Why One Mom Is Thankful for CHOC This Year

By Karen Stapleton, CHOC parent and mom of Noah

Happy Thanksgiving! My name is Karen Stapleton, and my son Noah is a patient at CHOC Children’s. As I prepare to celebrate the holidays with my family, I’m grateful we can be together since we have so much to celebrate. I’m also grateful for Noah’s many doctors and nurses at CHOC because without them, my son wouldn’t be alive.

Noah’s birth story

When I was 29 weeks pregnant with Noah, we learned that he had Down syndrome. Another prenatal ultrasound showed an abnormality in his heart, and we were referred to Dr. Pierangelo Renella, a pediatric cardiologist at CHOC, who diagnosed Noah with tetralogy of fallot, a serious heart defect that causes poor oxygenated blood flow from the heart to the rest of the body. I was scared, but having been a CHOC patient myself as a child, I knew my son would be in good hands.

Karen and Noah in the NICU, shortly after Noah was born
Karen and Noah in the NICU, shortly after Noah was born

On July 27 of last year our lives changed forever— Noah was born! I chose to deliver at St. Joseph Hospital in Orange so that my son could be as close to CHOC as possible. When he was born, there were so many doctors and nurses around. I saw Noah quickly enough to give him a kiss before he was whisked away to the Neonatal Intensive Care Unit (NICU) at CHOC.

Shortly after birth, Noah’s care team also diagnosed him with Apert syndrome, a genetic disorder that causes certain bones to fuse early. For Noah, that was his skull, fingers and toes.

 

A series of surgeries begins at 3 days old

Noah’s first surgery happened just three days after he was born. Due to the complexity of Noah’s conditions, the surgery was a team effort from multiple CHOC specialties. Noah’s gastroenterologist Dr. Jeffrey Ho; his team of cardiologists Dr. Renella, Dr. Michael Recto, Dr. Anthony McCanta, and Dr. Gira Morchi; his pulmonologist Dr. Amy Harrison; his otolaryngologist Dr. Felizardo Camilon; and the entire NICU team came together to prepare him and get him through that surgery.

It was a success, and 31 days after he was born, Noah finally came home! Weekly trips back to CHOC’s clinics included visits to gastroenterology, pulmonary, cardiology and craniofacial specialists. It was another team effort to prepare Noah for a second open heart surgery that he would eventually need.

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Noah and his cardiothoracic surgeon, Dr. Richard Gates

But a few weeks later, Noah had respiratory complications, which lead to an emergency open heart surgery at just 2 ½ months old. Thanks to Noah’s cardiothoracic surgeon, Dr. Richard Gates, and Noah’s fighting spirit, he was able to come home shortly after surgery.

Celebrating Christmas at CHOC

Just days before Christmas last year, Noah had to be admitted to CHOC for respiratory failure. It was scary to see my baby sedated for 19 days. Dr. Juliette Hunt, a critical care specialist, recommended that Noah undergo a tracheostomy, where a small opening is made in his windpipe and a tube is inserted to help him breathe. Making a decision like that is hard and scary for a mom, but I had complete trust in Noah’s team, and if they knew it would help Noah breathe easier, then I knew it was the right thing to do.

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Noah celebrated his first Christmas at CHOC

After that, Noah started to thrive. He gained weight and became strong enough for his next open heart surgery with Dr. Gates. After a mere six days in the Cardiovascular Intensive Care Unit following this surgery, Noah got to come home again!

Even when Noah is doing well, sometimes it can be scary to care for him when he’s at home. During one of our hospital stays, I confided this fear in one of Noah’s favorite nurses, Karissa. She gave me specific tips on what to do during his tummy time and baths, and gave me the courage to care for my son. She encouraged me, and reminded me that CHOC wouldn’t advise me to do anything that wasn’t safe.

Noah and Karissa, a registered nurse at CHOC

Noah’s first birthday

All of this is a lot for a little baby to go through before his first birthday, but Noah has always surprised us and pulled through. Celebrating his first birthday meant more than celebrating his first year of life; it meant celebrating every fight Noah had won over the last year, and it meant appreciating a milestone that at times we thought we might never reach. We decided a super hero theme was perfect for his party because we think of Noah as our little super hero.

