Long QT Syndrome in Children

Maybe your child was born with long QT syndrome (congenital) or perhaps a medication caused it (acquired). All forms of LQTS are considered a sudden arrhythmic death syndrome.

It’s also important to understand that LQTS affects people differently. You might not have known your child had it until they or someone in your family experienced a sudden, life-threatening event, or until their pediatric provider discovered it through routine testing.

What to expect at your first visit

At your child’s first appointment, their pediatric provider will ask:

• Have they had any symptoms?
• When did the symptoms start?
• What medications do they take?
• Have you been diagnosed with any other health conditions?
• Has anyone in your family passed away suddenly or unexpectedly?
• Does anyone in your family have LQTS or another heart condition?

Then they’ll do a physical exam, which includes listening to your child’s heart and measuring their pulse. They may also order other tests, like:

• Electrocardiogram (ECG or EKG): This test measures how long it takes for your child's heart to recharge after a heartbeat. This timeframe is called the QT interval.
• Exercise stress test: For this test, your child will walk on a treadmill or pedal a stationary bike while hooked up to an EKG machine. It measures how well their heart responds to physical activity.
• Echocardiogram (Echo): This ultrasound of your child's heart measures how well their heart’s pumping.
• Ambulatory monitor: This device records your child's heart’s electrical activity over longer periods of time. You can take it home with you, and your child can wear it for days, weeks, even years.
• Genetic (DNA) testing: This test can find changes in the genes, chromosomes or proteins in your child's body to tell if you have a genetic (inherited) condition.

These tests can help rule out other conditions and confirm a LQTS diagnosis. They also help us learn if your child’s LQTS is genetic or acquired. All of this information guides your child’s treatment plan.

Meet Our LQTS Team

We work as a team at Cleveland Clinic Children's to give you the most personalized and comprehensive care. Your team could include:

• Pediatric cardiologists
• Pediatric electrophysiologists
• Pediatric cardiac surgeons
• Pediatric nurse practitioners
• Pediatric nurses
• Pediatric genetic counselors.
• Pediatric psychologists.
• Pediatric cardiac device specialists

These pediatric providers work together to craft the best treatment plan for your child. And they meet regularly to go over their progress and adjust treatment as needed. You’re also an important member of our team. We’ll include you in every decision about your child’s care.

Cleveland Clinic Children’s treats children of all ages with congenital or acquired LQTS. We build a treatment plan using the latest evidence-based practices. Your child’s plan may include:

Lifestyle changes

LQTS can affect different parts of your child’s everyday life. You’ll need to check with your child’s pediatric provider before they do certain things. We recommend keeping your child hydrated and having them avoid certain “triggers.” Your child’s provider will go over specific lifestyle changes with you at their appointment. Our goal is to keep your child doing the things they love, safely, with LQTS.

Medications

Beta-blockers can keep your child’s heart from beating too fast if they’re physically or emotionally stressed. Certain medications can prolong the QT interval. If possible, we may recommend having your child avoid these medications. If they can’t be stopped, we’ll keep a close eye on your child while they continue taking them. We’ll explain all of this during your child’s appointment.

Cardiac devices

Your child's pediatric provider may recommend a cardiac device to help regulate their heart rhythm. We implant a full range of pacemakers, implantable cardioverter defibrillators (ICDs) and loop recorders and do more than 50,000 device checks a year in person and remotely. Your child's care team will go over cardiac device options with you.

Surgery

We only rarely treat LQTS with surgery. In most cases, we do it when the condition hasn’t responded to other treatments. Left cardiac sympathetic denervation (LCSD) surgery, or sympathectomy, detaches the nerves that cause dangerous heart rhythms and helps your child’s heart keep a steady pace.

Taking the Next Step

Facing a chronic (lifelong) heart condition like long QT syndrome can affect every part of your child’s life. They’ll need to commit to regular care and management, so it’s important to have the right team by their side. Cleveland Clinic Children’s has providers dedicated to treating heart conditions in children like LQTS. We’re here to support your child, and you, through this journey and find ways to reduce their symptoms and risk of complications. We want you and your child to feel confident about moving forward in everyday life.