They say that “Those who fail to plan, plan to fail” - insert eye roll.
I am fairly certain this well-known phrase was not referring to planning for your child’s doctor's appointment during a global pandemic, but yet, these are words that I have found to be true while dealing with Long COVID, or Post COVID conditions and medical care. Often Long Hauler’s have a wide range of seemingly unrelated, vague complaints that can easily overwhelm even the most seasoned specialist. As both a COVID Long Hauler and experience expert, I have put together some tips that may help your next pediatric COVID appointment go more smoothly. Whether you type your list or it’s neatly handwritten, the goal is to organize your thoughts, communicate the problem, and find solutions.
The Long Covid Kids Study
Using the PeopleWith App can really help. By logging symptoms daily you will always have a complete record of the relapsing and remitting symptoms that can be so hard to remember on the spot. The app is free and provides a report that can be sent to anyone you choose.
When you first log in to PeopleWith, select the diagnosis 'Long Covid Kids Wellbeing' and the data you input will anonymously be included in The Long Covid Kids Study, that helps understand Long Covid in children. All the data remains the property or the user, and can not be traced back to the user, which means we can all learn more about Long Covid. The app can even make recommendations for people with the same health profile as you. Check it out.
1. Define your goal for the appointment.
This can be helpful for both primary care doctors and specialists. What are you hoping to achieve with this ONE appointment? Yes - “I just want my child to feel better” is very true, but I typically pick the one thing that is the most troubling. Try to keep it focused and brief. If you can only get ONE thing from this appointment, what would it be.
EXAMPLE PURPOSE To discuss why my child is complaining of feeling dizzy. I would like to find solutions and explore causes.
2. How does this affect your child's everyday life?
It is important for doctors to understand the level at which this is interfering with your child’s ability to function and/or quality of life. Is it keeping them up at night? Have they not been able to play with their toys, their friends, do sports, or attend a full day of school? Are they having a difficult time finishing their meals? Basically why is the symptom or condition worrying you. EXAMPLE DAILY IMPACT My child is unable to play basketball and play with friends like they used to. They need to sit often and hold on to things to keep stable.
3. What previous diagnosis or other symptoms does your child have?
The goal is to keep this all to ONE page that the doctor can briefly review before they start to ask questions. If your child has many symptoms and you are seeing a specialist that only deals with one area, you may consider a second sheet with all of the symptoms that you feel is less related to their specialty listed so that the doctor can glance at them AFTER they digest the main information. It is important that they understand the problem holistically, but the goal is to not be overwhelming.
4. Medical References
I am pretty sure doctors don’t love this, but with new or less common conditions, I like to keep with me a couple of different printouts in case the professional is not up-to-date. Make sure your sources are well respected.
Printouts for Doctors: AAP: Post-COVID-19 Conditions in Children and Adolescents https://www.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/clinical-guidance/post-covid-19-conditions-in-children-and-adolescents/ CDC: Evaluating and Caring for Patients with Post-COVID Conditions: Interim Guidance https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-assessment-testing.html
CDC: Management of Post-COVID Conditions https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-management.html
EXAMPLE DOC:
By Erica Hayes
3rd November 2021
LongCovidKids.org is a UK based international charity supporting and advocating for families, children and young people living with Long Covid. Our story started with a short film on the long-lasting symptoms of Covid in children.
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