Noah celebrating his first birthday

After his birthday, Noah continued to flourish and grow! He started rolling over and actively playing, and he has not stopped smiling.

This progress allowed us to prepare for his next major surgery, a frontal orbital advancement, to reshape his skull and forehead that has fused too early due to Apert syndrome.

Before surgery could begin, the doctors needed to cut Noah’s hair to make a safe incision in his skull. We marked another one of Noah’s milestones at CHOC— his first haircut!

Noah received his very first haircut at CHOC from his neurosurgeon Dr. Michael Muhonen, prior to a skull surgery.
Noah’s very first haircut happened at CHOC. He received it from his neurosurgeon Dr. Michael Muhonen, prior to skull surgery.

With the expertise of his neurosurgeon Dr. Michael Muhonen and his plastic surgeon Dr. Raj Vyas, and a very short stay in the Pediatric Intensive Care Unit, Noah came home again! After yet another successful surgery at CHOC, his brain can now continue to grow.

Noah has more hurdles and additional surgeries ahead of him, but even with how much he’s fought, he continues to smile. He’s not cranky and he doesn’t cry. He’s enjoying every single day he gets to be here – and that’s the life he has taught me to live too.

If Noah’s care team ever needs a reminder of why they do what you do, I tell them: My son would not be here today if it were not for each and every one of them here at CHOC. And for that, my family will be forever grateful.

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Seizure-Free at Five, Thanks to Epilepsy Surgery and ROSA Robot

Five-year-old Ian Higginbotham recently enjoyed his best summer yet. He experienced his first family vacation. He learned to swim and ride a bike. He got himself ready for kindergarten. These are milestones most kids and parents, alike, eagerly welcome. But there was a time when Ian’s parents weren’t certain their son, who was born seemingly healthy, would enjoy such happy pastimes.

Ian began talking and walking in his sleep as a toddler. When the episodes, including night terrors, increased in frequency and severity, his mom Lisa made an appointment with the pediatrician. One day, Lisa knew something just wasn’t right and didn’t want to wait for the appointment to get Ian checked out. She and her husband Derek took him to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital. To her surprise, doctors diagnosed her son with epilepsy.   Ian’s “sleepwalking” and “night terrors” were actually seizures.

The family was referred to CHOC’s comprehensive epilepsy program. A national leader in pediatric epilepsy care, CHOC’s comprehensive epilepsy program offers cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions. CHOC was the first children’s hospital in the state to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, signifying the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

Ian’s neurologist Dr. Andrew Mower suspected he was experiencing complex partial seizures, which was confirmed by video EEG monitoring. Complex partial seizures start in a small area of the temporal or frontal lobe of the brain, and quickly involve the areas of the brain affecting alertness and awareness. The pattern of Ian’s seizures suggested they were originating from the right frontal lobe. Dr. Mower knew Ian and his family were in for a tough journey.

“I really don’t think the general public understands the impact epilepsy has on a child and his family. Its effects are multifaceted and extensive. Our team’s goal is to reduce or eliminate our patients’ seizures, helping improve their quality of life,” explains Dr. Mower, who placed Ian on a series of medications.

The medications reduced Ian’s seizures, but did not control them. Dr. Mower was concerned about the seizures affecting Ian’s development, and presented his case to the epilepsy team.  The multidisciplinary team agreed Ian was a candidate for epilepsy surgery. For children who fail at least two medications, surgery may be considered early in treatment versus as a last resort. Surgery can result in an improvement in seizure control, quality of life, and prevent permanent brain damage. Ian’s surgery was going to be performed by CHOC neurosurgeon Dr. Joffre Olaya.

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Ian recovering from epilepsy surgery at CHOC.

While the thought of surgery was frightening to Lisa and her husband, they were confident in the team and comforted to know their son was going to benefit from innovative technology, like the ROSA™ Robot. Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm. The computer system offers 3D brain mapping to aid surgeons in locating the exact areas they need to reach and planning the best surgical paths. The robotic arm is a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

Dr. Olaya used ROSA to accurately place electrodes in the area of Ian’s brain suspected to be the source of his seizures. By using the robot, Dr. Olaya avoided performing a craniotomy (surgery to cut into the skull, removing a section called a bone flap, to access the brain).

“ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room. It reduces blood loss and risk of infections. Patients tend to recover faster than they would if they had craniotomy,” says Dr. Olaya.

Lisa was amazed at the outcome. “I couldn’t believe how great Ian looked after the placements of the electrodes with ROSA. He wasn’t in any pain, there was no swelling. It was wonderful!”

She and her husband were also amazed at how well Ian did following his epilepsy surgery.

“We got our boy back,” says Lisa. “There were no more side effects from medication and, more importantly, no more seizures!  He started developing again and doing all the things a child his age should do.”

epilepsy surgery
After epilepsy surgery, Ian has been able to do things other kids his age are doing, like riding scooters.

Ian’s care team isn’t surprised by his recovery.

“Children are resilient, and their brains are no different. In fact, the plasticity of a young brain allows it to adapt to changes and heal more easily than an adult brain,” explains Dr. Mower.

Learning to ride a bike and swim were among the first of many milestones Ian quickly reached following surgery. He enjoys playing with his younger brother and his friends. And, whether inspired by his experience with ROSA or not, Ian loves robots.

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Small Baby Unit Before and After

In observance of Prematurity Awareness Month, meet a few graduates of the Small Baby Unit (SBU) at CHOC Children’s. The only of its kind in Orange County, the SBU focuses on caring for the unique needs of the smallest and sickest babies. This special unit is designed for babies born at less than 28 weeks gestation or who weigh less than 1,000 grams.

moanalani

Moanalani Solomon
Current age: 1
Birthday: July 14, 2015
Gestational age at birth: 28 weeks
Birth weight: 2 pounds, 13 ounces
Personality now: “Moanalani is an extremely happy baby who loves to chat with anyone who will listen.  She can roll over and wants to show that trick off as soon as she’s on the floor. She is feisty and absolutely full of life,” says Noelani, Moanalani’s mother.
Reflections on the journey: “We got to know every family in the unit. We really became such a support group for each other. We exchanged phone numbers and birth dates of all the other babies, and asked ‘How did you get here?’ and ‘What’s your story?’ You become family. You’re here for the same purpose. That’s what we really clung to,” Noelani says.

small baby unit

Lucas Zaragoza
Current age: 1
Birthday: June 16, 2015
Gestational age at birth: 24 weeks
Birth weight: 1 pound, 8 ounce
Personality now: “Lucas is always happy, loveable, mischievous, very alert, and curious,” says Heather, Lucas’ mother.
Reflections on the journey: “The nurses told us we’d be very hands on, take his temperature, change his diaper, hold him. They said, ‘It’s OK, we’ll walk you through it.’ They’re part of our family now. We don’t know we would be without CHOC and the nurses and doctors and everyone who had a hand in Lucas’ care,” Heather says.

small baby unit
Jeremiah Zazueta
Current age: 6
Birthday: March 22, 2010
Gestational age at birth: 25 weeks
Birth weight: 2 pounds, 4 ounces
Personality now: “Jeremiah, known as J.J., is a kindergartner full of life and personality. He is very outgoing and friendly. He enjoys playing T-ball, singing, reading, and playing with Hot Wheels. In other words, he’s a typical active boy,” says Maria, Jeremiah’s mother.
Reflections on the journey: “At that moment, you just want them breathing. The doctor said if he cries when he’s born, that’s a good thing. I heard a whimper like a kitten and that gave me peace. The doctor said he’s a feisty one – he was moving his arms. This one’s a feisty one,” Maria says.

small baby unit

Parker Evans
Current age
: 4
Birthday: Sept. 29, 2012
Gestational age at birth: 23 weeks
Birth weight: 1 pound, 1 ounce
Personality now: “Parker’s battle to survive despite the odds seems to have established a bold defiance of the day-to-day challenges that life presents. Every task, no matter how simple or complex, is something that she routinely and emphatically proclaims, ‘I want to do it all by myself!’ The smallest of her peers and behind in her physical development, Parker seems to be the only one not to notice. She has a zest for life and is intent on taking full advantage of the chance she has been given,” says Kristina, Parker’s mother.
Reflections on the journey: “We ended up falling in love with the Small Baby Unit, the nurses and the consistency. Everyone in that unit made a huge difference,” Kristina says.

