Every week, 7-year-old Landon Clayton gets an infusion of medicine that builds up his immunity to fight off infection. Nineteen-year-old Abigail Novak also receives a weekly infusion to strengthen her immune system.

Thanks to those infusions – called immunoglobin replacement therapy -- Landon’s and Abigail’s antibodies are now better equipped to protect them from the bacteria and viruses that made them frequently ill. They are among more than 800 patients seen at the Cook Children’s Immunology Clinic since it opened on July 27, 2021.

Naty Chaimowitz, M.D., Ph.D. runs the Immunology Clinic, which is celebrating its two-year anniversary today. It’s a center for the evaluation, diagnosis and treatment of rare and complex disorders in children from newborn to 20 years old.  The clinic works in partnership with the Cook Children’s Infectious Diseases Department. The goal? Increased awareness and access to care for those whose immune system does not function the way it should.

“I’d get sick with something and then it would take me a lot longer than most people to get over it,” Abigail said of her low antibody diagnosis. “When I did get over it, I’d have a little bit of relief, and then I’d get sick again.”

It was the same for Landon – he kept coming down with respiratory ailments that required antibiotics or steroids or even hospitalization.

“When we think about disorders of the immune system, there are mostly two ways patients present,” Dr. Chaimowitz said. “One of the ways is when you have a hole in your immune system that makes you more susceptible to infection. These are kids who are on antibiotics all the time, or they have more unusual infections or infections with things that normally don't make kids sick.”

The second broad category, called immune dysregulation, happens when the immune system misfires and attacks the body’s own cells instead of foreign invaders.

Referrals

Patients come to the clinic on referral from their primary care physician or from a specialist. For example, an Ear, Nose, Throat (ENT) doctor might refer a patient who continues to struggle with ear infections even after having tubes put in. Or a pulmonologist might refer a patient who keeps getting lung infections.

Additionally, the Texas Department of Health and Human Services refers infants whose newborn screening indicated Severe Combined Immunodeficiency (SCID), a potentially fatal condition.

The clinic also collaborates with the Cook Children’s Genetics team to establish or rule out any congenital causes for the patient’s symptoms.

Dr. Chaimowitz studies the patient’s health history and blood samples. Oftentimes she prescribes infusions or a regular dose of oral antibiotics to prevent infection. Extreme cases of immunodeficiency might require a bone marrow transplant.

Here's how subcutaneous (under the skin) infusions can help patients:

• Immunoglobin G (IgG) protein molecules are collected from the plasma of healthy blood donors. Those IgG antibodies are used to make the infusion medications.  
• A needle injects the medication into the tissue layer between skin and muscle.
• The boost of antibodies gives patients more energy and fewer sick days. Parents worry less about exposing their immune-compromised child to germs at school or elsewhere.

“Just coming and seeing us gives them hope,” Dr. Chaimowitz said. “I hear from a lot of parents that they know in their heart there's something different about their child. I say, ‘You came to the right place. I have hundreds of patients who share your story.’”

Abigail’s Experience

Abigail Novak has a kidney disease that requires her to take an immunosuppressant drug. During her teen years, it seemed like she was always dealing with health problems … flu, sinus infections, urinary tract infections, kidney stones, an abscessed cyst. If a contagious illness was making the rounds, Abigail caught it – and it took a long time to recover. In the fall semester of her freshman year in college, her fatigue and frequent bouts with illness got worse. Even a case of sniffles would escalate.   

“A cold would turn into almost pneumonia and bronchitis,” said her mom, Kristi Novak. “Anything she got was 10 times worse than a normal kid.”

Cook Children’s nephrologist Randa Razzouk, M.D. was Abigail’s kidney doctor at the time. Dr. Razzouk sent Abigail to the Immunology Clinic, where Dr. Chaimowitz diagnosed an antibody deficiency. Abigail started on infusion therapy in January 2023. From her dorm room at Texas Tech University in Lubbock, she would insert the needle and then study or watch a movie while the medicine entered her stomach tissue.

She saw improvement after about the third or fourth week of infusions.

“After a while, I started noticing, “Wow, I haven’t been sick!’ That was a big difference.”

With more energy to devote to her classes, the biochemistry major made the President’s Honor List in the spring semester.

She continues to visit with Dr. Chaimowitz every three months or so via virtual appointments, which means no need to commute from Lubbock or her family’s home in Seymour, almost a three-hour drive from Fort Worth.

Landon’s Experience

Landon Clayton was born with cystic fibrosis (CF), which affects the lungs, digestive system and other organs. From about age 3, he began getting sick more often than typical for people with CF.

“He kept getting sick, and it was horrible,” said mom Jessica Clayton. “He would have a good one or two weeks and then it would start again.”

His parents held him out of preschool because of the constant cycle of sickness.

“It was frustrating,” Jessica said. “My child shouldn’t be this sick and be on this many antibiotics and steroids. I know other CF kids, and this is not how they live.”

