A PUBLICATION OF UCSF BENIOFF CHILDREN’S · PDF fileCreative Marketing Director ... children will have a brief aura or “warning ... child to fall asleep in a quiet, dark room

HANDPRINTSCHILDREN’S

Are you overmedicating your child?

Children’s Director of Pharmacy Services explains the safest way to administer over-the-counter medications to your children.

CAN YOU EAT YOUR WAY TO OPTIMUM HEALTH? YES! Children’s senior scientist says there are fi ve key minerals that are essential to our diet.

A PUBLICATION OF UCSF BENIOFF CHILDREN’S HOSPITAL OAKLAND

SPRING 2015 childrenshospitaloakland.org

SLEEPLAB

HEARING & SPEECH CENTER

OUTPATIENT SURGERY

SPORTS MEDICINE CENTER FOR YOUNG ATHLETES

MOTION ANALYSIS & SPORTS PERFORMANCE LAB

DIAGNOSTIC IMAGING

SPECIALTY CARECLINICS

1

BENICIA

PLEASANTON5

Walnut Creek

TREAT BLV

D.

SHADELANDS

LEN

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WALNUT

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VALLEY RD.

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 HOSPITALSWALNUT CREEK CAMPUS2401 Shadelands Dr.

Walnut Creek, CA 94598

(Cross street is Lennon Ln.)

925-979-3434

2401 Shadelands Dr.Walnut Creek, CA 94598

www.childrenshospitaloakland.org

Table of Contents

5 A WORD FROM DR. LUBIN, PRESIDENT & CEO

7 ASK AN EXPERTPediatric surgeon Wolfgang Stehr, MD, addresses what to do when your child swallows something he shouldn’t.

Pediatric gastroenterologist Vivien Nguyen, MD, advises on how to address and avoid a visitor’s allergic reaction to food you serve.

8 THINGS TO DOSt. Baldrick’s Head Shaving Fundraiser

Children’s Health Guild “Rock the Casbah” Gala

Sports Medicine Career Workshop for High School Students

9 KIDS CORNERLogic Puzzle #12

10 RESEARCH UPDATE Eat Your Minerals for Optimum

Health Dr. Killilea charts out fi ve minerals

that are essential to our diet. Written by David Killilea, PhD.

12 FOOD CORNER Vegetable Soup Cherry Almond Chocolate Clusters Written by Children’s Clinical

Nutrition department.

16 Q&AParents 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.

17 RESEARCH STUDIESCalcium Absorption in Pregnancy Diet Study

Cholesterol Research Center Diet Study

21 CHILDREN’S HOSPITALSUCSF Benioff Children’s Hospitals Begin New Era of Innovation

22 GIVING BACKMiss America 2015 visits patients at UCSF Benioff Children’s Hospital Oakland

Become a member of our Miracle Family Program

Foundation Launches New Website

18 Tumors Associated with Genetic Disorder Cause Seizures for Young PatientsParents fi nd their medical home at Children’s Oakland for treating their child’s tuberous sclerosis. Written by Susie Caragol.

13 “I Think It’s Magic What They Can Do!”Mom credits Children’s Rehabilitation Medicine with baby Jaxon’s remarkable recovery after his near-drowning accident. Written by Susie Caragol.

6 Children and HeadachesLearn how to diagnose, treat, and prevent chronic headaches. Written by Children’s Neurology Department.

4 CHILDREN’S HANDPRINTS SPRING 2015 • www.childrenshospitaloakland.org

Children’s HandPrints is a publication of UCSF Benioff Children’s Hospital Oakland, 747 52nd Street, Oakland, CA 94609; 510-428-3000.

Bertram Lubin, MDPresident and Chief Executive Offi cer

Marketing Communications DepartmentCynthia ChiarappaVice President, Strategy

Tina AmeyAdministrative Assistant

Debbie DareCreative Marketing Director

Kevin KimbroughMarketing Manager

Melinda KrigelMedia Relations Manager

Michele RepineInternet Marketing Director

Erika SandstromSenior Graphic Designer

Stephen LowryCommunications Intern

Contributing WritersSusie CaragolChildren’s Neurology DepartmentChildren’s Clinical Nutrition DepartmentJackie KershDavid Killilea, PhDVivien Nguyen, MDWolfgang Stehr, MD

Contributing PhotographerAlain McLaughlin

The medical information contained in this newsletter should not be substituted for advice from your child’s pediatrician.

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.

If you’d like to write to the editor of Children’s HandPrints, please send an email to [email protected].

