All posts by CHOC Children's

Honoring the legacy of Dr. Nick Anas

Recently, a new memorial wall was revealed in honor of Dr. Nick Anas, beloved physician-in-chief and pediatric critical care specialist who passed away in April 2018.

Dr. Anas’ family and close friends gathered for the unveiling of the wall, located outside the PICU, and to reminisce about the impact he had at CHOC. The warm, welcoming installation features Dr. Anas’ photo and the words “Healer, Leader, Mentor, Educator, Friend and Advocate” in large silver type.

“The concept and final design of the wall was a collaborative effort,” explains Karen Gruner, senior director of communications and donor experience at CHOC Children’s Foundation. “Our goal was to create a classic, timeless wall that resonates with all those who pass by.”

Drs-Knight-Lubinsky-Dr-Nick-Anas-Wall-Dedication
Dr. Jason Knight, PICU medical director; and Dr. Paul Lubinsky, PICU associate medical director

In addition to the wall, Dr. Anas’ legacy is being recognized in several ways:

  • The simulation center and critical care floor were named after him.
  • The Nick G. Anas, MD Endowment for Pediatric Intensive Care was established. The endowment advances pediatric intensive care through research and education under the direction of the Critical Care Medical Director.
  • The Foundation’s conference room was dedicated in his memory.

Learn more about CHOC’s dedications to Dr. Anas, and how you can help honor his memory.

A years-long search for a diagnosis: Colton’s story

Ever since six-year-old Colton Pena was a baby, he got sick more than other kids. His parents Josh and Devon knew Colton had low immunoglobin levels and was immune-compromised, but they were determined to find more answers.

“I encourage all parents to advocate for their children,” Devon says. “If you believe there is an issue with your child, go with your gut.”

When the Pena family relocated to Orange County, Colton got horrible mouth sores. His new pediatrician ordered blood work that showed Colton was severely neutropenic. This meant that he had extremely low levels of neutrophil, a version of white blood cells, which help the body fight off infection.

His pediatrician referred him to CHOC Children’s team of pediatric hematology experts. Under the care of pediatric hematologists Dr. Loan Hsieh and Dr. David Buchbinder, Colton underwent a bone marrow biopsy to rule out leukemia, but his team still wasn’t sure why his neutrophil counts were so low.

Over the next three years, Colton’s care team worked diligently to find a diagnosis, and ultimately, a treatment plan. That time was filled with multiple bone marrow biopsies and hospitalizations for high fevers. Devon, a licensed vocational nurse, quit her job as a school nurse to care for Colton full-time.

“CHOC’s hematology team was been so great about trying to find out what was going on with Colton. There were a lot of minds working together to figure out why his immune levels would be low, then level out, then go back down,” Devon says.

Josh, a police officer, likens the doctors’ work to detectives working to find a break in a complicated investigation.

“We got to the point where we just wanted to know if it was good news or bad news. That way, we would know how to help him,” Josh says.

colton-pena
Colton during a stay at CHOC Children’s Hospital.

Colton should be in first grade, but due to health issues he missed so much school last year that he is repeating kindergarten.

“Last year, Colton was at CHOC more than he was home,” says Devon. “We came weekly to check his neutrophil count and for other appointments, anytime he spiked a low-grade fever we had to visit the Emergency Department to check his neutrophil, and he was hospitalized more than five times.”

Colton struggled emotionally with his illness, so his hematology team referred him to CHOC psychologist Dr. Cindy Kim.

“I could see his anger related to his illness, and he was having a hard time coping with the recent death of his grandfather,” Devon recalls. “I felt especially with my medical background it was important for him to talk about it. Sometimes it’s hard to talk about your feelings with a parent.”

For a few months, Colton and Devon met weekly with Dr. Kim as he learned to work through the anger and emotions.

Colton tried bone marrow stimulant injections to try and help his body make more neutrophil. When that didn’t work, his hematology team suggested genetic testing.

The results identified a rare variant mutation in Colton’s genes. This particular mutation is a recent discovery and more research is needed to fully understand its scope.

Armed with the results of Colton’s genetic testing, Dr. Buchbinder started Colton on infusions of immunoglobin—a protein in the body that plays a role in supporting the immune system. Immunoglobulin therapy is used to decrease symptoms of a number of autoimmune disorders.

