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The benefits of neurostimulation: Diyya’s story

Diyya never thought the treatment plan for her chronic and debilitating stomach pain would be a small neurostimulation device behind her ear.

She’d been traveling with her family when everyone came down with food poisoning. Hers just never seemed to run its course.

“Something still just felt a little bit off,” she says.

A few months later, she fainted during a cooking class — but since she has a family history of fainting, she wasn’t too concerned. Despite taking it easy and resting, Diyya’s stomach pain persisted, and she experienced rapid weight loss.

She started seeing a variety of gastroenterologists ― doctors who specialize in the digestive system ― and received a slew of potential diagnoses, ranging from lactose intolerance to stomach paralysis, a condition that prevents the stomach from emptying its contents properly and often causes nausea and vomiting.

Diyya’s stomach pain started affecting her day-to-day life. She was throwing up several times per week, and some days she was too sick or weak to leave the house. Diyya missed so much school that she needed special accommodations for schoolwork and standardized testing.

She also stopped eating flavorful foods she’d once enjoyed and stuck to plain foods like rice and roasted vegetables.

“I got used to eating bland food,” Diyya says. “I would rather eat boring food than eat something good and be sick.”

The quest for a diagnosis

Eventually, Diyya and her parents were referred to Dr. Jeffrey Ho,  a pediatric gastroenterologist at CHOC Children’s. He recognized that Diyya’s problem was related to the muscles in her digestive track and ordered an upper endoscopy, also called an esophagogastroduodenoscopy or EGD, to get a better idea of what was causing Diyya’s pain.

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Dr. Jeffrey Ho, a CHOC Children’s gastroenterologist

To perform an EGD, the doctor uses a long, flexible lighted tube called an endoscope. The endoscope is guided through the patient’s mouth and throat, then through the esophagus, stomach and the first part of the small intestine called the duodenum. The physician can examine the inside of these organs and detect abnormalities. Through the endoscope, the physician can also insert instruments to get samples for a biopsy. Diyya’s EGD and biopsy were normal.

She tried a few different herbal and traditional medicines, but nothing seemed to alleviate Diyya’s pain and symptoms. Hypnotherapy was helpful, but her main issues of stomach pain and nausea persisted.

A diagnosis and a path forward

Diyya was ultimately diagnosed with functional abdominal pain, meaning there’s a disconnect between the way her brain and gut communicate. She was also diagnosed with Celiac disease and found that an allergy to barley contributed to her vomiting.

Diyya started working with Dr. Ashish Chogle, a pediatric gastroenterologist at CHOC.

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Dr. Ashish Chogle, a CHOC Children’s gastroenterologist

“A lot of patients with functional abdominal pain have been told by physicians elsewhere that their pain is all in their head. That they’re just anxious. I tell them it’s true pain,” Dr. Chogle says. “For the first time, a doctor is justifying their pain and giving them a path forward.”

Diyya’s path forward was something called neurostimulation, or neuro-stim. With neuro-stim, a small device is placed behind the ear. Subtle electrical pulses originate in this device and travel through short wires and into needles attached to nerves in the ear. These gentle stimulations target nerves and aim to relieve chronic and acute pain. Neuro-stim is a non-narcotic alternative for acute and chronic pain that alters the way pain pathways function.

“It’s rewriting the nerves and helping my stomach pain feel better,” she says.

Neuro-stimulators are applied in a clinical setting, and remain active for a few days, while the patient resumes normal activity. On the fifth day, the patient removes the neuro-stim at home. On day seven, they return to the clinic and a new device is applied. This process typically repeats four times, for a month-long course.

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Diyya’s care team decorated the exam table to welcome her to the gastroenterology clinic.

Diyya felt tiny pulses behind her ear the day after her neuro-stim was applied.

“The cool thing about neuro-stim is that your ears get used to the pulses,” Diyya says. “You notice it at first, but then you don’t notice it after an hour or so.”

The benefits of neuro-stimulation

A week later, Diyya was already feeling better than she had in a year.

“What I would’ve taken for granted before, suddenly became achievable again,” she says. “First, I could bend over and tie my shoe without pain. Then I could go for a walk, and even go back to a full day of school.”

Diyya began to put on weight — a good thing, since she had lost weight from eating a minimal, bland diet. She was strong enough to start physical therapy, a necessary part of rebuilding her strength, since her muscles had atrophied from a lack of physical activity.

“Finally, I could eat more normal food again. I could start becoming more active. I felt like I was finally getting back to normal,” Diyya says.

