Is your child still feeling tired, dizzy, or foggy-headed months after having COVID-19? They might be dealing with a condition tied to dysautonomia, a disorder of the autonomic nervous system. Dysautonomia can cause a range of symptoms, including Orthostatic Intolerance (OI) and Postural Orthostatic Tachycardia Syndrome (POTS)—conditions that make it harder for the body to regulate blood flow and maintain balance, especially when standing.
These symptoms can significantly disrupt daily life, but they’re often misunderstood or overlooked. As doctors uncover more about how dysautonomia, OI, and POTS impact kids with Long COVID, many families remain unaware of these conditions and how to address them. Let’s explore what every parent should know to better support their child.
What Are Orthostatic Intolerance (OI) and POTS?
Orthostatic Intolerance (OI) happens when the body has trouble controlling blood flow and blood pressure when standing up. Normally, the nervous system makes sure blood keeps flowing to the brain, but in kids with OI, this doesn’t work right. Blood collects in the lower body, which can cause symptoms like:
Postural Orthostatic Tachycardia Syndrome (POTS) is a type of OI. It is diagnosed when a child’s heart rate goes up by 40 beats per minute or more within 10 minutes of standing, without their blood pressure dropping too much. The big jump in heart rate is what makes POTS different from other forms of OI.
Symptoms of POTS in kids include:
These symptoms can make it hard for children to participate in school, sports, or social activities, often leaving them feeling isolated and misunderstood.
Why Are OI and POTS Linked to Long COVID?
One study found that up to 71% of children with Long COVID experience some form of Orthostatic Intolerance (OI). But why does this happen?
Experts believe the COVID-19 virus might damage the autonomic nervous system, making it harder for the body to regulate blood flow when standing.
Another idea is that inflammation and problems with the immune system caused by COVID-19 might lead to these symptoms. No matter the cause, doctors are starting to see OI and POTS as common complications after a viral illness in children.
How Can Parents Help Kids Manage OI and POTS?
If your child has Orthostatic Intolerance (OI) or Postural Orthostatic Tachycardia Syndrome (POTS), there are ways to help them feel better. Every child is different, but these strategies can make a big difference.
helpful Getting enough water and salt can help the body manage blood flow better. This boosts blood volume and can reduce dizziness and fatigue.
đź’ˇ Tip: Electrolyte drinks can be helpful, but plain water with a pinch of salt works too.
Wearing compression socks or an abdominal binder can stop blood from pooling in the legs. This helps keep blood flowing to the brain, which can prevent dizziness or fainting.
Regular exercise can be tough for kids with POTS or Long COVID, but gentle movements can still help. Start with low-impact activities that won’t overwork their body. Working with a physical therapist knowledgeable about pediatric Long COVID and POTS can make a significant difference. They can create a tailored exercise program that gradually strengthens the cardiovascular system without overwhelming the body.
đź’ˇ Start small: Even short bursts of movement, like stretching for a few minutes or practicing gentle yoga poses, can be a good first step. These activities should always be guided by how your child feels, with plenty of rest breaks and no pressure to push through symptoms.
Many kids with Long COVID have exercise intolerance or post-exertional malaise (PEM). These conditions make it hard for their bodies to handle physical activity, even simple things like walking or climbing stairs.
Exercise intolerance means your child’s body has trouble with even small amounts of physical activity. During or after activity, they may feel: the body may have difficulty regulating heart rate, blood flow, and energy use, causing symptoms to appear immediately or shortly after exertion.
Everyday tasks like getting dressed or walking can leave them feeling wiped out. These symptoms may get better with rest but can come back if your child tries to do too much too soon.
đź’ˇ Tip: Pay attention to how your child feels during and immediately after activity. If they seem unusually tired or unwell, they may need more rest.
Post-exertional malaise (PEM) is a delayed worsening of symptoms that occurs after physical, mental, or emotional exertion. Unlike exercise intolerance, which happens during activity, PEM can appear hours or even days later and last for days or weeks.
Symptoms of PEM can include:
Even simple tasks, like doing homework, chatting with friends, or walking to the mailbox, can bring on PEM. Once it starts, your child will need plenty of rest and time to recover.
đź’ˇ Tip: Keep an activity log to track patterns and recognize triggers that may lead to PEM. This can help identify activitiesthat should be limited or adjusted to avoid flares.
PEM is the cardinal symptom of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a condition that is often associated with Long COVID. Understanding PEM is essential to supporting children with Long COVID effectively.
For more guidance on pacing, managing PEM, and other helpful resources, check out our Pacing Guide.
In some cases, doctors may recommend medications to help manage OI and POTS. These medications work by improving blood flow, controlling heart rate, and reducing dizziness.
Here are some common medications for POTS:
Medication | How It Works | Possible Side Effects |
---|---|---|
Ivabradine | Slows the heart rate | Fatigue, flashing lights (phosphenes) |
Metoprolol | Reduces heart rate spikes | Dizziness, fatigue |
Midodrine | Increases blood pressure | Tingling scalp, goosebumps |
Fludrocortisone | Helps the body keep salt and water | High blood pressure, low potassium |
Your child’s doctor will decide if medication is appropriate.
If your child experiences persistent symptoms like dizziness, fatigue, or fainting when standing, it’s important to consult a healthcare provider. These symptoms are not something your child can “push through” — they are physical and require medical attention.
Look for a pediatric neurologist or cardiologist who specialize in dysautonomia or a clinic that understands Long COVID in children. For a community-recommended list of pediatric Long COVID providers, visit this link.
Caring for a child with Long COVID can be exhausting and overwhelming, especially when symptoms like OI and POTS make everyday life more difficult. But you’re not alone.
Long Covid Families is a U.S.-based organization that supports families navigating Long COVID in children. They offer resources, advocacy, and a community of parents who understand what you’re going through.
Visit www.longcovidfamilies.org for more information, resources, and support.
This blog is for informational purposes only and is not a substitute for medical advice. Always consult a healthcare provider before making any changes to your child’s treatment plan.
© 2024 Long Covid Families. All rights reserved.
Long Covid Families is a 501(c)(3) nonprofit organization. EIN #87-4017934
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