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.”

Just in time for the holidays a reader wrote in with this question:

“My friend...was told by her grandson’s pediatrician that her grandchildren who are vaccinated should never be around any unvaccinated children. Well, the parents of her other grandchildren do not want to vaccinate their small children…As a result there are no more family gathering with all grandchildren. They have to spend holidays on separate days. My question is: Why would the pediatrician say this? If the children who are vaccinated and the children are not showing symptoms what’s the problem?”

This is definitely a sad and tricky situation and one that we should use extreme care when discussing.

One thing I will say is that no matter what one’s choice about vaccinating is, parents believe they are making the choice in the best interest of their child. Of course, I have strong opinions about how important it is, but this discussion is not for the faint of heart.

There are probably some doctors that would tell you it’s no big deal and you shouldn’t worry about it (I would disagree with them). There are other doctors that would say you should never have your child around children who are unvaccinated regardless of your child’s health (I recognize this is not reasonable in many situations).

Here are the questions to consider:

1. How old is the child? The younger the child, the more vulnerable they will be to infection. They cannot receive protection for chicken pox or measles before 1 year. Older children who are fully vaccinated have a significant amount of protection and they likely encounter an unvaccinated child at school every day.
2. Who isn’t vaccinated? This question is about family members which makes transmission of infectious diseases more likely than if you just walked by someone on the street and were not interacting with for longer periods of time.
3. Can you have an open conversation with those involved? The discussion is clearly more complicated than simple medical advice as it broaches on several tricky areas including family dynamics and vaccination.

The easy (get out of having to make a committed answer) is that there is no one answer to the question. The family should talk with their doctor about their specific concerns and make a decision with their counsel.

Should I stop the blog post there? Not so fast.

Instead, I want to give you a framework for having that discussion with your doctor.

What diseases should I be worried about?

I believe that all vaccines are important, period. But there are 3 diseases that jump to the top of my list when considering this issue:

1. Flu

Flu season is predictable in that it comes every single year at roughly the same time. It is unpredictable in that we never know how widespread it will be and how severe the cases will be when it does come around. Flu is particularly dangerous in babies and they cannot be vaccinated until they are 6 months old. Remember that the flu vaccine isn’t perfect, so I’m not saying that everything’s cool if we all have flu vaccines but it would seem logical to get as much protection surrounding the baby as possible.

2. Pertussis

Pertussis, or whooping cough, is still common and is a very serious disease for anyone who gets it. In children, teenagers and adults it tends to cause a very rough and painful cough that lasts for weeks to months. I know of adults who have had broken ribs because the coughing is so hard. The real danger for pertussis comes in small babies (less than 3-4 months). These babies commonly have spells of coughing that cause them to stop breathing; leading to ICU stays for intubation and unfortunately, death. Babies are vaccinated against pertussis at 2, 4 and 6 months which increases the number of children who are protected with each shot but they go on to get another vaccine at 4 and 11 years as well. So, when are they fully protected? It’s impossible to say. In addition, vaccines are not perfect so even vaccinated infants who are exposed could develop pertussis. Pertussis still occurs commonly in the United States and is generally carried by older children and adults who are coughing but do not know that they have pertussis. Just like flu, having the vaccine does not prevent disease 100% and I still feel that we need to do something better with the pertussis vaccine but again, it would seem logical to increase protection as much as possible.

3. Measles

Measles is another disease that still occurs in the United States. In 2014, there was a record number of 667 confirmed measles cases reported to the Center for Disease Control and Prevention’s National Center for Immunization and Respiratory Diseases (NCIRD). That’s the highest number of cases since measles elimination was documented in the U.S. in 2000. Measles can cause pneumonia and have a higher risk of hospitalization in children under 5. Children receive their first measles vaccine at 1 year of age, but they have no protection from measles until then.

What criteria should I use for being around others?