HANDPRINTSCHILDREN’S

www.childrenshospitaloakland.org

Aida AlvarezBarbara Bass Bakar Jeff rey Cheung James Feusner, MD

Mark Laret Louis J. Lavigne, Jr.Michael LeNoir, MDBertram Lubin, MD

Edward Penhoet, PhD Shahan Soghikian Carrie WheelerBruce Wintroub, MD

UCSF BENIOFF CHILDREN’S HOSPITAL OAKLAND BOARD OF DIRECTORS

A BENEFIT FOR

FEATURING:

Seane Corn

QUESTIONS:

[email protected]

SATURDAYMARCH 7

2015 FORT MASON CENTER

S A N F R A N C I S C O

10 A.M. TO 5 P.M.

yogareachesout.org

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 exemplifi es the kind of person who works at Children’s. Our affi liation 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 offi cially 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.

Yours in health,

Bertram Lubin, MDUCSF Benioff Children’s Hospital OaklandPresident & Chief Executive Offi cer

CHILDREN’S HANDPRINTS SPRING 2015 • Donate at www.childrenshospitaloakland.org 5

A WORD FROM

DR. LUBINPRESIDENT & CEOPRESIDENT & CEO

Dear Friend and Neighbor,

Children's pediatrician Dayna Long, MD, introduced former President Bill Clinton at the White House AmeriCorps 20th anniversary ceremony

San Francisco's Mission Bay campus


NEUROLOGY

Children and Headaches

TYPES OF HEADACHES HEADACHE TREATMENTS PREVENTING HEADACHES

RECURRENT HEADACHES AT HOME PREVENTIVE MEDICINE

• Recurrent severe headaches aff ect 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 suffi cient 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 eff ective 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 eff ective. It may take some experimenting to fi nd the best combination for your child. The earlier the headache pain medication is given, the more eff ective it will be.

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 caff eine.• 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.

TENSION HEADACHES AT SCHOOL FOODS TO AVOID

• 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 fi rst sign of a headache.

• For severe headaches, allowing the child to fall asleep in a quiet, dark room is generally the best solution.

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.

DIAGNOSING HEADACHESDiagnosis involves a detailed history and neurological examination from your pediatrician. Special tests such as EEG, CT Scan, or MRI are generally not necessary.


100% HEALTHYASK AN

What if my child swallows something he shouldn’t?

N

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EXPERT

Children’s Hospital Oakland Emergency Department: 510-428-3240

Poison Control Center: 1-800-222-1222

Emergency assistance: 911

After a kid puts something in his mouth, there are two routes the object can take:1. Down the swallowing tube (esophagus) towards the stomach, or 2. Down the windpipe (trachea) towards the lungs.

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.

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.

DANGEROUS!

Laundry packets

Buttonbatteries

KEEP WATCH

What should I do if my kid’s friend has an allergic reaction to food at my house?

REACTION TYPES• Some severe reactions might include swelling of lips or diffi culty

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, fi rst ask your guests what their specifi c

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.

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.

—Wolfgang Stehr, MD, Pediatric Surgeon

—Vivien Nguyen, MD, Pediatric Gastroenterologist

Toxic gelor liquid

SPORTS MEDICINE CAREER WORKSHOPFOR HIGH SCHOOL STUDENTSLEARN ABOUT ATHLETIC TRAININGFROM SPORTS MEDICINE PROFESSIONALS

MARCH 20, 5:30-8:30 PM & MARCH 21, 8 AM-5 PM MARCH

20-212015

CAREERS IN SPORTS MEDICINE OVERVIEW

ANKLE INJURIES AND TAPING TECHNIQUES

WRIST, HAND, AND THUMB INJURIES AND TAPING

SPORTS CONCUSSIONS

SHOULDER INJURIES AND

REHABILITATION

KNEE INJURIES AND RICE THERAPY

STRETCHING TECHNIQUES

LOW BACK INJURIES AND CORE TRAINING

RESERVE YOUR SPOT: 510-428-3558

Cost: $99 per student

For: High school students interested in sports medicine

Location: Walnut Creek Campus, 2401 Shadelands Dr., Suite 110, Walnut Creek, CA

Perks: Box lunch on Saturday, class credit, certificate of completion, reference materials

SPORTS MEDICINE CENTER FOR YOUNG ATHLETES


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 Center744 52nd St., Oakland

For more information, go to www.stbaldricks.org/events/mypage/763/2015

SAVE THE DATE

Sat., May 30, 2015Benefi tting

UCSF Benioff Children’s Hospital Oakland and George Mark Children’s House

Claremont Hotel, Berkeley

www.childrenshealthguild.org

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 OAKLANDCOMMUNICATIONS DEPT.747 52ND ST., OAKLAND, CA 94609

NAME ___________________________________________AGE ______

ADDRESS __________________________________________________

CITY ______________________________________________________

STATE ________________________ZIP __________________________

KIDS CORNER


Children’s Hospital’s

Whiz Kids

Problem: Move only 2 toothpicks to create 7 squares.

