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How to Prevent and Manage Pneumonia in Kids with Complex Medical Needs

Many children with disabilities or complex medical needs are at an increased risk of pneumonia. This severe respiratory infection is characterized by air sacs in the lungs that fill with fluid and pus, making it difficult to breathe and get enough oxygen.

Fortunately, there are ways that you can lower your child’s risk of developing pneumonia. Learning to manage your child’s risk factors for pneumonia, and seeking early medical attention if pneumonia symptoms present themselves, both go a long way in protecting your child from serious consequences.

What Causes Pneumonia?

Many types of respiratory infections, including viral, bacterial, and even fungal infections, can potentially cause pneumonia. Children may first come down with a common viral respiratory infection, such as respiratory syncytial virus (RSV) or influenza (flu), and then develop a secondary bacterial infection that leads to pneumonia. In some cases of medically fragile children, even the common cold can progress to a bacterial infection that can lead to pneumonia.

A bad cold or respiratory infection is more likely to lead to pneumonia if your child has a compromised immune system or difficulty clearing mucus from their airways. This could be due to:

  • underlying genetic conditions such as neurological disorders that can result in weak muscles and impaired coordination that limit the ability to cough effectively
  • narrow or floppy airways
  • chronic lung disease

Another common way a child may develop pneumonia is after liquid, food, stomach contents, or other foreign matter enters their airway. This is known as aspiration pneumonia, which can happen when a child has “trouble coordinating swallowing, so when you swallow, it can accidentally go into your windpipe,” says Ajay Kasi, M.D., a pediatric pulmonologist at Children’s Healthcare of Atlanta.

Risk factors for aspiration pneumonia include:

  • neuromuscular or neurological disorders
  • gastroesophageal reflux disease (GERD)
  • frequent or protracted vomiting
  • use of a feeding tube, which can increase the risk of gastroesophageal (acid) reflux
  • having a tracheostomy, which can irritate the windpipe and create more mucus

What are the signs of pneumonia?

Common signs and symptoms of pneumonia include:

  • fever
  • coughing
  • chest congestion
  • shortness of breath
  • chest or abdominal pain

“Parents will often say they hear a rattle in the chest. And when we listen to them, we will hear what we call crackles, or signs of congestion within the chest,” says Maria Teresa Santiago, M.D., the chief of pediatric pulmonology at Cohen Children’s Medical Center in Hyde Park, NY.

Severe pneumonia may cause signs of breathing difficulties or low oxygen levels, such as:

  • grunting
  • very rapid breathing
  • nasal flaring, or widened nostrils while breathing
  • chest retractions, or inward sucking of the chest muscles between the ribs
  • cyanosis, or bluish tint to the nail beds, lips, mouth, or other tissues
  • difficulty feeding or drinking
  • reduced alertness

Jennifer Leonard’s daughter developed pneumonia when she was 14 years old, after doctors had started her on an antibiotic for a suspected respiratory infection. Her daughter has multiple risk factors for pneumonia related to FOXG1 syndrome, a rare neurodevelopmental disorder that typically causes seizures, abnormal body movements, and feeding challenges, including swallow issues, among other impairments.

“She seemed to be getting better,” says Leonard, who lives with her husband and two daughters in Pennsylvania. “And then, about two to three weeks after the antibiotic was done, she still sounded really junky. She was coughing a lot, but she doesn’t cough the way we do, so it’s not very productive” [it doesn’t clear mucus].

Jennifer Leonard's daughter in a hospital bed, with a pneumonia
Credit: Jennifer Leonard | Leonard’s daughter in the hospital with pneumonia

A second round of antibiotics also failed to clear her daughter’s symptoms, so the family returned to the pediatrician for follow-up. “I don’t even think we were there for 10 minutes before her doctor said, ‘I’m just going to send you directly to the emergency room. I’m fairly certain she’s got pneumonia.’” Sure enough, X-ray images confirmed that she had developed pneumonia, which Leonard believes was caused by a viral infection. She was admitted to the pediatric intensive care unit (PICU) for treatment.

Leonard says that it’s important to “trust your gut” and seek medical attention if you suspect that your child is sick and not recovering as quickly as they should. “As a parent, you know your kid the best.” Since her daughter can’t verbally describe how she’s feeling, Leonard has learned as her caregiver to recognize the signs of an infection.

The Risks of Pneumonia

Pneumonia is the leading cause of illness and death in children 5 years and younger worldwide, outside of causes related to pregnancy and childbirth. It accounts for an estimated 14% of all deaths of children under the age of 5. Although most pneumonia-related deaths occur in developing countries, the condition can also severely affect children in developed nations, particularly children with underlying conditions. In the United States, for example, roughly a third to half of pneumonias in children require hospitalization to treat.