small baby unit

Faith and Brayden Kohrs
Current age
: 3
Birthday: Nov. 26, 2012
Gestational age at birth: 24 weeks
Birth weight: Both 1 pound, 10 ounces
Personality now:  “We love their amazing hearts, helpful spirits and beautiful souls. They are truly our two little blessings. The kiddos love to travel. They do really well on road trips. Going out with Grandpa Kohrs on his boat in Lake Havasu is always a blast. Faith loves to dance. Brayden loves blocks and Legos. They both love Mickey Mouse Club House, music and books,” says Marydith, the twins’ mother.
Reflections on the journey: “We love the wonderful, wonderful Small Baby Unit staff. They are the reasons we have our babies today. They are just amazing,” Marydith says.

CHOC Walk in the Park: Meet Team Timmaree

By Debbie Hicks, CHOC Walk in the Park participant 

At 7 years of age, our daughter Timmaree was diagnosed with a rare form of eye cancer called orbital rhabdomyosarcoma. In the process of enduring extensive chemotherapy treatments, she lost her hair, but never lost her faith, smile, resilience, and trust in us as parents to ensure she received the best possible care. We turned to the Hyundai Cancer Institute at CHOC Children’s.

Timmaree bonded with pet therapy dogs during her time at CHOC.
Timmaree bonded with pet therapy dogs during her time at CHOC.

To help pass the time during her lengthy hospital stays, Timmaree enjoyed painting rocks. Her first piece of art was a butterfly. She drew a cancer ribbon and then began doodling around it. She excitedly shouted out, “This is a cancer ribbon butterfly!” Timmaree’s rock painting quickly caught the attention of CHOC doctors, nurses and volunteers, as well as other patients, who lined up outside her room to get a glimpse of her special creations. Timmaree never intended on selling them, but many people made generous donations in hopes she would buy something extra special for herself.

After fighting a tough and courageous battle for nearly two years, Timmaree passed away on Dec. 21, 2008, just eight days after turning 9. She was a hero to thousands of people who had the opportunity to meet her, helping change people’s perspectives about life. Many feel honored they have one of Timmaree’s limited edition painted rocks with her signature.

A selection of Timmaree’s limited edition painted rocks.
A selection of Timmaree’s limited edition painted rocks.

Timmaree is with us in spirit. To celebrate her legacy and to brighten the day for patients, we bring the Team Timmaree Rock Craft Day to CHOC the last Sunday of every month. By hosting garage sales and bake sales, we raise money to provide 250 rock painting kits each month — for a total of 18,000 kits since we started seven years ago. In addition, we have proudly participated in the CHOC Walk in the Park since 2007. Our team, donning t-shirts with Timmaree’s butterfly art, has raised more than $260,000.

The 2016 CHOC Walk marks our team’s 10th anniversary, and we can’t think of a better way to honor Timmaree and CHOC than serving as an ambassador family. CHOC was our “home away from home” for two years, during which time we witnessed inspiring miracles and courageous battles. For that reason and so many others, we look forward to joining thousands of walkers at the Disneyland Resort on Oct. 30, 2016. Together, we’ll take steps in support of CHOC and the children and families they serve.

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Son’s Epilepsy Journey Inspires Mom to Help Others

The spread inside a conference room in CHOC Children’s neuroscience unit would be a welcomed sight for any parent: a box of glistening bagels, jugs of steaming coffee, and a warm smile from Kathy Lear.

Whether it’s by offering nourishment or a kind word of encouragement, Kathy stands ready to help a fellow parent of a child contending with epilepsy or other complications.

“We’re trying to do these breakfasts once a week,” she says. “It’s nice to help out.”

After all, it’s a journey that Kathy’s intimately familiar with.

After her son Matthew’s typical birth and toddlerhood, signs that something was amiss appeared in kindergarten. Suddenly, Matthew would start ignoring his parents. Thinking it odd, they made an appointment with the pediatrician.

