My daughter’s journey from seizures to surgery

By Celeste P., mom of CHOC Children’s patient Camila

When my daughter Camila was going through epilepsy surgery, I read stories about other kids’ success, and gleaned hope from them. As much as I learned from her doctors and nurses, it was helpful to read a parent’s perspective. I now share our journey in the hopes that it will be a source of comfort to other parents.

A mother’s instinct

During my pregnancy, an ultrasound showed that my baby had heart abnormalities. Camila underwent an MRI after she was born, and the imaging confirmed she had tuberous sclerosis complex (TSC) — a disorder that causes growths in multiple organs including the brain, heart, kidney and lungs.

The growths in her brain associated with TSC often cause seizures. In the days after Camila was born, I noticed the right side of her body seemed to twitch, and my instincts told me she was having seizures. I mentioned it to her nurse, but she dismissed my worries.

We were sent home as if everything were normal, but my gut told me something was wrong. That’s when I called CHOC Children’s. Ahead of our appointment with a CHOC neurologist, I kept a journal to track Camila’s episodes, including what her body did and how often it happened.

The journey begins

We met Dr. Lily Tran, a pediatric neurologist with special training in epilepsy, when my daughter was a few months old. Over the next few years, we tried several different treatment options including the ketogenic diet, steroid treatment and countless medications.

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Camila undergoing monitoring

Most treatments would follow the same pattern — the seizures would stop for a couple months, but then they’d come back stronger than they were before. Any progress Camila made during those seizure-free months would disappear, and she’d regress even further.

My husband and I just wanted to do everything possible for our daughter to have the best outcome.

Before surgery

Over the next few years, our lives revolved around trying to find a treatment that would stabilize her seizures. As open and willing as we were to try new treatment, this disease was relentless. Just before Camila’s fourth birthday, her condition finally regressed to the worst point it had ever been.

She stopped eating, was having 15 to 20 seizures per day, and was constantly throwing up. We had to pull her out of school. We couldn’t leave the house because she could no longer hold her head up, and I was scared to put her in her car seat. I had to take a leave of absence  from my job because my daughter’s health was deteriorating so badly.

We weren’t living anymore; we were in survival mode.

I had been pushing for surgery for a couple years but had wanted to try every other treatment option before we got to that point. When Camila stopped eating, smiling and going to the restroom, I was done trying treatment.

Dr. Tran confirmed through a series of tests that Camila was a candidate for surgery.

dr-lily-tran-choc-childrens
Dr. Lily Tran, a pediatric neurologist and epileptologist at CHOC Children’s

Guides on our journey

Before we met Dr. Joffre Olaya, a pediatric neurosurgeon at CHOC, Dr. Tran said, “I’ve worked with a lot of neurosurgeons in my career, and Dr. Olaya is amazing. I wouldn’t put your daughter in his hands if I didn’t trust him.”

joffre-olaya-md
Dr. Joffre Olaya, pediatric neurosurgeon at CHOC Children’s

We knew surgery was the right decision, and that we had a good team in place, but as a mom I was still worried.

Camila’s care team at CHOC walked us through the whole process from surgery to recovery. Since most of Camila’s seizures originated from the left side of her brain, the plan was to disconnect the right and left sides of her brain and remove a portion of her left temporal lobe. This essentially “quieted down” the left side of her brain.

Camila’s care team answered all our questions. Although their job was to care for my daughter, they did a good job caring for us as parents, too.

Any lingering worries I had subsided when I happened to meet the mom of another Dr. Olaya patient at a grocery store in the weeks before surgery. What started as a stranger complimenting my daughter’s blanket turned into sharing stories and experiences and ended with total peace of mind.

I needed another parent to tell me it was going to be OK. She told me not to be scared and reminded me that we were in good hands with Dr. Olaya. That woman also put me in touch with another mom whose child had undergone the same surgery Camila was scheduled for. Being able to connect with a parent who understood exactly what I was going for meant the world to me.

Recovering from epilepsy surgery

Camila’s surgery lasted more than six hours.

While she recovered in the hospital, Dr. Olaya visited her every single day to check on her. He had a wonderful bedside manner.