Pneumonia can cause scarring and lasting damage to the lungs, leaving children more vulnerable to chronic lung disease and future respiratory infections. These risks compound with each pneumonia. If your child is susceptible to pneumonia due to an underlying condition or has already had pneumonia, visiting a pulmonologist to establish care is recommended. A pulmonologist can discuss “your child’s risk factors and can guide you to help avoid or prevent recurrence of pneumonias,” says Kasi.

How to Prevent Pneumonia in At-Risk Kids

There are a number of steps you can take to prevent pneumonia—and promptly recognize and treat it if signs develop.

It’s a good idea to “limit exposure to people who are sick or who have respiratory infections,” says Kasi. He also recommends vigilant hand-washing and keeping your child away from tobacco smoke and vaping. If you have other children, make sure they also wash their hands and faces when they re-enter the home after school or are outside.

Talk with your child’s healthcare team to learn how to manage their other specific risk factors for pneumonia. These will depend on your child’s condition and may change over time. If your child has immunodeficiencies, for example, their doctor might prescribe preventative (prophylactic) antibiotics or other treatments to shield your child from potential infections.

If your child struggles to clear mucus, the below at-home treatments can help to ward off pneumonia at the first sign of an infection.

  • nebulized (inhaled) medication to help thin or loosen mucus, open airways, or reduce airway inflammation, using a nebulizer
  • chest physiotherapy exercises, techniques, or postures to loosen or drain mucus
  • an oscillating vest or other chest therapy device to loosen mucus
  • a cough assist device, placed over the nose and mouth, to promote effective coughing that can clear mucus
Jennifer Leonard's daughter using a chest vest to clear mucus
Credit: Jennifer Leonard | Leonard’s daughter using a chest vest to help clear mucus

Your child’s primary doctor or pulmonologist may advise you to use these prescribed treatments on a regular basis, or just when your child shows symptoms of a respiratory infection.

“We’ve incorporated quite a bit of respiratory equipment over the past two years for home therapies for when my daughter is sick,” says Leonard. “We’ll put the vest on her, use the nebulizer at the same time, and then when she’s done with that, we’ll do the cough assist because by that point, everything’s kind of loosened up enough that she can get a productive cough going.”

If your child has difficulty swallowing, a speech or swallow therapist can also help. The therapist might advise you to avoid certain liquids or foods that pose a higher aspiration risk, as well as suggest feeding tools or techniques to help your child swallow more safely.

In some cases, a gastronomy tube (G-tube) or other feeding tube may be necessary. “Right now, her main nutrition is through her G-tube,” says Leonard, “but she does get pleasure feeding orally, and we kind of gauge: is she well enough to chew something and swallow it properly without aspirating?”.

To address acid reflux, your child’s doctor may recommend changes to their diet or feeding habits, medication, or surgery. Leonard explains that her daughter has severe reflux. “So there are certain things we have to do with her — like, for example, even when she’s tube-fed, we don’t lay her down at all to do a tube feed. Because if you do, then she can aspirate from the reflux overnight.”

What to Do If You Think Your Child Has Pneumonia

If you are unsure if your child has pneumonia, contact their doctor or pulmonologist right away. Depending on the severity of the symptoms, “the pediatrician will want to take a listen,” says Santiago. “If they hear the signs of pneumonia, they might send them to have a chest X-ray.” However, if you notice severe signs, such as breathing difficulties or low oxygen levels, Santiago and Kasi recommend taking your child directly to the hospital emergency department, skipping the visit to the pediatrician. After evaluation, a chest X-ray will be given to confirm pneumonia, identified by white spots, called infiltrates, seen on the X-ray.

Two images of child chest X-Rays: pneuomonia image and healthy image
Credit: Left: Jennifer Leonard | Leonard’s daughter’s x-ray showing signs of pneumonia; Right: Case image courtesy of Bruno Di Muzio, Radiopaedia.org, rID: 51605

To treat pneumonia, a doctor will likely prescribe an antibiotic, in case the condition is caused by a bacterial infection. “It’s very hard for a child to bring up their mucus so we can study it, so many times we will choose an antibiotic based on the most common type of bacterial pneumonia that we think that the child may have,” says Santiago.

Additional therapies may include:

  • treatments to help your child breathe or increase their oxygen saturation levels, such as chest therapy, oxygen therapy, or continuous positive airway pressure (CPAP) therapy
  • oral or intravenous fluids to keep your child well-hydrated
  • medication to treat fever or other symptoms

In severe cases, your child may require mechanical ventilation to help them breathe.

Depending on the severity of pneumonia and the treatment needs, your child may be admitted to the hospital for a longer stay or discharged to recover at home. Before you leave the hospital, make sure to understand the medical team’s recommended care plan. Carefully follow all the instructions given to you, which should also be on the discharge papers. Once back at home, contact your child’s doctor if you have any questions or suspect they may be getting worse.

Santiago stresses that it’s important to follow up with your child’s doctors after your child has recovered. You may need to tweak their ongoing treatment plan to reduce the risk of future pneumonias. “Taking care of a medically complex child is really a team effort between the parents and their physicians,” she says.  


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