Diyya began neuro-stim around the same time as another teenage patient, and they were able to swap tips and bond amidst a shared experience. Their moms did, too.

“Since your neuro-stim can’t get wet, it’s tricky to wash your hair,” Diyya says. “I’d been using a shower cap, and she had found a great dry shampoo. I brought her my favorite shower cap, and she brought me her favorite dry shampoo.”

Diyya’s mom, Priya, had a hard time seeing her daughter struggle and was comforted by meeting another mom who understood what she was going through.

“As a mom, it was very hard to see Diyya deteriorate right before our eyes. We went from having an active child who loved to eat to a child who was so weak that she couldn’t get up to go to school,” Priya says. “It felt like, as parents, we were on the journey alone. When I met another patient’s mom at the neuro-stim placement appointment, it was so wonderful to have someone to talk to who understood what we were going through. We exchanged information about different providers and tips for managing school absences.”

The device, approximately 1 ½ -inches in size, is discreet.

“I always wear my hair up, and anyone who did notice my neuro-stim assumed it was a hearing aid,” Diyya says. “When anyone at school asked about it, I was able to educate them about this really cool technology that they’d never heard of before.”

Diyya's neuro-stim
Diyya’s neuro-stim was discreet, and sat behind her ear.

Getting back to her old self

In addition to seeing physical benefits from her neuro-stim treatment, Diyya is getting back to her old self.

“Diyya is a new person after this experience. This experience has definitely taught her what the word resilience means. Before she was sick, everything from grades to sports came easily for her,” Priya said. “She is still working on accepting of her new normal. Sometimes she misses being able to eat whatever she wants or exercise without fatiguing.”

A talented musician, Diyya was able to join her school’s marching band, an activity she “wouldn’t even have thought possible” when she was sick, she says.

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Diyya and her mother after a marching band performance.

Sticking to a schedule also helps her feel her best. Starting high school and a new schedule led to a flare up of pain, so she did a second course of neuro-stim and is now back on track.

“For me, the level I’m at right now is wonderful,” Diyya says. “I can go out with my friends, go on bike rides with my dad, and travel with my family. I don’t know what it would be like today without my neuro-stim.”

A high school sophomore, she plays two instruments, is active on her school’s debate team, works part-time, and is considering a potential career in medicine.

Taking an active role in her healthcare

Of her experience as a CHOC patient, Diyya adds, “It was unusual for me to have a doctor talking directly to me, and asking questions of me, and not just talking to my parents. Dr. Chogle wanted to make sure that I was comfortable with everything, not just that my parents were OK with it. He spent a lot of time with us, and never made us feel rushed.”

Through these health challenges, Diyya has learned how to take an active role in managing her overall health.

“Diyya has learned how to communicate with the school nurse and her healthcare providers effectively,” Priya says.

As a parent, Priya is grateful that her daughter has access to cutting-edge treatment. Her team also recommended acupuncture and cupping, which have served beneficial during stressful times like finals week and AP testing.

“I am so grateful that Diyya has access to a healthcare team that takes the time to research what innovative options there are for the patients. Seeing the spark in her eye come back is priceless.”

This experience has made Diyya more sympathetic of others.

“Especially since my diseases were not very visible, I learned not to judge someone based off of just their looks,” she says. “You never know what they might be going through. It’s cheesy, but it’s true.”

Learn more about pediatric gastroenterology at CHOC

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Body mass index or BMI: What parents should know

By Dr. Angela Dangvu, a CHOC Children’s pediatrician

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Dr. Angela Dangvu, a CHOC Children’s pediatrician

 As a pediatrician, I spend much of my day doing well child visits for my patients. A big part of those appointments is looking at a child’s growth. Parents are usually interested in knowing their child’s weight and height percentiles, but they rarely ask directly about body mass index or BMI.

What is body mass index?

BMI is a measure of a person’s weight in relation to their height. It varies based on the age and gender of the person and is used to estimate the amount of body fat.

BMI is calculated starting at 2 years of age.  At this age it tends to be higher and will generally get lower until a child is 5 or 6 years old. Then, it will increase with age as they grow into early adulthood. Often, parents of children ages 3 to 4 ask me if their child is too skinny. They’ve begun to notice that their once chubby-looking toddler has thinned out. This is completely normal but can cause parents to overfeed their child because they think they are underweight.

