All posts by CHOC

Batten disease patients highlight CHOC’s growing reputation as a destination for kids with rare conditions

In the yard of his home just outside Boise, Idaho, Ely Bowman loves to toss balls and play with Bobo, the family Goldendoodle. He also loves the trampoline.

“If you were to come over and just watch him,” says his mother, Bekah, “you would not believe me if I told you he was blind.”

Ely, who turns 8 in July, lost his sight when he was 6 due to the rare neurological disorder CLN2 disease, one of the most common forms of a group of inherited disorders known as Batten disease.

Kids with CLN2 disease are missing an enzyme that chews up waste products in the brain. This lack of a cellular “Pac Man” to gobble up the bad stuff eventually leads to the destruction of neurons, resulting in blindness, loss of ability to speak or move, dementia, and death – usually by the teens.

There is no cure for CLN2 disease. But thanks to genetic scientists, neurosurgeons and nurses at CHOC, there is hope for delaying progression of the disease – one that claimed the life of Ely’s older brother, Titus, at age 6 in September 2016 before a cutting-edge therapy became available at CHOC six months later.

The therapy, Brineura, is a medication that treats the brain via a port under the scalp with a synthetic form of the missing enzyme. CLN2 patients come to CHOC every two weeks for the four-hour infusion to keep the drug working effectively.

Ely receiving an infusion at CHOC
Ely receiving an infusion at CHOC

Largest infusion center in country

CHOC since has grown into the largest Brineura infusion center in the country and the second largest in the world. Kids from all over the United States have come to CHOC for Brineura treatment since it first was offered in March 2017 following a three-year effort by Dr. Raymond Wang to get the green light for CHOC to become the second infusion site in the U.S.

“When a family has a child with a rare disease,” Dr. Wang says, “and if the South Pole were the only place that was offering treatment, the family would find a way to get there. Those are the lengths that a rare disease family would go to help their child.”

CHOC now has treated 13 Brineura patients, the latest being 3-year-old Max Burnham, whose parents having been making the trek to Orange every two weeks from their home in the Bay Area since Max’s first infusion on Feb. 8, 2021.

Max asleep with Choco teddy bear
Three-year-old Max and his family travel to CHOC from Northern California every two weeks for treatment for Batten Disease.

CHOC’s Brineura program underscores its growing reputation as a destination for kids with rare diseases.

Recently, CHOC specialists started treating a 3-month-old with Hurler syndrome, another serious and neurodegenerative condition. The family drove across the country because CHOC is the only site in the world that has a clinical trial of gene therapy for their son’s condition.

Because the family will be staying at CHOC for at least through April 2021, a team of three study coordinators — Nina Movsesyan, Harriet Chang, and Ingrid Channa – helped the family get settled in at an Airbnb in Irvine.

“Our case managers and financial coordinators were crucial in getting the infant’s weekly enzyme therapy approved within a week’s time, and our excellent nurse practitioner, Rebecca Sponberg, asked purchasing to procure the enzyme drug for the baby on two days’ notice,” notes Dr. Wang, a metabolic specialist and director of CHOC’s Campbell Foundation of Caring Multidisciplinary Lysosomal Storage Disorder Program.

Dr. Wang says CHOC became an active site for the RGX-111 gene therapy after treating a child from a family in Indio in 2019. Another 14-year-old girl from West Virginia has received the same treatment.

“All of these cases wouldn’t be possible without the awesome teamwork from team members, who all are dedicated to the mission of CHOC,” says Dr. Wang. “I think it’s pretty remarkable that people from all over the country are coming here for clinical care and research studies because of our expertise and what we offer them: hope for their beloved children.”

Dr. Raymond Wangs gives patient Ely a high-five
Dr. Raymond Wangs gives patient Ely a high-five

A true team effort

For the Brineura infusions, which are administered by pediatric neurosurgeon Dr. Joffre Olaya, CHOC metabolic specialists work closely with providers in CHOC’s Neuroscience Institute.