But before the appointment rolled around, Matthew’s school called one afternoon. Administrators were concerned that he had experienced an absence seizure – a type wherein someone suddenly stares off into space.

At CHOC, an electroencephalogram confirmed that Matthew was indeed d having seizures. He was diagnosed with epilepsy on Halloween 2008, just days before his sixth birthday.

Matthew began care under Dr. Mary Zupanc, director of CHOC’s pediatric comprehensive epilepsy program. The years that followed would be marked by a series of attempts to control Matthew’s seizures, including antiepileptic medication, a special diet and two epilepsy surgeries.

The epilepsy surgeries were palliative procedures, which would partially control the seizures, but not cure the epilepsy or stop all of the seizures. Inevitably, the seizures, although less frequent and less severe, would start again.

Ultimately, Dr. Zupanc recommended implantation of a new type of vagus nerve stimulation device, which sends electrical signals to Matthew’s brain to stop the seizures. Implanted by CHOC neurosurgeon Dr. Joffre Olaya, the device has brought relief to Matthew and his family.

“It disrupts any seizures that might be starting,” Kathy says. “It’s caused a dramatic increase in his ability to respond to us. It has made just a world of difference.”

epilepsy

Matthew now has quarterly visits to the hospital. Now 13, Matthew is doing well, attending special education classes in middle school, and participating in several sports through a recreational league.

“He’ll never be off his medication, but we do hope that we might have seizure freedom again,” Kathy says. “He’ll never not have to deal with epilepsy.”

Between his surgeries, seizure monitoring and other visits, Matthew’s time in the hospital totaled at least six months, Kathy estimated. And without the support of their family, friends and community, the journey would have been nearly impossible for the Lear family, Kathy says.

“We as a family couldn’t have done it without the support of our family and friends,” she says. “It really does take a village. Between bringing us meals, visiting in the hospital, coming back and forth to sports practices – just little things like that really helped.”

That support network has also helped give Kathy the time to make it a priority to help others who are also dealing with epilepsy.

She’s a parent representative on one of CHOC’s clinical practice councils, which help evaluate and improve patient care. Kathy also serves on CHOC’s Family Advisory Council, a diverse group of adult family members who meet regularly to provide input on decisions, initiatives and discussions.

That role brought her to the recent breakfast in the neuroscience unit. Made possible by a grant, the spread is hosted by CHOC’s Patient- and Family-Centered Care team, which supports CHOC’s philosophy that patients and families are part of the care team.

The breakfasts are designed to offer support and comfort to families who find themselves on the unit for days at a time, often while their children are undergoing testing or experiencing other complications.

“Sometimes it’s as simple as parents asking where they can find toothpaste. I tell them that we can definitely help,” Kathy says with a laugh.

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CHOC Nurse, Patient Share Love of Music

Music has been a bright spot for Christine throughout her entire life – and especially while undergoing treatment at the Hyundai Cancer Institute at CHOC Children’s.

And when CHOC nurse Erika Crawford heard Christine playing a familiar song on a piano while receiving chemotherapy treatment one day, she spoke up.

“I told her I knew that song on the ukulele, and that we should play together,” Erika recalls.

Since then, the pair has regularly jammed together while Christine, 17, is in CHOC’s Outpatient Infusion Center. Inspired by Erika, Christine started learning the ukulele and the pair will tinker on songs together.

They even gave their duo a name: E.C. Teal, which incorporates their initials and the color they both happened to wear one day.

Because infusions can take hours, music helps Christine pass the time and take her mind off her condition.

“I’ve always loved music,” she says. “Going through cancer made me realized just how much I loved music.”

Erika began playing the ukulele only a year ago. She was previously learning the guitar and thought its smaller cousin might help her learn faster. And now, it serves as another way for her to connect with patients like Christine.

“It’s fantastic,” she says. “It’s the best part of the job.”