Deciding to put our daughter through brain surgery was the biggest decision my husband and I had ever made, and I don’t know if we would’ve been as comfortable with that decision without Dr. Tran and Dr. Olaya.

Camila spent a month at CHOC recovering from surgery, and then she moved to a rehabilitation facility. Extensive rehabilitation is needed to help the brain continue healing after surgery. While she was there, she developed hydrocephalus— fluid buildup within the brain. This prompted a trip back to CHOC for a surgery to drain the fluid, and a one-month hospital stay to recover from surgery.  We went back to CHOC for another surgery to drain that fluid and month-long recovery.

Life after epilepsy surgery

These days, Camila is doing amazing. Before surgery, I would have to look at old photos of my daughter to remember what her smile looked like. The first time I saw her smile after surgery, it made everything worth it.

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Camila celebrating her 5th birthday

Although her seizures returned a few months after surgery, they were less frequent and less severe than before surgery. We didn’t want to put her through another surgery, but fortunately we’ve been able to keep seizures at bay through other treatments.

As the parent of a child with special needs, we had learned over the years to find our version of normal. We had gotten used to Camila’s feeding tube – a necessity because she was unable to eat by mouth due to her developmental delay caused by TSC, and her frequent seizures. We had normalized frequent trips to the doctor and kept a bag in the car for emergency hospital visits. That was all normal for us.

We never pictured being able to do things that typical families do all the time: going to the grocery store or the mall, being away from home for more than two hours, traveling, or sleeping well at night knowing your child is safe. Now, those are all realities for us.

Besides regular checkups, we haven’t had to go back to the hospital since we were discharged from surgery recovery.

Pre-surgery, Camila wasn’t able to go swimming because of her frequent seizures. Now, she loves going to the pool and playing with other kids.

We had never let ourselves dream of traveling with my daughter, but we recently took family trips to Disney World and Mexico.

Camila_swimming
Camila swimming on vacation

Camila is back in school, and recently won awards for being the most involved and most improved.

All we want is for my daughter to be happy; everything else is just the cherry on top.

My advice to other moms

To another parent reading this whose child has epilepsy, know that you are not alone.

Know that it’s OK not to have all the answers. You will want to be strong for your kids, but this is a scary time. It’s OK to feel scared and sad. It’s OK to have bad days. Allow yourself the space and time to feel upset or sad about your situation.

I’m eternally grateful for the epilepsy mom I met in the grocery store, and the parent she introduced me to as well. In addition to those sources of support, my daughter’s care team helped me get involved with a support group for epilepsy parents. We help one another navigate the medication and treatment process from a parent perspective – something that at times can feel overwhelming. I would encourage any parent who has a child with epilepsy to seek out a similar group.

You and I may be strangers, but we’re really not — we’re family.

Learn more about the CHOC Epilepsy Program

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One family, two NICU stays

Each year, one in 10 babies in the U.S. are born prematurely. For the Cushing family, that statistic is two in two. Eleanor and Spencer’s eldest son, James, was born at just 24 weeks gestation. Their newest addition, Walter, was born at 31 weeks.

Today, both boys are doing well, thanks to respective stays in the CHOC Children’s small baby unit (SBU), a special unit within the neonatal intensive care unit (NICU) that focuses on caring for the unique needs of the smallest and sickest babies.

Big brother James

James Theodore was born at a local hospital weighing just 1 pound 6 ounces. He was transferred to CHOC when he was 1 day old and spent four and a half months in CHOC’s SBU.

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James, shortly after his birth.

James’ SBU stay – July to November – was filled with myriad health challenges, in addition to his goals of gaining weight and learning to breathe on his own. During his hospitalization, James fought off a bloodstream infection, was intubated multiple times to help him breathe, underwent a minor cardiac procedure and eye surgery, and worked through feeding challenges. By the time he graduated from the SBU, his weight was up to 6 pounds. He was discharged with supplemental oxygen and a pulse oximeter to monitor the oxygen levels in his blood and had multiple follow-up appointments to track his progress.

Throughout a lengthy hospitalization, CHOC staff made sure the Cushings still had the opportunity to celebrate traditional milestones with their new baby – including his first Halloween. He was dressed up as Winnie the Pooh – in a Build-A-Bear costume, since typical Halloween costumes were still too big for him. His parents and nurses donned coordinating outfits to round out the Hundred Acre Wood characters.