Susan See is nurse manager of CHOC Hospital’s neuroscience unit, where the patients receive their infusion and stay for care afterward.

“We quickly put together a comprehensive program that really treats the patient and family not just medically, but also from an emotional support standpoint,” she says.

Batten disease especially is terribly cruel because its symptoms typically hit just as parents are starting to enjoy their child reaching several developmental and cognitive milestones such as walking and talking.

Untreated, the disease eventually takes all that away.

“What makes them who they are gets rapidly erased,” says Dr. Wang. “As a practitioner, it’s hard. I’m trying to imagine being in the shoes of a parent knowing this is going to happen to their child.”

For Bekah Bowman and her husband, Daniel, the diagnosis for Titus and, two months later, Ely, was like being on a high diving board and being shoved off and bellyflopping into the water.

“We had to learn what little control we have in life,” Bekah says.

The Bowmans worked closely with Dr. Wang to get the Brineura clinical trial launched at CHOC.

“When we met Dr. Wang,” Bekah says, “he told us: ‘We don’t have the answers for you right now, but I want you to know we’re going to keep fighting and we’re not going to give up.’”

Brineura families form tight bonds with their team at CHOC, which includes eight nurses who have been trained to care for them: Allison Cubacub, Genevieve Romano-Valera, Anh Nguyen, Melissa Rodriguez, Kendall Galbraith, Annsue Truong, Monica Hernandez, and Trisha Stockton.

The team at CHOC say goodbye to Ely and his family before they moved to Idaho
The team at CHOC say goodbye to Ely and his family before they moved to Idaho

Some families, including the Bowmans, have moved on from the program at CHOC when Brineura infusions became available near their hometowns. The Bowmans returned to their native Idaho outside Boise in October 2018. Leaving CHOC was difficult.

“That was one of the hardest goodbyes we had to say,” Bekah says.

All Brineura patients receive the transfusions on the same day – something unique to CHOC, Susan says.

“We learn what is unique about each patient and we become very close to them,” she adds. “It really reminds us why we said yes to nursing. What we thrive on is being able to care for families.”

Quick to action

Laura Millener, the mother of Max, CHOC’s latest Brineura patient, says she selected CHOC for Max’s condition, diagnosed in January 2021, because he needed to be treated right away. She first spoke to Dr. Wang on Jan. 11, and Max got his first infusion less than a month later.

“You could just tell how much he cares about his patients,” Laura says of Dr. Wang.

Max plays at CHOC while receiving treatment for Batten disease
Max plays at CHOC while receiving treatment for Batten disease

Says Dr. Wang, who has three children ages 10 to 18: “I count [my patients and my families] as my extended family, and I want the best for all of them.”

Laura and her husband, Matthew, a C-5 pilot in the U.S. Air Force, will be relocating to Quantico Marine Base in Virginia this summer from Pleasantville, Calif. Max, who has a 6-year-old sister, Ella, will continue his Brineura infusions at Children’s National Hospital in Washington, D.C.

“I don’t want to leave CHOC,” Laura says. “CHOC has done such an amazing job of making this easier on us. I am so grateful for the team.”

Dr. Wang says the Brineura infusions have made it possible for the patients to maintain meaningful interactions with their parents and siblings – despite having such conditions as, in Ely’s case, blindness.

Ultimately, the goal is for CHOC to be considered for a gene therapy clinical trial aimed at giving brain cells the ability to produce the missing enzyme by itself so Batten disease patients wouldn’t have to receive infusions every two weeks. Dr. Wang says such a trial could happen this fall.

“If there’s anything in my power I can do to help these families,” says Dr. Wang, “I’m going to try to make it happen.”

Learn more about CHOC’s metabolic disorders program.

Protecting against dry hands from frequent handwashing during COVID-19

Frequent and thorough handwashing remains a top method of protecting against COVID-19 and other viruses, but dry and cracked hands may be an unfortunate side effect in children and adults alike.