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Lessons Learned During a Senior Year Spent Fighting Cancer

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By Claire Nakaki, CHOC Children’s patient

Hello there! My name is Claire Nakaki. I am a freshman in college, but a little over a year ago, I was a soon-to-be high school senior when I was diagnosed with osteosarcoma, a type of bone cancer. I was a healthy, active volleyball player and I could not understand why this had happened to me. The initial shock was debilitating; cancer had never been something I saw in my future and certainly not my present. I began chemotherapy the month before school started, knowing that I was going to be completing my senior year of high school from a hospital bed. However, after my head and heart had cleared from the turmoil that my diagnosis had brought upon me, I realized that the upcoming year was really just a year. While cancer was something that I knew was going to affect me for the rest of my life, I refused to let it control my life. My surgeon Dr. Nassif asked me before my big surgery (which removed the tumor and replaced the bone with a prosthesis) to set some goals for the upcoming year. Two prominent goals immediately came to mind: I wanted to walk at graduation with my class, on time, without a walker, a wheelchair, or crutches, and I wanted to attend a four-year university after that. These goals did not seem far off, but I unknowingly delved into the hardest year of my life.

I found myself wanting to meet other patients my age almost immediately, begging the Child Life staff to introduce me to any other teens on the floor. I found so much comfort in knowing that there were other teenagers like me experiencing something similar. While no one’s story is identical, discussing the things we do have in common definitely helps soothe an anxious mind. I attended an AYA (Adolescent and Young Adult) support group meeting in my first few months of treatment and then the next following few months, then as often as I could. I had no idea it was even a support group until almost six months in. It felt more like a group of friends who coincidentally have this one big thing in common rather than a solemn meeting to talk about our hardships. Sure, we occasionally brought up things we were going through when someone needed support, but other than that it was just a safe space to be accepted with open arms. This AYA group has become like a second family to me, a fun group of people in all different stages of treatment and survivorship with whom I feel comfortable discussing anything and everything with. I do not know where I would be in my survivorship without this group of people, as well as the entire Child Life staff and AYA facilitators.

I am often asked if the experience was difficult and if I am sad that I missed my senior year of high school. I always have the same answer. Yes, of course it was difficult. I had no idea how difficult it would be. And I am painfully aware that my treatment went much smoother than most. I stayed on the same treatment plan and had very few bumps along the road. I am sure that my classmates enjoyed their senior year at school, but I would not trade this past year for any other situation. I truly mean that. I have learned so much from the genuinely kind and empathetic people that I met at CHOC, both patients and staff members. I reiterate time and time again that I feel so lucky to have had 17 years of life before cancer entered my life and I know that I have many more to come. I met so many younger kids during my stay at CHOC, mainly just a “hello” in the hallway, but there were a small few that I really got to know personally. These kids hold such a special place in my heart. I served as somewhat of a mentor to a few, due to my age and stage in my treatment, what kinds of procedures I had undergone, and what kinds of machines I was attached to. The kids I got to know made such a huge impact on my general attitude towards life and I truly hope that I made a positive impact on them. One piece of advice that I want everyone who goes through cancer to grasp is that no matter how bad you feel or how hard it is to meet your daily goals, your journey is always just one day at a time. It is so important to remind yourself that every day is just 24 hours. All you have to do is just get through the day. Take every step of the way just one day at a time. Soon enough, you will begin to see the light at the end of the tunnel.

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As I mentioned in the beginning of the post, I am now a first-year college student, which means that yes, I did meet my goals. I finished the last step of my treatment and was released from the hospital on June 9th and walked at my graduation without a wheelchair, a walker, or crutches one week later. I was accepted to college in the middle of my treatment, and completed all of my required courses in order to attend in the fall. I achieved these goals with a year of incredibly difficult work and with the unconditional support from my family, friends, and CHOC staff. There will always be things I cannot do because of what happened to me and I still go to physical therapy twice a week and have to take extra precautions in almost everything I do, but I am so happy to be back in the real world, living my new normal.

 Learn more about the Hyundai Cancer Institute at CHOC Children’s.

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Living with Arthritis: Carson’s Story

Seventeen-year-old Carson comes from a close-knit family of athletes and had been playing baseball for a decade when consistent, unexplained pain left his family stumped and looking for answers. Countless physical therapy and orthopedic appointments, plus endless X-rays, filled the next 18 months. When an MRI of his spine lead the radiologist reading his images to assume they were from a middle-aged person who’d played a lifetime of contact sports, rather than a 15-year-old boy, finally the family had a clue that Carson’s pain was not just an overuse injury.