James is now 3 years old. He’s smaller than other kids his age and has a slight speech delay, along with a new prescription for glasses. But despite his early start in life, James is doing well.

Each year on James’ birthday, the Cushings return to CHOC’s SBU to visit the doctors and nurses who cared for him during his early days.

James visit_Dr. Bhakta
Each year on his birthday, James visits the CHOC staff who cared for him as an infant. He’s pictured here with his dad Spencer (left) and Dr. Kushal Bhakta, medical director of CHOC’s SBU.

“Despite James’ life-threatening obstacles, the SBU team was able to care for our son and save his life,” Eleanor says.

Little brother Walter

Due to her existing medical issues, Eleanor knew she would likely deliver early with any additional pregnancies. When she and Spencer were ready to add another child to their family, they switched medical plans so that she could eventually deliver at St. Joseph Hospital in Orange, right next door to CHOC’s expert neonatologists and other pediatric specialists.

Walter Rudolph was born at 31 weeks gestation and admitted to CHOC’s SBU, just like his older brother. At birth, he weighed just 3 pounds, 7 ounces. Walter’s goals in the SBU focused on growing and gaining weight. Six weeks after birth – and two weeks before his original due date – he was discharged from the hospital. In that time, he had grown to 5 pounds, 11 ounces.

walter_small baby unit
Eleanor holds her newborn son Walter, alongside smiling big brother James.

During Walter’s SBU stay, he was cared for by many of the same doctors, nurses, and developmental and respiratory therapists who cared for his older brother.

“When James was born, it was so nice to see so many familiar faces from our first SBU stay,” Eleanor says.

These familiar faces included Dr. Kushal Bhakta, medical director of CHOC’s SBU, and Dr. Michel Mikhael, a CHOC neonatologist.

“Our medical team was not only super smart, but they were also warm and compassionate,” Eleanor says. “There was always a theme with staff; they were always asking, ‘Do you have any questions? Can I get you anything?’”

Eleanor and Spencer are both nurses by trade, but at CHOC they got to focus on just being parents.

“Because of our medical backgrounds, we knew what the machines and monitors were doing, but we didn’t have to worry about any of that. We got to focus on just being parents,” Eleanor says.

walter-nicu-graduation
Walter, on his graduation day from CHOC’s NICU. His graduation cap was knit by CHOC volunteers, and his graduation certificate showcases his impressive growth in the NICU.

With two NICU stays behind her family, Eleanor’s message to CHOC staff is a simple one.

“Thank you to everyone who walked us through this journey,” she says. “We are a stronger family because of it.”

Learn more about CHOC's small baby unit

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From CHOC mom to CHOC employee

“You look like you could use a good cup of coffee,” Maria would say from time to time to a tired parent at CHOC Children’s at Mission Hospital. “Oh yes!” they’d reply as she’d make them a cup.

Maria understands that a warm cup of coffee doesn’t just help sustain a parent who’s running low on sleep, but also gives them back a small sense of normalcy while their child is hospitalized.

Maria, a former department assistant in the administrative offices of CHOC at Mission who recently transferred to the laboratory at CHOC Children’s Hospital in Orange, knows this all too well. Her son Nehemiah, who is now a happy and healthy 11-year-old boy, was born with a heart condition and spent the first four months of his life at CHOC.

“If I see a mom struggling, I would try to do my best to be there for them because I understood what they were going through” she says. “They’re comforted knowing that someone understands.”

Delivering next door to CHOC

Thanks to a prenatal ultrasound, Maria and her husband Juan knew there was a problem with their son’s heart. But doctors told them they wouldn’t know the extent of the problem until he was born. Maria chose to deliver her son at St. Joseph Hospital in Orange so that they’d be next door to CHOC, and he would have close access to any specialized care he might need.

Shortly after Nehemiah was born, doctors performed an echocardiogram, a common and safe procedure that helps doctors look at how the heart is working. Dr. Anthony Chang, a pediatric cardiologist who is today CHOC’s chief intelligence and innovation officer, was present at Nehemiah’s birth.