Kids come in many different shapes, so they shouldn’t all have the same BMI. There is a wide range of BMIs that are considered normal. On the lower end, the normal range for BMI starts at the 5th percentile — meaning that 5% of children of the same age and gender will have a BMI lower than them. On the higher end of normal is a BMI in the 85th percentile, which means that 85% of kids of the same age and gender will have a lower BMI.

A BMI lower than the 5th percentile is considered underweight, while a BMI between the 85th and 95th percentile is in the overweight category. A BMI of more than the 95th percentile is considered obese.

When a child’s BMI indicates that they are underweight, it can be a sign of a medical condition that is preventing them from gaining weight. When a child’s BMI puts them in the overweight or obese range, we as pediatricians worry that they could be gaining too much weight, putting them at risk for diseases like diabetes or high blood pressure when they are older.

What body mass index is not

BMI is not a perfect measurement of a child’s body fat, but rather it is just one tool that we use in evaluating a patient’s overall growth and nutrition.

For example, a child being underweight doesn’t always mean they have a medical condition or are not getting enough calories. The child could be underweight because of genetic factors; perhaps both parents were thin as kids, and their child is taking after them.

How your pediatrician can help you improve your child’s BMI

As physicians we look at multiple sources of information to determine why a patient is underweight. We look at the growth chart, medical history and family history. We might order lab tests and refer our patients to a specialist depending on the findings. If the child appears to simply need to consume more calories, I usually encourage the family to incorporate some more calorie-dense foods into the child’s diet, rather than getting into a power struggle with their child about the amount of food they are eating.

If your child’s BMI is in the overweight or obese category, your physician should work with your family to determine possible causes, and solutions as well. Many parents already know that their child’s weight is a concern, but others may not notice that it has become an issue.  With my patients, I try to identify factors in their diet and activity levels to find potential areas for change. One thing to remember with children is that they will continue to grow into their teens, meaning that the goal doesn’t usually need to be weight loss. If they can slow their weight gain or even go for a period of time without gaining weight as they grow in height, their BMI will improve.

Learn more about CHOC’s Primary Care Network

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More than just a picky eater

Jack’s start in life was not an easy one.

He was born prematurely in northern California and immediately needed surgery for an intestinal blockage. He weighed only one pound and looked very sick.

The intestinal surgery was hard on his tiny body. “He was on life-support, and I was terrified,” said Meredith, Jack’s mom.

By five months old, he had gained weight very slowly and still struggled to keep food down.

Jack’s battle with food would last another 6 years.

“We looked everywhere for help but no one could give us any hope,” expressed Meredith. “Jack never ate much, showed signs of hunger or cried for food when he was a baby. We were given medication by our local doctor to make him hungry, but the side effects were horrible.”

Jack was much more than just a picky eater. Because of his prematurity, he missed normal feeding milestones. He didn’t learn how to experience food in his mouth and body or understand hunger signals. This made him uncomfortable and afraid when food was given to him.

By 6 years old, Jack was frail, his hair was falling out and he had been admitted to the hospital several times for dehydration. He would eat limited amounts of mac n’ cheese, cheeseburgers, strawberry hazelnut crepes and a specific type of pesto from the farmers market.

“People often would tell me that ‘Jack will eat when he’s hungry’ or ‘Kids don’t just starve themselves,’” says Meredith. “But my kid, who has feeding issues, would have 100 percent starved himself. Eating was stressful for him; it wasn’t fun, and it wasn’t enjoyable.”

Meredith felt lost until she found CHOC Children’s Multidisciplinary Feeding Program—she was afraid it was Jack’s last chance.

CHOC’s Feeding Program, started in 2003, is led by pediatric gastroenterologist Dr. Mitchell Katz. The first-of-its-kind program offers a comprehensive, positive and holistic approach to treating disordered feedings in a child and family-centered environment.

“I had a lot of anxiety coming here because I didn’t know what to expect or if it would even work,” says Meredith. “But the second I stepped into this place, it was wonderful. For the first time, I felt like I had support and a team who can help take the lead instead of feeling like it’s all on me.”

Jack, of course, loved being at a hospital made just for kids. He was soon a regular at Seacrest Studios—an in-hospital radio station run by CHOC’s child life specialists—making music videos, playing games and just being a kid.

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During Jack’s stay at CHOC, he enjoyed a special visit with Angels players.