Ever since starting these infusions, Colton has been like a different kid, Devon says. He’s only been hospitalized once, he’s able to attend school regularly, and he only needs to visit CHOC monthly for lab work. Since his immune system is healthier, his parents feel more comfortable letting him play outside, his favorite hobby.

colton-baseball
Now that he is much healthier, his parents feel more comfortable letting him play outside, his favorite hobby.

Dr. Buchbinder gave Colton’s family the option of coming to CHOC monthly for infusions or doing them weekly at home. Given Devon’s background in nursing and her history of caring for children with autoimmune disorders who needed similar injections, the family opted for at-home infusions. A home health nurse provided training, and now Devon administers Colton’s infusions every Sunday afternoon.

“Colton’s whole motto is ‘Be brave, show courage.’ His bravery has made my journey as a parent and caregiver so much easier. I’ve never had to deal with his fear or worry,” Devon says.

Colton, pictured here with dad Josh, has a motto: Be brave, show courage.

Throughout his journey, Colton has become an advocate for giving back to other kids at CHOC. He organized several fundraisers to purchase bright, lively hospital gowns so that other patients could wear their favorite theme or animal. He’s even participated in magic shows to spark joy among other patients.

Last Christmas, Colton told his parents he didn’t want to ask for too many gifts, so that he could donate more toys to kids at CHOC.

“Colton has the kindest heart. He loves helping other kids who are sick and helping make their day,” says Devon. “Giving back has been something that has redirected his own feelings into something positive.”

Josh’s colleagues at Huntington Beach Police Department, inspired by Colton’s bravery and commitment to help others, have supported his fundraising efforts. Officers organized fundraisers to help Colton purchase more unique hospital gowns and organized a toy drive to benefit CHOC patients hospitalized over the holiday season.

Share your own CHOC story

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IBD vs. IBS: How to tell the difference

It’s normal for kids to get stomach aches, but some kids have bad stomach pain all the time. If your child has abdominal pain, cramping, gas, bloating, diarrhea or constipation, you may be wondering if your child has IBD or IBS (inflammatory bowel disease or irritable bowel syndrome). But do you know the difference?

While many of the symptoms are similar, IBD and IBS are very different. IBS can cause pain, but there is no inflammation of the intestine and it doesn’t lead to serious disease, as with IBD.

“It’s important to not diagnose either of these conditions yourself. If your child has these symptoms, you should take your child to a pediatrician, who can then refer your child to a pediatric gastroenterologist, if necessary” says Dr. Kenneth Grant, pediatric gastroenterologist at CHOC Children’s.

Inflammatory Bowel Disease

IBD is a chronic condition caused by inflammation in the digestive tract. There are two main types of IBD – ulcerative colitis and Crohn’s disease. Ulcerative colitis affects the colon, and Crohn’s disease can affect any part of the digestive system.

“No one knows for sure that causes IBD or why it appears when it does. We do know that people who have family members with IBD are more likely to develop the disease. There is evidence that patients with this disease have abnormal activity of the immune system. Diet, nutrition and the environment may all play key roles,” says Dr. Grant.

IBD is diagnosed by a pediatric gastroenterologist through complete medical history, physical examination and specialized diagnostic procedures, such as blood tests, stool tests, endoscopy, colonoscopy or radiology exams. IBD treatment usually consists of medication therapy or surgery with the goal of reducing inflammation.

IBD symptoms

  • Abdominal pain
  • Diarrhea, sometimes bloody
  • Urgency to stool
  • Fatigue
  • Weight loss
  • Loss of appetite
  • Rectal bleeding
  • Fever
  • Growth failure
  • Rash
  • Joint pain

Irritable Bowel Syndrome

IBS is not a disease, but rather, a collection of symptoms. There is no damage or inflammation in the digestive system. When abdominal pain is accompanied with changes in bowel movement habits, either constipation or diarrhea, this is called irritable bowel syndrome.

Although the exact cause is not known, nerve signals or chemicals secreted by the gut or brain may cause the gut to be more sensitive to triggers that normally do not cause significant pain (such as stretching or gas bloating). The nerve dysfunction also results in change in bowel motility leading to constipation or diarrhea.