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

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.

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 eff ective when received by Children’s, except where use or sharing has already occurred in accordance with this consent.

• I will not receive any fi nancial 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 ____________________

Parent/Guardian signature ____________________________________

Parent/Guardian printed name ________________________________

Relationship to child _________________________________________

Phone ____________________________________________________

Email _____________________________________________________

Address ___________________________________________________

City_____________________________State_______Zip ___________

CONSENT TO PHOTOGRAPH, PUBLISH, USE, AND/OR SHARE INFORMATION

Jesse from Antioch; Bardia and Derek from Dublin; Adelina from Fremont; Aishwarya, Avani, Juliette, Kalpita, and Katrina from San Ramon.

Thank you all for your entries!

PUZZLE #12

Fill out the consent form only if you are sending in your photo!

Draw out your solution:

CC


RESEARCHUPDATE

Eat Your Minerals for Optimum HealthChildren’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 causefatigue, 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.

CALCIUM


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.

MAGNESIUM


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.

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.

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.

EX

AM

PLE

S

RATIOS!RATIOS!RATIOS!


RESEARCHUPDATE

IRON


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 redmeat, 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.

ZINC


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 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 take in this much zinc.

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 high potassium and low sodium levels.

Therefore...Nutritionists recommend foods with both high calcium and magnesium levels.

d

David Killilea, PhD, Children's Scientist, Nutrition & Metabolism Center

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!

Turn to the next page to find recipes that include these minerals!

e

DIABETES


FOOD CORNER

soup!VEGETABLE SOUPServes 6 to 8 as a starter or 4 as a main course. Yields about 8 cups. Adapted from www.fi necooking.comNutrition 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)

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

1 cup canned chickpeas, cannellini beans, or kidney beans, drained

Sea salt and freshly ground black pepper

DIRECTIONS1. 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.

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.

dessert!

CHERRY ALMOND CHOCOLATE CLUSTERSYields 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%)

DIRECTIONS1. 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.

calcium potassium

magnesium

iron

zinc

Eat your minerals!


May 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 fi ngers 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

crawled over to the pool and tried to touch the water, somehow fl ipping over into the pool.”

Father Mike started CPR (cardiopulmonary resuscitation). Paramedics arrived within minutes and transported Jaxon to a hospital in Concord. From there he was transferred to the intensive care unit at Kaiser Permanente’s Oakland Medical Center, where he spent fi ve days. With his medical condition somewhat stabilized, Jaxon was transported to the inpatient Rehabilitation Medicine unit at UCSF Benioff Children’s Hospital Oakland, where he would spend the next three months.

One of the fi rst physicians to meet Jaxon after arriving at Children’s was pediatric hospitalist Nancy Showen, MD. “Initially, we had to deal with autonomic instability,”

she says. “The autonomic nervous system controls ‘automatic’ things the body needs to do to survive, such as blood pressure, heart rate, and digestion of food. Jaxon also had serious body stiffness and was fl ailing his arms and legs. He had

lost the ability to roll over and sit up, and he had diffi culty with feeding.”

Jaxon’s brain had not gotten enough oxygen while he was in the pool, according to Mai Ngo, MD, a physiatrist (physical medicine and rehabilitation specialist) at Children’s. “He essentially suffered strokes and damage to deep brain structures,” she explains. “He was extremely agitated and had increased tightness and stiffness in his muscles. This is an age when most kids are increasing their mobility, but Jaxon wasn’t able to do anything. He simply cried, arching his back and fl ailing. Then he’d calm

PEDIREHAB

Mai Ngo, MD, with Jaxon and mom Jessica at Children’s pediatric rehabilitation center. Jaxon underwent extensive physical and occupational therapy after nearly drowning.

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!”

PEDIREHAB


down for a few minutes before starting all over again. At fi rst, 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 fi rst 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 fi rst 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 fi rst 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 fi rst focused on range of motion of his hips, neck, trunk, and legs, and on preventing signifi cant contractures—permanent shortening of the muscles and joints,” she explains. “We also taught his family ways to help calm

him while promoting better postural alignment. As Jaxon began to engage with his surrounding environment, physical therapy progressed to promoting voluntary movements. We 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 fi sted, and his arms were very tight,” she says. “To stretch his hands out of the fi sting, we made him little hand splints, which he wore for two hours on and two hours off every day and also overnight. His mother did a great job of stretching his arms and hands and applying his splints on a daily basis. Jaxon improved greatly by the time he was sent home. He was reaching out for items and manipulating toys. He also was exploring different textures of food with his hands and tasting purees and cracker-type foods. Overall, Jaxon was a happy baby who made your heart smile when he smiled.”

