Your Child Was Just Diagnosed with Kawasaki Disease — What Happens Now?

Supportive. Reassuring. Action-oriented. This guide is meant for families facing a diagnosis of Kawasaki disease. It’s not a substitute for medical advice — always follow your child’s healthcare team — but it will help you understand what lies ahead, ask the right questions, and feel a bit more in control.

Why This Matters Now

If your child has just been diagnosed with Kawasaki disease, you’re likely experiencing a torrent of emotions: shock, fear, confusion, and maybe even relief that you finally have a name for what’s going on. Kawasaki disease causes inflammation of blood vessels, and most importantly, it can affect the arteries that supply the heart. The good news: when identified early and treated appropriately, many children recover fully. What you do now — alongside your medical team — can make a difference.

Step-by-Step: What to Expect in the Days & Weeks Ahead

1. Hospital Admission & Immediate Treatment

• Most children with Kawasaki disease will be admitted to hospital for monitoring and first-line treatment.

• The standard initial therapy is a high-dose infusion of IV immunoglobulin (IVIG) and often aspirin.

• The goal is to lower fever, reduce inflammation in the vessels, and prevent heart complications (especially coronary artery aneurysms).

• If your child’s fever persists 36-48 hours after initial treatment, additional therapy may be required.

2. Monitoring for Heart-Related Effects

• An echocardiogram (ultrasound of the heart) and EKG/electrocardiogram are typical parts of the treatment plan to check for heart or artery involvement.

• If the heart arteries are dilated or aneurysms present, your child may need follow-up cardiology care, sometimes for months or years.

3. Going Home & Early Recovery

Once your child is stable (fever gone, inflammation controlled, able to eat and drink) the discharge will follow. But recovery continues:

• You may still have medications (e.g., low-dose aspirin) to take at home for a period of time.

• Follow-up appointments with your pediatrician and cardiologist will be scheduled — often at 2 weeks, 6–8 weeks, and sometimes beyond depending on heart effects.

• Watch for warning signs: returning fever, lethargy, breathing trouble, or signs of clotting/bleeding if your child is on aspirin.

4. The Medium & Long-Term Picture

• If your child had no heart artery involvement, long-term outlook is excellent; follow-up may be less frequent.

• If there was coronary artery involvement: lifetime monitoring may be needed. Lifestyle factors (heart-healthy diet, exercise, avoiding smoking in future) become important.

Practical Tips: What You Can Do Right Now

• Keep a symptom, medication, and appointment log. You will be juggling a lot.

• Ask your child’s care team:

  • “What medications will we be using and why?”

  • “When is our next echocardiogram or cardiology check?”

  • “What should we watch for at home?”

• Ensure your child gets plenty of fluids, rest, and comfort. Their body is recovering.

• Accept help: meals, rides, support — you don’t have to do this alone.

• Plan for siblings and other routines: school, childcare, family dynamics will shift.

• Begin gentle conversations about what’s happening with your child as appropriate (age-wise). Nervousness and questions are normal.

• Capture the story: a journal or photo log might be helpful later (for you, for your child, for sharing).

Important Questions to Ask Your Child’s Medical Team

• How severe is my child’s condition?

• Have any heart arteries been affected? What did the echocardiogram show?

• What medications will my child be on, for how long, and what are the side-effects?

• When and how often will follow-up cardiology visits happen?

• When can my child resume normal activities (school, play, sports)?

• What signs should prompt me to call immediately (fever, chest pain, breathing trouble)?

• Are there support groups or resources for families?

Common Myths & What’s Actually True

• Myth: “Kawasaki disease is contagious.” — False. Cause is unknown; it’s not spread from person to person.

• Myth: “If my child recovers, no more heart concerns ever.” — Not always. Even after recovery, children with artery involvement need long-term follow-up.

How the Kawasaki Kids Foundation Can Help

At the Kawasaki Kids Foundation, we aim to be your compass and your community:

• You’ll find stories of other families who’ve been where you are.

• A podcast with doctors, survivors, and parents sharing their journey.

• Regular blog posts, news, and events to keep you connected and informed.

• Ways to engage, ask questions, share your story, and support others. Because while medical care is essential, the emotional and community dimension matters just as much.

Final Thought

Your baby has just been handed a name for their illness. That may feel overwhelming — but you’re taking the first step toward moving forward. You do not have to navigate this alone. With prompt treatment, a strong medical team, your courage, and a supportive community behind you, there is hope.

Keep track. Ask the right questions. Accept support. And lean in to the fact that every heartbeat counts — and yours does too.

You’re doing the right thing just by reading this. Keep going. We’re with you.