“Thorough handwashing is an absolute must during COVID-19, but it can lead to dry skin ,” says Dr. Angela Dangvu, a pediatrician in the CHOC Primary Care Network. “There’s a lot we can do to help, while still ensuring proper handwashing is maintained.”

dr-angela-dangvu
Dr. Angela Dangvu, a CHOC pediatrician

Here, Dr. Dangvu offers tips to help protect tiny hands against dryness without compromising thorough hand washing that’s so critical during the pandemic.

Choose soap carefully

Start by choosing a moisturizing hand soap, Dr. Dangvu says. Pick soaps that look more like lotions than  a typical soap with words like “moisturizing” or “conditioning” on the packaging. Unless your child is already using these and is accustomed to them, try to skip antibacterial or deodorant soaps.

If they are available, use soap and water instead of hand sanitizer, Dr. Dangvu advises. The alcohol content in the hand sanitizer can sting hands that are already dry and cracked. If hand sanitizer is only available, be sure that it has at least 60 percent alcohol to ensure a thorough cleaning.

Timing is important

Parents should remind their children that when they are at home, they ought to be washing their hands at these times:

  • Before and after cooking or eating
  • After using the restroom
  • After cleaning around the house
  • After touching family pets
  • Before and after caring for a sick family member
  • After blowing their nose, coughing or sneezing
  • After changing a diaper
  • After being outside — playing, gardening, walking the dog, etc.

Beyond these instances, children do not need to continually wash their hands at home, Dr. Dangvu says.

“Children are such great learners and have been so incredibly adaptable during the pandemic, and many have really taken on to importance of handwashing,” she says. “Too frequent handwashing can worsen dry and cracked hands.”

Creams, not lotions

Applying moisturizer to a child’s hands after hand-washing or bath time can also help prevent dry hands. Select products described as creams rather than as lotions: The former are richer and have more staying power than thinner products like baby lotions, Dr. Dangvu says.

“They tend to stay on and be a better moisture barrier,” she says. “Parents should use them right after children wash their hands. If skin is still a little moist, the cream will trap that moisture. Apply it after bath time too.”

A three-step approach

If a child’s little hands still become dry, Dr. Dangvu recommends a three-step approach:

  1. Start by regularly applying cream to the hands.
  2. If dryness doesn’t improve after a few days, move on to a petroleum-based ointment. Parents can intensify the therapy by applying ointment to hands before bed, and asking children to wear cotton gloves or even socks over their hands to lock in moisture while they sleep.
  3. If the condition doesn’t change after a few more days, parents can try an over-the-counter hydrocortisone cream.

If these steps don’t yield improvement, it’s time to consult the child’s pediatrician to rule out a bacterial infection or other condition, Dr. Dangvu says.

Learn more about the CHOC Primary Care Network.

5 strategies to help children with autism and feeding difficulties

By Amanda Regan, CHOC clinical dietitian

Picky eating is something often seen in children as they grow and explore new foods, but research shows that children with Autism Spectrum Disorder (ASD) can be five times more likely to develop feeding difficulties. This is often caused by sensory processing difficulties, which can cause a child to be sensitive to different tastes, textures, smells, appearances and even temperatures of food. Many children with ASD also tend to prefer foods that are processed and high in carbohydrates, rather than fruits and vegetables. Kids with ASD may also have a hard time focusing during mealtimes, causing them to consume inadequate amounts of calories and nutrients.

Managing these types of feeding difficulties can feel overwhelming for any parent. However, it is important to stay calm and make sure mealtimes don’t turn into a battle ground. If you have a child or loved one with ASD, here are some strategies that you can use.

Rule out medical problems

Sometimes children may refuse foods because they’re struggling with another condition, such as food allergies or constipation. If your child has extreme food selectivity, it is important to seek advice from your pediatrician to rule out any other medical conditions. Your pediatrician can also help refer you to any other services your child may need, such as feeding therapy, a GI specialist, or a dietitian.

Take small steps

Taking baby steps to introducing new foods can make a huge difference. You can start this by familiarizing your child with new foods even outside the kitchen. Try teaching your child about the new food or go to the grocery store together to buy it. Later, you can start to ask your child to take small steps to eating it by smelling, licking, touching and finally tasting the food.