Speech Therapist Donna Minkler, MA, CCC-SLP (certifi cate of clinical competence-speech language pathologist), worked with Jaxon on oral stimulation in conjunction with his occupational therapy, getting him to take turns with her and others in vocalizing (babbling). “Because Jaxon had diffi culty using his hand to point and grab, part of speech therapy also worked on developing his ability to look toward the objects and toys that he preferred,” she notes. “In this way, receptive language—his

comprehension—was also addressed.”Much of Jaxon’s progress was due to

his mom’s devotion. “Jessica is a fabulous woman,” observes Dr. Showen. “She was able to be hopeful, yet realistic in her expectations. And Jaxon was tremendously amused by his mother. She was his favorite toy.”

In addition to the work of physicians, therapists, and nurses, Children’s provided the Northrop family with services to help them through their long ordeal, beginning even before he was transferred to Children’s from Kaiser in Oakland.

“We work as a team to welcome the families of our patients,” says Social Worker Joan Barouch, LCSW. “Some of our families come from long distances and need to stay in the hospital for extended periods of time. I focus on providing emotional support, as well as concrete resources within our hospital and the surrounding community to assist families during their stay.”

Noting that the Northrops have a

“The staff at Children’s was phenomenal,” says mom Jessica. “They respected my opinions and concerns. The therapists were great in teaching me how to care for him. I left there fully confi dent that I could take care of him.”


Children's comprehensive care means every patient family not only gets the best medical care but emotional care as well.

PEDIREHAB

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 personifi ed, 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 confi dent 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-up-the-room kind of cute!”

(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.”


Q&A

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 coff ee 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.

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

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 eff ect is that you’ve overdosed your child on the acetaminophen.

KCBS: Are there a lot of ER visits for this?

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 diffi cult to read the small printing on some of those over-the-counter products. Sometimes medications will come in diff erent formulations or diff erent 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.

Parents can make medication errors on their childrenBelow 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

Use the measuring device supplied with the medication

or

8-12% difference in spoons x Every 4-6 hours ____________________________

Overdose or underdose

Don’t usekitchenspoons!

+

For feverFor cough/cold

=Overdose of acetaminophenCheck with your pediatrician or pharmacist before giving your child any over-the-counter medicine.


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]

The study will help determine if the current dietary recommendations for calcium are high enough to prevent bone loss during pregnancy.

You can help future pregnant women by participating in Children’s dietary study.

Are you pregnant?

RESEARCHSTUDIES

The Calcium Absorption in Pregnancy (CAP) study is looking at the effect of ethnicity on how well the body takes up calcium during late pregnancy. We are doing the study to see if the current dietary recommendations for calcium are high enough to prevent bone loss during pregnancy.

The Cholesterol Research Center (CRC) is looking for teen boys ages 13- 18 for an eight- week research study on the eff ects of replacing soda with reduced-fat milk on cardiovascular disease risk factors.

Do you drink two or more cans of soda every day?

Help advance medical discoveries!

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 fi nal 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”

in C

ThPrththlatsturehigdu

Males age 13 to 18 are invited to participate in a research study.

To fi nd more research studies you can participate in, go to bitly.com/CHORIresearchstudies

Brooklyn 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

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


NEUROLOGYNEUROSURGERY

Tumors Associated with Genetic Disorder Cause Seizures for Young PatientsParents Find Their Medical Home at Children’s Oakland for Treating Their Child’s Tuberous Sclerosis

Brooklyn

Ryder

Dr. Kuperman connects parents of her patients to each other so they can off er support and advice. Brooklyn and Ryder’s mothers got to know each other, fi rst using FaceTime, then in person.



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

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.

“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.”


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 a black light, to see if any areas of his skin were unpigmented. He had them, and I hadn’t really noticed before. I just thought they were birthmarks. The MRI results confirmed the diagnosis of tuberous sclerosis.”

“We were sent all around northern California until we finally found our home base at Children’s,” Cindy explains. “I realized the center at Children’s could provide comprehensive care for Ryder’s condition. Our main issue was to make sure his seizures were controlled. Carrie was our first contact at Children’s, and she has been the coordinator of Ryder’s care, guiding us through every test, procedure, and referral, as well as offering invaluable support. She became a lifeline for us. Plus, we could rely on Marianna, who coordinates our multiple appointments with ease, working around our schedules and needs.”