“I was so scared for my son, but I felt like he was in good hands,” recalls Maria. “Dr. Chang explained Nehemiah’s condition and that he needed to be transported to CHOC for emergency surgery. He said it was a race against time.”

Nehemiah was born with interrupted aortic arch and ventricular septal defect, a condition with a large hole in the heart and blockage of the main artery feeding the body. Normally a hole in the heart would be considered bad news, but that hole helped him live because it allowed blood to circulate until corrective surgery could be done.

When Nehemiah was two days old, he underwent his first in what would become a series of heart surgeries, performed by Dr. Richard Gates, CHOC’s medical director of cardiothoracic surgery and co-medical director of CHOC’s Heart Institute.

After Nehemiah recovered from surgery in the cardiovascular intensive care unit (CVICU), he was transferred to CHOC’s neonatal intensive care unit (NICU). He had a feeding tube to help him eat, but as a step towards going home, he needed to work on eating on his own.

Nehemiah spent his first Christmas in the hospital, and his parents weren’t sure when they would be able to bring their baby home.

The day after Christmas, Nehemiah’s condition worsened when he contracted a blood infection called septicemia. Babies under 3 months can contract this because their immune systems haven’t developed enough to fight off overwhelming infections that originate elsewhere in their body. Once he was stabilized, his care team opened his chest so they could administer a vacuum-assisted closure (VAC) to help soak up the infection. A suction pump device connected to a tube with a foam sponge on the end, which was placed into Nehemiah’s chest to soak up the infection. His dressings were changed regularly for several weeks until the infection was gone. Once he recovered, his care team closed his wound and he was transferred back to the CVICU.

It takes a village

It would be another few months before Nehemiah would be able to go home. During that time, CHOC became home for his family. Juan would shuffle back and forth between hospital and the family’s home, bringing Nehemiah’s siblings Ethan and Giovanni, who were 3 years old and 10 years old at the time, to visit their baby brother. Maria’s mom would help the family and visit as well. During Nehemiah’s months-long hospitalization, Maria stayed by his side and never went home.

“It took a village to get my little guy through this ordeal,” Maria said.

A four-month hospital stay

Before Nehemiah was discharged after more than four months in the hospital, his parents received education and training from his doctors and nurses, so they would be able to care for him at home. He was discharged with a feeding tube, oxygen tank and medication.

“We were so excited to finally bring him home. In a sense, it was like we all got to finally go home,” Maria recalls. “My other two kids had essentially been living with their grandma, I had been at the hospital, and my husband had been going back and forth. We were finally together under one roof.”

Nehemiah’s heart was fragile, so as he grew up he would sometimes get sick more easily, and more severely, than his brothers and friends.

“If he would get sick with just a little cold, he would go from zero to 10,” Maria says.

Sometimes that would include seizures, which lead to two hospitalizations.

A second heart surgery

Nehemiah has undergone one additional surgery to repair a blockage that developed between his heart and great aortic artery, called a subaortic membrane.

“After his last heart surgery, his seizures stopped, and he started becoming normal,” Maria said.

These days, Nehemiah, who loves sports and music, visits CHOC every six months for check-ups with Dr. Chang to see how his heart and arteries are progressing as he gets older.

“His team always wants to know as he is growing, are the arteries growing with him? Eventually, he’ll need another procedure someday,” Maria said.

Despite semi-frequent trips to CHOC, Nehemiah is not afraid of doctors because for him, doctor appointments are second nature, according to Maria. Nehemiah has spent so much of his life in and out of CHOC that he refers to it as “My CHOC.”

A few years ago, when Maria was looking for a new job, her personal connection to CHOC was a big factor in her search, she says.

“I felt like CHOC was somewhere I’d want to work because I had so many positive experiences here as a mom. Everybody was very friendly. The nurses were good with all my kids, and with me too,” she said. “I remember that little things went a long way, and I try to bring that to my work here now.”

Learn more about the Heart Institute at CHOC Children's

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Giving back through volunteering at CHOC: Rosemary’s story

By Rosemary Islava, current CHOC volunteer and mother of former CHOC Children’s patient Aliyah

When my daughter Aliyah was fighting cancer, my family spent a lot of time at CHOC Children’s Hospital.