Expose and repeat

Remember, sometimes it can take 15 to 20 times before any child accepts a new food. If your child consistently refuses a new food, try to serve it in a different way. It’s also important to remember that sometimes kids just simply don’t like a certain food. If your child continues to reject a food after 15 to 20 exposure times, don’t be discouraged, and move on to offering a new food.

Something old and something new

When introducing new foods, pair them with other foods your child already enjoys. This can help your child to feel more comfortable during the meal. Your child may also want some sense of control when it comes to choosing foods. Try to allow some options, such as letting them pick which veggie they want to try, or which preferred food they want to pair with the new food.

Minimize pressure

Adding pressure to eating or force feeding can make mealtimes even more stressful for you and your child. Try to maintain a positive atmosphere during meals. Children with ASD may need extra time to expand their diet variety. This means it is important to be patient and allow your child to take bites of new foods at their own pace.

Explore autism resources at CHOC.

The COVID-19 vaccine and teens: What parents should know

With California teenagers ages 16 years and older eligible to receive the COVID-19 vaccine beginning April 15, parents may have questions about the vaccine and what to expect afterward. Here, Dr. Angela Dangvu, a pediatrician in the CHOC Primary Care Network, answers some common questions about the vaccine and teens.

dr-angela-dangvu
Dr. Angela Dangvu, a CHOC pediatrician
What vaccine will my teen receive?

At this time, the Pfizer vaccine is the only vaccine authorized for use in people ages 16 years and older to prevent COVID-19. It is administered in two doses three weeks apart, injected into the arm muscle.

The Pfizer vaccine, as well as the Moderna vaccine, which is authorized for people ages 18 years and older, is an mRNA vaccine. When the vaccine is injected, mRNA – a strip of genetic material –enters a body’s cell and prompts the cell to build copies of spike proteins. These spike proteins are the bumps that protrude from the surface of coronavirus particles. The body’s immune system then learns to spot these spike proteins and produces antibodies that block the virus from entering healthy cells in the future.

Studies show that vaccine recipients achieve immunity about two weeks after receiving the vaccine’s second dose. Scientists are still learning about how long that immunity will last.

I have younger children. What is the status of vaccine research in children and adolescents?

To date, Pfizer and Moderna have enrolled children as young as 6 months in clinical trial studies. Janssen and Astra Zeneca also have plans to study their vaccines in younger age groups.

Is the vaccine safe for teens? Are there other risks for teenagers that might not be present for adults?

The Pfizer vaccine is absolutely safe for children ages 16 years and older. In clinical trials, enough teens participated to show that the vaccine is safe for people as young as 16 years. We have no reason to expect that children would tolerate the vaccine less favorably than adults would.

If teens are less likely to get sick from COVID-19, why do they need a vaccine?

Even though it is rare for children to get seriously ill from COVID-19, children who are 16 years and older have needed hospital care for COVID-19. This is especially true for teenagers with underlying health conditions such as weakened immune systems, obesity  or chronic lung conditions. Having the vaccine may also give parents and teens alike peace of mind to return to more typical activities like in-person instruction and participating in sports, which is great for mental health.

Are there any teens who shouldn’t get the vaccine? Should I talk to my pediatrician before scheduling the appointment?

There is no category of teenagers who shouldn’t get the vaccine, unless they have a known allergy to one of the vaccine’s components. Because it isn’t a live vaccine – a vaccine that uses a weakened form of a germ to prompt an immune response – the possibility for reaction is very small. There have been reports allergic reactions to the vaccine, but these occurrences are very rare. Vaccine recipients are monitored for 15 minutes after receiving the injection in case of any allergic reaction. Teens with other types of allergies beyond any vaccine component can feel safe receiving the vaccine.

Teens who recently received other vaccinations should wait two weeks before seeking the COVID-19 vaccine.

Parents are always encouraged to speak with their teen’s pediatrician if they have any questions or concerns.