At the time, pre-diagnosis, he was traveling a couple hours roundtrip every few days for orthopedic appointments related to wrist, elbow and shoulder pain.

He was ultimately referred to Dr. Andrew Shulman, a CHOC Children’s pediatric rheumatologist, and finally Carson’s family had the answers they’d been seeking for years. Carson was diagnosed with Juvenile Ankylosing Spondylitis, a form of arthritis that affects the spine and sites where muscles, tendons and ligaments attach to bones in the body. He was also diagnosed with Pain Amplification Syndrome, a condition in which patients develop abnormal pain sensitivity. The nervous system processes normal sensations from movement and environmental experience as pain signals. Carson’s family had never heard of Pain Amplification Syndrome before he was diagnosed.

“Dr. Shulman is such a powerful presence in my life,” says Carson. “The way that he explains things, he makes everything so much easier to understand. He relates directly to me.”

juvenile arthritis

Looking back as far as eighth grade, a lot of Carson’s issues were tied to this condition. He had tried everything from water therapy to hypnosis, but nothing was working. Then Dr. Shulman recommended acupuncture and Carson’s mom Andrea says Ruth McCarty, director of Chinese medicine and acupuncture at CHOC, was ‘unbelievable in getting Carson to a good place.’

Carson’s care team also includes physical therapist Robin Beauregard and pediatric gastroenterologist Dr. Mitchell Katz.

Carson’s family is also a key component of his care team.

“Dealing with these diagnoses is a team effort,” says Carson. “My dad carries me up the stairs when my Pain Amplification Syndrome flares up and I can’t walk, and I squeeze his hand during Humira injections. My mom helps me mentally, and she’s made this so much easier to manage. Dr. Shulman has given us a path forward.”

Despite still making his school’s baseball team while fighting a dual diagnosis, Carson could no longer cope with the week or two of pain that came with playing a single inning. Now he works out daily in a gym whether he’s experiencing a flare up or not, which helps with both diagnoses. To fill the void that competitive baseball left, he often plays catch with his friends and former teammates.

“Carson’s journey with arthritis is a powerful one. It speaks to the importance of diagnosing arthritis, and the outcomes we can achieve with therapy,” says Dr. Shulman. “His experience shows that multi-disciplinary care has been transformative.”

Learn more about rheumatology services at CHOC Children’s.

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CHOC Patient Named Calif.’s Children Miracle Network Hospitals Ambassador

Eight-year-old Jordin has sickle cell disease, a disorder that means her red blood cells are misshapen, which can lead to reduced blood flow to many parts of her body, and frequent hospital stays at CHOC Children’s for pain management. But for her, it’s also been an opportunity to fundraise and raise awareness of sickle cell disease.

CHOC is proud to be part of the Children’s Miracle Network Hospitals family, a national network of corporate partners and programs whose fundraising allows CHOC to help kids like Jordin, and offer exceptional care and state-of-the-art treatments and technology for patients and families with the most complex needs in pediatric medicine.

Recently named a Children’s Miracle Network Hospitals Champion, Jordin will spend the next year traveling the country and raising awareness of the needs of children’s hospitals throughout the nation, including those of CHOC.  Each year, one child from every state is honored with this ambassador position.

Jordin’s ambassador tour kicked off with a trip to Washington, D.C. where Champions shared their inspiring stories to encourage charitable support for children’s hospitals, including attending Senate meetings on Capitol Hill. The end of her year as ambassador will conclude with a trip to Orlando, Fla. as the ambassadors reunite to thank and further inspire those who support the children’s hospitals the Champions depend on.

Jordin CMNH
Jordin’s family joined her on her ambassador tour to Washington, D.C.

Jordin’s history with CHOC runs deep. When she was 3 years old, Jordin was admitted to CHOC for complications of sickle cell disease. Her care team suspected acute chest syndrome, one of the most common causes of death in sickle cell patients. Due to technology constraints at the time, tests were sent offsite for evaluation and getting results could take up to a week.