By the spring of 2013, Ryder still was having enough seizures to seriously disrupt his life—and the family’s life, too. Cindy, her husband Bill, and Ryder began to consider surgery to remove growths that could be causing the seizures.

“Brain surgery is scary, even for a family that has already gone through one brain surgery,” says Dr. Kuperman. “Ryder’s seizures were a big hurdle, preventing him from becoming more independent. That was the main impetus to investigate surgical options.”

Ryder went through various procedures similar to the ones performed on little Brooklyn. The external video EEG produced data showing two possible locations where the seizures could originate—one on the right side at the back of the brain and one on the left side at the

front of the brain. In August 2013, the family consulted Dr. Auguste.

“I adore Dr. Auguste,” Cindy admits. “He is not just a great surgeon, but he’s also a great human being. He was encouraging, but honest, about the possibilities for surgery. Ryder has some developmental disabilities, but Dr. Auguste carefully explained the surgical possibilities in a way Ryder could understand.”

Dr. Auguste decided to drill six holes around the skull to cover a wide area of Ryder’s brain with the implanted electrodes. Ryder was slowly taken off his medications—which can suppress the immune system—over several months before the first procedure on Monday, November 11, 2013, to implant the grids.

“By Tuesday, Ryder had about 30 seizures that were recorded by the electrodes,” Cindy says. “All of the seizures started in the same area of the brain. Dr. Kuperman was ecstatic about the data, and Dr. Auguste said it was almost like the tumor was shouting, ‘Here I am! Come and get me!’ The tumor was located in the front left lobe of the brain. The second surgery to remove the electrodes and close it up was on Thursday, November 14.”

Because Dr. Kuperman and Dr. Auguste did not want Ryder to be off his medications for too long, the next surgery was scheduled for December 10, as soon as he was healed from the earlier surgeries. In

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 ‘bump-in-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 has provided wonderful, comprehensive care for Ryder,” says Cindy. “We were sent all around northern California until we fi nally found our home base at Children’s.”

(l-r) Carrie Krupitsky, RN, FNP, examines Ryder during a clnic visit; Carrie, Ryder, and Cindy.(l ) C i i k i d


CHILDREN’SHOSPITALS

UCSF Benioff Children’s Hospitals Begin New Era of Innovation

San Francisco—Mission Bay CampusAfter 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.

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 fl oors in patient units to reduce toxins and eliminate the need for waxing. One-hundred-percent 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.

Oakland CampusUCSF 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 Oakland facility will include:• Consolidation of outpatient services in the north area of the campus

and inpatient services to the south area.

• An outdoor courtyard for children’s physical rehabilitation in the Outpatient Pavilion

• U.S. Green Building Council’s LEED Silver Certifi cation, contributing to Oakland’s commitment to environmental stewardship (pending).

San Francisco—Mission Bay Campus Oakland Campus

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

Miss America 2015 visits patients at UCSF Benioff Children’s Hospital Oakland

In 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

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.

GIVINGBACK

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].

Become a member of our Miracle Family Program Check Out the Foundation’s New Website

give.ucsfbenioffchildrens.org

We are excited to unveil UCSF Benioff Children’s Hospital Foundation’s brand new website: give.ucsfbenioff childrens.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!

Help spread the word about UCSF Benioff Children's Hospital Oakland!

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.



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UCSF Benioff Children’s Hospital Oakland747 52nd St. Oakland, CA 94609-1809

San Ramon Specialty Care

2303 Camino Ramon

Suite 175

San Ramon, CA 94583

(925) 979-3470

Our new 5,000-square-foot specialty care center, located in Bishop Ranch Medical Center,

offers 14 different pediatric clinics:

Behavioral Pediatrics

Cardiology

Clinical Nutrition

Endocrinology/Diabetes

ENT (Ear, Nose, Throat)

Gastroenterology

General Surgery

Nephrology

Neurology

Orthopaedics

From common illnesses to

complex diseases, your child has

access to world-class pediatric

specialists, close to home.

UCSF Benioff

Children’s Hospital Oakland

is now in San Ramon!

CROW CANYON RD.

680

CAM

INO

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ALC

OSTA

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NORRIS CANYON RD.

Psychiatry

Pulmonology

Speech Therapy

Sports Medicine

Physical Therapy

Ask your

pediatrician

for a referral to

UCSF Benioff

Children’s Hospitals

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Documents

A PUBLICATION OF UCSF BENIOFF CHILDREN’S · PDF fileCreative Marketing Director ... children will have a brief aura or “warning ... child to fall asleep in a quiet, dark room