Aliyah was diagnosed with a brain tumor at age 2. Before we were transferred to CHOC from a hospital closer to our house, I vaguely knew there was a children’s hospital in Orange, but I had no clue about the miracles and magic that happens within the walls of CHOC.

Throughout Aliyah’s journey, she underwent multiple brain surgeries and rounds of chemotherapy. Our family spent as much time by her side as possible. Aliyah’s siblings practically grew up at CHOC. At one point, Aliyah stayed in the hospital for seven months straight.

Rosemary and Aliyah
Rosemary and Aliyah

Aliyah beat cancer once, and then had to regain her ability to walk, talk, eat, sit, hold her head up—everything. As you can imagine, throughout this journey our family got to know practically everyone at CHOC—doctors, nurses, physical therapists, security guards, cafeteria staff, the sweet staff who cleaned Aliyah’s room, and more. They became like family to us.

Aliyah was always a very determined and caring little girl. Although she was soft-spoken, she was a firecracker. She taught me what true strength was, even though I think it should’ve been the other way around.

After a few years of remission, Aliyah’s cancer returned when she was 9, and she passed away shortly after her 10th birthday. The special way her doctors and nurses cared for her throughout her life didn’t end when she passed away—several of them even spoke at her memorial service.

Caring for others the way CHOC cared for my family

A year after Aliyah passed away, I joined CHOC’s mighty brigade of volunteers. Everyone at CHOC had done whatever they could – for years – to make Aliyah feel like the princess she was. They also made our experience as a family easy and comfortable, and I wanted to pay it forward.

You might assume that volunteering at a hospital is sad. If that were the case, I wouldn’t be here. For me, the opposite is true. Yes, sometimes people get bad news here. But more common that, volunteers and staff get a front-row seat to the resilience CHOC patients display every day.

I was open to serving anywhere the hospital needed me, but I was placed on the oncology unit. During my weekly volunteer shift, I get to serve in all sorts of ways, from helping nurses re-stock supply carts with much-needed supplies, playing board games with patients who need a buddy, or making a cup of coffee for a tired parent. I love assisting families through the discharge process—loading up a red wagon with their belongings and helping them get to their car. I celebrate with them when they can take their child home.

My family was treated so well during our time at CHOC, and it’s a privilege to pay it forward to other families. Whenever I leave CHOC, my heart feels full.

Each week, I proudly put on the traditional blue smock worn by hospital volunteers, along with my CHOC volunteer ID badge. My badge holder includes a photo of Aliyah. Sometimes patients will see Aliyah’s photo and ask about her. Everyone’s journey is different, so I’m careful about what I tell them.

Honoring Aliyah’s memory

My family has found other ways to honor Aliyah’s memory as well. Her birthday was September 19, during Childhood Cancer Awareness Month. Last year to celebrate her birthday – a few months after she passed away—we collected boxes of fun band-aids to support the hematology/oncology unit at CHOC’s band-aid drive. You might think a band-aid is a small gesture, but to a hospitalized child, a band-aid in their favorite color or bearing their favorite character, can be a bright spot.

rosemary_lemonade stand
This year on Aliyah’s birthday, her family held a lemonade stand to raise money for CHOC.

This year for Aliyah’s birthday we held a lemonade stand to raise money for CHOC. We had a great turnout—family members, friends, neighbors, community members, even the fire department showed up! We donated the funds raised to support research efforts by Aliyah’s oncologist, Dr. Ashley Plant.

Making my daughter proud

Throughout Aliyah’s battle with cancer, I felt so grateful for the way her team at CHOC cared for her. That’s why I’m back, volunteering at CHOC—to have a chance to pay it forward to other families and the staff here.

I think the way I am serving other CHOC families would make Aliyah proud.

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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 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.

dr-jeffrey-ho-choc-childrens-gastroenterologist
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 an allergy to barley and found that eating gluten contributed to her vomiting. Since her functional abdominal pain was accompanied by constipation or diarrhea, it is considered irritable bowel syndrome or IBS.

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

dr-Ashish-chogle-choc-childrens-gastroenterologist
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 neuro-stimulation, or neuro-stim—through the IB-stim,, a small device  placed behind her 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. The IB-Stim is a non-drug 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.

gastroenterology-clinic-exam-table
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.

marching band
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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