As they awaited the results, Jordin’s family made a commitment to help other kids fighting sickle cell disease.

“During that week, we realized that we needed to step up and do something for CHOC, so no other families had to wait this long,” said Jordin’s mom, Karen.

Karen recruited family and friends with event planning, social media and fundraising experience to form Jordin’s Journey, a group of people dedicated to fighting sickle cell disease, and helping Jordin. They raised $32,000 to secure a Sebia Electrophoresis machine, which helps monitor and treat blood disorders efficiently at CHOC.

When she grows up Jordin wants to be a doctor so she can help other children the way she’s been helped.

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Living with Scoliosis: Jessica’s Story

During a routine check for scoliosis during physical education class in seventh grade, a teacher noticed a slight curve in Jessica’s spine. A trip to her pediatrician soon followed. X-rays showed a thirty degree curve and since that was considered slight, follow-up imaging was recommended for a year later. By that time Jessica’s curve worsened by 15 degrees, and she was referred to Dr. Afshin Aminian, pediatric orthopaedic surgeon and director of the CHOC Children’s Orthopaedic Institute.

Bracing was initially recommended to try to prevent Jessica’s curve from getting worse.

“People my age don’t know that much about scoliosis even though it’s so common,” says Jessica. “I only had to wear my brace at night while I was sleeping, so no one ever really saw it or had the opportunity to tease me because of it, but they still asked questions, like was it comfortable or not.”

Although Jessica was vigilant about wearing her brace as instructed, her curve worsened by another twenty degrees, to nearly 70, and surgery was recommended. As a lifelong dancer, and a member of her high school’s competitive dance team, Jessica was initially worried that having surgery to correct this significant curve would affect her flexibility.

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Jessica’s spine, before and after surgery.

“It’s very common for children or adolescent patients to be hesitant or even fearful when they first hear they need surgery,” says Dr. Aminian. “We encourage all of our patients to ask a lot of questions so they really feel like they are involved in their care team. We remind them that the team of orthopaedic surgeons at CHOC uses the very latest methods in a setting that’s specially designed for kids and teens, so they are in the best hands possible.”

Jessica’s surgery was ultimately set for winter break during her sophomore year of high school.

“All of my nurses were so impressed that I was up and walking the next day, but after I went home it was harder than I thought to move around” she said.

At a check-up with Dr. Aminian a few weeks later, Jessica was healing so well that she was able to return to school three weeks after surgery, as opposed to the three month break she had expected. Thanks to her flexibility as a dancer prior to surgery, she could even touch her toes at her follow up appointment, to the surprise of her care team.

Getting back into the groove of a full school day did not come without challenges. To protect her spine as it continued to heal, Jessica had to adjust to sitting for longer periods of time, something she slowly worked up to before returning to school. She also brought a small pillow to school to make her desk more comfortable, and made arrangements with teachers to keep textbooks in class so she didn’t have to carry them around.

“For an active person like me, not being able to bend, twist or lift anything for three months was hard, but in the end it made me thankful because my recovery was temporary, and overall I am really healthy,” she says.

Jessica knew she wanted to document her recovery phase, so she asked her mom to film some footage while she was in the hospital. That eventually morphed into a series of YouTube videos educating others on scoliosis, recovery tips, and sharing her own journey with the condition. When she was diagnosed, she knew others who had scoliosis, but no one’s curve was as severe as her own, so some peer-to-peer questions were left unanswered.

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After her own successful scoliosis surgery, Jessica now imparts wisdom on other teens suffering from scoliosis.

“I want other scoliosis patients to know that it’s going to be hard, and you will have times when you can’t do something, but I promise it will get easier if you just go at your own pace and follow your doctor’s guidelines,” she says. “I love getting messages from people that watch my videos, thanking me for helping to calm their nerves before surgery.”

Filming these videos and helping other patients has helped to fill the void that dancing left. After losing one year of practice time due to surgery and recovery, Jessica decided not to go back to dancing.

“I’m busy in different ways now,” says Jessica. “Dancing provided great memories for me, but I’m on to a new chapter now.”

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