TA
MI
CA
OW
CR
AL
NY
CA
VD
BL
NO
.
N
MO
RA
680
.
ON
IS
RD
Y
AN
2303 Camino Ramon
Suite 175
San Ramon, CA 94583
(925) 979-3470
From common illnesses to
complex diseases, your child has
access to world-class pediatric
specialists, close to home.
C
RR
NO
Our new 5,000-square-foot specialty care center, located in Bishop Ranch Medical Center,
offers 14 different pediatric clinics:
Behavioral Pediatrics
Gastroenterology
Psychiatry
Cardiology
General Surgery
Pulmonology
Clinical Nutrition
Nephrology
Speech Therapy
Endocrinology/Diabetes
Neurology
ENT (Ear, Nose, Throat)
Orthopaedics
Sports Medicine
Physical Therapy
Ask your
pediatrician
for a referral to
UCSF Benioff
Children’s Hospitals
San Ramon
Specialty Care