Navigating summertime while living with IBD

Anyone living with inflammatory bowel disease (IBD) knows that many different environmental factors can influence their disease – summertime included. Here are some tips from the gastroenterology team at CHOC Children’s for navigating the season.

  • Vitamin D is so important for IBD. Many people living with IBD have low vitamin D levels, so the summer months can help with topping up on the sunshine vitamin. Vitamin D has the potential to improve disease progression through anti-inflammatory immune responses. Enjoy the warmth of the sun, but don’t forget your sunscreen! Choose a sunscreen with SPF 30 or higher, apply 30 minutes before sun exposure and reapply every two hours. Wear protective clothing and don’t forget your sunglasses and hat!
  • Talk to your doctor about photosensitivity. It is important to talk to your doctor to find out if any of the medications you are on to treat Crohn’s disease or ulcerative colitis could cause sensitivity and skin inflammation.
  • Take a good look at your skin and schedule an annual skin check. IBD or IBD treatment may affect your skin. Examine your skin head-to-toe once a month for new spots or growths. Some people may experience tender bumps, sores or rashes.  Make sure you schedule an annual skin check with your primary care provider or a dermatologist.
  • Hydrate! As the days get hotter, risk for dehydration increases. People with IBD are at greater risk for dehydration due to water loss from diarrhea or vomiting. Remember to carry around a water bottle wherever you go. Recommended water intake for pre-teens and teens who weigh more than 100 pounds is 64 ounces per day, or about eight 8-ounce glasses of water per day unless you have a preexisting condition that limits the amount of water you can intake, such as some people with heart and kidney conditions. Drink more with physical activity or long periods of being in the sun. If plain water is getting boring, add in fruits and veggies, unless of course you are on a low-fiber diet!
  • Monitor your screen time. While it’s tempting to watch your favorite shows and browse social media to fill up your free time, keep screen time to less than two hours per day. Whether you are feeling good or bad, physical activity helps both the brain and body, so try to incorporate 30 to 45 minutes of aerobic activity, where you get your heart rate up and break a sweat. Exercise may have anti-inflammatory effects. Physical activity is also linked to better bone health and mental wellness in children with IBD.
  • Practice COVID-19 precautions. People diagnosed with IBD may be considered immunosuppressed, which means they may be at higher risk for severe illness if they contract COVID-19. To help prevent this, avoid large gatherings, practice social distancing, avoid having close contact with people who are sick, and wash your hands frequently. Use soap and water and wash for at least 20 seconds or use hand sanitizer that contains at least 60% alcohol.
  • Be safe and have fun. Get back to nature, swim and explore the outdoors. Remember to pack a face mask along with a water bottle and practice social distancing when you pick a trail or spot to swim. Being active benefits mental wellness and overall wellbeing.
  • Get your sleep. Amid all the fun, make sleep a priority. A lack of sleep can delay healing which worsens IBD symptoms. Develop a relaxing routine, read a book, take a bath, shut off electronics and make it a goal to sleep at least eight hours per night.
Learn more about the CHOC Inflammatory Bowel Disease Program

Related posts:

  • 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 ...
  • 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 ...
  • IBD vs. IBS: How to tell the difference
    It’s normal for kids to get stomach aches, but some kids have bad stomach pain all the time. If your child has abdominal pain, cramping, gas, bloating, diarrhea or constipation, ...

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

Related posts:

  • Navigating summertime while living with IBD
    Anyone living with inflammatory bowel disease (IBD) knows that many different environmental factors can influence their disease – summertime included. Here are some tips from the gastroenterology team at CHOC ...
  • 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 ...
  • IBD vs. IBS: How to tell the difference
    It’s normal for kids to get stomach aches, but some kids have bad stomach pain all the time. If your child has abdominal pain, cramping, gas, bloating, diarrhea or constipation, ...

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.

jack-with-angels-players
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:

jack-feeding-program-schedule
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.

jack-face-paint
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.

jack-soccer
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

Related posts:

IBD vs. IBS: How to tell the difference

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

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

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

Inflammatory Bowel Disease

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

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

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

IBD symptoms

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

Irritable Bowel Syndrome

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

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

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

IBS symptoms

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

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

Learn more about the CHOC Inflammatory Bowel Disease Program

Related posts:

  • Navigating summertime while living with IBD
    Anyone living with inflammatory bowel disease (IBD) knows that many different environmental factors can influence their disease – summertime included. Here are some tips from the gastroenterology team at CHOC ...
  • 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 ...
  • 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 ...