The Feeding Program runs over the course of three weeks and each child’s schedule at the hospital is planned every step of the way. Meredith and Jack’s typical day looked like this:

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Jack’s feeding schedule

While most days follow the same schedule, Jack’s goals changed each week to focus on helping him learn new skills. During the first week, Jack was treated by a feeding therapist for all his meals while his mom watched from a separate room. A psychologist or social worker explained to Meredith the therapy and strategies being used along with Jack’s reactions. By the third week, feeding sessions began to mimic meal times at home. Both parents could participate and lead mealtimes so they would be confident and prepared to feed Jack at home.

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Jack’s care team loved the progress he was making in the feeding program, and Jack loved being at a hospital just for kids.

Jack made rapid progress. Before the program, he was consuming around 800 calories a day. By discharge he was consistently accepting 1,600 to 2,000 calories every day. This intake came from high-quality foods including vegetables, omelets, fruit, sandwiches and also, from foods that you would expect all kids to love: blueberry pancakes and bean and cheese burritos. These were all items that he would never have touched before.

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Before joining the feeding program at CHOC, Jack would barely eat. Now, his relationship with food is better and he’s getting stronger everyday.

Jack’s remarkable journey is a credit to his integrated and skilled team that has consistently seen a high rate of success. It is also a credit to the way Dr. Katz connects with his patients.

“Dr. Katz calls Jack ‘Nose’ because of the funny thing he used to do with his nose whenever he was introduced to new foods,” says Meredith. “In return, Jack calls Dr. Katz, ‘French Toast.’”

Coincidentally enough, if you ask Jack what food he loves now, he’ll emphatically say French toast…with lots of maple syrup.

Learn more about CHOC's feeding program

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5 tips for most effectively communicating with your child’s doctor

Considering the time off work, travel and other factors, getting a sick or injured child to a doctor’s appointment can be stressful. So, once you’re at the appointment, we know you want to make the most of your time with the physician.

After treating pediatric patients for more than 40 years, Dr. Mary Zupanc, co-medical director of the CHOC Children’s Neuroscience Institute, understands this desire among parents and caregivers.

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Dr. Mary Zupanc, co-medical director of the CHOC Children’s Neuroscience Institute

To help, she offers these five tips for most effectively communicating with your child’s doctor of any specialty:

  1. Develop your child’s personal story beforehand.

Finding a clinician who will take the time to hear your child’s personal story is critical. Have your story ready before your appointment, and include these elements:

  • A written timeline of signs and symptoms
  • A note of when you or someone else first noticed that something was different or unusual
  • A note about what specifically concerned you
  • Any relevant photographs or videos

2. Practice two-way communication.

Not only should a clinician want to hear your story, but they should also draw out more details through conversation and asking questions. Here’s what you should expect and how you can do your part:

  • A good clinician will take the time to listen to the story you have to tell.
  • They will ask questions but avoid interrupting you.
  • They will ask you to clarify parts of your story, such as the timeline or details about symptoms.
  • They should ask you about your questions. Write these down in advance and don’t be timid about asking.

 3. Remember that doctors and nurses are scientists who like facts.

Clinicians are like detectives who search for clues. You can help them by providing key factual details. Before your appointment, take some time to draw up some key facts:

  • Information about other previous diagnostic tests and their results
  • Information about previous medication trials
  • A detailed medical history, which includes a mother’s pregnancy, labor and delivery history; other illnesses; current and past medications; and recollection of similar symptoms in other family members.

4. Visual communication is also key for providers.

In addition to hearing from you, the clinician will want to observe the child to see for themselves what’s happening.

  • A physical examination, as well as a neurological examination, can provide important clues to the diagnosis.
  • A good clinician will provide initial impressions and ask for your input.

5. Strategies are available to help make communication even better.

A good physician will work diligently to effectively and sensitively communicate with their patients and families. But here are other ways to further enhance communication:

  • Bring along another family member or advocate.
  • Prepare a list of questions ahead of time with specific requests about further diagnostic studies.
  • Bring your own research to the clinic visit about diagnosis and management strategies.

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Music therapy in a mental health setting

Music therapy has been part of CHOC Children’s specialized therapeutic programming for more than 10 years. The program has grown recently, due to increased awareness of its effectiveness and a growing need among CHOC patients. We sat down with Kevin Budd, a board-certified music therapist in CHOC’s Mental Health Inpatient Center, to discuss the benefits of music therapy in an inpatient psychiatric setting.

Q: Music therapy is more than just listening to music. What encompasses this practice?