To diagnose IBS, a physician should rule out a diagnosis of IBD. IBS is usually treated with dietary change, medication and stress management.

IBS symptoms

  • Abdominal pain
  • Bloating
  • Nausea
  • Heartburn
  • Chronic or intermittent diarrhea
  • Chronic or intermittent constipation
  • Urgency to pass a bowel movement or sensation of incomplete passage of bowel movement
  • Passage of mucus in the stool

To make an appointment with a CHOC gastroenterology specialist, call 888-770-2462.

Learn more about the CHOC Inflammatory Bowel Disease Program

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Sudden unexpected death in epilepsy: What parents should know

By Dr. Lily Tran, pediatric neurologist and epileptologist and medical director of CHOC’s comprehensive epilepsy center

dr-lily-tran-choc-childrens

Sudden unexpected death in epilepsy (SUDEP) occurs when someone with epilepsy suddenly dies unexpectedly and the cause is not related to an accident or seizure emergency. A seizure emergency could include status epilepticus, where someone has a seizure lasting more than five minutes, or two or more seizures within a short period of time without the person returning to normal in between. Aside from epilepsy, this person is otherwise considered healthy, and no other cause of death can be found. Each year, one in 1,000 people in the U.S. die from SUDEP.

There are several risk factors for SUDEP. These include:

  • Poorly controlled seizures, especially tonic-clonic seizures, characterized by a loss of consciousness and violent muscle contractions
  • Seizures, especially tonic-clonic seizures, that tend to occur in sleep or at night
  • Not taking medications regularly or as prescribed
  • Stopping or changing medications suddenly
  • Young adult age

The exact cause of SUDEP is unknown. More research is needed to understand its cause. Some research suggests that seizures lead to changes in the brain and/or heart’s ability to function, and related breathing difficulties may lead to SUDEP.

For anyone with epilepsy, the ultimate goal is always to minimize seizures as much as possible and strive to become seizure-free. There are several other things people with epilepsy can do to help prevent SUDEP, including:

  • Take your anti-epileptic medications as prescribed. Do not stop medications abruptly without talking to your doctor.
  • Stay healthy by eating a well-balanced diet and getting regular exercise.
  • Avoid potential seizure triggers.
  • Make sure your family members and/or caretakers understand seizure first-aid

Although seizure-alert devices are on the market, there is no scientific data to support the idea that these devices help prevent SUDEP. More evidence is needed to show they can accurately detect seizures and prevent SUDEP.

VIDEO: A CHOC neurologist explains epilepsy vs. seizures

Related posts:

  • Epilepsy myths: what parents should know
    At CHOC Children’s, we understand the challenges families face when a child experiences a seizure. Our Comprehensive Epilepsy Program is a national leader in pediatric epilepsy care, offering cutting-edge diagnostics, ...
  • Restoring a Happy Childhood: Rylee’s Epilepsy Journey
    Despite her happy disposition, Rylee had a big roadblock: frequent disruptive seizures. Six months past her epilepsy surgery, she hasn’t had a single seizure.
  • Overcoming Epilepsy: Gabriel’s Story
    On bad days, Gabriel would experience up to 50 seizures. Today, he is an intelligent, creative and artistic 12-year-old who dreams of being a paramedic when he grows up.

Rent Choco’s boat and support mental health programs

Enjoy the Southern California weather on Choco’s custom boat and support CHOC’s mental health programs at the same time. A portion of every rental will support these programs, and a generous donor is making waves with a $50,000 matching gift.

choc-childrens-custom-electric-boat

For rental information, please visit the Lido Marina Village Electric Boat Rental website at eboatsrental.com to get started and select “Book Now.” Be sure to select the CHOC boat.

You can also sponsor a ride on the boat for a CHOC family dealing with a serious illness or injury. Two-hour vouchers/gift certificates can be purchased at the rental office or online at eboatsrental.com. For a tax-deductible gift, make your gift via check or online donation to CHOC Foundation and designate it towards “CHOC Boat Ride.”

Stay Informed about Mental Health

CHOC Children’s has made the commitment to take a leadership role in meeting the need for more mental health services in Orange County. Sign up today to keep informed about this important initiative.



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