Talking with your child’s provider about Long COVID

from LONG COVID ESSENTIALS
a resources series by The Sick Times x Long COVID Justice

Tips for talking to your child’s provider about Long COVID symptoms

Long COVID is a chronic condition that occurs after a SARS-CoV-2 infection and is present for at least three months. It includes a range of symptoms or conditions that may improve, worsen or be ongoing. Children can develop Long COVID, too.

If you think your child has Long COVID: Talk to your child’s provider

Right now, there is no cure. However, there are some medications and strategies that may help ease your child’s symptoms. Your child’s doctors can alert you to new treatments. They should also educate themselves and you about symptom management.

Other potential Long COVID symptoms:

  • Difficulty completing schoolwork
  • Difficulty being active or playing
  • Difficulty getting up or doing things in the morning
  • Feeling isolated and misunderstood
  • New sensitivities to certain foods
  • Not wanting or being able to attend school or family activities

Children and young people may not have the language to explain how they’re feeling. Therefore, they may explain their symptoms differently. Children may not understand that their Long COVID symptoms aren’t a usual part of development.

How children may describe symptoms:

  • “My legs feel heavy,” explaining fatigue. 
  • “I don’t want to go to school,” explaining post-exertional malaise. 
  • “I don’t want to get out of bed,” explaining fatigue.
  • “My head hurts,” explaining brain fog or headache. 
  • “I can’t breathe,” describing tachycardia or rapid heartbeat. 
  • “I don’t want to eat that. It’s gross,” describing a change in taste or smell. 
  • “I can’t do it,” explaining cognitive dysfunction with school work. 
  • “My throat hurts,” This can indicate pain in the neck or head, meaning a migraine. 
  • “It’s hard to walk up the stairs,” indicating POTS or dysautonomia.

1-2 weeks before the appointment:

Start a journal and try to update it at the same time every single day – learn more in our resource on tracking symptoms. 

If known, write down the dates of when your child had COVID-19. You should also list out:

  • Your child’s COVID-19 symptoms:
    • What were they?
    • How long did they last?
    • How did your child act?
  • When did your child’s Long COVID symptoms begin?
    • What are they? 
    • How long do they last? 
    • Are the symptoms constant or fluctuating? 
    • How does your child act?
    • Do they worsen after school, activity, or after doing homework?
      Be as specific as you can.
  • Is your child still able to attend school, family events, sports, and other activities? Are they cognitively alert or drained afterward? 
  • How has their life changed? Are they still able to engage in hobbies and activities they used to enjoy before their COVID-19 case? 
  • Make a list of all the medications your child is taking, why they are taking it, and what they find helpful or not helpful for their symptoms.

During the appointment:

Bring your journal. If your provider is dismissive, you can ask to be seen by another medical provider.

  • Explain how this is affecting your child — be honest!
  • Make sure your child’s provider is clear about what the next steps are.
  • Ask questions: What medications or symptom management strategies might help my child? What activities should they avoid? 
  • Ask for a summary of the appointment and ask your provider to write down instructions.
  • Ask for your health care provider’s support regarding your child’s school, family and other activities. 
  • Consider seeing a functional medicine provider.
  • Ask for a referral to a Long COVID clinic. Pediatric clinics are rare but some adult clinics may be able to help.

After the appointment:

  • Follow the provider’s directions, but watch out for anything that does not help your child.
  • Continue to track their symptoms.
  • If something is not helping, contact your health care provider.
  • Remember: There is still a lot we don’t understand about Long COVID.
  • Be patient and listen to your child.
  • If you still have questions, make another appointment with your child’s doctor or ask for a second opinion.

Resources

Writer: Emma Smith • Editor: Betsy Ladyzhets • Medical reviewer: Dr. Lee Hinnant

Printable version of this resource page

Additional resources & info

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Notes

  • This series was published in fall 2024; some information may be subject to change.
  • Although each topic has been reviewed by medical professionals, they are informational resources, not medical advice. Always talk to your medical providers before trying treatments or symptom management strategies. 
  • Each resource page offers brief information and is not comprehensive. We know there is much more information on each topic we cover, and that there are additional topics not yet addressed in this series.