Will the COVID-19 vaccine affect my child’s fertility?

Definitely not. Because it is an mRNA vaccine (see explanation above), the vaccine does not get incorporated into or change the DNA of the body’s cells in any way. There is no reason to worry that the vaccine will affect fertility or future offspring.

The COVID-19 vaccine was developed quickly. Should I be concerned about that?

No. The vaccine was developed quickly because scientists received additional money and resources to support from the government. This allowed scientists to follow all the typical processes but overlap some steps, which sped up the process. Also, it was easy to find volunteers to participate in clinical trials because many were excited by the possibility of receiving the vaccine. None of these factors compromised the quality of the trials, and the same processes for safety and effectiveness was followed. 

I’ve read about COVID-19 variants. Will the vaccine protect my teen against them?

We are still learning about how effective the vaccine is against variants. While there may be some decrease in immune response, the vaccine is still largely protective. An important step in fighting variants is to ensure as many people as possible get the vaccine. The more people who get sick – even mildly – with COVID-19, the more opportunity is presented for the virus to continue to mutate.

My teenager already had COVID-19. Should they have the vaccine?

Yes. We don’t know how long the immunity lasts from natural illness, and the vaccine is made to create a longer lasting immune response.

What if my teenager has COVID-19 now?

Your child should wait until they are feeling better and no longer need to isolate based on guidelines from the Centers for Disease Control.

What if my child has received convalescent plasma treatments?

Your child should wait 90 days to get the vaccine after receiving convalescent plasma or monoclonal antibody treatments. Your child’s pediatrician can help you determine when it’s appropriate to get the vaccine.

Can my child take their normal medications before the COVID-19 vaccine?

Your child should continue to take their normal medications as prescribed.

Can my child take acetaminophen, ibuprofen or an antihistamine before the COVID-19 vaccine to offset any potential side effects?

No. It is best to avoid preventatively administering these medications – either before the vaccination or right afterward if no side effects are present – because there is a chance they can decrease the immune response.

Do I need to accompany my child to the vaccination?

Yes. Anyone under 18 must have a parent or legal guardian present to receive the vaccine.

What should we bring to my teen’s COVID-19 vaccination appointment?

Bring a photo ID and a document verifying your teen’s date of birth. See more details from the Orange County Health Care Agency about what documentation is required for minors. There’s no need to bring your child’s vaccine records, as they will receive a card specific to the COVID-19 vaccine. It would be helpful if the teen wears a short-sleeved shirt, as the injection is administered into the arm.

What should my child expect at the COVID-19 vaccination appointment?

After checking in and taking care of paper work, the teen will be asked some questions about their health. The shot will be administered into the arm. After receiving the shot, the teen will be monitored for 15 minutes to ensure no adverse reactions. The teen will also receive a card indicating when they received the vaccine and information about the vaccine.

What should I do with their vaccination card?

Take a picture of it just in case anything happens to it and store in a safe place. There is no need to laminate it.

Do we really need to come back for a second COVID-19 vaccine?

Yes. Clinical trials that led to the Pfizer vaccine’s licensing incorporated two doses. So, the determined efficacy is based on two doses and we don’t yet know how effective one dose alone is. The Johnson & Johnson/Janssen vaccination is administered in one dose, but at this time it is only approved for people ages 18 and older.

What are the side effects of the COVID-19 vaccine? Are there any different side effects for kids?

The most common side effects are fever and feeling achy or tired. Any side effects should be relatively short-lived and ease within 24 hours. Because teens have more robust immune systems, it’s possible that they may feel these side effects more strongly than adults would. This is a sign that their immune system is mounting a response against the virus.

If side effects do appear after the COVID-19 vaccination, what can I use to treat them?

It is fine to treat side effects once they surface with over-the-counter pain medicine. Either ibuprofen or acetaminophen is fine, so long as the child hasn’t had previous reactions to these medications.

Should my child stay home from school after the COVID-19 vaccine?