Living with polymicrogyria: Angelina’s story

Johanna and her husband Graham were expecting a healthy baby.  Already parents to one little girl, they were looking forward to expanding their family.

At Johanna’s 33-week anatomy scan, she and Graham were thrilled to learn they were expecting a girl, but shocked to learn she might have club foot, a birth defect where the foot is twisted out of shape or position. They learned there was a chance it could be due to a neurological defect since everything else was showing up as normal.

“We started mentally preparing ourselves for our baby to have a club foot,” Johanna said. “We had another anatomy scan, but they couldn’t say for certain what was going on.”

On January 26, 2018 Johanna delivered a baby girl named Angelina via c-section. A neonatologist was in the delivery room in case Angelina needed immediate medical attention after birth. She was having trouble swallowing and was monitored in that hospital’s neonatal intensive care unit (NICU).

Three days later, a CHOC neonatologist rounding at the delivery hospital recognized that Angelina needed a higher level of care and a bigger team of specialists. He suggested that she might need an MRI to give doctors a better look at her brain, and determine if her condition was neurological.

“Even though I’d never been to there, I knew that when it was an option to go to CHOC, you go to CHOC,” Johanna said.

Their older daughter Genevieve had been born at St. Joseph Hospital in Orange, next door to CHOC Children’s Hospital.

“I was so freaked out before I had my first child, because of all the things that can go wrong during childbirth. I delivered Genevieve at St. Joseph because I liked knowing that CHOC as right next door if we needed them” Johanna said. “When they gave us the option to send Angelina to CHOC, there was no question—we just immediately went.”

angelina-baby-choc-childrens-nicu
Angelina during her stay in CHOC Children’s NICU.

Angelina was admitted to CHOC’s NICU and evaluated by neonatologist Dr. John Tran, of CHOC’s neurocritical NICU. Special rooms of CHOC’s NICU are designated for the neurocritical NICU, where neonatologists and neurologists have the expertise and equipment to carefully treat babies with neurological issues.

An MRI showed that Angelina had polymicrogyria, a condition characterized by abnormal brain development. Johanna and Graham had never heard of this condition and had a hard time processing the diagnosis. Then they met with Dr. Donald Phillips, a pediatric neurologist at CHOC.

He explained to the family that typically, the surface of the brain has many ridges and folds, called gyri. In babies born with polymicrogyria, their brain surface has too many folds that are too small to process information received, which leads to problems with body functioning, similar to the effect a stroke can have on the brain.

Dr. Tran explained the spectrum of care for polymicrogyria. Some patients are nonverbal, some go to school, and some even live with this condition and never know. It was too soon to tell where on that spectrum Angelina would fall.

“Caring for babies with neurological conditions can be difficult. Not only are you medically treating a newborn baby, but you are also counseling a family and giving them an uncertain prognosis,” says Dr. Tran. “In the neurocritical NICU, our first goal it to treat the baby’s underlying condition. The second goal is to educate the most important members of our care team― the parents. We know that the NICU is not a part of the birth plan, but our job is to help alleviate some of the anxiety that comes with uncertainty. We strive to optimize the potential of our patients, whatever it might be, as they go home.”

The diagnosis was a lot for her parents to take in.

“We knew we were getting the best care for our daughter, but it was such heavy news,” Johanna said. “Even with a typical kid, we don’t really know what their life will be like. Every life is a gift. Once I started going towards that mentality, I realized that nothing is certain, even with typical kids.”

At her delivery hospital, one of the red flags that Angelina needed a higher level of care was that she kept crashing when she was breastfeeding.

“It made me freaked out to feed my daughter,” Johanna said.

Soon after coming to CHOC, Angelina began swallowing therapy. When someone experiences swallowing difficulty, they are at risk for food or liquid entering their lungs, called aspiration, which may lead to pneumonia. Karin Mitchell, a speech and language pathologist who specializes in the NICU setting, worked with Angelina on swallowing safety. Karin guided baby Angelina through exercises for her mouth and tongue to learn how to properly swallow saliva. Then, they could work on breastfeeding support and syringe feeding.

Angelina couldn’t move her legs when she was born, and her parents weren’t sure if she ever would. Thanks to physical therapy, today she can bend her legs more than 90 degrees.