1. If your baby is under 6 months, use extreme caution. Many babies do not have full protection until after the 6 months shots. In addition, they cannot receive a flu vaccine until 6 months.
2. If your baby is under 1 year, I would also use caution. Your baby cannot be vaccinated against measles or chicken pox until 1 year.
3. After your child is vaccinated at 4 years, they have much of the protection that they need to protect themselves against the vaccine preventable diseases.
4. Babies or children who may not have a normal immune system-such as those with chronic illness or who were born premature deserve extra caution.
5. Anyone with symptoms of illness, especially fever, cough, congestion or rash, should not be around your baby or child regardless of your contacts’ vaccination status.

Can you get a definitive answer about when your baby can be around unvaccinated children? No, but you at least have some information to make an informed decision.

After you’ve discussed your plan with your pediatrician how do you handle the conversation with friends and family?

Here are some thoughts about some things you might say:

1. Our baby/child doesn’t have protection against many very dangerous diseases and we do not feel comfortable having her around people who could spread them to her.
2. Our baby/child has already been through so much, we can’t risk putting her through another medical problem. Especially something that we could have avoided.​
3. The doctor was emphatic that we cannot be out around anyone (especially someone who is not vaccinated or you could leave that out) until __________. (I’m fine with a family placing the “blame” completely on me.)

It’s not that my own pediatrician didn’t ask how my then 15-month-old daughter was sleeping. She did. I answered truthfully when I said that she slept well. She fell asleep promptly after her bath each night, or occasionally she’d fall asleep after our evening meal which was often late in the evening. It was our Parents as Teachers educator who sat on our living room floor with us and calculated that our toddler was not getting the recommended 12-14 hours of sleep recommended for her, even when we included her afternoon nap. 

I knew about sleep deprivation. I was in the middle of my pediatric residency training before there was an 80-hour per week work limit.

Lack of sleep makes it difficult to:

• Concentrate. 
• Retain what you have recently learned.
• Deal with stress.

Sleep deprivation may increase an appetite for less-than-healthy high fat and high carbohydrate foods as well. Sleep is not just for the weak. It is important to our health and survival. Our nervous, immune and hormone systems are maintained when we are deeply asleep. We had to change bed time to a reasonable hour.

Fortunately, we had many good sleep habits already established. We just needed to start our bed time routine earlier in the evening. That time of day after dinner when my children wind down and go to bed is now one of my favorite times of day. It is a time to reconnect and put away the business of the day. Different families will do different things, but usually a bath and two or three quiet, soothing activities will do the trick. Most often, families stick with the same activities, but these may change as a child gets older and has new skills like being able to write.

Some families I know like to:

• Read a story together. (Babies and toddlers may chew on the books. Short, sturdy board books are great!)
• Sing a special song.
• Listen to music.
• Say a prayer.
• Write in a journal.
• Do a math puzzle together. (Check out bedtimemath.org).

Though it is not always easy, it is important to create good sleep habits. Some other great ways to help your child sleep well include:

• Be active with your child and play outside when possible. Just keep it quiet one hour prior to bed. 
• Keep the television and other electronic devices (smart phones, tablets, etc.) out of the bedroom. The light from the screens actually makes it difficult to fall asleep.  It is also more difficult to regulate what and when things are viewed. 
• Be consistent. Try to stay within one hour of bedtime, even on the weekends. This also makes staying up on an occasional holiday for watching fireworks much more exciting.
• Don’t send a child to his or her room for punishment. Pick another location for “time out” to occur.
• Do let your children know that sleep is important to keep them healthy and ready to learn.
• A special toy, blanket or pillow may provide comfort to a child, especially if they need to travel or spend time in different homes.

Sleep difficulties are common, occurring in about 20 to 30 percent of all children. These difficulties are even more common in children with chronic conditions such asthma, eczema, autism, anxiety and depression.  Sometimes, waking at night and needing additional attention to get back to sleep are normal parts of development, too. As pediatricians, we want to hear from families when children have difficulty sleeping. We want to make sure that they are healthy and ready to tackle whatever comes their way. 

Kara L. Stewart, M.D., is a Cook Children's pediatrician, located at 6421 McCart Ave. in Fort Worth, Texas. The location is one of Cook Children's Neighborhood Clinics.