A: Music therapy is the clinical and evidence-based use of musical interventions to accomplish individualized goals. This occurs within a therapeutic relationship between a credentialed professional who has completed an approved music therapy program, and a patient. During music therapy, we address physical, psychological, cognitive and/or social functioning challenges for patients of all ages. Essentially, we utilize evidence-based, musical interventions for non-musical outcomes; meaning music is the tool which helps support a patient’s non-musical need or goal.

Q: How does music therapy support clinical goals?

A: A patient’s clinical goal is the starting point for determining which musical intervention will be most effective. In the Center, these goals could include: mood regulation, self-expression, self-esteem, anxiety, interpersonal effectiveness, treatment motivation, positive coping skills, and more. There’s no one-size-fits-all treatment when it comes to music therapy within mental health. We might work towards their goals several different ways, including: focused music listening, songwriting, song discussion, group instrument playing, music and relaxation, singing, and many others.

For example, if a patient’s clinical goal is to increase identification of positive coping skills, we might work on lyric analysis within the patient’s preferred style of song. We could discuss triggers, resilience, and negative life situations in the song. During this lyric analysis, I can help navigate the discussion to include the patient’s interpretation of the musician’s experience and how it might relate back to their own life. After this discussion, we could rewrite the chorus of the song including identification of a negative situation and a positive coping skill to help address it. The patients can then be encouraged to share what they created— by singing, spoken word, or other creative means.

Within this exercise, not only has the patient identified a negative situation and how to better cope with it within a creative medium, they have experienced the active utilization of a positive coping skill, built up confidence after completing and sharing their creation, felt more connected with others in the group due to being vulnerable and feeling validated, improved their mood from the positive experience, and formed a sense of increased treatment motivation.

Music therapists utilize assessment, treatment planning, and evaluation to determine whether a patient’s current methods of music therapy are meeting their needs. Without treatment goals, there could be no effective music therapy.

Q: What kind of impact have you seen in mental health patients who have participated in music therapy?

A: In any setting, music has an instantaneous effect on our bodies — mentally, physically and behaviorally.

Patients have shared several stories about how music therapy has helped them with their clinical goals. It’s amazing how one musical intervention can address multiple goals.

Sometimes it’s hard for patients to verbalize past trauma or express their current struggles. But with music therapy, they can discuss a song that may relate to their current life situation— whether that be bullying, family problems, feeling hopeless, having anxious thoughts, or another stressor. During this process, patients may be able to process and verbalize more, since the lyrics are an easier gateway for expression.

During group instrument playing, patients who might have difficulty with interpersonal relationships are able to cohesively and successfully play music together in a positive and supportive space without the need to talk.

During group ukulele playing, patients can work on distress tolerance and problem-solving skills while persevering through a challenging task — and by the end, they have improved self-esteem.

Q: What is unique about music therapy in an inpatient psychiatric facility?

A: Music therapy can look different in the inpatient psychiatric setting than in other areas of the hospital.

Within the Center, goals for music therapy are focused on combatting the reasons why a patient is admitted— these could include suicidal ideation, depression, anxiety or other factors that keep these youth from participating in a healthy way in daily life. The goal of the MHIC is to stabilize these patients and provide them with as many resources as possible to cope with their mental health challenges.

Music therapy does just that and provides opportunities for patients to learn, process, practice and discover new skills through tailored music interventions such as group instrument playing, songwriting, music listening, song discussion, beat-making, singing, rapping, and many other techniques. The MHIC offers opportunities for group work, that allows for a diverse group of kids and teens to come together and express themselves in a supportive, safe and validating environment. Individual music therapy sessions are available to patients in the Center who need additional one-on-one support to complement their other treatment.

Q: Why did you want to become a music therapist? Why a mental health setting specifically?

A: I’ve gone through my own mental health challenges throughout my life, and I always found that music validated my journey. Music helped me distract myself and process my feelings. Music met me where I was in the moment and gave me hope. It also gave me a platform to express myself in ways I didn’t know how to otherwise.

When considering career paths, I wanted to find a way to harness the role music had played in my life in a therapeutic way. After receiving my undergraduate degree in music, I developed a special interest where psychology and music intersect—the space where music therapy truly breathes. I pursued my graduate degree in music therapy, and then became a board-certified music therapist.

I feel humbled and fulfilled to be able to support kids and teens at CHOC with the tool of music. By creating an authentic therapeutic alliance, I can support them through a harsh and challenging time in their lives. I am thrilled to be on the front lines of the music therapy program at CHOC Children’s and I look forward to supporting its growth and success in treating pediatric patients.

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 and to receive tips and education from mental health experts.

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