If they have a fever, the teen should stay home. Beyond that, so long as they are feeling well, there is no need to limit activities.

What if my child is exposed to COVID-19 after they’ve been vaccinated?

Once two weeks have passed since their second dose, they have reached full immunity and there is no need to self-isolate after exposure to someone with COVID-19. Monitor them closely, however, to ensure they aren’t developing symptoms. If COVID-19 symptoms surface, begin self-isolation and contact your pediatrician.

After receiving both COVID-19 vaccine doses, can my child stop wearing a mask?

No. It’s important that they continue to take precautions against COVID-19. Though they are highly effective, the vaccine is not 100 percent effective, and while among a group of people, it’s impossible to know who is and who isn’t vaccinated.

How will the COVID-19 vaccine change socializing for my child?

Teens and families alike can definitely have more peace of mind about the safety of resuming more typical activities, which will be wonderful for mental health. In group activities, teens should still continue to wear masks. In one-on-one activities where a teen and their friend are both fully vaccinated, they can feel comfortable removing their masks so long as no one in either household is high-risk and unvaccinated.

Should I be concerned about having my older vaccinated teen around their younger siblings who are not vaccinated?

No. These children were already interacting with each other in the same household before one received the vaccine. The entire family can take comfort in knowing that one more person in household who has been vaccinated offers more protection for the whole family.  

Get more information from CHOC experts about COVID-19 and kids.

A day in the life of a pediatric psychologist who supports children with autism

As a pediatric psychologist, Dr. Jina Jang spends her work days supporting children who are receiving care at the Thompson Autism Center at CHOC, a centralized place for children to receive early diagnosis, advanced therapy and the possibility to reach their full potential.

Dr. Jina Jang, CHOC pediatric psychologist

Follow along for a day in the life of Dr. Jang

6:45 a.m. – If my alarm goes off before my 2-year-old wakes me up, it’s a lucky day. I get ready, feed my dog, and ensure my kid’s bag is ready for daycare. I go over my daily schedule with my mother, who helps with daycare drop-offs. If I have time, I usually stop by a coffee shop to pick up some much-needed caffeine.

8:15 a.m. – I arrive at the Thompson Autism Center at CHOC before my first patient is scheduled and quickly check messages and emails. On days that I arrive a little earlier, I will usually sit for a few minutes to admire the beautiful artwork throughout the center. A bubble theme is woven throughout the center’s artwork, and CHOC’s mascot, Choco Bear, is even hiding in a few of the bubble images. This artwork was among the many special considerations made when the center was being built. The center is designed throughout to ensure sensory experiences and transitions, lighting, stimulation spaces, signage and artwork are best suited for people with autism spectrum disorder (ASD).

Dr. Jang enjoys admiring the artwork in the Thompson Autism Center at CHOC, which was designed throughout to ensure sensory experiences and transitions, lighting, stimulation spaces, signage and artwork are best suited for people with autism. | Photo taken before COVID-19.

8:30 a.m. – My first patient arrives for an in-person evaluation. Today, we have a patient who was referred by their pediatrician for an ASD evaluation. We had an intake session via telehealth yesterday. This is a new hybrid appointment model designed to help limit in-person contact as much as possible during the COVID-19 crisis, but ensure we still see patients who need in-person testing. This morning, we will conduct testing to assess the child’s overall developmental functioning. We will also assess for symptoms of ASD using standardized observation and interaction.

10:30 a.m. – I have a phone consultation with one of my patients’ applied behavior analysis (ABA) therapists. Children with ASD often have many different care providers and it is important for us to work closely with them to ensure collaborative care with continuity and compassion.

11:30 a.m. – I conduct a therapy session via telehealth with a patient as part of the center’s co-occurring conditions program.  Children with ASD often have other medical conditions as well, and this program helps patients get all the care they need in one visit.  I am co-treating this patient with Dr. Jonathan Megerian, a pediatric neurologist and the Center’s medical director. Having all providers at one visit not only reduces the amount of stress and other barriers for our patients,  but it also allows us providers to map out the best treatment plan for our patients.

At the Thompson Autism Center at CHOC, children with co-occurring conditions may be seen by pediatric specialists and psychologists to help treat their ASD and other underlying conditions. Seeing all providers at one visit can not only reduce the amount of stress on the family, but it also allows providers to talk together and map out the best treatment plan for a child. | Photo taken before COVID-19.

12:30 p.m. – Time for lunch! Before the pandemic, I would go out to lunch with my colleagues or pick up takeout for us to eat together. These days, I usually just eat alone in my office. Dr. Megerian is usually my lunch buddy. He is not only a great mentor but a fun friend. He has guided our team every step of the way, providing invaluable guidance and advice. I feel truly blessed to have such an amazing work family. Although we can’t share a meal in the same room due to physical distancing precautions, we still try to get lunch together. Today, he picked us up chicken sandwiches from a restaurant next door.

1 p.m. – When I have some time between appointments, I catch up on notes and review reports from my psychology trainees to provide feedback. The trainees are pursuing post-doctoral fellowships and honing their training and education to work with children with ASD in the future.

1:30 p.m. – I have a meeting with the team. Today, we evaluated our current assessment flow with the entire team, including our wonderful medical assistants, nurses, resource specialists and social workers. As a new center, it is important for us to continuously evaluate our clinic flows and assess what is working and what needs to change. Also, I am in communication with the entire team, which also includes other psychologists and financial coordinators, all throughout the day.

The Thompson Autism Center at CHOC’s highly trained clinical team includes pediatric neurologists, psychiatrists, psychologists, developmental behavior pediatricians, occupational therapists, speech language pathologists, applied behavior analysis (ABA) therapists, child life specialists, social workers, nurses and more. | Photo taken before COVID-19.

2 p.m. – Now I’m meeting with our assessment team about the young patient I met with earlier today. After meeting with the psychology team, this patient and family also met with one of our developmental behavioral pediatricians and also had speech and occupational therapy evaluations. Our amazing child life specialist helped ease any fear or anxiety the child and family may have felt throughout their appointment. The purpose of this team meeting is to discuss test results and diagnostic impressions, and make recommendations as a multidisciplinary team.

2:30 p.m. – Next, we meet with the patient’s family to provide feedback. As a team, we typically provide feedback on the same day as assessment. This child received a diagnosis of autism and global developmental delay. It is never easy to be the first ones to tell a parent that their child has developmental delays. However, our goal is to provide families with comprehensive testing results and treatment recommendations without a delay. We understand that this new diagnosis may be overwhelming and stressful for our families. After a diagnosis, they get connected with our social workers and personal service coordinator to continue support with additional resources.

The Thompson Autism Center at CHOC offers a true family-centered approach. Support groups for parents, grandparents and siblings offer a place for families to support one another and learn everyday tips on how to juggle doctors, school, work and family life. | Photo taken before COVID-19.

3 p.m. – On to another therapy session.  Now, it’s a patient with ASD, attention deficit hyperactivity disorder, and sleep difficulties. For this patient, we created some tools and systems to help.

Many of our patients and families have experienced disruptions to their daily routines due to the COVID-19 pandemic. It’s crucial that we help families and children cope with disrupted routines; establish “new” routines; teach “new” norms like wearing masks and keeping distance; and teach families strategies to manage any increased challenging behaviors.

4 p.m. – My last session is a follow-up meeting with a patient with ASD who is also experiencing separation anxiety. We have been working on exposing the child to small, controlled moments of separation with hopes that will reduce anxiety over time.

4:30 p.m. – I have a one-on-one meeting with Matthew Lazari, the center’s executive director. My check-in meetings with Matt usually involve picking his innovative and smart brain to address any challenges we might have. Today, we talk about screening candidates for a new psychologist position.

5 p.m. – I send messages to patients through CHOC Link, a portal for CHOC patients and families to communicate with caregivers. I also check emails and check my schedule for tomorrow. With that, I say goodbye to my colleagues and head home to my family.