Landon came to Cook Children’s in 2022 under the care of Karen Schultz, M.D., medical director of Pulmonology Services. Dr. Schultz referred him to the Immunology Clinic, where Dr. Chaimowitz made a preliminary diagnosis of antibody deficiency.

Jessica remembers feeling a sense of relief and hope.

“That appointment was probably the best I ever felt after leaving a doctor’s appointment,” she said.  

The official diagnosis came about a month later when blood tests showed that Landon had barely any immune response to a recent pneumonia vaccine. He started infusion therapy in November.

Landon does his weekly infusion at home in Wichita Falls.  His mom starts by applying a cream to numb the outside of his thigh. Then she inserts a short needle and a pump delivers the drug that boosts Landon’s antibodies. The infusion takes about 50 minutes and he plays Mario Kart with his dad to pass the time.

Needles make him anxious, but his parents award him a small prize for cooperating with the process. “Not so bad,” he reports.

Jessica points out that Landon was sick so much that he missed 20 days of school in the fall of first grade. After starting the infusions, his only absences in the spring were two days out due to routine checkups. Now he has energy for his favorite hobbies: trampolines, Mario and dinosaurs.

“He’s like, ‘Mom, I can keep up with my friends now,’” Jessica said. “He can feel the difference.”

Resources and Reassurance

The Immunology Clinic provides education to patient families in an ongoing dialogue about treatment options. Dr. Chaimowitz applies her research skills to assess each patient’s unique situation against the array of more than 450 primary immune deficiency disorders. Periodic reassessment is needed, she said, because sometimes young children grow out of the condition as their immune system matures.

Dr. Chaimowitz says it’s rewarding to take even small steps that help strengthen a child’s weak immune system.

“Immune issues can present as frequent infections, severe infections or early-onset autoimmune disease,” she said. “And that when these things happen, you should at least think about the immune system.”

Now that schools have opened, who needs COVID-19 testing?

Rapid testing for COVID-19 can be helpful to promote isolation for positive cases, and to prevent prolonged unnecessary isolation for those children exposed to COVID-19 or with questionable symptoms. The symptoms that most likely warrant testing are combinations of the following: fever and headache, vomiting, diarrhea, congestion, loss of taste or smell, cough, muscle soreness, extreme fatigue and shortness of breath. Children with diabetes may see unexplained difficulties with sugar control. Any combination of these symptoms should be taken more seriously if there has been a known contact with a COVID-19 case.

Does a child who has had COVID-19 need a negative test to return to school?

While we have seen some schools and athletic programs requiring a negative test in order to return, this is based on outdated guidance. Testing may remain positive for weeks after symptoms have passed but does not mean that the child remains contagious. The current guidance is that students may return when their symptoms have resolved for 24 hours AND they are 10 days since the start of symptoms. In practicalities, most of these students will be waiting until the 10 days pass. If a child was hospitalized, it is recommend that they wait 20 days from the start of symptoms.

If a child is exposed to COVID-19, can we end their quarantine early with a negative test?

Testing is reasonable if symptoms develop to make a diagnosis, but quarantine should continue for 14 days from the end of the last contact. A negative test should not provide false reassurance as symptoms could continue to develop throughout the 14 day period despite a negative test.

Many parents are concerned about whether their child is at more risk for COVID-19. Which patients are at risk for more severe disease?

Risk factors for severe disease at any age include: cancer; COPD; immunosuppressed state due to organ transplant; obesity (BMI >30); serious heart disease such as heart failure, coronary artery disease, and cardiomyopathies; sickle cell disease; and type II diabetes.

Individuals with the following conditions MAY be at increased risk for severe diseases: asthma; stroke; cystic fibrosis; hypertension; immunocompromised state due blood or bone marrow transplant, steroids, or immunosuppressing medications; neurologic conditions; HIV; liver disease; pregnancy; pulmonary fibrosis; smoking; thalassemia; and type I diabetes.

Children who are medically complex, who have serious genetic, neurologic, metabolic disorders, or congenital heart disease might be at increased risk for severe illness from COVID-19, as well as children with obesity, diabetes, asthma and chronic lung disease, or immunosuppression.

What do you do when a child has a family member who is at risk for severe disease? Does the child’s age matter?

In this situation, distance learning might remain the best option for this family. Because the disease can be contracted at any age, this should not factor into the decision. While child to adult spread may not happen as easily as adult to child, there are studies that show it does occur.

Do children who are planning to do virtual learning need to have their vaccines updated?

According to the Texas Department of State Health Services (TDSHS), vaccine rules are still in effect regardless of whether a student is participating in on-campus or virtual learning.

Read more about Cook Children's recommendations for safely returning to school on our website.

*This post includes information provided by Marc Mazade, M.D., medical director of Infection Control and Prevention at Cook Children’s and Justin Smith, M.D., pediatrician at Cook Children’s Pediatric Trophy Club.