Throughout their stay in the NICU, Johanna and Graham were thankful to have the ability to sleep overnight in their daughter’s private room. Because Angelina was born during flu season, her 3-year-old sister couldn’t visit the NICU. Her parents would stay at CHOC all day, go home to do their older daughter’s bedtime routine, and then one parent return to CHOC to sleep alongside their new baby.

“We had the privacy we needed, and I felt comfortable doing kangaroo (skin to skin) care,” Johanna said. “I hadn’t planned on my baby staying in the hospital, and at least having our own room, and even something as small as being able to watch TV gave me a small sense of normalcy.”

Johanna and Graham also appreciated the sense of normalcy provided by a Super Bowl party thrown for parents on the unit. An infant CPR class offered on the unit helped them feel more prepared to eventually take their baby girl home.

For big sister Genevieve, CHOC offers an innovative webcam system so family members can be together and bond with their newborns when they can’t be at the bedside. The system allows families to see real-time, live video of their infant remotely, from anywhere they can securely log onto the internet.

“CHOC had a lot of things in place, like the secure camera in Angelina’s room, to make things easier on us as a family,” Johanna said.

A month after she was born, Angelina got to go home for the first time.

angelina-first-halloween
Angelina dressed as a pumpkin on her fist Halloween.

“We were so ready to take her home, and finally be together as a family,” Johanna said. “But it was still a little nerve-wracking. We bought four different types of baby monitors; we were used to seeing her surrounded by machines.”

A few weeks later, Angelina began swallowing therapy twice per week and physical therapy three times per week. Now 15 months old, the amount of progress she has made has made her parents proud.

She couldn’t move her legs at birth, but a year later she is rolling and reaching. Her parents credit her CHOC physical therapist Lauren Bojorquez.

“Lauren didn’t just think of what Angelina was doing now; she was always thinking ahead about what would benefit her in the future,” Johanna said.

For example, Lauren and Angelina worked on rolling because it would eventually help her learn to sit. When babies roll, it helps develops muscles that will later help them sit.

angelina-speech-therapy
Angelina with her speech and language pathologist Annie.

Meanwhile, Angelina was working with CHOC speech and language pathologist Annie Tsai to learn how to cough, swallow, and accept food by mouth. Swallowing therapy focused not on quantity of food consumed but on quality of how the child feeds or swallows safely. Angelina’s work with Annie focuses on movement, strength and coordination within the mouth to prepare for eventually swallowing food.

Angelina still receives most of her nourishment through a feeding tube, also called a g-tube. The tube can stay in a patient’s stomach for months or years and allows the child to receive fluids, medicines and nutrition when they can’t take in enough nutrition by mouth. Every few months, Angelina sees gastroenterologist Dr. Jeffrey Ho for follow-up appointments for nutrition, feedings and g-tube care. Dr. Ho remains in close contact with Annie, her speech and language pathologist.

“Being able to eat in a typical manner is always the goal,” says Dr. Ho. “Every baby and child are different. Right now, we are focusing on what we can do to better optimize her potential to orally feed.”

Now, Angelina can sit in a highchair, bring her hands to her mouth, accept small tastes by mouth and better clear her congestion especially when she’s sick.

“Something I hadn’t realized before Angelina was how big a part food plays in our culture. As people get older, going out to eat or meeting for coffee is a social activity. I was sad that she wouldn’t get to have those same experiences,” Johanna said. “When she started to accept tastes by mouth, it made me think of her in the future, and being able to go out with friends and at least taste something, and still participate socially.”

To further practice feeding therapy at home, Angelina has a mesh pacifier typically used to soothe teething babies. Her parents often put the same foods in her pacifier as the rest of the family is eating. So far, there hasn’t been a food she’s tried that she hasn’t liked.

Angelina’s paternal grandma was an adult speech and language pathologist by training. When Angelina started speech therapy, she updated her license and certification to help her granddaughter at home. She comes to some of her sessions at CHOC and learns from Angelina’s care team.

Also participating in therapy is big sister Genevieve, who helps hold the pacifier and can even spoon-feed her baby sister, with a little bit of help.

angelina-family-disneyland
Angelina with her family at Disneyland.

“I am super grateful for CHOC,” Johanna said. “That’s why our family started participating in CHOC Walk when Angelina was born.”

These days, Angelina likes playing with toys, playing with her big sister, and listening to all types of music.

“I had a lot of preconceptions about disabilities and special needs,” Johanna said. “Having a child with special needs is not what I thought it would be. It’s better than that.”

Share your own CHOC story

Meet more CHOC patients: