A 16-year-old male came to clinic for his sports physical examination. He had no overall concerns but it was noted that he had lost about 4 kilograms of weight. He complained that, “After I had COVID last fall, my sense of smell has never come back and everything just tastes like cardboard. I eat but I’m not really hungry or interested in food.” He noted that there were some foods with strong flavors that tasted somewhat different but not really any better. He was eating a balanced diet because “if I’m going to play well then I have to eat well.” The past medical history showed that he had a mild case of COVID 7 months previously.
The pertinent physical exam revealed normal vital signs and growth pattern except for the weight loss. His physical examination was normal.
The diagnosis of a healthy male was made with long standing anosmia and dysguesia. The pediatrician asked him to continue to monitor his weight and check back in 3 months to make sure he wasn’t losing an excessive amount of weight. She also mentally added him to her list of other patients with longer term symptoms of COVID including a younger girl with paresthesias and one of her partner’s patients with dysguesia of certain foods.
With COVID-19, the scientific research process is playing out daily in the press where the general public can see for themselves and share in the new knowledge and frustrating events that occur usually behind the curtain of science. People try to understand the little snippets of new knowledge that come forth and how they fit into the COVID problem, and most importantly how it may affect themselves, the people they care about and their community. Patients and families daily ask questions of their health care providers who themselves have the same questions, and answer something like “We’re learning something new every day.”
Scientists grapple with a variety of the fundamental scientific questions for COVID or any other scientific research question including:
- What is the disease and its variations? What are the agreed-upon definitions?
- What is the incidence and prevalence and other epidemiological data of the disease?
- What populations are affected or at higher or lower risk? Why does this appear to be the case? What population is even being studied in the research? Are the findings consistent across populations and locations?
- What appears to mitigate or promulgate the disease process?
- What alternative diagnoses need to be considered?
- Are rare findings associated with the disease disease? Are they a cause of it? Are they just a random occurence?
- What is the natural history of the disease? What are the long-term problems in 1, 5, 10 years or potentially over a lifetime?
- What are the pros/cons of the medical decisions made today and what about the future?
It can be frustrating for both patients, families, health care providers and the scientific community to need to make important health care decisions based upon incomplete data, but COVID is not unique. Consider cancer treatment where despite having a great deal of research, often scientific data is not available which specifically matches the patient’s characteristics and medical situation. Therefore, the best-fit for the general characteristics and medical situation must be used for treatment decisions. Scientific research provides new treatments, but they are often used for small numbers of patients meeting specific criteria and therefore it is not known how the new treatment may affect a different or wider population, or what the long-term side effects are 1, 5, or 10 years later.
In the first few weeks to months after its description, it was noticed that some patients continued to have more than 1 symptom for weeks to months after the acute disease. This has been termed post-acute sequelae of SARS-CoV-2 (PASC) Long-haul COVID, or Long COVID among others. Initially it was first described in adult patients but then noticed in some pediatric patients as well. Different studies use different definitions but in general, the term Long COVID describes patients experiencing symptoms for more than 30 days (at least) or more after laboratory confirmatory testing of acute COVID. Patients do not have to be symptomatic.
In a population-based cohort of non-hospitalized patients, aged 12-82 years, researchers found that the prevalence of Long COVID was 68.7% at 30 days post-infection (N=303) and was 77.1% for those followed longer than 60 days (N=157). “The most common symptoms were fatigue (37.5%), shortness-of-breath (37.5%), brain fog (30.8%), and stress/anxiety (30.8%). Median number of symptoms was 3 (range 1-20).”
In one of the first studies of children performed in Italy (N=129, mean age 11 +/- 4.4 years) including 25.6% who were asymptomatic) who were assessed by telephone call 49-275 days after diagnosis (mean 162 days), it was found that 41.8% had recovered, but 35.7% had 1-2 symptoms and 22.5% had 3 or more. The most common symptoms were insomnia (18.5%), respiratory symptoms (14.7%), nasal congestion (12.4%), fatigue (10.8%), muscle problems (10.1%), concentration problems (10.1%) and joint pain (6.9%). The authors note that “An important and unexpected finding is that also children with asymptomatic or paucisymptomatic COVD-19 developed chronic, persisting symptoms, although followed-up for a relatively short time after diagnosis.” Given that COVID has only been identified for a relatively short time itself, these are important findings to be aware of for medical decision making.
In a prospective cohort in the United Kingdom (N=1734, ages 5-17 years using a mobile application device to assess symptoms, researchers found 4.4% had illness symptoms > 28 days and they usually had 2 symptoms. After 56 days, only 1.8% had symptoms and all had resolution by 8 weeks. Symptoms included headache, fatigue and loss of smell.
In a prospective study of children (N=90, ages 12 +/- 5 years) who presented to a designated Long COVID clinic at a tertiary pediatric care center, who were assessed 33-410 days after infection (mean 112 days), the median number of symptoms was 4 (range=1-14) with fatigue (71.1%), dyspnea (50%) and myalgia (45.6%) being the most common.
These studies show a small range of different types of studies, performed in different populations, with different definitions and assessments which then provide different answers. With more time, many of the fundamental scientific questions above should be further elucidated to better understand Long COVID in children.
Questions for Further Discussion
1. What is MIS-C? A review can be found here
2. Name some other recent emergent diseases?
- Disease: COVID-19
- Symptom/Presentation: Infection
- Age: Teenager
To Learn More
To view pediatric review articles on this topic from the past year check PubMed.
To view images related to this topic check Google Images.
To view videos related to this topic check YouTube Videos.
Buonsenso D, Munblit D, De Rose C, et al. Preliminary evidence on long COVID in children. Acta Paediatr. 2021;110(7):2208-2211. doi:10.1111/apa.15870
Bell ML, Catalfamo CJ, Farland LV, et al. Post-acute sequelae of COVID-19 in a non-hospitalized cohort: Results from the Arizona CoVHORT. PLoS One. 2021;16(8):e0254347. doi:10.1371/journal.pone.0254347
Lewis D. Long COVID and kids: scientists race to find answers. Nature. 2021;595(7868):482-483. doi:10.1038/d41586-021-01935-7
Ashkenazi-Hoffnung L, Shmueli E, Ehrlich S, et al. Long COVID in Children: Observations From A Designated Pediatric Clinic. Pediatr Infect Dis J. Published online August 5, 2021. doi:10.1097/INF.0000000000003285
Children rarely get ‘long COVID.’ J Paediatr Child Health. Published online August 19, 2021:10.1111/jpc.15708. doi:10.1111/jpc.15708
Donna M. D’Alessandro, MD
Professor of Pediatrics, University of Iowa