A family holding hands

Pediatric Long Covid: Caregiver Survey December 2021


In December 2021 we polled caregivers of kids, under 18, with Long Covid. Thirty-four (34) families participated with the following demographics.

64.7% stated to have official Long Covid diagnosis from their doctors.

How long has it been since initially catching Covid?
58.8% under 1 year

41.1% over 1 year

*Three responses indicated that their child was sick with SARS-CoV-2 more than one time.

How old is your child?

0-4 year olds = 5%
5-11 year olds = 32.3%
12-17 year olds = 61.7%

*A potential reason for the under-representation of young children is because symptoms can be difficult to explain and recognize, especially with the “flaring” and up-and-down nature of the illness. Many children do not know how to explain whats happening, or worse, are not taken seriously.

Known preexisting diagnosis:
47% – None

26% – Allergy or asthma

15% – ASD and / or ADHD
12% – Other

Symptoms experienced

Caregivers endorsed the following symptoms:

88% – Headaches
82% – Severe Fatigue & weakness
76% – Light, Sound, Touch sensitivity
73% – Body Pain
73% – Cognitive dysfunction, concentration problems, brain fog
3% – General feeling of being unwell

44% – Breathing difficulties
21% – Reoccurring fevers
15% – Anaphylactic or Allergic reactions – rashes, hives, etc.
12% – Persistent cough
12% – Stomach or abdominal pain

Caregiver perception of the most severe symptom:
32% – Severe Fatigue & weakness
9% – Headaches
9% – Cognitive dysfunction, concentration problems, brain fog
6% – Dizziness or Lightheadedness
6% – Light, Sound, Touch sensitivity
6% – Body pain

*Other symptoms that only received endorsement from one participant: PEM flares, breathing difficulties, cough, stomach pain, reoccurring fevers, insomnia.

Severe impact on daily life

Many caregivers endorsed a severe impact on their child’s everyday life.

70.6% – Sever Impact: mostly bad days
23.5% – Moderate impact: a few bad days a week
8.8% – Minimal impact: a few bad days a month

Is your child getting better?

IMAGE: Long Covid recovery pie chart

47.1% – Symptoms have stayed about the same
41.2% – No, symptoms are getting worse and / or experiencing new symptoms
11.8% – Yes, symptoms are less severe and / or less frequent

New diagnosis since having COVID-19

29.4% – Dysautonomia: POTS, Orthostatic Hypotension, etc.
14.7% – Asthma
8.8% – Hypermobility or Hypermobile Ehlers Danlos Syndrome, hEDS*
8.8% – Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
2.9% – Allergies

*Hypermobility Spectrum Disorder (HSD) and hEDS is a life long, genetic syndrome but due to its high prevalent comorbidity with POTS and severe under diagnosis, many are finally receiving diagnosis.

Thank you to all of the families that participated in our survey, all of the Long Covid Advocacy groups who supported collection of this information, and all of the medical professionals who have taken the time to better understand this condition. We appreciate you!!!!